No end in sight except heaven...

It felt like a victory!

2011-09-22T12:48:00.000-07:00

Her name was Galadriel The Fair.

Anyone with a knowledge of Tolkien would know the name. We called her Galadie for short. She came into my familie's life on a snowy New Year's Eve years ago, as my third daughter and her friend watched and assisted in the birth of a litter of Golden Retriever puppies. Chloe, the mom, was patient and willing as the two young girls comforted her and gently tied colored ribbons around her pup's necks. My daughter, who I affectionately call "My Little Dog Whisperer", had already chosen Galadie, the runt, as her own.

When she was old enough, Galadie, came to live at my house. She loved my family, my big back yard, chasing balls, and she loved water. "My Little Dog Whisperer" loved her most. Galadie was hers.

And all was fine, until my son got sick with cancer. Then life became chaotic, my home was full of stress and intense emotion. Slowly Galadie became more and more territorial. She took on the role of protector and began aggresively going after people who came to my house. One day, she ran after my neighbor nearly biting him. This was the last straw. Too overwhelmed with my son's care, I had to find her a new home. So I called the Golden Retriever Association.

I'll never forget standing in our driveway as we each took turns saying good-bye to Galadie. The tears were streaming down all of our faces and my heart was breaking especially for my third daughter. And I watched her grieve for her Galadie for a year. Her loss was real and palapable. And I was angry. Here was one more thing that damned cancer had stolen from us, I thought. Another loss to grieve.

Galadie was placed in a foster home for a while and then eventually adopted by a couple who lived on property north of Astoria. Over the years "My Little Dog Whisperer" would talk about going to visit her. But it just never seemed to happen.

But just a couple weeks ago, as she and I were planning her trip back to college, she asked me if we could stop on our drive up north to visit Galadie! I hadn't realized she was still in touch with Galadie's new owners! In fact, they were Facebook friends!

And so on a rainy, dark day, we took the scenic route north and stopped at a warm, dog loving home in Naselle, Washington. There we were reunited with Galadie. It had been six years. She had been renamed Sophie, and her Golden Retriever friend, Nellie, was just as eager to see us.

She was clearly well loved by Chuck and Jan as they showed us pictures of her swimming and jumping into Priest Lake in Idaho. They showed us the creek in their yard she would swim and play in. They shared with us their travels back east with Nellie and Sophie. Always staying at Motel 6 because they are dog friendly. They talked about her recent knee surgery and how they searched out the best vet going all the way to Spokane. And how they'd put in a doggie door and ramp just for her while she was convalescing.

And as I listened to their stories and looked into Galadie's now grey face and watched "My Little Dog Whisperer's" face shine, I realized she hadn't been stolen from us at all. She had been a gift to a wonderful couple and a companion to their dog Nellie.

That damned cancer hadn't won after all!

It felt like a victory!

Arthur Fights the Dragon

2011-08-14T15:04:00.000-07:00

Recently, I was asked to speak at a fundraiser representing Northwest Sarcoma Foundation. The fundraiser was for a 22 month old little boy, Arthur, diagnosed with Ewings Sarcoma. The community had come out in force to support him and his family. It was great to see.

Here is what I said:

Thank you one and all for being here today. What a great way to show your love and support to the B Family. I know they are grateful for each one of you.

My name is April Brenneman and it is an honor for me to be here with you this afternoon. I am a mom with 5 wonderful children and I have one grandson who is 2 1/2 years old. He calls me Mi Maw. And Pop Pop, my husband, and I have been married for almost 30 years. I volunteer for 3 childhood cancer organizations. One of them is Northwest Sarcoma Foundation and that's how I came to be here today. Melissa Hill, the Executive Director, and my good friend, asked me if I would be willing to speak to you all at this special event, Arthur Fights the Dragon.

And what a perfect title that is because Sarcoma is a Dragon. The Dragonslayer is a NWSF walking/biking event put on in Seattle and Portland each year. And that is why we are here today, to help slay the dragon called sarcoma and to help encourage, support, love and bring hope to the B Family.

In October 2004, I was just an ordinary mom living an ordinary life, when the dragon came knocking at my door. My youngest child and only son began walking bent over holding his head to one side like an old man. After a week of visiting various doctors and physical therapists, we ended up in the ER at Emanuel Children's Hospital late one night. Josh was in extreme pain. An x-ray exposed a tumor. Josh was diagnosed with Ewings Sarcoma. Like Arthur the tumor was in an unusual place for Ewings. For Josh it was in his c-6 neck vertebra. Like Arthur he was younger than the typical age of a Ewings Sarcoma victim. Josh was 4 years old. Like Arthur the suffering has been great and it's been the most difficult journey I, as a human being, as a mother, have ever had to face. There is nothing so terrible as watching your child suffer.

Joshua endured 14 rounds of intense chemotherapy. Did you know they give children stronger more intense chemo than they do adults? It's because their little bodies are young and fresh and can take more than an adult's body can. I was appalled to learn that the Ewings Sarcoma treatment protocol is the same one they have used since the early 1980s. There have been no new discoveries. No new drugs. Sarcomas are considered rare and are called orphan diseases therefore they do not get much research money. That is why I began to volunteer for NWSF, to bring awareness of sarcomas to the public, to educate, to raise research money, but most of all to support those patients and families who have to fight the dragon.

Josh's tumor was inoperable and during his chemotherapy he also had 31 proton radiation treatments in order to get "local control". All of this took about a year of being in and out of the hospital constantly. We'd be in-patient for 5 days of chemotherapy, then go home. Most often Josh would get sick with a fever, called neutropenic, and we'd go back to the hospital for antibiotics. When he got better, we'd go home and a couple days later it was time to go back into the hospital for the next round of 3 days of chemotherapy. That year was emotional, exhausting and very dark. I was in shock, overwhelmed with fear and anger. My four daughters were also deeply impacted as they watched their little brother struggle through treatment.

Once treatment was finished, we began to discover the damage done to his body by the radiation. Josh's throat was constricted and he could not eat by mouth for almost 2 years. Like Arthur he was given a g-tube and fed through that tube. His trachea or airway was also constricted and after two weeks of no sleep and calling 911 because his breathing had become so alarming, he was finally given a tracheotomy so he could breath. A tracheotomy is a hole in his neck that goes into to his airway and allows him to breathe through the hole instead of his nose and mouth. We also discovered his thyroid no longer functions and he takes thyroid medication. We then began giving him esophageal dilations about every 6-8 weeks. This is a sedated day procedure where his throat was stretched open at the narrowed point. After 38 of these procedures his throat has remained open and Josh is able to eat by mouth! Thank you God! We had his g-tube removed and Josh loves showing everyone the scar which he says is his second belly button.

This very month, August 2011, Josh is celebrating being 6 years cancer FREE! He is 11 years old, loves pizza, is a green belt in TaeKwonDo, plays airsoft and video games with his buddies and enjoys making obnoxious noises, you know...the kind of noises boys love, through the hole in his neck when he takes out his trach tube! His buddies think it's cool! And though he cannot swim with a tracheotomy and cannot play contact sports because of his weakened neck vertebra, he is a happy, healthy and sweet, well most of the time.

We've been on this journey for 7 years now. We have been forever changed as individuals and as a family. It has been painful yet joyful, full of heartache and laughter. We have seen people, even strangers reach out to us with love and hope in the most incredible ways. They have been the hands and feet of Jesus to us. We have been surrounded by a great team of professionals: doctors, nurses, Childlife workers, art and music therapists. We have met courageous children like Arthur, who touch our lives deeply and change us. We have met amazing families full of hope and strength. Sadly, we have had to say good-bye to children we've met along the way. And each time we grieve we discover sorrow and joy walk hand in hand. Heartache and happiness dance side by side.

Josh is a miracle, Josh is a survivor and in many ways, Josh is older than his age, because of what he's faced in his young life. Recently, he made the decision to begin taking growth hormones because he tested GH deficient and was not growing as well as his peers. This decision was not made lightly as he knows GH make everything grow, even cancer. He is a brave boy and continues to face the dragon head on, but he does not fight alone.

And Arthur is not fighting the dragon alone either. As I look around at all of you here, I know Arthur is not alone. You are here for Arthur for his family. You are holding them up when they are weak. You are praying for them when they can no longer pray. You are giving them your LOVE, your HOPE and your FAITH. These are the greatest weapons of all when fighting dragons.

Thank you.

Vulnerability...

2011-07-27T09:20:00.000-07:00

I made myself vulnerable again. Vulnerable to pain and possible loss. And I asked myself, is that wise?
I invited a mother and her two young boys over for an afternoon visit. We had met on Facebook on the Ewings Sarcoma Survivor page. When I discovered they lived close by, I invited them over. Slim, beautiful and young, her mother's heart was equally as lovely. And the boys were playful, liked Legos and dogs and snacked on Goldfish. She shared her story. I listened and shared a little too. We talked of our faiths, how hers strengthened through sarcoma and how mine wavered a little finally settling down to nice solidness.

And when they left, I thought I was fine, but I wasn't. And through tears I asked myself, is it wise to allow someone in? Someone whose little life and his mothers and brothers and fathers life bring the recognition of a shared pain and the possibility of death? Am I meeting another Lesly or another Gage?

And then the sermon this morning on Acts 11 confirmed it. "Invest yourself in the lives of others." The others being those put in your world and my world includes childhood cancer. I have no choice here. It's reality. Jesus calls me to love. It's my mission.

And it came to me, Jesus became vulnerable. Jesus had a mission.

And with my vulnerability comes my mission and it's called: And Jesus Wept.

John 11:35.

So I went further into my vulnerability and had this young family over along with a family visiting from Arizona. Another Ewings Sarcoma survivor family. Both boys have lost parts of their bodies. Both boys are full of strength, energy and life. Both boys have endured so much.

We painted together at C.H.A..P. They jumped on our trampoline. Slid down the Tree House slide. We ate and drank and laughed and got teary eyed. We marveled at our survivors.

The vulnerability was there, but so was something else...

Vulnerability...gratefulness...strength...an inseparable bond like no other...

Another sighting...

2011-06-17T14:38:00.000-07:00

It has happened twice now and I've blogged about it before. Each time it's happened I've been stunned, almost to the point of holding my breath. Then emotion overwhelms me. But this time, after the moment passed, I felt joy and comfort.

The first time I saw Lesly Foster. (I wrote about it from my posting titled "Out of the clear blue..." dated August 2010.)

This time I saw Danny Keagbine. We were in a Seattle hotel. Standing in the lobby, I looked up as an elevator door opened. And there he was, Danny with his bald head and glasses. He was built like Danny. He had pale skin like Danny and he had freckles like Danny. I stared. Josh and his dad stared. And then he smiled at us, that Danny smile. We were frozen, the three of us, until the elevator doors closed. As if the spell were broken, we looked at each other and said, "Danny."

I shared this story with Danny's mother. She felt comforted by the "vision" of her son. Then she told me the night before she got my message, she'd dreamed about me and my children. We were in the Day Treatment Unit of the hospital.

Interesting.

This sighting wasn't as painful as the first.

This time I realized it was like a gift.

The gift of a sighting...

Maggie May...

2011-05-26T16:20:00.000-07:00

I hadn't thought of her in a long time. A dear little girl who died of a rare leukemia early on in Josh's treatment. Too young for Make-a-Wish, CCA planned a visit for the family to Rod Stewart's private home. You see, Maggie May was named after his famous song.

And on a regular day, I ran to TaeKwonDo with my grandson to pick up Josh. As we were leaving, a grandmother and mother approached me.

"We know Josh!" they exclaimed.

"You do?" I questioned back not recognizing their faces.

"I'm Maggie May's grandmother" the older woman stated.

"Oh" I sighed, "Maggie May."

Emotion engulfed me.

Immediately I was back in the hospital hallway standing with a family who were visiting. They chatted away, but I didn't hear a word. Transfixed and frozen, I watched Maggie May's mom push her stroller all around the pediatric floor. Maggie's bald head and round face smiling up at all the nurses. I knew she was saying good-bye. I knew her treatment had been stopped, because it hadn't worked. Maggie May was dying. The family visiting us were oblivious to the tears and powerful drama playing out just a few feet away at the nurses station.

"How are Maggie's parents now?" I asked the grandma and aunt.

"They are divorced. They both remarried and have started new families" answered the grandma.

"They are happy, though" the aunt added. "And doing well."

"It sure is good to see Josh" continued the grandma and they both smiled.

"It's good to see the ones who have made it" the grandma said next, but her voice caught a little.

Maggie May...

Falling down a mountain...

2011-05-11T20:26:00.000-07:00

On a sun drenched Saturday I climbed up a snow covered mountain to 8900 feet with my Summit Sisters. We studied the climbing route, ant-like dots of people striving for the pinnacle. I absorbed the view encircling me, which mere words cannot begin to describe, allowing its beauty to fill my soul.

Later our summit guide had us practice "falling" down the mountain with our ice axes. Sometimes called "self rescue" the ice axe is a mountain climbers tool to save themselves from sliding down a steep mountain face. We first practiced "falling" sitting down.

Slide, self arrest, stop. Easy.

Next we tried it on our stomachs head first. No problem.

Finally on our backs headfirst. Fail.

I attempted it four times and finally one of my Summit Sisters assisted by flipping my legs up, over and around. Embarrassing.

It just didn't feel intuitive to me, as if there was a gap between my right and left brain. I couldn't even seem to visualize how to bend and flip my legs around to the right position. It felt awkward. I couldn't do it without help. Once she helped me, I was able to get the feel of it.

There are parts of mountain climbing I love and there are parts of it I fear. That's why I climb. The love part is easy. The fear part is complicated. I don't like heights and steep mountain faces bring that out. I know the feeling of severe vertical exposure. Shaky legs, dizziness, and nausea usually show up. And the terror can take over my mind, if I let it. I pull inside myself. I focus on each step. I think of all the children I know fighting cancer and those who are gone. I think of what they've suffered. This helps, but doesn't extinguish it completely. Sometimes I enjoy the summit more after I'm safely down the mountain. Fear is a powerful emotion.

Through counseling I've come to the understanding I've been fearful all my life. It was an "ah ha" moment for me. Everything seemed to come together like puzzle pieces. And in that flash I understood myself in a way I never had before. Fear and anxiety were how I learned to survive. It became my coping technique and as my counselor pointed out, it worked... until now.

Much of the fear I learned concerned God and the spiritual world. Fear of not having enough faith. Fear of "opening the door to Satan " whether by accident or willingly. Fear of not reading my Bible enough. Fear of not praying enough. Fear of trusting or not trusting. Fear of letting my guard down. Fear of not repenting enough. Fear that I might be crazy. And in that "ah ha" instant I found out, I am not crazy. There is nothing wrong with me.

God gave me coping skills to keep me strong when I needed to be strong. But now I can let go. I need to learn to trust Him. Acceptance is huge. And when that fear overwhelms me, I allow myself to feel it. I acknowledge it by giving it a nod, but I don't fear the fear. Then I smile, because I know deep inside I'm ok. I am loved by my Creator. He wants me. He's with me...always.

Mountain climbing has a way of connecting us to our spiritual lives. I might not feel the intuitiveness of "self arrest" as I slide head first on my back down a mountain, but I can "fall" down a mountain with Him...

Let's get dirty...

2011-04-17T23:07:00.000-07:00

Recently, I went to the Faith & Culture Writing Conference. Art was the focus, and specifically writing as an art form in our culture and faith. Have you ever listened to someone share only to feel as if he/she was putting words to your own heart? At one point, my excitement got so real, I bit my lip fearing I'd shout "Amen!" from the back of the room where I sat nodding my head up and down in agreement like a bobble-head doll. I also blinked back tears as my spirit resonated with the speaker's words.

Dr. Brad Harper, a confessed art lover, and professor at Multnomah University, talked about art in our time. He shared a little American history explaining how the 20th Century saw the start of doubt pertaining to the Bible, its validity and Christianity. America began moving towards rationalism which began to be reflected in our art, which in turn reflected our culture. And the conservative Christian's response was to separate from the mainstream and create its own sub-culture. We felt art was "worldly" and therefore; if we were good Christians, we must have nothing to do with film, music, theater, and other forms of art.

In the 50's, my mom and my parents-in-law experienced this as they grew up in the Evangelical church where rock music, dancing, and movies were all forbidden. Ungodly activities, don't ya know! Later our sub-culture created its own music and art. We ended up with Christian music, Christian art, Christian movies further extricating us from the secular culture. Sadly, this created an "us and them" mentality. And in so doing "we lost the awareness of the image of God in ALL people whether or not they follow Jesus", said Harper. We then took ideas and sounds that were popular in the secular culture and tweaked them a little, so they could be called "Christian". Dr Harper called this "baptizing the secular". From there we created cliché's and tongue in cheek bumper stickers, Christian trinkets and memorabilia, all of which trivialize Jesus, in Harper's opinion. Christian merchandise sold for profit in which Jesus is marketed. Is the world interested in a marketed trivial Jesus?

And out of this disconnect came idealistic Christian art void of suffering. And escapist theology grew strong. We American Christians don't believe in suffering, at least not here in America. This "Christian nation" where we have been blessed by God, this land of plenty, where we have special rights especially as American Christians could not and should not suffer. God will allow us to escape if we follow His plan. If we have enough faith. If we just follow the godly Biblical formula. And this was mirrored in our Christian art, music and film. Then Harper talked about the nostalgia we see in our sub-culture today for the past. The desire to go back to that wonderful time when prayer and the Bible were in the public school system. Back to the 50's or earlier. His point: yes, that time might have been better, but only if you were a white American!

I once walked in step with this idealist, escapist belief system and in fact, raised my children for years with this God in a box agenda. I homeschooled my children keeping them from the world teaching them from "godly" textbooks. We watched only moral movies. We listened exclusively to Christian music by Christian artists. If we looked at pictures of the great works of art like Michelangelo's David, it was after I had strategically placed a sticky note over indecent body parts. We separated ourselves from the non-Christian world which meant our neighbors, not realizing God was there too. Somehow, as I read to my children from the Bible each morning, I didn't grasp how Jesus surrounded himself in the culture of his day. He hung out with the marginalized, he ministered to the lowly and he grew angry with the religious. You could say, Jesus got dirty. And why did I follow after this system? I think it was out of fear, out of a desire to protect, and wanting to keep my babies safe, making sure they never got dirty.

Please do not get the idea that I am bashing homeschooling or suggesting we not monitor what our children read and view. Homeschooling is a good form of educating a child, however be careful not to insulate them from their own culture. Certainly the age of the child is a factor, but most importantly, there is balance. One of my daughters commented on this when she expressed a real disconnect from her peers after entering college. As the topic moved to TV shows and commercials, she was left out of the discussions. It wasn't about not "fitting in", it was about her not being able to engage. Yes, TV shows and commercials on the outset seem non-important, but they reflect our culture and thus she was unable to connect in that culture. And when I speak of balance, I recall a conversation with a young Christian woman who shared with me, as we discussed great literature, how she wouldn't read The Scarlet Letter by Nathaniel Hawthorne because it was about adultery and an illegitimate child. When I reminded her adultery and illegitimate children are a reality of our world, she said she knew, but didn't want to read about it because it wasn't good. I almost warned her not to read the Bible either, but I bit my tongue. In my opinion, she is trying to avoid the suffering reality of our world, not to mention missing out on a great piece of literature. Jesus on the other hand, was immersed in his suffering culture thus allowing him to speak into his society. He broke the rules. He got dirty.

I first started struggling with this Christian sub-culture and my faith when I was told my son had cancer. Getting through treatment was extremely difficult and survivorship continues to be challenging. I noticed my escapist theology just didn't fit my life anymore. As childhood cancer impacted all my children and even my marriage the "godly formulas" no longer worked. And as the years evolved and my emotions began gradually healing and my spirituality grew, I discovered Jesus, the real non-trivialized, non-marketed Jesus. He was there all along deep in the depths of my suffering. He wept with me. He gave no trite comments. He got dirty as he walked along side me. He understood, above all others; what suffering means. Dr. Harper's speech seemed to connect all the dots for me. He painted the picture of my journey. And that is why his words brought tears to my eyes.

My challenge to myself and encouragement to you: Let's engage the world. Let's live in it and create art that reflects the pain and suffering we see around us, if only we dare open our eyes. As the saying goes, "Let's be real!"

My second daughter has battled depression. Another impact of childhood cancer born out of watching her little brother suffer and other children with cancer die. She's an art major and has just completed her senior art project which was an art performance titled: "Partial Effects of a Lowercase c" . We were privileged to watch her perform it. It portrayed depression as she has experienced it. An art performance for a senior art project had never before been done in the history of her Christian liberal arts school's art program. Depression can be a taboo subject in the conservative Christian sub-culture. After all, it's implied, Christians should never feel depressed. I am proud of my daughter bravely exposing hidden pain and engaging the world through her art. She's getting dirty.

Do not be afraid to suffer for you will suffer. And when you do you will find Jesus but only if you unwrap the bonds of fear of the world entangled around your heart. As Dr. Harper so beautifully said, "Jesus has called us to engage the world not escape it."

So let's get dirty!

Living with grief...

2011-03-27T16:13:00.001-07:00

We walk through life not knowing when grief will hit us.

But it will.

After all, "Jesus wept."

Sometimes we don't even know it's there.

Grief comes in all shapes and sizes.

A lost dream...

A lost career...

A lost relationship...

Lost health...

The death of someone we love...

Someone we needed...

I just finished a 5 week class titled "Grief Release".

I learned I've been doing some things right as I've grieved over these last 6 years.

I discovered past losses I still need to process.

I was able to say good-bye to my family before childhood cancer.

Accepting my family now...

and what is...

I gained important tools to help me for future losses.

I discovered how to stay strong even as I minister to other

childhood cancer families.

Grief pierces a hole deep in our hearts, but with help and hard work...

the hole will heal.

It will forever be a scar made up of pain covered in

the Joy and Hope of God.

www.rollinghills.org/grief-release

Jael and my daughters

2011-03-23T14:12:00.001-07:00

Just the other day, my second daughter sent me this picture. She's holding a metal stake in her hand. She entitled it "Jael". I laughed out loud remembering how often I'd told my girls while they were growing up that my favorite Bible story was Jael.

If you don't know the story it's found in Judges 4 and it happened during the time Deborah was Judge and Prophetess over Israel. Sisera, the military leader of Canaan had cruelly oppressed the Israelites for twenty years. Interestingly enough God had placed them under that oppression because they had kept right on ignoring God and doing evil.

Deborah knew God wanted to change that fact and so she summoned Barak, the military leader of Israel, telling him to go into battle against Sisera and his 900 iron chariots. God would make sure Barak won, she said. But Barak was afraid and refused to go without her. Deborah agreed to go with him making sure he knew he was a wimp and prophesying that Sisera would die at the hand of a woman.

And that's where Jael comes in. She was the wife of Heber a Kenite, who was friends with the king of Canaan, King Jabin. She lived in a tent. In that culture the men had multiple wives and each wife had their own tent, which they made themselves, maintained and lived in with their children.

So as Sisera's running for his life, because Barak is kicking his butt in battle, he runs to Heber's tents, after all; Heber is a friend of the Canaanites. He figures he's safe and as he runs by, Jael steps out of her tent and says, "Come in sir. Stay with me. Do not be afraid."

So he goes into the tent and lies down. She covers him with a blanket. He asks for water and she gives him milk. Then when he falls asleep because he was exhausted, she takes a tent stake and hammers it into the temple of his head all the way through into the ground killing him. Gruesome!

Finally in Judges 5 a song is sung about Jael calling her a hero and blessed among women! After Sisera's death, Isreal had 40 years of quiet in their land.

Jael was very brave. She lived in a society that placed very little value on women. She could not vote. She could not own property. She had to have a husband in order to survive and must produce children for him. She went against the social rules by inviting a man into her tent. Only her husband was allowed in her tent. She risked much for Israel. What happened to her later in her life? What did her husband say and do when he found out what she'd done? What motivated her to kill Sisera? Did she love Israel's God too?

This part of Israel's history in Judges 4 & 5 is interesting to me because it's a time when a woman was the leader of Israel. Deborah, their Judge and Prophetess put in leadership by God! And it was a women who completed the defeat of Israel's enemy.

I have a confession to make, I tend to be a Christian feminist which is why I love the stories of the strong women of the Bible: Deborah, Jael, Esther, Naomi, Ruth, Rahab and of course, Mary, the mother of Jesus etc. I love how they heard God's voice and did what He asked by going against their culture, the social norms and against their patriarchal society. I love how they risked it all for their God.

And as I contemplated this story, I think of my own 4 daughters. I realize that as a young mother, I thought I had the answers on how to raise them. I had the "godly" formula that would mold them into "godly" women. I thought I knew what they should be when they grew up. How they should conduct themselves, dress, what kind of man they should marry even how they should raise their own children. And I hung out with other mothers who thought the same way.

We only wanted what we thought was best for our daughters. But I view many things differently now. I do not have all the answers, but I do know there is no "godly" formula or any formula at all for that matter. I know God cannot be put in a box. And I know God is working in my life and my daughter's lives non-stop despite our errors and misconceptions.

Today I received a precious note from this same daughter along with an invitation to her Senior Art Exhibition at her college's new art museum. Her words of love and gratitude brought tears to my eyes and her father's eyes as well. She thanked us for allowing her to freely explore who she is and who she will become. She was grateful for our continued support and unconditional love. She commented on how blessed she is not to have parents pressuring her to become something or someone she is not. She is an artist, after all, and somehow along the way, I (we) have allowed her to be who God created her to be.

"You are so open and understanding and I feel like the whole world is so much more open to me because of it." "Thank you for understanding me..." she wrote.

When did this change come about for me as a parent? When did I stop putting each of my children in my mold trying to make them be what I thought the Christian culture demanded? Much of the change evolved out of my journey through childhood cancer with my son. I've grasped deeply the fact that I do not have control and with that comes the acknowledgment of complete TRUST in GOD in all things. This has also opened my eyes to the uniqueness of each of my children with their personality styles, their passions and their talents. It's allowed me to honor and respect their personhood.

And I won't lie. It's scary. It's risky. It can be painful.

And it feels so... out of control!

Allowing our girls to go out into the world seems wrong when in the Christian culture the world is seen as evil. Wouldn't it be better to keep them at home, insulating them from the world? Maybe. But what about their growth and knowledge of all God's people, the myriades of cultures and worldviews across the planet? Wouldn't it be best to learn about the world first hand by being in it? What about allowing them to make mistakes even those hard mistakes that impact the rest of their lives?

I want them to make their faith their own by being in the world and learning what faith is and what it means to walk it day by day. I want them to seek Him and see Him in the world. Because I know He is there. And I know He hears my prayers.

It would be so much easier just to keep them safe at home in a box alongside God. But it wouldn't be best. It wouldn't make them strong.

So this last picture is this same daughter apprenticing at an ironworks and forge out in the world somewhere.

I wonder if she's forging tent stakes?

Good-byes...Hello...

2011-03-20T16:48:00.000-07:00

On March 16th I said Hello and squeezed my daughter as she came home on the train.

Springbreak!

Her smile fills my heart.

Her singing and piano music fill the air!

She sleeps in and sighs with contentment.

Too soon I'll have to say Good-bye when she heads back to school.

On March 17th, I said Good-bye to my baby girl as she flew to see her sister in California.

We skyped on March 18th as we celebrated their father's birthday. The girls wrestled and giggled and sighed over the paella they could see but not smell or taste.

Touring college campuses, she called me after each appointment with coaches and professors. "Do you feel like a grown up girl now?" I asked. "No. It's scary" she answered in a tiny voice.

When did she become old enough to look at colleges?

I look forward to saying Hello to her on Wednesday.

Later that same day, St. Patrick's Day, I said Good-bye to Danny.

I touched his hand and thanked him for teaching me to appreciate each birthday I celebrate as a true gift.

I think from now on March 17th will be called St. Danny's Day.

His smile is infectious and I look forward to saying Hello to him again in heaven.

And early on the morning of March 19th I hugged Saku Good-bye and wished her Godspeed on her flight home to Tokyo, Japan.

Though her program had ended, we offered for her to stay longer with us knowing the chaos of Japan.

"I have thought on it well" she said. "I need to return to my family."

And when she saw my tears, she said, "Japan is strong."

She is returning with a Japanese/English Bible. A gift from us after she had expressed an interest in reading about Jesus.

I hope to say Hello to her again someday.

As I contemplate LENT...

2011-03-14T14:10:00.001-07:00

Phos Hilaron

(Song of Light)

Hail Gladdening Light

Of His pure glory poured

Who is the Immortal Father, Heavenly blest

Holiest of Holies, Jesus Christ our Lord

Now we are come to the sun's hour of rest

The lights of evening round us shine

We hymn the Father,

Son and Holy Spirit divine

Worthiest art thou, at all times to be sung

With undefiled tongue

Son of our God, Giver of life alone

Therefore in all the world

Thy glories Lord

Thine own

verse: an ancient Greek canticle

photos by Don Brenneman and Joy Brenneman

Today...

2011-03-13T15:27:00.000-07:00

Today Saku is grateful her parents are safe.

She Tweeted her friends letting them know our church and friends were praying for Japan and the Japanese people. They are very thankful.

She made a point of thanking our pastor before church began.

Her friends tell her no one in Japan is sleeping well as the aftershocks continue shaking the land every 2 hours.

And her government's earthquake scientists are warning there may be another "big" earthquake within the next 3 days. She is hoping that like our weathermen, her government's scientists are wrong. The fear is strong.

This sweet, gentle, gracious girl has opened our hearts to her people.

We pray and we hope...

And today, as I reflect on Gage and Danny and Lesly's lives, I smile.

I smile as I realize the gifts they each have given me.

I smile as I know they are no longer paralyzed or in pain or afraid.

I smile because I KNOW they have passed through the tunnel of death into eternal life.

And I pray for their parents and siblings who are left with a hole in their hearts.

" Each time we grieve we learn sorrow and joy walk hand in hand. Heartache and happiness dance side by side."

April Brenneman

Gage's Angel Warrior

March 11, 2011...

2011-03-12T07:45:00.001-08:00

Yesterday was a very difficult day...

I awoke to the news of an 8.9 earthquake in Japan. Later that night I hugged our Japanese exchange student as she cried in my arms. She hasn't been able to reach her parents.

I whispered prayers of hope into her ear...

I said good-bye to Gage Alexander Dole. An incredible 9 year old boy who battled cancer for 6 years and was a friend to my son. We celebrated his life by dancing to his song.

And on my way home, I read that Danny Keagbine took his last breath with family and friends surrounding him. Danny was an inspiration to me as he endure much pain, but always smiled and never complained.

Danny's words to me..."Happy late birthday April. Hope ur day was awesome. Birthdays are a great thing! Celebrating one more year of the awesome gift of life."

Good-bye Danny.

And today is the one year anniversary of Lesly Magli Foster's journey into heaven.

"When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight. For what is it to die but to stand naked in the wind and to melt into the sun? And what is it to cease breathing but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered? Only when you drink from the river of silence shall you indeed sing. And when you have reached the mountain top, then shall you begin to climb. And when the earth shall claim your limbs, then shall you truly dance."

Kahlil Gibran

The Shadow Survivors...

2011-03-08T23:03:00.001-08:00

are the siblings of a childhood cancer survivor.

Their hearts are forever altered.

Warriors for life.

They are SURVIVORS too!

"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than 10,000 tongues. They are messangers of overwhelming grief...and unspeakable love." Washington Irving

Do NOT forget the Shadow Survivors...

They are STRONG.

They have survived childhood cancer too!

How did we get here?

2011-03-08T22:43:00.000-08:00

How did we lose our dear friend, Gage Dole?

Our Angel Worrior died on Valentine's Day after battling for 6 years.

Friday we will attend his memorial.

What will we decide on growth hormone therapy?

Growth hormone deficiency can be treated, but at what risks?

God will lead us.

How did he earn his yellow belt in TaeKwonDo in only 6 classes?

What will he do next?

5 years post cancer treatment and he's cancer FREE!

Josh: "Am I in remission now?"

Dr. Norwood: " Well, Josh, in my book you are cured!"

How did we get here?

But by the grace of God...

Solitude...

2011-01-19T17:19:00.000-08:00

I've discovered, is as much an essential to life as breathing. I seek it out periodically. Like an instrinct its craving speaks to my spirit and if possible I listen and follow.

I'm in solitude now, at this moment, as I write these words. I sought out this time after a full yet stressful holiday season. I sought out this isolation just after turning 50 years old. I sought out this time soon after we celebrated Josh, my 10 year old son, being 5 years cancer FREE! I didn't consciously know these events were coinciding until after I entered into my solitude.

Solitude is God's way of connecting. He always meets me. I have listened. I am open to Him. Coming to mind are words spoken by others, divine appointments, counselor's comments, scripture verses, memories, a recent sermon, a book and the beauty of creation. All colliding together, yet planned, somehow. Connected. I always try to enter into solitude in a place of abundant nature. A place where I can immerse myself into Him.

The tears flow freely. The healing happens and is sometimes sharp and painful, though needed. Vision comes. Direction and hope. Strength. And joy. During this solitude a change of season becomes clear. Finally peace.
Solitude...

"My beloved spoke and said to me: "Rise up, my love, my fair one and come away. For lo, the winter is past, the rain is over and gone. The flowers appear on the earth; the time of singing has come, and the voice of the turtledove is heard in our land...Rise up, my love, my fair one, and come away!"
Song of Solomon 2:10, 13

Out of the mouth of a pediatric oncologist...

2010-08-27T16:43:00.000-07:00

She was Asian-American, young, self assured, smart. She was Josh’s first pediatric oncologist. And at a moment of great suffering she turned to me and said, “You need to let go.”

Sometimes people speak words we need to hear, but we balk at them, everything in us rising up against it. For me, this was that moment. Enraged I vowed to never “let go”. How could I abandon my son? I thought. But her words seemed trapped in my mind. And every so often as each year came and went, I found myself back in that instant reliving her words, her tone of voice, the look of sincerity on her face. As time marched on, I discovered the implication of her words were not what I had thought. Being so damned black and white, I had missed the depth and spiritual significance of what she said. And as time has evolved and I have hopefully grown, I recognize what she intended for me to hear.

Joshua or any of my children for that matter are not mine. I don’t own them or their lives. I don’t have control over what might or might not happen to them. They were created by God and given to my husband and me as gifts, for a time. So to “let go” is to release a burden of trying to control what I cannot. This truth, straight from God, was spoken to me in an instant of fear by a doctor who was treating my son. My fear, my black and whiteness blocked it from penetrating my soul until years later. Now I appreciate her words, her effort, and her wisdom.

Out of the mouth of Frank at Children’s Healing Art Project…

He’s an artist, creative, funny, with wavy sandy-red hair. With the spirit of a child, he loves children and clearly is gifted in working with kids who have life threatening illnesses and even dying children. He works with insight and intuition both powerful and astounding. After seeing his impact on my son’s emotional wellbeing I went to thank him. As we spoke together I mentioned my struggle with “survivor’s guilt”. I wondered aloud, “Why do other families lose their children to cancer while our son is cancer free?”

“I am no more deserving than Melissa or Kathy or Lauren” I cried.

Pausing and looking straight into my eyes he quietly said, “It’s not about you”.

Other times people will say something we know we are meant to hear. The words stop us cold; freezing the moment as they are released into the air. Penetrating my soul I knew, I just knew his words were truth. Oh, how easily I turn everything into something about me. How centered I am on my feelings, my emotions, my thoughts when all the while, it’s really not about me. This life, my life is not about me. It’s about those around me. It’s about my Creator and His work, His creation, His people placed in my life. It’s about His Planet. It’s about His love, His sacrifice, His continued work. It’s about His miraculous acts each day. It’s about centering my life on Him.

May I endeavor to remember and live out these truths: “Let go” and “It’s not about me”.

Out of the mouth of God…

Out of the clear blue...

2010-08-19T21:15:00.000-07:00

Crater Lake is the bluest blue I’ve ever seen. Deep and clear it reflects the cobalt sky encircled and contrasted by towering dark cliffs. It moved me.

Josh had never been camping before. Well, unless you count the night in the snow cave last winter where we froze all night and he promptly broke his arm early the next morning! Anyway, he’d been telling me he wanted to go camping. He’d heard all the stories of our camping adventures with the girls from their infancy right up until the late 90’s. When my husband went into fulltime ministry, for some unclear reason we just stopped. Maybe it was the transition of moving our family into my husband’s calling. After all; most summers found him in East Africa. Josh came along in 2000 and the girls began to travel with their dad to the African continent. Then came the cancer and two years of frequent hospital stays, survival, recovery, loss, post traumatic stress, grief, chaos and uncertainty…emotional upheaval all mixed in with faith.

So we squeezed Crater Lake in between two commitments in southern and eastern Oregon, threw a tent, some sleeping bags, pads and old cooking gear into the back of our car! Setting the tone for our one night two day adventure was the pleasant surprise of discovering it was a FREE weekend in the National Park. The three of us, hiked in wildflowers and along the rim of the stunning lake, swam and fished in the icy blue liquid, built a fire, cooked hot dogs and s’mores and marveled at the star studded sky. Josh talked and talked, full of questions and comments now that he was away from video games, TV and computers. And we could listen and try to answer him now that we were away from work, commitments and meetings. The time was precious.

It was strange without our girls, though, each of them busy with their summer jobs and activities and yet it seemed right and natural, just the three of us, mom, dad and son. It’s almost as if we have two families, two sets of memories, one with the girls and one with Josh. Oddly enough, our strongest memories of all seven of us together center around cancer: Make-A-Wish, the House in the Trees, and radiation in California, Disneyland, and Lego Land.

But one moment stands out stark and weighty on our Crater Lake camping trip. Touring the newly remodeled lodge, we marveled at its loveliness. Josh was totally engrossed in answering three pages of questions in order to earn his Junior Ranger badge, so he sat in a comfy chair in the lobby and I settled in next to him in the warm sunshine. As I began to watch the people around me in the busy lodge I suddenly saw her…it was Lesly…Lesly Foster…as I remember her, brown skin, dark curly brown hair, beautiful brown eyes, same build, and similar sweet round face. Tears slid down my face as I watched her...knowing it wasn’t her. Feelings of sorrow and grief and loss overwhelmed me. The ache of missing her was strong and then I thought of her parents and their ache, unfathomable. Everything came rushing at me at once of our journey with childhood cancer, of all the families I knew and what I knew of their journeys too. I couldn’t stop the tears and I hoped the little girl’s mother didn’t see me staring and crying.

I sat there for what seemed like a long time, when my husband showed up. He looked at me and I pointed the little girl out and quietly said, “Lesly”. He looked over, saw her and began to cry too. Josh heard me, looked up, saw her and said, “Awww” with deep feeling and then silence. Slowly and quietly we left the lodge each immersed in our own thoughts.

Out of the clear blue…

Of Camp and Bullies and Bullwinkles...

2010-08-05T21:56:00.000-07:00

My last blog post was simply two letters written by my 10 year old son while he was at his first overnight camp this summer. I worked hard to convince him to attend this camp for children dealing with cancer. After all he has struggled with anxiety especially while mom and dad are away and that’s why we got him his Angel Dog, Saucie. (Yet another blog post) But alas, pets weren’t allowed at camp, so persuading him to go took a little effort on my part.

And as you know from his letters everything started off well, but three days in he began to be bullied by two boys his age. None of this was revealed to me until we walked into our house after a long drive home and he began unpacking.

“Here mom" he said as he handed me a piece of paper. "Read this”. Oh how sad I was to see his words.

Many questions and discussions ensued with phone calls to the camp staff and an encouraging call to Josh from a male friend, himself a father filling in the gap for Josh’s dad who was out of the country. Though bullying is never right, many lessons were learned and discoveries made of insights into a little boy’s heart.

Then emails flew back and forth between two mothers, one with a son who was bullied and one with a son who went along with the bullying so that he himself wouldn’t be bullied. Self preservation.

And from those emails sprang an apology letter asking forgiveness and finally a sundrenched afternoon spent playing putt putt golf, bumper boats, high ropes courses and arcade games at a Family Fun Center called Bullwinkles.

Two boys becoming fast friends through the gift of forgiveness. One boy contrite of heart. One boy whose heart was healed. One boy who will now stand up for the weak. One boy who will speak up and tell an adult instead of hiding his pain.

Of Camp and Bullies and Bullwinkles and… Forgiveness…

So Josh went away for the first time to camp...

2010-06-30T22:36:00.000-07:00

A camp for kids dealing with cancer…

Sadly, it wasn’t a great experience for him.

Here are his two letters home:

“June 22, 2010
Dear Mom and Dad,
I am having the best time ever. It is the first day. I already made 3 friends. Their nicknames are Flash and That Guy Did It and Harry Potter. I was wondering if my Mindstorm NXT 2.0 is there. Anyway, we did a lot of fun stuff.”

“June 24, 2010
Hi Mom and Dad,
I am having a horrible time. There are 2 people that hate me and they are That Guy Did It and Flash, so they are not my friends anymore. Flash and That Guy Did It called me asshole 6 times and if I tell they will call me it more. I have but the counselors won’t do anything except say NO. They have called me also butthead, mentally challenged, weirdo, weirdo man and I really want to come home early. I at first cried in the bathroom for 20 minutes then asked Chief to let me go home early, but I can’t so I just went to the nursing station. The lady was nice and gave me Gatorade and animal crackers. After that I still just start crying in the middle of everything so I go back to the bathroom again then they call me cry baby and I still have 4 days left. I have been praying to go home. I love you mommy.
Sad Josh”

Bullies…

My heart hurts for my son...

Perfect timing...

2010-06-17T14:39:00.000-07:00

I always spend the ½ hour drive to Emanuel Children’s Hospital in prayer on the days I’m serving lunch to the families who have a child diagnosed with cancer. I ask the Holy Spirit to fill me that I might serve others as if I were Jesus, that I might have His words coming out of my mouth bringing His comfort, peace, love and support to a child with cancer, a sibling or a parent. Every time I serve lunch with my other volunteers, I see God working. I’m just one broken person empowered by Jesus reaching out to another broken soul. I’ve written about this in my blog before. It keeps my faith strong.

Last month I wrote a blog titled “I didn’t even ask him his name…” I had come home disappointed in myself in a number of ways, feeling as if I hadn’t measured up or God hadn’t stepped in. But as I read other people’s comments to my blog and contemplated that afternoon, I realized I had encouraged that particular family by letting them know my son was almost 5 years past treatment. I had shared a Ewings Sarcoma success story and I can still see that mother’s eyes light up as I told her about Josh. I now feel confident this alone was enough.

This month’s luncheon was overtly miraculous to me and I came home marveling at God’s timing. Last month I had noticed a mom who looked like the “walking dead”, but I hadn’t spoken with her. Please bear with me as I explain what I mean by the “walking dead.” As I’ve served with Candlelighters for a while now, I’ve come to recognize the various “faces” I see in the parents and the mother’s in particular, who have a child with cancer. The universal look is pain filled and sorrowful eyes. I’ve never seen one parent without it. Another look is a “deer in the headlights” stare. They are usually the ones in shock having recently found out their baby has cancer. Then there are the angry faces. They usually do not want to talk. The blissful/denial face is the parent who continues to smile and doesn’t seem to grasp (yet) the seriousness of this new journey. This parent usually puts their full trust in the doctors asking few questions about treatment or they have a uncanny ability to just “let go”. There’s the tear filled faces, the ones who can’t seem to stop crying or who burst into tears with one simple, innocent word or act of kindness. This is also the face I see when a child has relapsed or they’ve been told there’s nothing more they can do for their precious little one. And finally the “walking dead” is the parent who is emotionally and physically flat, exhausted with nothing left to give. I don’t mean any offense in my observations, there is no right or wrong, this is just what I see. And in fact I was at one time or another all of these “faces”.

So this month I felt led to sit across the table from this “walking dead” mother and I began to gently ask her a question or two. In a flat, emotionless, monotone voice she told me her teenage son had been in the PICU (Pediatric Intensive Care Unit) for 2 months now. He had been diagnosed with a specific cancer, had begun treatment and with no immune system had contracted a serious viral infection. He’d been on a ventilator ever since. With what she told me, I knew he shouldn’t even be alive, but here he was.

As I spoke a little about Joshua I mentioned his tracheotomy. And that’s when she said, still without any emotion, “Oh, my son will be getting a tracheotomy today at 3 pm.” This is when I knew why I was supposed to speak to her. I went on to tell her my experience with Josh’s tracheotomy, what she might expect right after the surgery and onward carefully weighing my words. Finally, when we were finished and she was ready to leave and go lie down in the “parent room” to rest, she said in her flat voice, “Thank you for speaking with me today about the tracheotomy. You’ve been a big help.” I answered with a “you are welcome” and went on to validate her terrible, difficult journey and as I leaned forward to hug her I noticed a single, silent tear slip down her cheek.

God’s timing…

Josh is 10 today...

2010-06-13T08:08:00.000-07:00

As this day was fast approaching, I found myself feeling the startled amazement of the miraculous…Joshua has lived to turn 10 years old! And I stifled the urge to pinch myself! This was followed quickly with my eyes tearing up, which I’d blink back as I smiled wider.

Eternally grateful, I still have difficulty writing and saying the words, “Praise God for the miracle of Josh!” What does it mean for the other children who have relapsed or who have died? Do we praise Him when a little one breathes his last breath? Perhaps, only in the sense that their physical suffering has ended and with the belief they are in the Heavenly Father’s arms. There is no other meaning than if God heals one He allows the physical death of the other. In my mind I can’t seem to put the two together. My only concrete knowledge is we each have our own unique journeys in this life.

I know others who haven’t received their miracle. I grieve over Lesly who didn’t make it to her 10th birthday and all the other childhood cancer children who didn’t see their next birthday, whatever that number might have been. Internally, I SHOUT my gratitude with total joy and love to my God and I know He clearly hears me, but my mouth will not allow it to escape. I try, but somehow it feels cruel.

I am so humbled by Josh’s life. I feel unworthy, knowing I am no better than any other loving mother out there who desperately wants nothing more than to share her life with her child, holding him, correcting him, watching him grow to adulthood. I cherish this privilege other mother’s have had ripped from them.

So I get frustrated with Josh when he doesn’t mind me. I nag him about his chores and homework. I teach him how to handle his anger. I encourage him not to antagonize his sisters. I remind him to take his medicine and to eat healthier. I sign him up for the Childhood Cancer Survivor’s Program. I drive him to his activities. I invite his friends over. I correct him when he talks back. I take him to his many doctors’ appointments. And I hug him as my heart melts at his smile.

I rejoice completely and totally for my son’s life quietly thanking my Savior. I grieve completely and totally for the families of the children who are still fighting or who are gone.

He’s 10 today…

I didn't even ask him his name...

2010-05-18T20:22:00.000-07:00

He was tall, but only 9 years old, the same age as my Joshua. His parents were foreign with thick accents. They mentioned his diagnoses…Ewings Sarcoma found in his thumb, of all places. Yes, the same cancer as my Joshua. But Josh’s had been found in his neck bone. Rare, his parents said. Yes, rare indeed I agreed with a nod of my head.

He was hooked up to the usual IV pole with bags of chemo and fluids. He munched away on his burrito. His head was bald. I told them of my son. How he was almost 5 years out of treatment. Their eyes lit up. 5 years! Then they mentioned their son had metastasis to his lungs as well. The cancer had already spread when they found it. My heart sunk. I didn’t even ask him his name.

I couldn’t.

I didn’t want to know.

Mets means a poorer prognosis, I know.

Maybe I won’t see them again next month. Maybe I will.

I’ve been serving lunch once a month to families in the hospital with children who have been diagnosed with cancer for over a year now. Always I’ve gotten to know their names, their diagnosis, and their stories. But something changed with Lesly Foster’s death. Something changed with Gage’s struggle.

It’s as if I’m putting a wall up, barricading myself in to protect my heart. I don’t want to know them well anymore. I want to serve, but I want to serve in a way that protects my emotions. How do I do that? Is it wrong of me? Selfish perhaps?

I thought about our conversation later. I was startled I hadn’t told them about E-SARC and all the other resources I know of for our EWS kids. Why?

I guess I need a reprieve. A break from the heartache. I hope it’s short-lived. I hope strength or hope or whatever it is I need returns.

I didn’t even ask him his name and I’d NEVER done that before…

Dear Lesly... (2)

2010-04-04T12:36:00.000-07:00

Your graveside service and celebration at C.H.A.P. (Children’s Healing Art Project) was wonderful. You are so loved Lesly. I was honored to help with your flowers on Friday. Frank had a huge picture of your beautiful face with a pink foil covered Styrofoam frame. We covered the frame with pink flowers. Your mom calls it your Buddha picture! J We also made a huge “Happy Sun” out of flowers and made buttons for everyone with your “Happy Sun” art work.

I was blessed to visit with your parents. I hadn’t seen them since you’ve left. The hugs we shared felt warm, strong and powerful. We talked a lot about you, how we miss you, how wonderful it must be for you to be without pain, to run and play in heaven. They seem to be doing ok, but I know it’s not easy. Your mom and I have made plans to go hiking together. I’m going to bring Josh’s dog and she’s going to bring your dog! I think they’ll have fun together.

It was cold and rainy throughout your graveside service. A lot of people were there. Doctors, nurses, friends, family, your teachers and school counselors, your chemo pals… We stood in the rain huddled together crying because we miss you and laughing at the many wonderful stories we heard about you. Stories like “Burn Barbie Burn”, your consistent, unique artwork of “Happy Suns”, your kindness, feistiness and fun nicknames for people you love like Mr. Bossy, and Dr. Shorty Pants. Whenever I think of you, Lesly, I hear your infectious giggle.

Frank told us to go ahead and cry, but that when we went to C.H.A..P. we were to laugh, party and celebrate your life! So that’s what we did! Your mom picked 14 kids, kids that knew you, which included Joshie. They went into the middle of the “paint cube” and the kids all threw paint at your mom and dad! You should have seen them with their goggles and hats. The bright spring colors were flying! Your mom and dad were covered with beautiful colorful blessings! Then we all took turns getting “blessed” or “blessing” others by throwing paint. Paint was everywhere! It soaked through our clothes; it was in our hair, our ears, on our faces, our hands and our feet! It’s been fun bringing home a piece of you as we keep discovering a vibrant splotch of color on our bodies! We ate ice-cream Sundaes, and then worn-out and spent we came home. We ate our favorite meal in honor of you, cried a little more, and then went to bed with thoughts of you with your colors still present.

Your mom and dad went home with your aunt, uncle and cousin last night. They are going to celebrate Easter together and your cousin is getting baptized! I know you’ll be watching. It is so fitting that we celebrated your life the day before Easter and your cousin celebrates her new life in Christ on Easter Sunday! Easter’s will never be the same for me, Lesly. I will always think of you when I ponder Christ’s resurrection. With paint still in his hair, Josh wore your “Happy Sun” button to Easter Service.

I’m so comforted knowing God sent you to your parents to be loved and cared for. Your journey was difficult, Lesly. At times it was excruciating. But you had amazing parents. They allowed you to be true to whom you are, they fought for you for five years, and they taught you right from wrong not allowing you to be rude or selfish. They are so strong they have so much more to give. Your mom spoke to me of her excitement to give to others returning what has been given to her and you and your dad. Incredible.

Often throughout the day I would look at your parents, Lesly, and think that could be Don and I. We could be celebrating the life of our young son, but we aren’t. I don’t understand why, Lesly. Why have we been spared that supreme grief? Why weren’t your parents spared? Why is Josh here? Why are you gone?

Good-bye Lesly…enjoy your new life…

Dear Lesly...

2010-03-24T16:42:00.000-07:00

Did you know I first saw you tethered to an IV pole in the halls of Emanuel Hospital? Just like Josh you were in treatment for childhood cancer. You were 5 years old and so was Josh. In fact, your birthday is only 4 days after Josh’s. Both of you are millennium babies! Beautiful brown eyes, smooth brown skin, curly black hair with a round cherub face, your smile lit up the room. You were adorable.

Then you went to Camp Agape and so did we for two summers in a row! Your energy and giggles were infectious. I got to know your mom and dad and found out what special people they are. They adopted you when you were 3 years old from Guatemala. Your mom explained how she put food all around their house, easily within your reach when you first came home, so you could eat when you were hungry. You couldn’t speak English. You wanted to sleep in the day time and play at night. Slowly you became their little girl. You were healthy and happy, but your belly was distended. Your mom, who was a nurse, just knew it was worms so she took you to the doctor to get medicine. But she was wrong. It was Neuroblastoma…cancer…

You and Josh played a lot together at camp. You two were best buds. Sometimes you would hug him, hold his hand other times you pushed him away and wanted nothing to do with him! You always had a mind of your own. That first summer Josh had just gotten his tracheotomy and I was so sad. Your mom listened to me talk and cry. She was so caring and loving giving me good advice. She became my friend. Your dad always wore bright colorful tie dye shirts. We could always spot him from far away. He was an artist. Those two summers were great as you and Josh ran and played, creating beautiful artwork with your moms hovering over you making sure you both took your medicines or didn’t get too much sun. You and Josh loved campfire time singing those silly songs, getting up on stage and wiggling. Josh’s sisters fell in love with you and talked about you often when camp ended. What precious memories.

Time marched forward. You had your medical issues. Josh had his. Sometimes your mom and I would go to lunch just to catch up. Josh had lots of medical procedures, which seemed to consume us. We ran into you at clinic once just after your Disneyland trip. You were dressed up as a Disney princess and you were so cute! I forget just which princess it was, but you were thrilled to show everyone how beautiful you were. All the nurses, staff and doctors “ooed and awed” over you. It was fun. We partied with you at two different CCA (Children’s Cancer Association) events. One of those years you were a Hero Kid with your shining face displayed on the Wall of Courage. That first year you and Josh held live white doves in your hands and released them up into the great blue sky. It was a powerful and moving moment. The picture above captures part of that moment. The second year it was an Aladdin theme and you ran right up front with the belly dancers wiggling your hips, twirling and dancing just like a princess. Josh and your dad and I watched you for a long time. You made us smile. You were so free.

Then one day I found out the Neuroblastoma had again invaded your little body. I called your mom and we cried together. Then she asked me, no she begged me not to tell Josh about the cancer coming back. She told me to just love him and enjoy him and let him live a life full of love and laughter not a life full of worry about cancer and children dying. So I did...well I tried. I found out I’m not very good at keeping secrets, especially this kind of secret. One evening Josh began to cry wanting to know what I wasn’t telling him. We had a long discussion about you, about death, about heaven. It was only one of many discussions about life and death that we’ve had since then. Josh asked me to NEVER keep secrets from him again. He told me he wants to know because it’s better to know the truth than to worry about what might be. “And the truth will set you free.” So I don’t keep secrets from Josh anymore.

And as time went on your parents fought for you through research and doctor visits traveling all over the US, clinical trials, thousands of prayers and more research. They fought valiantly against insurance companies and financial problems and cancer. You courageously fought right alongside them. I kept Josh up to date on what was happening in your life. We prayed for you and your parents. We hoped above all hopes for a miraculous cure. Josh even had his classmates pray for you.

Then you had a fundraiser at Oaks Park Skating Rink with your friend, Chatten. It was good to see you. Good to roller skate and laugh. But you weren’t feeling well and we knew. We knew things weren’t good. Josh was sad when we left, because you were hurting. We knew you were dying. Eventually your parents made the decision to bring hospice into your home. And we waited while we read your updates. You had visitors come and read to you or take you on walks in your wheelchair. I asked Josh if he wanted to visit and he said no. It made him too sad. So we waited and we prayed and one evening you slipped away from this earth, quietly…peacefully. Our family all cried together and we hugged each other. We grieve for our loss of you. We grieve for the emptiness your parents now feel. We pray for your mom and dad, because there’s a hole in their lives, a Lesly sized hole. It’s a beautiful ache.

Dancing in heaven…sweet Lesly…

Sometimes angels come in dog form...

2010-03-10T09:23:00.000-08:00

Our angel came to us recently in the shape of a four year old Australian Shepherd named Saucie. We had been talking about the idea of a “companion” dog for Josh for quite a while. As I began to research, I realized it could be years before we received one and Josh might not even qualify for a trained companion dog.

In the meantime, Josh’s anxiety at night grew more and more. Bedtime became a traumatic event. Eventually, we heard in Josh’s own words what the fear was all about.

“Mom, I’m afraid if I go to bed without you or dad I’m going to die in my sleep.”

“Josh, why do you think you might die in your sleep?”

“Because I’ve almost died so many times. First when we had the house fire when I was a baby and my sister saved me. Then I had cancer and almost died. Then I went into anaphylactic shock and almost died. Then I’ve had so many breathing problems and have almost died.”

I couldn’t argue with any of these incidents as they were all true. The house fire story was a little exaggerated, but I knew he’d heard the stories and they had set deep impressions in his soul. I reminded him that NONE of these situations were happening now. Our house was not on fire. The cancer is gone. I’m not giving him any medicine that will cause him to go into anaphylactic shock and he has a stable, solid airway through his tracheotomy.

“Oh” he replied as I watched his 9 year old mind take this all in. But still, bedtimes were tough.

Then we discovered a place where we might find a dog for Josh. As my husband called the breeder and spoke of Josh’s needs, he was told they had the perfect dog for us. And one day they drove out to the breeder’s home. The barn was lined with kennels full of barking dogs, but Saucie sat quietly. The breeder opened her pen and she walked straight up to Josh and sat down right in front of him waiting for him to pet her! Josh and my husband were stunned!

So Saucie came home that evening, Josh fed her and she slept the entire night on his bed and every night since. Gone is the fear and anxiety of death! Saucie follows him around where ever he goes. She watches out for him and waits for him to come home from school. She’s his buddy. She is calm, mellow and very loving. The other night Josh pointed out how she even lies down in the living room facing the entrance just so she could watch over us.

“She’s my guard dog, mom” he said with a smile. I would have never guessed what a difference a dog could make in my son’s life.

She’s an angel…

Why them? Why not us?

2010-01-30T19:33:00.000-08:00

Two children who went through cancer treatment with Josh are now dying.
Why them and not us?

One is on hospice care.
Her parents wait for her last breath.
Her parents have fought for her with unheralded valiance.
Brave…they are so brave.
She is unforgettable.
Thank God for hospice.
Thank God for pain medicines.
What are they going to do without her?

The other you would never guess the disease is growing.
His mom shares the fear, the pain, and the loss of hope.
Looking for another plan, another clinical trial.
What if…
What if it doesn’t work?
The odds are so low.
The words…quality of life are paramount.
Number one…quality of life.
Making memories.
I listened to his mother.
She is assured of heaven.
I saw the tears.
I ache with tears filling my eyes.
I cannot take it away.
What would I do?

Why them and not us?

We talked of their future without him, their only son.
My heart breaks.

It never stops breaking.
Why them and not us?

Suffering, I can suffer.
I can do it.
I’ll gladly do it.
But not my child.
Lord, not my child.

Why them and not us?

Why do they have to watch their child suffer, Lord?

Why?

Just a little understanding please...

2010-01-29T21:15:00.000-08:00

I am not stuck in childhood cancer. Childhood cancer is a reality of my world. The results of treatment on my son are harsh. They are a constant actuality of ongoing concern.

I am “moving on” though I may not be “moving on” the way you think I should.

I am not the same person I was before childhood cancer entered my son’s body. I will never be that person again. I am forever altered. I’m remorseful you cannot accept me as I am now.

I’m sorry I shared my heart with you. My inner struggles and honesty bothered you. You wouldn’t let me explain, interrupting me and telling me not to get defensive. I only wanted you to see how God miraculously met me at that moment of turmoil.

As your friend, I have attempted to listen to you, support you and encourage you. My mistake was assuming I would receive the same from you. From now on when you ask me how I am my answer will always be “Everything is fine.” I will not share my heartache.

I do enjoy “the moments” of my life more than you realize. Please quit judging me. Please quit criticizing me.

I will NOT walk away from the families who are still fighting childhood cancer. I am connected with them in a way you may never understand.

I will continue to serve with Candlelighters. Who else will show them the light of life after cancer treatment? Who else can empathize with a mother whose baby has just been diagnosed with cancer? After all, “It is better to light one candle than to curse the darkness.”

I will continue to give back what was so graciously given to me. Isn’t that what Christ would do?

Many of my friendships have altered since childhood cancer. You are one of them. I didn’t think you would be. I am saddened.

Just a little understanding please…

Almost 49 and holding...

2009-12-02T20:53:00.000-08:00

I’m a December baby and 49 is fast approaching. I don’t mind birthdays, but I do mind aging. With age comes wisdom, but why can’t we get older and not have our bodies malfunction?

For example, I’ve always had 20/20 vision. “Eagle Eye” my family affectionately called me as I was often the first to see the deer in the forest or the hawk soaring through the sky. What’s happened? The print on those vitamins bottles are suddenly impossible to read! I find myself holding my book at arm’s length while my eyes take their time focusing.

I put off buying reading glasses for as long as I could, but one day I realized I wasn’t reading anything! So I broke down and bought a pair. I consoled myself with the knowledge they were the lowest magnification possible. The first time I wore them in front of my children, my youngest daughter cried in her most dramatic voice, “Oh, mommy! You look so old!” Gee thanks honey. I guess I failed at picking out the most “hip” looking pair.

One day I lost them while going through the security in an airport. I’ve attempted to replace them a couple of times, but the cost is ridiculous. I refuse to pay $20-$25 just to look OLD! So one of these days I’ll break down and head over to The Dollar Tree and buy a pair for a buck. In the mean time I ask my kids to read those tiny labels on food boxes or coupons for me. Hopefully, the trauma of mommy looking old has passed.

Then there’s my knee. When did it start hurting? I kept thinking it’d go away as I was hiking regularly. I iced it, I babied it, stretched it and I rested it. But it never got better. It just plain hurt EVERYTIME I hiked. So I broke down and bought a knee support at Walgreens. I tried it out today and it was a success. Thankfully it is winter and I can hide it under my long pants that way no one can see my weakness. My kids don’t know about the knee brace yet. I hope they can handle it when they find out.

I trust my good knee holds out longer. Then there are those other aches and pains: my hips and my lower back. Maybe my hips hurt because I carried five babies! Maybe my lower back hurts because my tummy is too flabby from having all those babies. Should I tell my children it’s all their fault? Either way, I feel like it’s a losing battle. Gravity and time certainly take a toll on these earthly soul houses.

Finally, my 9 year old son added the biggest insult to injury as he climbed into my lap just the other day. I was focused on my writing as I happily typed away at my laptop. It took a while before it dawned on me what was going on; he was gently and affectionately playing with the loose skin under my chin…my waddle! Until that very moment, I didn’t even KNOW I had a waddle!

“WHAT ARE YOU DOING?” I cried as I pulled away in shock. “Are you playing with my waddle?!” And he mischievously and lovingly smiled up at me and said, “Yes, mommy. I like it. It’s soft and squishy.” I felt my sense of beauty ebb away. Oh vanity, vanity. All is vanity.

Almost 49 and trying to stay there…

My angel mermaid...

2009-11-22T08:47:00.000-08:00

When I was a little girl I wanted more than anything to be a mermaid. I loved the water, swimming for hours pretending I had a beautiful silver-green tail with long golden hair gliding gracefully through the water. The magic of Hawaii brought back those memories as I spent as much time in the ocean as I possibly could, floating on the waves, snorkeling, scuba diving and boogie boarding.

Our trip to Maui was just about perfect. The weather, the warm water, the peace, the calm, the lack of any stress, the books I read, the time spent with Don just being. We hadn't been back to Maui since our honeymoon 27 years and 7 months ago. This time away was just what my mind and body needed, but as our departure day drew near, I felt the familiar anxiousness starting to creep back in. Our last dinner there was spent in tears as I thought about all of the cares I seem to carry. Again I grieved over the losses we've experienced in the last five years. I remembered with longing the family trip we took to Hawaii just 7 months before Josh was diagnosed with cancer. I wondered if Josh would ever be able to swim in the Hawaiin ocean ever again. I went to bed that night asking God for His strength and His peace knowing I would soon be re-entering real life.

On our last morning, we awoke early and walked down to the ocean. I desired one last long morning swim. Don wanted to go for a run. As we approached the beach I saw an older woman with silver hair bobbing around in the mellow waves. I recognized her from the night before. She had been celebrating the sunset with a group of local residents. Their gathering was complete with wine, sushi, chicken wings and much fellowship. I had noticed she was new to the group as she was introducing herself to everyone except the gregarious lady who seemed to be the hostess. Then the hostess wrapped her arms around the new woman and said, "Let's go swim my mermaid friend." And they walked arm in arm towards the waves. I thought they were beautiful with their short silver hair and brown bodies. I longed for a mermaid friend too.

I grew excited when I saw her in the ocean and I suddenly knew God had something special in store for me. I walked into the waves diving under one and swam towards her. I seemed to be drawn to her. She was glowing and I approached her with a smile commenting on how lovely the ocean was. We began to talk. Before I knew it she shared with me in her Mississippi accent her miracle of healing from a brain tumor through a vivid vision, her love of God and His mysteries, her children and their lives, her childhood traumas. And I began to share about my life. God's love flowed through her and tears ran down her face as I talked about Joshua. She infused me with God's love, with encouragment and she hugged me deeply floating on the waves. She had already been swimming earlier that morning and had gotten out when she felt compelled to go back in the water. She said God had set up our meeting. We shared for an hour and I really can't put into words all that was said and felt. It seemed divine. Then Don swam over having finished his run. I introduced them. As she said it was time for her to leave she pulled me into her loving arms and began sweetly whispering angel prayers into my ear. She was praying in tongues for me. I began to quietly cry. She kissed me gently on my cheek and swam away.

I can't really explain what my angel mermaid did for me other than my anxiousness and fear are gone. I feel divinely renewed. Don and I marveled over this experience together with grateful hearts. As I shared this story and our time in Hawaii with a friend, he commented how he tries to live "Aloha" everyday. He lived on the islands attending Bible School a few years back. For me my angel mermaid reminded me "Living Aloha" means trusting in God and His ebb and flow of life. Birth, death, tragedy and miracles all blending into our journey of life. My angel mermaid was emphatic Josh would live a long life. She said we would all be back in Hawaii one day celebrating Josh's trach removal as we watched him swim through the blue-green waters. May it be so.

I had a panic attack the other night...

2009-10-28T10:56:00.000-07:00

I have not had one in a long time, but there it was staring me in the face again. That hateful feeling of adrenalin racing through my legs and arms, hot and tingling, my heart seeming to race while my mind shouts, “NO!” Breathe deep, breathe deep, I tell myself. I use all the tricks I know to work through it: my music, focusing my mind on God’s presence, deep breathing. Finally, through medication, sleep comes. I arise the next day feeling defeated.

The first time I had one, I didn’t really know what it was. And it caught me totally off guard. I had no idea why I would feel this way. I guess I wasn’t in tune with myself. Anyway, as time went on I figured it out, relied on God to get me through and eventually I didn’t suffer with them anymore. That is, until the other night when BOOM, there it was again. Hateful monster!

I know what triggered it. My son had been sick with the h1n1 virus. His high fever was scary. The doctor put him on Tamiflu and he quickly got better, though I'm watching him closely now for secondary infections. So of course, after the “crisis” the panic attack hit me. I think it’s part of the post traumatic stress syndrome from going through cancer with him. My deepest subconscious remembers the trauma of my son’s treatment…so when I think I’m fine…PANIC ATTACKS.

What were those attacks about BEFORE, I wonder. I think I was just overwhelmed with life. The first one hit me when my husband was in Africa, before I became pregnant with my son. The next ones hit me when I was pregnant and again my husband was in Africa, this time for a month working on a very important outreach in Rwanda. Yes, I believe there are spiritual implications here. A spiritual battle as they say.

So today I read these words from STREAMS IN THE DESERT:
“It is your business to lean to be peaceful and safe in God in every situation.”

“A quiet spirit is of inestimable value in carrying on outward activities; and nothing so hinders the working of the hidden spiritual forces, upon which, after all, our success in everything really depends, as a spirit of unrest and anxiety. There is immense power in stillness. A great saint once said, “All things come to him who knows how to trust and be silent.””

“Instead of restless struggles, we would “sit down” inwardly before the Lord, and would let the divine forces of His Spirit work out in silence the ends to which we aspire.”

This is what God is teaching me. But how do I trust and be silent? How do I “sit down” inwardly before the Lord and let the divine forces of His Spirit work? How do I attain a quiet spirit? I’m a practical person so I want practical steps to these seemingly nebulous ideas.

As I contemplate this and ask God to lead me, I realize solitude is key, finding time to be alone, in a peaceful, calm place with Him. Meditation. Slowing down my life when its pace can become fast and furious. I work hard at this and with the kids in school I do have time to set aside for seclusion. I've cut back on outside functions even limiting my time with some friends. But with the solitude and meditation comes “right thinking”.

I’ve found my thoughts to be filled with falsehoods. In other words I’m discovering how I believe wrong ideas of who I am. I’m finding I operate out of false guilt and supposed formulas. Somehow along the way I’ve forgotten who I am in Christ Jesus. I’ve forgotten how He is doing a good work in me. I’ve forgotten that He sees me in His perfection. I found I was striving for that peace, that quiet spirit only to be sabotaged by my erroneous thoughts. Both are crucial. I'm a work in progress. I'll let you know later how I'm doing.

Panic attack antidote: Solitude with my mind steeped in His truth.

Time...

2009-10-21T10:24:00.000-07:00

Thirty years ago my husband graduated from college with a degree in business and economics. He was ready to set the world on fire with the goal of becoming a millionaire by the age of 30. Instead he became a missionary to Africa.

Thirty years ago I graduated from high school dreaming I’d marry the man I was dating at the time. Instead I met my husband at church and we married two years later.

Today our oldest daughter has a college degree, a good job and a nine month old baby boy.

Today our second daughter is traveling in Europe with other college students learning more about our world.

Today our third daughter is finishing her senior year of high school and saving money as she works in a retirement home learning how to treasure the elderly.

Today our youngest daughter earned her driver’s license. I left a car for her at school so she could drive to her afternoon soccer game. I walked home in the rain.

And suddenly it hit me…

Five years ago today we heard the words “round blue cell sarcoma” as we sat in a tiny room off the main waiting area of the hospital. Our four year old son had cancer.

Today he is cancer free.

Time and God...

I'm not happy, but I am certainly blessed.

2009-09-28T17:20:00.000-07:00

I’ve always been a happy person: bubbly, eager for each day, anticipating the wonders of life, looking forward to the glorious treasures God has for me, enjoying various discoveries in my world. It was easy for me to feel happiness. It surfaced automatically with each shining day, surrounding me on my journey. But I haven’t felt happy for quite a while now. In fact, I find it quite elusive and wonder where it has gone. Like a lost piece of me, I search for it in vain.

Recently I read, “There is a vast difference between happiness and blessedness” from Streams in the Desert and I felt relieved somehow. I don’t have to be happy, though I miss its warmth and comfort; just knowing I am blessed is enough. A friend asked me recently if I was happy. “No,” I answered, “I don’t think we were put on this earth to be happy”. She made no further comment on happiness. (I can be such a "kill-joy" at times)

As Americans, I think we believe we have a right to be happy. After all, it’s written in our very own constitution as an “unalienable right”…“the right to life, liberty and the pursuit of happiness.” We often hear actors on TV or in movies saying the most important thing in life is being happy. As if that’s all that matters. But there is so much more. I think of Paul in the Bible who endured imprisonment, pain, sacrifice and suffering yet in the midst of it all was blessed. And he knew he was blessed. I may never feel the same happiness I felt before. I was younger then. It was an innocent time back when my life seemed perfect, but I do realize how blessed I am. The blessings surround me.

I also refuse to feel guilty anymore. I hear an annoying small voice whispering, “Well, you should feel happy. What’s wrong with you? You have healthy children, a beautiful home, and a safe place to live and food on the table. What's wrong with you? You SHOULD feel happy.” I refuse to accept this quilt any longer. I do not HAVE to feel happy.

There are many reasons why happiness has disappeared in my life. Most are due to major life changing events of which I have no control. I accept them now. I accept where I am. Happiness may be void in my life, but I KNOW I am blessed. Knowing this is not the same feeling as happiness. Blessedness is firm and solid and complete. Blessedness is real more concrete, foundational. Happiness is like vapors of smoke.

I am blessed. I am not happy.

2009-08-31T12:12:00.000-07:00

My husband and I have been living in a desert place for some time now. Three major life changing events have unexpectedly hit our family within the last few years. Staggering through hot, arid land devoid of green hills on the horizon, we try keeping our eyes focused ahead. And yet, God has provided small oases along the way. How else could we continue on?

Surprisingly, my oases have been through hiking and mountain climbing. Each hike has fed my soul’s eye with feasts of beauty beyond my imagining. I see and hear the Creator of the Universe when I am in His creation. I sense His presence. I know and feel His love for me as I sit in an alpine meadow listening to the clear, cool brook beside me or when I struggle through fatigue to reach the pinnacle of a mountain.

Each mount I have summated has taught me something new about life with God.

South Sister, my first climb, is the third tallest mountain in Oregon. (10,358-foot) Fog, sleet and no visibility made this a difficult climb. As the rugged mountain grew steeper and steeper, I kept looking up for a glimpse of the top hoping to see my goal. Only dense whiteness surrounded me. Glancing upward to the apex of a mountain encourages me onward. Picturesque views as I ascend a mountain reward me and yet I could see nothing but the jagged lava land just in front of my feet. I felt the altitude but was amazed at my body’s ability to keep going. Physically I was strong, but it was as if I were climbing blind. Yet, I heard His still, quiet voice encouraging me upward. Reaching the summit brought a sense of accomplishment, joy and of course, good chocolate! South Sister taught me God leads us though we may not be able to see our way. God is guiding me through the desert of darkness.

My second climb was Mt. Shasta (14,162 feet). My brother, the mountain guide, led me up this huge peak in two days. I trusted his expertise and experience as he woke me at 2 AM after spending the night on the mountain. We began to ascend in the pitch black morning with our headlamps lighting the way. We were short roped together with my brother in front. It was a steep ascent up the West Face, but we reached the false summit just as the sun rose. Feeling physically fit helped, but mentally I was challenged as I was a little frightened of the steepness and height.

So, I began reciting a mantra over and over again in my mind. With each step I recited their names: “Gage Dole, Lesly Foster, Joshua Brenneman, Jackson Hill and Amanda King”. Knowing these children have suffered through cancer treatments, knowing how Gage and Lesly are still struggling through their disease and how their parents are looking at "quality of life" now, making memories for as long as they can, empowered me. I thought about Jackson who gave a valiant fight, but passed away at the age of 12 in 2005 from osteosarcoma. I thought about Amanda who was only 18 and died just one month before of Ewings Sarcoma. Their parent’s faces flashed in my mind. This was what moved my feet step by step upward. Once I reached the true summit, I cheered and hollered and then began to cry. It was an emotional release. I wept for Gage, Lesly, Jackson, Amanda and of course, my son, Joshua. I grieved for all the other children fighting or who have fought cancer. I wrote their names in the summit book memorializing their courage, bravery and their lives. Shasta taught me God puts two kinds of people in our lives to lead us. Some have more expertise, more experience; therefore, God asks us to trust them just as I trusted my brother. And by trusting them we trust Him. Second are people who inspire us. Their lives encourage us, enlighten us and help us to see the value of others, giving us a healthy perspective about life, love and suffering.

Mt Adams (12,281 feet) was my latest climb teaching me God puts one more type of person in our lives, the quiet encouragers. I seriously contemplated not climbing this mountain, because I was starting off emotionally spent, extremely stressed and exhausted. However; I knew I needed this time in God’s marvelous design. As we began our ascent I found myself apathetic. I didn’t really seem to care if I completed the climb or just called it “good” when I hit the false summit. When we reached Piker’s Peak (the false summit) I was quite willing to be done. But Susan, one of my “Summit Sisters” very quietly said, “We’ve come this far. Let’s finish. We can’t give up now.” And I realized we can become apathetic in our Christian life, giving up running the race with perseverance and striving to be more like Jesus. It’s easy to just give in when we are weary from the journey. What I liked best about Susan was her calm, gentle coaxing voice filled with deep conviction. She wasn’t pushy or bossy. This is often how God wants to lead us if we would but listen. And I ask myself, "Do I allow silence in my life so I can hear Him?"

Each peak also revealed the same lessons as I thought about the descents. After reaching the summit and reveling in the high of realizing my goal, coming down was much more difficult. My knees hurt, my feet ached and fatigue thoroughly set into my muscles and bones. Isn’t this like life? After reaching our sought after goals or after the climax of achieving something we’ve been striving for we hit a low point. Perhaps it’s even a wonderful spiritual victory or event. The descent will be the hardest part of conquering a mountain or the toughest place in the voyage of life. The “coming down” is dangerous, just as the exhaustion of life sets in, or when battle after battle assaults you and you struggle to keep your footing. This is what the desert has been. Assault after assault. It feels as if there is no end. This is when I must keep focused and yet it’s the most difficult time to focus.

Getting off track happens easily on the decline as well. This happened on Mt Adams. We discovered we had missed the correct path as we looked to our left and saw the trail we should have been traveling. Again, Susan was our guide as she began pushing her way through the trees and shrubs. We crossed over two ridges full of rocks and deep gullies until we found the correct course. God gives us people in our lives that bring us back to His pathway just as He led us to the safety of our cars before nightfall at the base of Mt. Adams.

I love ascending mountains and I eagerly look forward to my next adventure, Middle Sister (10,047 feet). I wonder what God has in store for me. Though my husband and I seem to be in a desert, I cherish each oasis moment of experience in His wisdom of His beauty.

Mountains in the Desert…

“Fair-weather faith is no faith.” C.H. Spurgeon

Praising God no matter what...

2009-08-13T14:22:00.000-07:00

I cringe when I read or hear people praising God for answered prayers or when life is going well.
Does that shock you?

It’s so easy to say “God is good” when wonderful events are happening, when prayers seem to be answered just as we’ve wanted. But what about when that child we’ve been praying for dies? What about that friend in the middle of cancer treatment who asks for prayer to be well enough to attend his annual family camping trip actually goes camping for one day only to end up back in the hospital discovering the cancer has spread and within 2 weeks he’s gone? Why don’t we say “Praise God” then? Why don’t we hear the rousing, “God is good!”?

I cringe, because it feels as if we are bragging about answered prayers, we are saying, “See how much God loves US”. “He listens to US. He answers our prayers”, as if we have some special connection with God no one else has. But what about that faith-filled family who believed with all their hearts God was going to heal their daughter of cancer only to have her die suddenly in the PICU from pneumonia? Where is the “Hallelujah!” then?

Is God still good even when our prayers aren’t’ answered? Is He still powerful? Is He still loving and kind and all the other “feel good” words we use to describe Him? The answer to all these questions is YES!

When I found myself in a hospital room with my four year old son in the wee hours of a Friday morning, holding him in my arms while he slept fitfully after x-rays and a CAT scan revealed a tumor in his neck, I found myself praying. I was scared and I knew this was something BIG, but all I could think to pray was, “Thank you, Jesus. Thank you, Jesus.” Why?

It wasn’t because I was happy or grateful my little boy had cancer, it was because I knew God was sovereign. I knew He was all powerful and in control and there with us spiritually. I knew His presence was all around me. Foundationally, I had been taught 1 Thessalonians 5: 17, 18 “pray continually; give thanks in all circumstances, this is God’s will for you in Christ Jesus.” God’s desire for me was to pray and give thanks no matter what and so I did. Somehow my response was instinctual.

My journey through childhood cancer hasn’t always been filled with gratefulness. I’ve felt every emotion along the rollercoaster ride of treatment, medical procedures and side effects and haven’t always responded in a righteous manner. But still God wants me to give Him glory to lift up His name. I find this easy to do when it’s a “happily ever after ending”, but I plan to continue praising Him and thanking Him even when there is tragedy and heartache and pain.

Let’s be quick to praise Him when life seems good and when it’s not so good.

Let’s praise Him no matter what…

Discovering cable TV...

2009-08-11T22:56:00.000-07:00

After 27 years of marriage my husband just had cable installed in our home! He said we need it to save money on our phone and computers. I wasn’t too happy about it, because I want our children “doing” instead of watching. We’ve never been big TV viewers, though we enjoy movies. I knew we’d have to set boundaries especially for Josh and the Disney channel, which increases our parental work load, but I discovered a whole new world!

I found myself alone for a few days, because most of my family was at Camp Agape, and some were working their summer jobs. (Camp Agape is a free family camp for kids who have or have had cancer run by the Greek Orthodox Church) Being alone in a quiet house I decided to check out this “new to me” cable. As I flipped through channels I found Discovery Health. I was instantly hooked. Here were dramatic stories from the ER, mystery diseases and strange abnormalities. Though often gruesome, I thought it all fascinating as it depicted real people, families, and children fighting, living, thriving and suffering through HUGE medical difficulties.
One story fascinated me so much; I was up until 1 AM when it concluded. It was about a family in Florida, whose second child, a daughter, was born with a very rare, genetic disability. She literally had no face. It was an incredible story of LOVE. Her father impressed me as he commented that when he was finally able to see her for the first time, she pulled out her intubation tube. He knew then, she was intelligent, strong and had an attitude. The very qualities she would need to survive. This mother and father took their baby home and cared for her, loved her giving her the best life they could. She’s now 5 years old and has had 29 surgeries trying to make her face functional. At first I struggled to even look at this precious child. Her disfigurement so severe it was heart wrenching. Yet, as I watched, her personality, her loving spirit, the essence of whom she was shone brightly through. Her older sister was incredibly loving and accepting of her. Her parents gave their unconditional love. Her father was a military man and the mother often had to go through the many surgeries with their daughter on her own. She’s been mainstreamed into the public school. And the kindergartners have accepted her. As time goes on, though, she will begin to really understand her deformity and children can be cruel. Her parents worry about her future, but do their best for her now.

I was disappointed to realize Discovery Health was interrupted with commercials, so I would flip the channel and I started viewing an entertainment type show featuring the wedding of a Playboy Bunny to the “love of her life”. The couple was definitely in the “beautiful people” category. Thousands of dollars were being extravagantly spent on this wedding. They showed clips from the bride’s bachelorette party, complete with male strippers and lots of talk about sex and sexual jokes. The bachelor party was surprisingly serious and emotional as the groom and his buddies seemed more bonded than the bride did with her bridesmaids. Interesting, I thought. He gave each groomsman a watch with their nicknames engraved on the back. One of the groomsmen actually began to tear up

They were surrounded by beautiful people; everywhere you looked were perfect people with their entire fixation on self: cosmetic surgeries, perfect teeth, perfect hair and skin, breast implants, nose jobs. The wedding day was filled with airbrush make-up artists, hair dressers and people hired to dress everyone. At one point the bride commented, “We are just “real people” living our dream.” I literally laughed out loud! Here was “plastic world” at its best filled with the shallowness that only Hollywood can bring. Here was the perfect example of image and outside appearances trumping character and substance. There was no depth, no truth, no genuineness only a superficial surface for show. Marveling at the stark contrast between these two shows, these two worlds, I continued flipping channels between them.

A couple days later, I drove up to Camp Agape to join in on the last night. I enjoyed the traditional Greek dinner they serve and the Greek dancing afterward. But the last campfire is what I treasure most. Family after family steps forward willing to share from their heart what camp means to them as they toss a stick in the fire. Many newly diagnosed cancer families were present, as well as families we’ve bonded with over the last 5 years. Some families are still fighting this terrible disease and as they stood before us open, vulnerable able to share their tears, their dreams, their hopes; their depth of spirit was revealed. This was real life filled with real people. There was no shallowness here.

What a dichotomy these two cable shows portrayed. Give me real life; give me real people in challenging situations with depth of character and substance any day.

Discovering cable TV…

Summiting Mountains and Oasis...

2009-07-31T15:51:00.000-07:00

I’ve climbed two mountains so far this summer and I just finished facilitating a woman’s summer Bible study group called Oasis using the book A New Kind of Normal by Carol Kent. What does summiting mountains have to do with leading a Christian book group? Well, they were both extremely challenging, totally rewarding creating new growth in my spiritual, physical and mental life.

I summated Mt. Shasta (14,162 ft) on July 2nd along with my brother, Timmy, friend Torree and her friend, Glen. This was followed by Mt. Adams (12,281 ft) on July 23rd with my Summit Sisters: Laura, Susan and Linda. These adventures have buoyed up my soul in ways I never imagined. Reaching the summit of Shasta brought me to tears as I thought about Jackson Hill, Amanda King, Gage Dole, Lesly Foster and of course, my son Joshua. These children are my heroes as they have battled cancer, some for years, some for months. Some have lost the war and are finally whole in heaven. Some are still waging war with haggard parents, neglected siblings and broken dreams. I wrote each of these children’s names in the summit book realizing how repeating their names over and over again in my mind propelled me to the top just when I thought I couldn’t take another step.

Mt. Adams was a little different summit story. My mental struggle was because of emotional fatigue. I had just experienced a few extremely tumultuous days navigating through multiple stresses each of which took their toll. The most significant stressor had to do with figuring out which risks are acceptable in my son’s life and which are not. How do you allow a boy with a tracheotomy to float down a river knowing if he fell in, his life would most likely be over? I wasn’t sure I was psychologically ready. But deep down, I knew I needed to climb, so I set out with my Summit Sisters and discovered I had the strength to accomplish the task due to Susan’s encouraging words. Just when I was ready to say, “This is good enough” she pushed me onward and upward. “We haven’t come this far to give up now”, she gently coaxed. I also found myself praising God by repeating a mantra of “Thank (step) you (step) Jesus (step)” during the steepest part of the climb. I speculate my soul chose these words as I was grateful to be out in His creation, on His Mountain. The crazy thing was we had decided to do the ascent and descent in one day instead of the usual two days. And 15 ½ hours later we arrived back at the trail head, where we had begun the trip in the dark guided by our headlamps. The feeling was indescribable.

Climbing mountains can be seen as a metaphor for life in many ways. We must persevere, never giving up, pushing forward, “running the race set before us” as the book of Hebrews so clearly reminds us. We all have “mountains” in our lives we desire to someday conquer. And people are key to this, key to our lives. People spur us on, motivate us, inspire us, and encourage us. God often speaks through people as we limp along, buoying us up with hope. Certainly the children of cancer have done that for me just as Susan did. I imagine the end of my life to be similar to reaching the end of the trail. My feet hurt, my body aches but my heart is soaring. I knew I had done my best with the help of others, people God has placed in my life just at the right time, children who have endured such suffering and yet continue to smile.

That first night of the book group at Oasis was heavy as eight women sat around a rectangular table introducing themselves. Tears streamed down each woman’s face as they shared their story, stories of their worlds turning upside down. I felt so overwhelmed hearing their heartache, knowing I couldn’t fix their lives just as I couldn’t fix mine. Childhood cancer, lifelong medical complications, the impact of cancer on my other children, an unexpected grandson and a daughter with a broken heart are the reality of my life. The loss of dreams, rebellious children, bankruptcy, the sudden death of a child, a hurting marriage, a severely disabled child, an abused child and much more were the realities of these women’s lives. “What did I get myself into?” I thought as I drove home that first night. “What can I possibly do? There is so much hurt in this world, Lord. Help me. Help these precious women.” The second night was better as we forged into Carol Kent’s book. She has a way of pointing us to Jesus telling many shocking stories along the way. She herself has suffered tremendously, but has never given up, never walked away from God. She brought to light Mary the mother of Jesus in a fresh new way for me. She helped us realize we are not alone.

The women in my Oasis group amazed me. Their strength, wisdom, hope and tenacity have spurred me on. I bonded with each one thrilling at the knowledge of God working in their lives, gleaning from them the deep knowing and joy that comes from those who suffer. As we completed the book we vowed to survive, persevere, be vulnerable, forgive, trust, hold those we love with open hands, be thankful and choose purposeful action just as the book had taught us to do. By our last gathering I realized Jesus is active in their lives, seeing them through, helping them run the race, helping them accept their “new normal” finding new purpose which enables them to summit their mountains.

Summiting mountains and Oasis…

Living in No Man's Land...

2009-06-12T10:33:00.000-07:00

When I was 16 years old I spent the summer in a small border town between Austria and Hungry. One country was free the other was not. And in-between the two was No Man’s Land, a space belonging to neither region. It was a barren place seen clearly by both countries, yet unclaimed by either side. And now I live there.

It’s odd living in No Man’s Land a world between. A place guarded on both sides by those who KNOW what it means and those who DON’T. Each side equal in value and goodness, but one area much harsher than the other, a tougher place to live, ripe with heaviness. The other side is more untroubled, care free, lighter. The liberated side doesn’t understand the heavy side, always hoping they never have to cross over. Everyone who lives in the difficult area remembers when they existed on the easier side, but they can never go back. Eventually, they too will end up in No Man’s Land.

Just like me living in No Man’s Land a world between…

Somehow I’m able to step into each region for a time, connecting with both sides. Just this week I walked beside moms and children struggling, confused as they navigated their journey trapped for now on the heavy side. I gave out hugs; I cried with the moms and put on a loving smile for the children, their glowing beauty dazzling my heart. I listened feeling the burden, but knowing it wasn’t completely mine. Then it was time to enter the lighter place and I sat laughing, joking, listening to the silly talk, but the underlying hollowness ruined the lightness. I don’t fit into this world anymore. I never will again. But I don’t entirely fit into the weighty side any longer either. I cross the borders at will and join in moving around each region, never fully present. I’m in-between, isolated from both districts.

Living in No Man’s Land…

It's been a while...

2009-06-05T22:44:00.000-07:00

...Since I updated.

Life has been full and challenging and more. Tonight I'm alone sitting here at this kitchen table thinking many different thoughts:

The Sports Outreach Institute fundraiser golf tournament today raised more money than we ever dreamed possible for the poorest of the poor children in East Africa...ONLY GOD.

Amanda King, a precious 18 year old is taking her last breath on this earth surrounded by her loving family...ONLY GOD.

My oldest has moved into an apartment with her husband and baby, yet they struggle in their marriage talking about co-parenting...ONLY GOD.

My second is dating a wonderful young man and I'm hoping no hearts are broken...ONLY GOD.

My third is facing the SAT yet again tomorrow morning...ONLY GOD.

My fourth has a life full of fun, drama and fun...may her spiritual life grow...ONLY GOD.

My husband sleeps in the Tree House with our son, exhausted yet feeling fullfilled again knowing God's blessings...ONLY GOD.

Joshua sleeps beside him, ready for his Lego class tomorrow, hoping the kids won't point or ask him questions ignoring the tracheostomy he lives with...ONLY GOD.

Two of my dear friends struggle against the monster that threatens to devour their only children...ONLY GOD.

And I marvel at my life with a grateful heart...ONLY GOD.

Healing has come to my home...

2009-04-17T12:30:00.000-07:00

It’s very difficult to put into words what has happened over these last four days, but I will attempt it. My husband works for a Christian non-profit and two of his national staff came to visit us from Uganda, Africa. Aloysius and Esther Kyazze work in northern Uganda with war traumatized children, adults, HIV mothers and child mothers. I cannot express in this short space all they do for their people. But I can tell you they have both been gifted by God to see into the hearts and souls of hurting people, bringing healing and peace.

Our time together was short, but full of many meetings, speaking engagements and times of sharing. One morning we asked Aloysius to enlighten us with how he reaches out to these African children who have known nothing but war. Many of the children have been abducted by the rebel army and forced to become child soldiers. Many of them have been forced to butcher their own parents. Many have been forced to become sex slaves of the adult rebels. After escaping they are left emotionally, physically and psychologically damaged. The HIV mothers have been infected through rape or unfaithful husbands. The child mother’s have been tricked by unscrupulous men to have sex for food or a small treat then abandoned by the man and even their own families when they become pregnant. These girls are as young as 13 years.

Because they have known nothing but war for 25 years, this community of people have forgotten how to farm, how to raise livestock, how to be self sufficient. The NGOs in the area have handed out food and aid, but are now closing their offices as the crisis is over leaving these people with no knowledge of how to take care for themselves or how to get on with the business of living. The government is telling them to go back to their villages when their villages have been destroyed. Aloysius and Esther along with their staff and volunteers help teach their people the tools and skills they will need to begin again. They also walk along side of them to help bring emotional healing.

As Aloysius began to teach us how he encourages a traumatized person and helps them begin the healing process, my husband and I realized how broken we had become through Josh’s cancer diagnosis, treatment and continuing medical issues. We had already known this, but it became clearer as Aloysius was sharing with us. The trauma has also impacted our four daughters in various ways. If you have read this blog at all, you will know through my writings of our pain, heartache and struggles. Just the confirmation by Aloysius of our brokenness was enough to begin softening and covering our hearts with the balm of healing. I know we have not endured the atrocities these poor people in northern Uganda have, but our trauma is just as real, just as painful and just as much in need of help as theirs. In my world there are many hurting families due to childhood cancer and I desire to acquire the tools to be able to reach out to them with love, compassion and hope through the Holy Spirit.

Late last night, Esther spoke intensely and from her heart with our two high school daughters imparting an African Mama’s perspective and wisdom on life and God. What a special time that was! As I crawled into bed late in the evening, tears filled my eyes and a song I hadn’t sung in a long time filled my mind. It is titled “There is a Balm in Gilead”. I looked it up this morning and low and behold, it’s an African American Spiritual! I have copied the powerful words below. Aloysius and Esther left early this morning leaving behind a husband and wife who now feel a wholeness returning. Our focus, energy and purpose have been revived.

The healing has begun…

There Is a Balm in Gilead
By: African American Spiritual

Sometimes I feel discouraged and think my work’s in vain,
But then the Holy Spirit revives my soul again.
There is a balm in Gilead to make the wounded whole;
There is a balm in Gilead to heal the sin sick soul.

If you cannot preach like Peter, if you cannot pray like Paul,
You can tell the love of Jesus and say, "He died for all."
There is a balm in Gilead to make the wounded whole;
There is a balm in Gilead to heal the sin sick soul.

Don’t ever feel discouraged, for Jesus is your friend;
And if you lack for knowledge, He’ll never refuse to lend.
There is a balm in Gilead to make the wounded whole;
There is a balm in Gilead to heal the sin sick soul.

Sacred Sacrifice...

2009-03-09T14:03:00.000-07:00

I recently attended a women’s seminar taught by a published author who focused on helping Christian women become Biblical lay counselors. I signed up for this event for two reasons: First, I find myself in the world of childhood cancer, connecting with mothers whose child has just been diagnosed with cancer or who have lost a child to cancer or whose child seems to be losing the battle against cancer. I ache for these women with deep empathy and some understanding of their hurting hearts. I want to serve them in some capacity. Secondly, I need answers, help and Biblical truth myself. I long for peace in my soul after years of inner turmoil. I struggle with “survivor’s guilt”. Why is my son still alive? I am no better than any other mother who finds herself in a similar nightmare. My son and I are no more deserving.

The speaker surprised me with her small grandmotherly stature and gentle, quiet way of speaking. She was funny too, as she reminded me of many Biblical truths I have heard over the years. But when she took us to the book of Job in the Bible, tears began to slide down my face. Just before Josh was diagnosed with cancer, I had been wrestling with the verse in Job where he states, “Though He slay me, yet will I hope in Him.” I remember thinking I wasn’t so sure I could say those same words, yet I felt a stirring in my soul to say them out loud. Then my son became seriously ill.

Job lost EVERYTHING, his livelihood, his servants, his children and even his health. Yet, he continued to trust God. Of course, he also questioned all God had allowed to come his way. Believe me; I’ve questioned God a lot. There is nothing in this world quite as devastating as watching your precious child suffer. But even harder still is watching your child take his/her last breath. Thank God, I haven’t had to be burdened with that sadness, but I know many mothers who have. Though it doesn’t make it any easier, Job’s children died suddenly. It wasn’t a long, heartbreaking process like two mothers I know are enduring at this very moment.

God the father, on the other hand, allowed and watched His son, Jesus Christ suffer and die. He did not deny us the death of His son for the forgiveness or our sins. Mary, Jesus’s mother, must have born unbelievable agonies as she stood at the foot of her son’s cross. I’ve caught glimpses of this distress as Josh endured cancer treatment. The pain is literally tangible and alive. I sense other mother’s aching just as concretely, the women who are journeying a similar road. And I came to understand thru the speaker, this is my “sacred sacrifice”. I see myself prostrate before God laying down these years of heartache before Him, offering my son to Him, offering all my children and my husband to Him…essentially…offering Him my life. The answers of why or how could a loving God allow this or any of the other deep questions is still there. But it does alleviate, just a little, the “survivor’s guilt” I feel. It does take a little of the edge off of my distress. I’m settled in with knowing that’s all I have to offer Him, though out of my control. It boils down to TRUST.

(Please do not think I am comparing myself or anyone else with Jesus Christ and/or Mary.)

Jesus talks about counting the cost of following Him, but I see how just living life has a cost. For me it has come in the hurt of a child diagnosed with cancer, who has survived treatment, but deals with damaging, life altering side effects. It comes with the knowledge of his higher risks of heart problems, strokes and secondary cancers due to radiation and chemotherapy. It comes with the physical limitations due to a “compression fracture” of his vertebra and the fear of him becoming paralyzed. It comes with the balance of allowing my son to run and play; to be a boy, yet not putting him in a bubble. Would God have allowed this in my life if I hadn’t been a believer, I wonder? Just because I am a follower of Jesus Christ doesn’t mean I am spared any catastrophe. But I wonder why God allowed it. The speaker reminded me the Bible tells us how going through these agonies sifts out the junk in our lives helping us to become more Christ like. Part of me feels privileged with this thought…part of me feels downright angry.

The leader went on to emphasize how all things are for our good thru Jesus Christ. That’s a tough one for me as I watch "L" agonize over the choices she must make concerning her son’s cancer relapse. They’ve been fighting this beast since 2004 with prayer, medical doctors and alternative treatments. "K" whose daughter is in the hospital again due to complications from a trial chemotherapy drug for her daughter’s relapse, debates “quality of life” and what’s best for her little girl. "M", an 8 year old, is weary of the battle as she faces life and death questions with the help of a counselor. Though strong in her faith, she doesn’t want to die and is filled with anxiety. I must trust good will come of this?

I climb into bed telling God I just don’t understand. How can I become more Christ like with such anger in me? How can I become more like Him with this confusion? I hand it over to Him again and again, because there is nothing else I can do. I try to love these hurting mothers with words of encouragement, sending up a thousand prayers a day. I stand beside them sometimes in spirit sometimes in body. The compassion and heart I have for these women surely is Christ in me. This is how I know Christ I am Christ like, by sharing in their affliction.

As a believer, we are to thank God in all circumstances, but I cannot thank God for childhood cancer. It is not from Him, but He has allowed it. What a fine line of meaning in those words. I know we are His creation. I know compared to His holiness, we are deceitfully wicked. I know we really have no rights to ourselves. I know He is just, holy, sovereign and on and on. But I find myself balancing on that fine line trying not to fall off. I can only offer Him what I have endured with His permission as my “sacred sacrifice” being grateful of where I am. My friend "M" has given the ultimate “sacred sacrifice”, her 12 year old son.

I have not abandoned my God…He has not left me.

That’s my sacrificial thanksgiving…

It's surreal...

2009-02-27T11:14:00.000-08:00

Moments of my life, at times, feel dreamlike, strange, and unreal. It’s almost as if I’m stuck in thick molasses, moving in slow motion all my senses heightened: sound, sight, smell, my mind feels frozen in time.

Last Saturday was surreal as I walked into the C.H.A.P. (Children’s Healing Art Program) studio in the Pearl District of Portland. A large warehouse like room with floor to ceiling windows allowing sunlight to invade every inch of multiple colors and textures, crafting supplies, painted couches, a sequined coffee table and rows and rows of fabric. Even the volunteers had bright colors splashed all over their jeans, shoes and shirts. Their smiles were warm and genuine.

It was Aly’s “I’m done!” party and Josh and I had been invited. Though we’d never met her or her mother in person, we’d sent numerous encouraging emails, as we followed her journey on her website. Aly’s blue eyes were much larger than her picture’s revealed. A giant smile spread across her face as she was introduced to Josh and me. Quiet and calm, her bald head sported a heart tattoo and her eye lashes had grown back, long and thick. Aly’s sisters were there to join in the celebration along with another family.

The children threw themselves into the painting, stenciling, and beading while the volunteers encircled them with their vibrant love and supportive words. At one point the kids joined together covering large canvasses with pinks, blues, oranges and reds. I stood back soaking in the sunny warmth of peace and joy in my molasses atmosphere wanting to embed each moment in my mind forever. Their creations were spectacular.

The highlight was stepping our bare feet into squishy multi-colored paints and jumping enthusiastically on a mattress creating a masterpiece. The elation of that moment was surreal as I watched Aly jump holding tightly to her mommy’s hand her sisters at her side. How much suffering had she endured? How much pain and heartache had filled this young mother’s life? In that split second I understood her deep aching heart and the engulfing bliss of that moment.

Afterward I noticed the buckets of water set aside to wash painted hands. But this time the children were sitting on chairs while the volunteers knelt before them washing their precious small feet, tenderly cleansing and drying them. My heart was about to burst as I looked on thinking of Jesus washing His disciple’s feet. I had to walk away, because it hurt so much, but I found myself returning again and again to get another glimpse of this simple act.

How does something so simple have such an impact?

How does the process of art help heal broken hearts?

It's C.H.A.P...

Warning Christian, I don't intend to offend you...

2009-01-30T13:20:00.000-08:00

Dear Christian:

Please allow me to sit in this pain. It seems to fill my life.
Please don’t negate what I feel by telling me God’s in control. I know He is, but still I hurt…deeply.

Please don’t smile in my face and throw scriptures at me. I know those verses backwards and forwards, yet my heart aches each and every moment. Those verses don’t take the sting away.

Please don’t avoid me just because I might start weeping. Please look in my eyes though you’ll see my sorrow.

If I hear one more time how good God is, I think I’ll scream. I do see His goodness but still my soul is sore with grief and loss.

Don’t tell me how I should feel. I know you mean well, but I am raw and tender.

This voyage has been excruciatingly long. The hole is deep. I see light though dimly.
Joy appears sporadically lacking solidness. The piercing agony is constant.

God does give me strength each day, but don’t tell me He won’t give me more than I can bear. I can’t bear anything.

Please don’t tell me how it’s all for God’s glory, because I just don’t see it. Maybe one day I will. Maybe I never will.

As a Christian, I know I have a “hope and a future” that’s why I long for heaven, yet the ache is real and present now. The weariness never-ending.

Please meet me where I am. You can’t fix it, so don’t try. Just be with me.

Allow me the grace to journey through the pain…

Miracles...

2008-12-10T17:39:00.000-08:00

Like beauty, are in the eye of the beholder.

We were privileged to be a part of the Starlight Children’s Foundation’s Great Escapes Program last night. It was a Christmas dinner cruise on the Sternwheeler, which we had been a part of last year. Thankfully, it wasn’t as crowded this year, but we did end up on the bottom floor where most of the families with children in wheelchairs have to sit. The upper deck was completely full by the time we climbed aboard.

We’ve been taking part in Starlight for over a year now and I often wonder why we continue. Not because it’s not a good organization, but because it takes effort on my part. It takes energy, planning, gas and time to participate, but I am NEVER disappointed. I ALWAYS come home with lifted spirits, yet surrounded by the sadness of the harshness of real life. Since Josh’s diagnosis, I’ve come to realize it’s IMPOSSIBLE to separate joy from sorrow.

As my husband, two daughters and Joshie got settled around the far back table, I wondered what the Lord had in store for us this year. Last year, I felt His love and spirit in a tangible way as I watched the families file out at the end of the trip each one hugging Terri and Yvonne, the leaders and planners of these events. My husband and I literally FELT God’s love as we watched the procession of physically broken children and their weary families leave with joy, laughter and happiness written on their faces. We both had stood side by side, marveling as our eyes filled with tears. And I wondered what would happen this year…

Then I saw them, the last family to arrive. There wasn’t really any place for them to sit. We quickly offered to shuffle ourselves around making room for their small wheelchair filled with a precious little girl, their mentally disabled high school aged son and themselves. Once they were settled, the mom and I began to talk, while the father listened. This was their first outing with Starlight and she commented on how hard it is for her to go anywhere with the wheelchair in tow. Full of gratitude for our willingness to make room, she quickly told me her son had been born at 24 weeks gestational age weighing one pound and had suffered many brain bleeds, thus his mental disability. Then she introduced us to her three year old granddaughter, who had also been born at 24 weeks and was unable to walk, talk or even swallow on her own due to brain bleeds! They had adopted her instead of letting her become a ward of the state. I was stunned.

My mind quickly went to my precious first born. Twenty-one years ago she was born by an emergency c-section at 25 weeks weighing only 1 and ½ pounds. But unlike these two children, she NEVER had one brain bleed. She had her share of complications and problems, but she left the NICU fairly whole. In fact, my oldest will soon be graduating from college and will be giving birth to her first child. There was a time when we wondered if she would ever even be able to conceive because of the multiple x-rays, scans, steroids and her prematurity. She definitely had mild physical consequences of her prematurity and sometimes suffered through being teased by her peers because of them. But she always had a healthy knowledge of who she was and where she had come from and what could have been. As an adult now, many people don’t know about her beginning. They don’t know they are looking at a miracle.

As I sat across the table talking with that mother, I knew that could have been me. I knew that was a road the Lord could have had me travel down, but for whatever reason, He didn’t.

Instead, I was given a beautiful miracle…

Coincidence...

2008-12-04T18:07:00.000-08:00

A chance happening, an accident, fluke, or happenstance. But are there really such things as twists of fate? Or are there reasons for the why and how of things?

I believe in a reason and purpose, because I believe in the God of the Universe.

I wrote a blog last June about a very disappointing and tearful day for Josh and me. It was the day we were sure Josh’s trach tube was going to come out. We went to the hospital full of expectations and hope only to be disheartened by the failure of his trach removal. Finally, exhausted and spent, we began to drive home in the late afternoon each of us in the silence of our own sadness. Suddenly we noticed “The Jumper”. She was dressed in white painter pants and a button-up shirt, sporting a Mohawk. Anger etched her face as she fought the two officers trying to pull her down from the bridge railing. Her backpack sat on the ground beside her feet. This quick glimpse of desperation was gone in a flash as we drove by, propelling Josh and I into prayer for this stranger’s life, our own distress easily forgotten as we pondered the despair that would push someone to such a point.

Now fast forward to October. It was the month my husband and I spoke in our large church sharing our journey through childhood cancer with our son, Joshua. I had noticed them in the audience before, young street kids filling up an entire row of seats. The ministry is called Transitional Youth and a young couple drives downtown each Sunday morning picking up the homeless kids who want to go to church. I didn’t notice them in the crowd that day, after all the lights were bright and I was nervous. But the following Sunday, a young woman with a Mohawk came towards me after the service was over. She introduced herself and asked me to pray for her brother who had had cancer when he was a baby.

“The doctor’s think the cancer is back now” she said. I promised to pray for her brother. We talked a little longer and I asked her how I could pray for her too. After she shared, we parted.

A couple nights later deep in sleep I startled awake. "The Jumper" was the same mohawked girl I had met at church! Though I haven’t confirmed it, I’m almost 100 percent sure. I’ve seen her there every Sunday since. Sometimes we speak, sometimes we don’t. She’s touched my heart. A million questions have filled my mind: how did she end up on the streets, what’s her family like, how did she find Transitional Youth, what was happening when I drove by her that day?

Coincidence? Yeah…right…

"Transitional Youth provides outreach, support, and housing to positively transform the hearts and lives of homeless youth through compassion, guidance and the grace of God."

www.transitionalyouth.org

Moving out of the driver's seat...

2008-11-19T09:31:00.000-08:00

I’m in the process of teaching my fourth and last daughter to drive. It’s sort of a sad/relieved/amazed kind of feeling as I sit in the passenger seat and encourage her as she maneuvers down the road. I clearly remember how scared I was to teach my oldest to drive. She just didn’t have that natural knack, but my husband and I were also inexperienced at teaching something we took for granted. After all, we had been driving for years and really didn’t think much about the “how to” of driving. How do we translate those skills into the young inexperienced brain of our child? It was painful for all of us, but she learned and so did we.

Just as each of my four daughters is unique in their personality styles and abilities, some of them have been more gifted at learning to drive than others. I have to admit my youngest has been easiest to educate when it comes to driving. It’s part of being the “baby of the family”, I think. She’s watched her older sisters conquer the learning curve and experience the independence of going places on their own. She told me once she was born to drive! She began to talk about driving on her 14th birthday. She started studying her DMV booklet 6 months before her 15th birthday, and then counted down the days until she could take the permit test.

She’s so ready to grow up and yet…she isn’t. Because once she got her permit and began actually driving to and from art class, she looked over at me and said, “Mom, I don’t like driving.” She feels the stress, sees the craziness and seemingly random actions of other drivers and has suddenly realized what a HUGE responsibility it is to get behind the wheel of a car.

The sad part of teaching my last daughter to drive has shown itself in my heart as I’m reminded how I’m moving out of the driver’s seat of my girl’s lives. Slowly I’m slipping into the passenger seat and talking them through as they maneuver down the road of life into adulthood. It’s sort of bittersweet and it’s definitely scary. Sometimes I want to grab the wheel from them. Sometimes I find myself trying not to scream out with warning. Sometimes I’m pushing with my feet onto the invisible brakes on the passenger floorboard trying desperately to SLOW them down. My youngest has watched her older sisters leave home, make choices, seeing the serious side of life through them. She’s lived through a house fire and watched her little brother suffer through cancer treatments. She’s anxious to grow up and be on her own and yet, she hesitates as she watches how hard life can be for her sisters or when she discovers that driving really isn’t that fun after all. That’s fine, I think to myself. Take your time.

My oldest will be giving birth to her first child soon. My first born is becoming a mother. She’s in the driver’s seat of her life along with her husband and her God. I’m a passenger now, there to encourage, there to give advice when asked. It’s sort of the same feeling I had when I began to teach her to drive. It feels scary and I feel inadequate. It’s a big responsibility, this thing called life. How do I teach her what I’ve been doing for years? Giving birth, raising babies, discipline, nurturing, paying the bills, loving my husband? How do I impart what I know to this young mother? I want desperately to take control, telling her how to take each turn, when to brake, and how to anticipate danger, but I know that time is past. I’m in the passenger seat now.

My second daughter is almost completely in the driver’s seat. My third is making her way into the driver’s seat and my fourth daughter is just beginning to move over to the driver’s seat. There’s no hurry. I’ll cherish the time.

I’ll be in the passenger seat soon enough...

Just say NO to crack...

2008-11-08T18:16:00.000-08:00

It’s tough being a mom of daughters. I walk a tight rope of laying down the law or covering my babies with my smooches of love. On one hand I gaze at them and marvel at how they’ve grown, how mature they’ve become, how beautiful they are. On the other hand I see the young, firm bodies that can draw a man’s eye in a flash.

That’s why I say NO to crack. That’s right, I’ve been known to make them squat down right there in the fitting room of our favorite department store just to check for CRACK. You know what I mean, the crack of the fanny that seems to peak out from the back of those low cut jeans. Or it’s the crack in the chest area exposed because of the low cut scoop necked top. Who makes these clothes anyway?

Hey, I’m all for fashion. I’ve been known to wear really uncomfortable shoes just because they are “in”. I love looking at the latest styles, thumbing through those magazines that come in the mail from my favorite stores. I always look forward to dressing up, but for goodness sake, what’s with the jeans that have about 5 inches of depth from the crotch to the “waist” band? And what about those tops that allow the girls to literally BUST out?

If I see even a hint of crack, I refuse to buy the jeans or the top. I’ve been known to go on “crack” patrol just before the girls walk out the door to school. Oh, the sighs and moans I hear when I make them change. One of my girls in particular is very inspired by fashion. She has her own colorful, fun and funky look. So to make her change out of the carefully constructed outfit for the day seems to bring her pain. I’m pretty tough, though. No matter how painful it is or how much it ruins the outfit to change, I make her do it. These mother’s ears are deaf to that type of complaining.

One day they’ll thank me.

Just say NO to crack…

Another bit of damage done...

2008-10-31T12:54:00.000-07:00

We just discovered my son’s vocal chords have also been damaged by the radiation he received almost 4 years ago. They don’t open into a wide “V” as they should, which is why he sounds like a loud Kazoo while breathing at night. We just removed his trach tube and were hoping we could sew up the trach hole, but with the injured chords, we first need to find out if he’s getting enough oxygen and REM sleep at night.

This new revelation threw me into an angry tizzy. You’d think by now I could weather the storm better. But the anger and loss seem to keep mounting. I was angry at the doctor for not listening to me. I was angry at the oncologist for patronizing me. I was angry at my husband for agreeing with them. For my husband’s sake, I realize it was his optimistic nature kicking into overdrive hoping above all hopes that everything was fine. I forgive him. I forgive the doctors. Life goes on.

I read parts of a book today titled Childhood Cancer Survivors: A Practical Guide to Your Future. As I read the section on emotions, I was validated in many ways especially in the sections on anger and grief and loss. As I said, the losses seem to keep piling up and the anger seems to suddenly consume me.

Quote: “It is now known, however, that survivors and their families often face many physical and psychological challenges after cure.”

Yes, we have been dealing with serious physical complications due to treatment since we began the cancer fight. And we aren't even considered "cured" yet!

Quote: “You will probably experience a range of strong emotions as you adjust to your after-cancer life; these can include fear of recurrence, anxiety, guilt, anger and grief as well as gratitude and joy.”

Anger and grief, I seem to be stuck there.

Quote: “These perfectly normal feelings are sometimes viewed by others as a problem when they are actually a natural response to a life-changing event. It is important and necessary to acknowledge these feelings in order to deal with what cannot be changed.”

Interestingly, the “physical and psychological challenges” can be present for the rest of the survivor’s and family’s life!

Then I read my devotional this morning by Oswald Chambers focusing on “Faith as small as a mustard seed…” Matthew 17:20. Chambers writes “We have the idea that God rewards us for our faith, it may be so in the initial stages; but we do not earn anything by faith, faith brings us into right relationship with God and gives God His opportunity. God has frequently to knock the bottom board out of your experience if you are a saint in order to get you into contact with Himself. God wants you to understand that it is a life of faith, not a life of sentimental enjoyment of His blessings.”

He went on to write, “Faith by its very nature must be tried, and the real trial of faith is not that we find it difficult to trust God, but that God’s character has to be cleared in our own minds. Faith in the Bible is faith in God against everything that contradicts Him—I will remain true to God’s character whatever He may do.

So how do I join these two? What does “faith” have to do with “physical and psychological challenges”?

Everything…

As I struggle through the “strong emotions” of my life and my family’s lives being forever altered and changed, because of childhood cancer and as I find new “physical damage” done to my son, because of the treatment he received; I know God is at work in our lives. He is faithful, because of His character, which has proved itself to me over and over again, and I realize…

Another bit of healing made…

The tentacles of childhood cancer...

2008-10-20T08:29:00.000-07:00

On the day Josh was diagnosed, my world went black, thankfully, I didn’t know then what I know now. If I had, I don’t know if I could have made it. Childhood cancer has far reaching tentacles that seem to grab a hold of our lives even years later, even when the victim lives, even when the family is strong and whole (not perfect, but whole) before the cancer struck, even when Christ is present at the family’s center and their foundation.

I have been dumbstruck as my two oldest girls in particular have survived the trauma of watching their little brother suffer through agonizing treatments seemingly without scars; only to launch out into the world and then make mind-blowing choices. Choices obviously connected to the past pain of childhood cancer, even if they can’t see it.

As a parent, it seems my once whole, healthy, loving family is being ripped away, changed forever in a way that’s completely out of my power. I know I can ONLY control my own thoughts, words and actions, but I ache as I see their confusion and the far reaching implications of their choices. It’s as if childhood cancer permeated every facet of our lives, even affecting my husband and his work abilities. Yet, I will not put all the blame and responsibility on cancer, for that would give it too much power.

So, we, the remaining five of us at home are beginning family counseling. We are seeking the help of an expert who has dealt with families who have gone through childhood cancer. We are seeking the help of a woman with years of experience and more importantly, a woman of faith. We can’t keep hiding from the effects on our psyches, our souls, our very beings that fighting childhood cancer has brought. We are going to face this head on.

I cannot push another one of my baby birds out of the nest only to watch her break her own wing.

I called a trusted social worker at the hospital where my son was treated asking for an excellent reference in this area. After the information was given, I went on to inquire, “Gina, may I ask you a question?”

“Yes”, she replied.

“Have you EVER seen a family, even a strong family emerge from childhood cancer unscathed?”

After a brief hesitation, she replied “No”. As she went on, she said,” A childhood cancer diagnosis is a momentous, life changing event. Everyone is affected. No one escapes.”

Then she began to tell me story after story of cancer survivors and siblings who made decisions very similar to what my kids were making. I don’t know if this helped me, other than to know my girls are “normal”. I can only pray for them, knowing God is in their midst, working out His truth and best in their lives. They make their choices whether healthy or not. He intercedes with His love and grace, crying along side of their brokenness. I know kids leave home and despite the best upbringing they will make mistakes. But for families like ours they have been tainted by a harrowing event called cancer.

I release them, my children, into God’s hand with much prayer and trust. I keep the communication wide open. Of course, they will always have our support and love. I allow them to fall, to fail, to get hurt, but I’m angry at cancer. I’m angry for the shock and pain, anguish and insecurity it has caused us. I am enraged at how it’s still trying to devastate my family.

I trust in my Savior, not for a safe and secure journey, but for His love and grace, mercy and hope to fill us completely. There’s nothing more I can do.

I pray, for my family’s benefit, God’s sword of truth will cut through those far reaching tentacles of childhood cancer…

I never knew...

2008-10-09T20:00:00.000-07:00

I never knew how much having a tracheotomy impacted my son. I mean, it’s just a small tube inserted into the hole (stoma) in his neck that leads to his airway (trachea) enabling him to breathe. Despite the trach tube, he was mobile; he was active and seemed happy. After all he had lived with this thing for three years.

I vividly remember the two weeks before he had a tracheotomy. My husband and I had not slept as we watched over each of our son’s breathes, especially at night when his breathing made him labor and sweat like a marathon runner. We called 911 once. We ended up in the ER a couple of times and finally the doctor said he needed a tracheotomy. I was so torn. I was in agony for my son.

As Josh sat small and agitated on the hospital bed, the doctor walked into the room and gently explained how he was going to have to cut a hole into Josh’s neck so that he could breathe. Silent tears flowed down Josh’s cheeks as he began to understand what the doctor was telling him. Then Josh laughed as the doctor shared how he’d be able to blow bubbles from the hole in his neck, a feat no one else can do. And Josh continued to giggle as he pictured the bubbles floating away.

Adjusting to a tracheotomy was difficult. First Josh was in the Pediatric Intensive Care Unit after surgery. There were machines to get used to; suctioning of mucous secretions and a mist air compressor to hook up to at night. We had many supplies to order from the home health care company, but he was not on a ventilator and he was ambulatory. So we grew familiar with his needs and he grew comfortable with our care as his parents and time marched on.

Now the trach tube is out! And I don’t recognize my boy. I don’t mean physically, I mean his spirit, the essence of who he is; his countenance, his being. Yesterday, I watched as he ran at school recess like a long distance runner with great form and power. I marveled as he tackled the rock wall in his rock climbing class with strength and vigor I didn’t know he had. His first class was only one day after the trach tube removal and he challenged himself each climb, intently listening to the instructor’s directions and encouragement.

He has a confidence I never knew existed in him before. It’s as if the removal of this tube is the last visage of being sick with cancer; the last reminder that has been eradicated, pulled up and thrown out like a weed.

I knew my son had strength and courage, because he’s been through so much. But now he’s a different boy. He’s so smart and athletic and powerful. This is a side of him I’ve never seen, because it’s been hidden by cancer. It’s been concealed by four years of medical trauma. I marvel at who he’s becoming and I am thankful.

I never knew…

I saw through his eyes...

2008-09-20T13:51:00.000-07:00

Our last visit to Josh’s pediatric oncologist was profound for me. Here was a man, I have to admit, I didn’t like during Josh’s treatments. A man with no children of his own who seemed so “clinical” without empathy, yet very smart. A man who knew his “stuff”, but didn’t seem to me to have compassion for my emotions and needs. Though I connected well with the female pediatric oncologists during treatment, he and I often had “words”.

A couple weeks ago, we went in for Josh’s three year post treatment scan results. Just hitting the three year mark was a miracle. But what struck me most was this male oncologist. He was so joyful, happy, excited to see Josh. He positively glowed as he joked with my son, looking him over, he almost couldn’t stop laughing. He bounced as he walked down the hall, acting silly with Josh, he was totally thrilled. As I marveled at the seeming change in this “clinical” man, I began to see through his eyes.

Day in and day out he treats sick kids…very sick kids. He knows the stats, the insidious details of these diseases, the odds, so to speak. He orders painful procedures and watches as they loose their hair, growing pale and skinny. He brings them to the brink of death, hoping to save them. Sadly, some of them fade away, which must meant a failure to him. He knows he cannot save them all. He deals with parents stressed to the breaking point and families who fall apart. He’s dedicated his life to his career, spending countless hours on-call, in the clinic and on the children’s floor. How weary he must grow.

So in we walk, four years after having first met him, a success story, a living breathing boy who has gone through hell. Yes, he’s damaged, but he’s alive! He’s breathing! He’s going to school and happy, full of energy. He has friends, bright cheeks with long scraggly hair and a grin that melts the heart. And I think the doctor knows his part in this story. He sees his place in the boy’s life and this family’s life. He realizes despite the losses, the heartache, the pain and tears, it was worth it. He has helped win this battle and he is celebrating.

I am connected with him as I now see through his eyes…

The jumper...

2008-09-10T20:01:00.000-07:00

It was a June morning, full of promise. We were sure his trach tube was going to be removed. Alas, it wasn’t to be. Our hearts were full of sorrow, broken and disappointed. We had finished with our tears, Josh had awoken enough from the sedation to drink some Gatorade, his pain medicine was working and now we were driving home.

That’s when we saw her…

At first I thought “she” was a “he”. A stocky, strong person wearing a button up shirt and tan colored pans, a black backpack sat at her feet. A tall spiky, sandy colored Mohawk dominated her head. Struggling with the police, she was desperately trying to jump off of the 405 bridge!

As we whisked by in our car, I looked in my rearview mirror and saw she was finally subdued. Oh, how my heart broke for her. Thankfully her precious life was saved. What had driven her to that point? What was her story? In that moment, Josh and I began to pray out loud for her and her brokenness. There is wholeness and healing to be had through the Creator of the Universe.

I often think of her when I remember that June morning full of a promise that wasn’t to be. And I thank God; she was stopped from taking her life. I continue to pray for our miracle and I thank God for the miracle of the life…

… of the jumper.

36 months...

2008-08-28T21:50:00.000-07:00

That’s how long it’s been since we finished Joshua’s cancer treatment. That’s 3 years…
or 1,095 days…or 26,280 hours…or 1,576,800 minutes…but who’s counting?

36 months ago Josh was being given his last round of chemotherapy in Emanuel Children’s Hospital when he went into anaphylactic shock due to a platelet transfusion. We almost lost him that day. I remember scooping his limp, seemingly lifeless body up into my arms praying silently while his doctor calmly went to work. He was revived. Amazingly, while that was happening, the cement foundation for Josh’s House in the Trees was just being poured. Our backyard was full of loving, talented volunteers who were willingly being directed by Josh’s father.

36 months ago, when his last dose of chemotherapy was given and his first set of "end of treatment" scans were taken, we were told it looked like the cancer had "possibly" spread to his lungs. We were given two choices: either go home, live your life and come back in a month for more scans, or stay in the hospital and endure more intense scans in order to see if it was indeed cancer.

We went home. Later on his scans were clear.

Josh has had 12 sets of scans and then some since his first set of "post treatment" scans. Today he had his 36 months post treatment scans. Tomorrow he has an echocardiogram and we meet with his oncologist.

36 months and I’m waiting to hear...once again...all is clear…no cancer…

Go ahead and breathe…

8-29-08...We got the ALL CLEAR!!!

I am breathing again...

Just an observation I find interesting...

2008-08-08T12:02:00.000-07:00

When Josh was in treatment, a dear friend of ours gave him a cute stuffed gorilla. Josh immediately named him “King Louie”. I think he was inspired by the Jungle Book movie.

Anyway, King Louie was with Josh during EVERY hospital stay. Josh frequently gave King Louie shots . Josh put an IV in King Louie’s hand complete with gauze and tape. King Louie wore a neck brace 24/7 just like Josh did for his year of treatment. Once treatment was over King Louie sat on Josh’s bed still wearing a neck brace, still with an IV in his hand. Josh rarely sleeps in his bed as he prefers to sleep in his bed in his House in the Trees, so King Louie and all the other animals in his room had been forgotten…until recently.

I’ve been in the mood to do some deep cleaning. Believe me, this is such a rare phenomenon, that when it strikes me, I go for it! One project I had decided on was to convert the “sewing” loft near Josh’s bedroom into a “Lego/toy” loft for him and I enlisted his help. All of the completed Lego pieces he had put together over the years were removed from his room and put on display on the shelves of the loft. Carefully, he set them up in their proper groups, sometimes displaying action. This left room for him to move all of his stuffed animals on his bed to an empty shelf area in his room. I put him in charge of moving and displaying them how he wanted.

Today, I walked into Josh’s room to put something away, when I noticed King Louie. For the first time ever, King Louie was sitting there without a neck brace on; instead he sports a bright red bow tie! I took a closer look and discovered he no longer has an IV in his hand either! Instead his hand was clean and furry with a small remaining piece of tape, which I quickly removed. I patted King Louie on the head and smiled to myself.

I’m not sure, but I could have sworn King Louie smiled back at me.

Stripped bare...

2008-07-23T09:44:00.000-07:00

I sat under my pastor’s teaching one Sunday as he spoke on John 15.

Jesus said, “I am the true vine, and my Father is the gardener. He cuts off every branch in me that bears no fruit, while every branch that does bear fruit he prunes so that it will be even more fruitful.” “Remain in me and I will remain in you. No branch can bear fruit by itself; it must remain in the vine. Neither can you bear fruit unless you remain in me.”

What made his teaching interesting was a video interview with a vineyard keeper from a local winery. They discussed the vines, the branches, pruning, and the fruit. But as the video camera zoomed in on a brown, bare, severely pruned vine with one bare branch jutting out of it, I felt as if I were seeing myself. Raw, exposed, naked, and absent of green growth, it stood in stark contrast to the lush green foliaged vine heavy with fruit. I began to weep, as I looked upon a portrait of my soul.

Since that Sunday, I often see the image in my mind. I reflect on Josh’s cancer diagnosis, treatment and ongoing medical care, the enormous disappointment of the failure to remove his trach tube and the current tumultuous emotional situations concerning my other children. But life continues moving forward as do I, a bare branch grafted into the Vine.

As I was reading my devotional one morning, My Utmost for His Highest by Oswald Chambers, I read:

"To fulfill God's design means entire abandonment to Him. Whenever I want things for myself, the relationship is distorted. It will be a big humiliation to realize that I have not been concerned about realizing Jesus Christ, but only about realizing what He has done for me."

These words were followed by this verse:

“My goal is God Himself, not joy nor peace,
Nor even blessing, but Himself, my God.”

Oh, how this spoke to my heart and how vivid those video shots were, showing my life as it seems right now. I am connected to the Vine, Jesus Christ, and all else has been cut away. The emotions of living move me up and down like a small branch in the wind, but still I cling to the One. My self sufficiency, my pride, my dreams for my children, my expectations of life have all been severed from the branch and thrown into the fire. It is only He and I, our relationship and nothing else. I remain in Him.

Stripped bare and clinging to the Vine…

There are two things I crave...

2008-07-14T18:28:00.000-07:00

People who make me laugh and God’s nature, two seemingly separate experiences and yet, similar in their healing and power over my soul and psyche. I find myself seeking out ways to find both laughter and beauty.

I love spending time with people who can laugh at themselves, who see the ridiculous and absurd in the mundane of everyday life. I’m thinking of one friend in particular. Just hearing her voice makes me laugh. She knows how to poke fun of herself teasing about her weaknesses and idiosyncrasies. She cracks me up as she helps me see the lighter side of life. She knows what’s truly important, but she never let’s me take myself too seriously. I need this reminder often. And as we chuckle together with those deep belly laughs that bring tears to our eyes, I feel my burdens lift. Only a loving God could have created laughter.

Then there’s this planet. The creator of the Universe put together mindboggling magnificence just for my enjoyment. Who can live with out experiencing the majesty and beauty of His world? This winter I hiked through snow dazzling like diamonds all around me. I marvel at this phenomenon. I saw Mt Hood stark and white standing like the finest clothed bride contrasted against the bluest of blue skies I’ve ever seen. Words cannot begin to describe His splendor. My soul was nourished through my eyes, ears and sense of smell as I soaked in creation, stopping to hear the stillness encircle me, breathing in the sparkling, icy air. Oh what nourishment! Only a loving God could have created such exquisiteness.

There are two things I crave, laughter and beauty…

Expectations, disappointments and tracheotomies...

2008-06-19T07:34:00.000-07:00

The definition of expectation is “a confident belief or strong hope that a particular event will happen.”

Disappointment means “a feeling of sadness or frustration … because something hoped for did not happen.”

A tracheotomy is “the making of an incision through the neck into the trachea to assist breathing when the upper airways are blocked.”

So what do these three words have to do with each other? In my world they are the reality I am living with today. I had the “strong hope” that my son’s tracheotomy would be removed on June 17, 2008. I was “confident in my belief” that his airway had healed from the radiation that had damaged it. The same radiation that had been administered over three years ago to kill the cancer. I planned a huge swim party to celebrate the removal of his trach tube with over 200 families on the invitation list! I pictured him finally being able to put his head under water as he floated on a tube in the deep wave pool. When I closed my eyes, I saw him sliding down the waterslide and splashing out the other end. I saw the smile on his face; I felt the fear of water filling his lungs through the stoma (hole) disappear.

I dreamed of handing over his suction machine and heated mist machine to the home health care company for good. I smiled thinking how I’d never have to fax in orders for artificial noses, suction catheters, saline vials and nebulizer kits again. I imagined him sleeping in a quiet room at night without the noise of his mist machine. I marveled at how wonderful it would be to not worry about dust or pollen or smoke damaging his lungs by being breathed in through his trach tube where there are no natural filters. I imagined them all; I was so hopeful and confident.

But instead disappointment hit us square in the face. His trachea (airway) is now scarred making the opening too small for the oxygen needs of an eight year old boy. My son’s disappointment broke my heart as I watched him sob silently in his hospital bed when he awoke from his medicated slumber and felt the trach tube still in place. The something we had hoped for did not happen. Tears instead of laughter became the rule of our day.

I had pictured the day so differently. I saw us laughing and hugging and giving high fives to all the doctors and nurses. I imagined Joshie and I dancing in the hallways on the pediatric oncology floor as we spent the night just to make sure he was breathing ok. I could just see him showing off the scar on his neck where the trach tube used to be. Instead we cried, nurses hugged us and consoled us with kind words, doctors put their arms around us. Instead of having a sleepover at the hospital, we went home feeling sad and forlorn.

Recently I’ve wondered why I should ever have any expectations about anything. After all, if I expected nothing, I would never be disappointed. Right? Is it possible for me to live without any expectations? Would this be healthy? When I process it, I come full circle in my thinking; I realize living without expectations would mean living without “strong hope” or “strong belief” in anything! That would mean the loss of my hope and my faith. The two go hand in hand. I cannot live without hope or without faith. It’s my faith that gives me my hope, which spurs me forward knowing there is love all around me, even in my deep dark disappointments.

God is love. Faith, hope and love give me life, nourish my soul, comfort my spirit. They are as necessary as food, air and water.

I am willing to accept life’s disappointments. So, I will go on having expectations and sometimes I will find exactly what I was hoping for and sometimes I will be disappointed. Some disappointments will be small and insignificant really. Some will be much more impactful, like this last disappointment and I will allow myself to cry and grieve.

Josh’s tracheotomy is something he can live with, because it allows him to breathe. And I will go on expecting it to one day be removed, so he can swim and not stand out in a crowd of kids, so that he can breathe the way God created his body to breathe.

"Now faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1

Faith, Hope, Love and tracheotomies…

Broken dreams and cancer...

2008-06-06T09:06:00.000-07:00

Once upon a time, before childhood cancer, I had all the answers. I knew what was right and wrong. Things were either black or they were white. Life was simple. I held to a moral superiority. And then I walked the sarcoma road with my son. Now the lines are blurry, not quite as clear as before. What’s happened?

When I faced cancer with my son and we miraculously came out the other end, scarred, but alive, any other problem or crisis or consequences of poor choices I might face with another one of my children seemed to PALE in comparison. I’ve realized I can get through the next hurdle in life, because I’ve battled through cancer with my boy. Childhood cancer has a way of defining and pinpointing what’s most important as I travel through my life. I guess it’s an earthly lesson I didn’t expect.

I am friends now with moms who have lost a child to cancer. I notice the sadness surrounding them even when they are laughing and seemingly enjoying their lives. They move forward, but really they have no choice, because life didn’t just stop for them once their child died. These women have taught me so much. They ache with an emptiness clinging to the only hope they have of being reunited with their precious baby once they too die and go to heaven. In the meantime, they cry themselves to sleep after a full, busy and purposeful day. They breathe in and out with aching hearts.

I am facing serious consequences with one of my daughters due to her poor choices, but it’s not cancer. It’s a broken dream of what I had expected for her and from her. It’s a broken trust that is being repaired, because repentance, forgiveness and reconciliation are being worked through and the hope I have of redemption with this child is a reality of NOW. It’s alive on this planet in this moment. It’s not a hope waiting for eternity. The dream for her has changed. It’s not cancer.

It’s not cancer. Some of my Christian friends who know the circumstances, who love my daughter, cringe at these words. Maybe they feel I’ve lowered my standards. All of my friends of faith, who know about the situation, are hurt by my daughter’s actions. But some are responding with deep grace and mercy. Some are not. I believe all of my friends love me and my family dearly. I know some of us may have a harder time with God’s grace and mercy. None of us deserve it. Some just don’t have the eye to see what I see. I live everyday with the honest possibility of outliving my almost 8 year old son. I know one day I could be watching him suffer again perhaps watch him die. This changes everything for me. This is my cross to bear. And because of that, I find it easier to forgive with grace and mercy knowing what I’ve been forgiven, knowing what’s important to me now.

Broken dreams and cancer…

I remember when...

2008-05-07T08:51:00.000-07:00

He sat alone, small and frail, my bald headed boy, almost lost in our living room chair. He had his arms wrapped around his knees with sadness covering his face; he gazed forlornly out the big window. Children’s laughter, though muffled, floated through the glass, as they were running and swinging and jumping on our trampoline in our backyard. I saw the longing in his eyes. A silent tear slid down his face.

“Joshie what’s wrong?” I asked.

“I wish I could be like them. I wish I could play too. I wish I was normal.” Came his quiet words.

My heart broke in two. I hugged his pale little body.

“Let’s play U-NO.” I suggested, trying to get his mind away from his weakness.

But look at him today...

“I’ll race you!” He yelled as he took off down the gravel path towards the track meet. Stopping only to look at a huge banana slug at the bottom, he beat me. Climbing all over the grassy hill behind where I sat watching his sister compete, he was full of energy.

“Look, mom! I found a four leaf clover!” he exclaimed as he shoved a green leaf in my face. Quickly, he turned and ran back up the hill, only to lie down at the top and roll like a log towards me.

“Did you see me?” He asked as he jumped into my lap smelling like green grass with bits and pieces stuck to his jacket.

I smiled into his face. “Yes, I see you, Joshie.” I said, as I ruffled his head of hair, kissed his rosy cheeks and squeezed him tight.

I remember when, but look at him today…

My moon angel...

2008-04-23T08:50:00.000-07:00

Sadness engulfed me that morning, as it sometimes does. Still grieving the loss of innocence, hearing news of new suffering, it’ll sometimes settle on me for the day. Less frequent now, it does show up unexpectedly, but I know it’ll pass. Tears remain just under the surface threatening to take over. Sometimes I allow them to, sometimes I hold them back. I’ve become an expert at holding them back. On those days, bone weary fatigue takes over and my mind does not focus. Somehow I muddle through the day, feeling in a fog.

On this day, I sat in front of my doctor describing these symptoms. Anti-depressants, counseling and menopause were woven into the conversation. I know the sadness leaves me, so I don’t want a pill. I’ll look into counseling again. And menopause, well it’s a part of a woman’s life. There is no escaping these sad days. I’ve learned to embrace them until they are used up.

I slipped into bed that night, still sad, still teary, but hanging onto hope of a fresh tomorrow. My bed is set in the back corner of my room just under two large windows. As I snuggled under my covers, I looked up and out the window into a windy sky. And there it was, my moon angel. I blinked not sure of what I was seeing. Somehow the night sky with its clouds just beneath the bright moon created a clear, distinct shape of an angel. The face was the moon, illuminated and whole, the wings feathered and airy spread out on each side. The body hung down like a heavy robe. It was an angel, a moon angel. I looked again and that fast it was changing, moving on the winds of darkness and it was gone.

Angels are sent by God to protect, comfort and herald messages to His people. They are big, strong, powerful beings, neither male nor female. I am grateful for the reminder of God’s ever present presence in my life.

My moon angel…

I had a PTSS moment...

2008-04-14T09:21:00.000-07:00

And it surprised me.

It started as just a routine trip after school to take care of the girl’s horse, Freedom. It was one of those rare spring days, where the grass is new green and the air is spring fresh and the trees are covered with pink puffs.

I relaxed in the car with the windows rolled down, soaking up the sunshine while I read my book. I had just seen my fourteen year old riding Freedom up the long driveway towards the orchard. Joshie was climbing a tree across from the barn. Having finished mucking out the stall, mixing Freedom’s grain and filling his water trough, my fifteen year old had also settled down with a good book. Only she was perched on top of the white fence encircling the pasture where the other horses were lazily grazing.

Suddenly, I heard the galloping of hooves on the long, straight driveway. I looked up to see Freedom running rider-less towards the pasture, his tail flying behind him. I quickly turned looking up the driveway where he had come from and there was his former rider hobbling along, shaken and pale. By this time I was out of my car and running towards her yelling, “Are you all right?” “Yes” she hollered back. Her voice was trembling.

My fifteen year old had easily grabbed Freedom’s reigns, because he had run right towards his buddies in the pasture. After finally reaching his stunned rider, I began to examine her bruised body as she told me what had happened. Freedom had been calm munching some grass peacefully one minute and the next second he had jerked his head up, twisted his ears around and then began to buck in circles. Thankfully, she had fallen off onto the grass after she had flipped forward and backward a couple of times. She landed only two feet away from the blacktop driveway. Her hip was bruised. Her elbow was sore. But then she said the words, “My neck really hurts.”

With those simple words, I could feel my body being overtaken with panic. I wanted to rush her to an ER somewhere to get her neck x-rayed. I quickly called my husband. He was calm and told me to just come home. “But it’s her neck” I shouted, and all the memories of that week came rushing back.

Memories of Joshua’s neck being sore: How Josh had held his head funny, walking hunched over. How he had had trouble sleeping those five nights, obviously uncomfortable. How the pediatrician had thought it was just pulled neck muscles and the chiropractor had wanted to adjust it and I had known in my gut not to let him touch Josh’s neck. How my husband had been out of town that week coming home on a Thursday morning. How he had felt the ER was unnecessary that Thursday night. We had gone because of Josh’s whimpering, but once the Motrin had set in, Josh seemed fine and my husband had wanted to go home saying there was nothing wrong. Then the ER doctor had walked into the room and suggested we take an x-ray before we go. The picture was snapped exposing a cancerous tumor in my then four year old’s neck vertebrae. In that second with that one x-ray our lives had changed forever.

All it had taken were those simple words spoken by my 14 year old…”My neck really hurts” and I was experiencing Post Traumatic Stress Syndrome. I realized what was happening. I took a deep breath calming myself down. We drove home and she was fine. She was sore for a few days, but her neck was well. I smiled to myself that night, proud I had recognized I was having a PTSS moment. It had overtaken me at first; I had recognized it and I had not allowed it to flourish.

It’s been almost three years since Joshua’s cancer treatment was finished.

But it’s been about a year since I’ve had a PTSS moment…

I live between two worlds...

2008-04-03T07:55:00.000-07:00

It’s a weird place to be. I seem to have one foot in each world, but I want to live in just one place and I know I never can again.

Recently, I was asked to facilitate a small woman’s Bible study group, which wanted to study a book on parenting. I was asked to lead because, well let’s just say, I’m mature. My life experience is such that I’ve been parenting, training and mothering for 21 years, plus I still have two teenagers and a young son at home. I quickly accepted this humbling offer, because I’ve known I need to get back to “raising” my children and especially my young boy, Joshua. I thought this would be a great opportunity to get my focus back, but I still find myself unfocused.

I feel torn wondering just how important it is to spotlight my parenting skills now. On one hand I’m wanting my children to love the Lord and grow up to be kind, thoughtful, hard working citizens and I know I have a responsibility in this, but on the other hand I’m thinking about the relapse of cancer that seems to be all around me, watching other children relapse and their devastated parents struggle to figure out what to do next. Or I’m meeting newly diagnosed children whose parents are confused and lost.

So in one half of my world I’m talking about life and death issues concerning children. Who cares about parenting when your child is dying? Who cares about raising hard working children when you know your child doesn’t even have long to walk this earth?

Then I think of the mom’s whose children have had full brain and spinal radiation. The devastating effects of this have them spending the majority of their time in special therapies trying to help their child learn and develop somewhat normally. But their brains have been damaged. Who cares about parenting when your focus is on how to help your little girl be able to just read and write a little. Wondering how to explain to your precious daughter that she’ll never be able to have children of her own? Wondering if your baby will ever lead a “normal” life?

At first my goal in facilitating this group was to help me refocus on my children and to be able to encourage these young mother’s as they move into teaching and disciplining their young children through grade school, the teen years and on into young adulthood. Now my goal is to passionately impart to them the privilege, honor and joy they have set before them to even be able to teach and train their young children. I know some mother’s who would give anything to be in their shoes.

One of the realities I live in is filled with mother’s who focus on raising, and parenting their precious children. The other world is filled with mother’s who wonder how long their precious children have to live.

I find myself trapped between two worlds…

Inoculations...

2008-03-20T13:26:00.000-07:00

I never liked inoculating my children. I read all the books against it when my children were small. I heard the horror stories of adverse affects due to immunizations. In fact, we had a living breathing example of the DPT shot gone horribly wrong in the form of a 30 something man who roamed our neighborhood in a protective helmet. He was the youngest of 5 boys and his retired parents shared with us how he had been given the DPT shot at 6 months of age. Later that day he began to convulse ending up mentally retarded and prone to seizures for the rest of his life. He could not read or write or hold down a job. His parents had even won a court settlement against the state of California for the damages done to their son.

I’ve listened to the debate on both sides, reading the information from our pediatrician and eventually I did inoculate all of my children, but not on the recommended time table. I waited until they were older. I always agonized over the decision. Of course, when each of my girls traveled to East Africa with their father, they were covered with the full range of precautionary immunizations, not to mention malaria medication.

But now, I’m thinking, inoculations may not be so bad…

Because I belong to a Ewings Sarcoma group e-mail list, I receive many studies and reports concerning a wide variety of areas of childhood cancer. The articles range from new clinical trials and drugs to how a child with chronic pain relates to his or her parents. Recently I read a report about the mental health of childhood cancer survivors and their siblings.

In conclusion the article stated:

”Compared with population norms, siblings fare better in physical function and general health, and both survivors and siblings report better mental health than does the general population, as well as high levels of current life satisfaction.”

“We could explain our findings as ‘‘posttraumatic growth’’ or the psychological resilience that develops in coping with adverse circumstances (36, 37). That is, experiencing childhood cancer or being a young sibling of a sister or brother with cancer inoculates individuals to other negative life experiences and provides them with feelings of life satisfaction and overall psychological well being.”

Even though it’s been out of my control, all of my children have been inoculated with “life satisfaction” and “psychological well being.”

Is this one small piece of silver lining in the storm cloud? I hope so.

Inoculations…

I keep secrets from my son...

2008-03-14T09:58:00.000-07:00

(I have used initials instead of names for family privacy)

The phone rang on a late afternoon Monday. It was M… MK’s daddy. “I have something to tell you before we post it on MK’s website. There’s enhancement on her latest brain MRI. "

My mind froze. I couldn’t grasp the words. He continued, “I wanted you to know before we posted it. You said you feel like you are surrounded…”

(I felt so humbled realizing they were thinking of me during a very difficult time for them. That phone call says it all...)

No, not MK, sweet precious MK, my mind raced. MK who called Joshie one night to say “good-night”. Forever in my mind, pink tutu-ed MK, with matching boa around her neck, so bright and enchanting. Just her voice makes me smile. MK who sees and talks with angels. Please Lord, not MK, my heart cried!

First there was G…”pathology reports confirm that the mass is Ewings Sarcoma”, then L…”the pathology report confirms that the tumor is indeed Neuroblastoma”. Now MK? We still don’t know about MK. Things are looking more hopeful, but still they wait to know for sure.

All three of them victims of cancer and not only that, but two of them (G & L) now confirmed as cancer RELAPSE …the return of a monster. These parents who are no longer innocent to the meaning, what must they feel? How are they coping? Tears slide down my cheeks.

Josh knows and loves and prays for each of these children. I close my eyes and see Josh and G riding their IV poles down the hospital corridors together. I see them playing in the Josh’s House in the Trees.

During two summers at Camp Agape, L’s infectious giggle highlighted our days together. Sometimes she ignored Josh; sometimes she sought out his hugs, always her own person. L with her brown skin and round cheeks, so full of life.

MK, oh how my heart cherishes MK. How can an adult spirit live inside a three year olds body? Seemingly so wise beyond her years and yet still a child, laughing as she runs, playing with her red headed brother! There is just something about MK. Our families shared a cabin at Camp Harlow. Josh thinks she is so cute.

I keep secrets from my son. He does not know about relapse.

I’ve wonder if this is right. He’s nobody’s dummy. As we prayed together one night, he said, “Mommy I think there is something you aren’t telling me about L and G and MK.” He knows, but I am at a loss as to what to say. I don’t want to fill his heart with fear, fear of the monster coming back. Fear of losing a friend.

I was at a meeting last night for cancer families. It’s been a long time since I’ve gone to one. They are ALWAYS emotional. The topic was “Helping Your Kids Cope with a cANCER Diagnosis” (No, that’s not a typo--I will NEVER capitalize the “c” word.) Afterward, I spoke privately with the counselor who led the discussion asking her for advice on what to tell my son. Basically she said to tell the truth, because kids are smart and they know something isn’t right and their imaginations will fill in the blanks with wild ideas. The truth is best, she said.

“But what about filling him with fear?” I asked. "The fear of the cancer coming back?"

“Well, you know relapse is rare. Just tell him it’s rare and you don’t expect that to happen to him.” She answered.

“RARE!” I exclaimed! “It doesn’t FEEL like it’s RARE! I see kids relapsing all around me!”

“I know it feels that way." She replied. "Maybe you need to find a balance. Spend time with non-cancer families too.”

I was quiet, knowing that I do spend more time with non-cancer families than cancer families. I don’t expect Josh to relapse, but that thought is always there. Constantly niggling in my mind, hanging around like an obnoxious house guest. You want to just shove them out the door, tell them to get lost, give them a quick boot in the behind…but somehow they creep back in…

So, I’m waiting for the perfect moment, asking the Holy Spirit for the words and waiting for Josh to be ready. He feels so empowered by God. He feels like he is a miracle, a testament to God’s merciful love and healing power. Will the truth take that away from him? Or is it me? Will I transfer my fear onto him?

I need wisdom.

I keep secrets from my son…

The Holiest of Holies...

2008-02-27T13:07:00.000-08:00

I lie upon my bed,
Trembling.
Lord, I enter this place,
Sacred and true.
Your presence penetrating me,
A place inside my heart.
Jesus, my high priest,
You’ve opened the way.
I kneel and cry,
Inside my mind.
I prostrate myself before your Throne,
Hiding under your wings.
I am surrounded with sadness, oh Lord,
It will not depart from me.
I am surrounded by suffering, oh Lord,
Always before my eyes.
It tears at my soul.
Heal them, oh Lord…
These precious little ones.
Heal him, oh Lord…
My son.
Relieve these besieged parents,
Who attempt to understand.

I enter the Holy of Holies,
I find You there.
I feel your touch,
Safe and peaceful.
Your tenderness surrounds me,
Anxiety and fear fade away.
Finally, sleep washes over me.
I will search for You again,
Tomorrow,
As I cross the threshold of…
The Holiest of Holies…

In ancient Jewish faith, there were two rooms to the tabernacle - the Holy Place and the Holiest of Holies. The Ark of the Covenant and the Mercy Seat were housed in this sacred space, the Holiest of Holies. Because God’s Holy Presence was there, only the high priest was allowed to enter into the Holiest of Holies.

A gold, purple or red veil separated this place from the rest of the tabernacle. When the priest entered, he wore a beautiful breastplate embedded with twelve stones. Sown into the hem of his robe were silver bells that rang when he went behind the veil. The continuous ringing of the bells helped the people know that he was still alive, while he entered the Holy Presence of God.

In the Christian faith, Jesus Christ’s birth, death and resurrection has opened the way for all believers to enter into His throne room, to stand before God in the Holiest of Holies. I enter this place each night in my mind, heart and spirit.

This is how I sleep. This is how I cope.

I am living in a field of landmines...

2008-02-07T15:43:00.000-08:00

It is called childhood cancer. It’s a field fraught with fear and anxiety. It’s a field with no end in sight, at least not on this earth. Cautiously I take tentative steps as I navigate through this field. Sometimes it looks to be full of fragrant and colorful wildflowers or rolling hills of luscious green grass. Once the field was full of ancient, but dark imposing trees, another time it was a grey and barren wasteland. Once I spotted a bright rainbow gracefully arched across the misty horizon, a sure sign of hope.

But always, no matter what this field looks like, it is full of landmines hidden away ready to explode at the least provocation. One false step and I or someone I love could be maimed or blown away. One false step and everything changes. Walking with me are other childhood cancer families. Some skip happily along, others walk hesitantly holding their breath; still others refuse to move standing stagnant and frozen. And then there are those who one day suddenly step on a mine. The rest of us in the field are blown off our feet from the sheer force of the blast. We huddle together, crouching flat against the grass and dirt, praying for protection, praying for the victim.

It doesn’t matter if we think positive thoughts or have good karma and energy. It doesn’t matter if we have unwavering faith and constantly utter powerful prayers, we still could step on a landmine. There is no rhyme or reason as to who will be next. Each of us knows this with such assuredness . So we journey along together, these families who are mysteriously intertwined with mine. We encourage each other, support each other, and love each other, because we understand the dangers all around us. We know the intensity of uncertainty. We acknowledge the thin thread of hope we all cling to. We just know…

There are others who stand outside the field, who are not allowed in. They linger on the borders of the field cheering us on, watching and praying, but never having to navigate through the landmine laced field of childhood cancer. And for that, I praise God.

We are living in a field of landmines…

My life is boring...

2008-02-03T15:32:00.000-08:00

I visited with one of my neighbors the other day. I hadn’t seen much of her for quite a while. We’d never had what you would call a relationship like going to coffee or spending time together while our kids played. We’ve chatted with each other, standing on the street curb on a warm summers day or visited during our neighborhood’s annual garage sale. She has a husband and one child. Her boy is a few years older than Joshua. I knew she worked full time and that she came from a large family… nine children, I think. I remember how she showed up at our front door a day after our house burned on November 17th, 2000 with a basket full of cookies and some muffins. She was uncomfortable with our “tragedy” and mumbled how she wished she had more to offer us. I could see her compassion.

The house fire was scary, but I got all the children out and we were physically safe. We rebuilt and added on; I even got a whole new kitchen out of the deal! It took eight months. Joshua was six months old at the time. Somehow the girls continued on with their homeschooling and took care of him, while I ran back and forth from the rental house to our burned house dealing with contractors and trying to make a million different decisions. My husband was overseas for an entire month during the rebuilding. It was emotional and frustrating, especially when dealing with the insurance company, but we got through.

Then real tragedy struck when Joshua was diagnosed with cancer on October 21st, 2004. My neighbor stopped by with food again and a card this time. I don’t remember what she said or what she wrote in the card. I don’t remember what the food was, but I do remember the look in her eyes, pure fear and sorrow. I’m sure she was thinking about her own little guy. I did tell her about the web site, actually I told everyone about the web site, so I didn’t have to keep repeating the current status on Joshua during the year(s) of crisis. I was lost, but so thankful for that website.

So…I ran into her again a couple of weeks ago. It was a Sunday morning, a day I usually don’t go jogging, but I had time before church and I just needed to get out. I love the fresh, cold air on my face. I don’t mind the rain, which is a good thing, because we certainly have a lot of rain here during the winter months. Recently, I’ve been waking up with nightmares full of terror. They’re usually short dreams, always different, but they are so intense I startle awake with heart pounding and adrenaline coursing through my veins. When this happens, if it’s not in the middle of the night, I get up and release the tension with a jog/walk.

That morning, as I came around the corner after having powered up a huge hill, I saw my neighbor on the other side of the street with her small, long haired dog. I called out her name. She stopped and hugged me. We talked for a full fifteen minutes catching up on each other’s lives. But, I discovered, she was already knowledgeable about my family, because she still read Josh’s web site. She asked me a few questions about Josh, and then I wanted to change the subject, so I began to ask her about her life. Her son is in the fifth grade now, she told me. The U-haul I’d seen in front of her house the other day was her niece moving out. She and her husband had let the niece live there for a few months. She talked about the challenges of opening ones home to a young relative. We laughed.

Then she said, “My life is boring, actually. It’s just plain boring and I like that.” I countered with, “Boring is good.” And we parted.

I’ve pondered on those words for a while now. “My life is boring.” Maybe I spend too much time thinking, but that’s my nature. I’ve realized I want my life to be boring too. I don’t want to live a life filled with crisis after crisis. Is that what’s it’s been?...A rocky beginning to our marriage, a very premature first born child, a major job change when my husband turned forty, a house fire and childhood cancer? God has brought us through all of these tough times. But what about boring?

I’ve never liked that word, boring. I don't allow my children to use that word or any derivation of it. I’ve always told them if they say they are bored, that meant they were a boring person. I’ve reminded them how I can always find something for them to do if they tell me they are bored! And suddenly I realize…I’m bored! There has been no crisis for a year now. I know others in crisis, but not my family. I do not have to go to school with Josh this year. His teachers and the staff know how to care for him. The tyranny of the urgency of treatment and side effects are over or seem “normal” now. Two of my children are living away on college campuses and are thriving. I’m not working out side of the home. And I have margin in my life. The coveted margin…a time for healing, of which I wrote about in one of my earlier blogs. Now I find myself a little bored...with time on my hands.

I jog and climb the hills in my neighborhood. I grocery shop and fix dinner. I pick up the kids from school and drive them to their activities. I reserve Wednesdays for my hiking group. I read books, write and meet with girlfriends.

My life is so boring; I’ve gotten involved in a small Bible study again with women who are helping me heal and grow in my faith. My life is so boring; I plan to start serving lunches for families whose children have cancer and are being treated at the hospital where Joshua was treated. My life is so boring; I hope to help NW Sarcoma Foundation raise money for sarcoma research. My life is so boring, I may...where ever God leads me.

My life is boring…

Who knew boring would be so good.

I thought I was ready...

2008-01-24T17:29:00.000-08:00

I thought I was ready to get back to my life the way it was BEFORE cancer was diagnosed in my little boy. But I discovered my life will never be what it was.

I thought I could jet off to Africa like I did in 1997 and 1998 serving the poorest of the poor, helping to love women and children who were and are suffering beyond anything we in America can really understand. Back then we had just the four girls. It was difficult to leave them, but I knew it was right, I knew they were in good, capable, loving hands for the three weeks (each trip) I would be working alongside my husband in eastern Africa. Our youngest daughter was only four years old and yet I had peace as I traveled far from home.

I havn’t ministered in Africa since the late 90’s, because God blessed me with my “surprise grand finale”, Joshua, in 2000. My husband traveled to the eastern African continent often, bringing resources for the nationals who work for the non-profit ministry that allows them to help their own people. It was and is vital work. It’s a ministry that has flourished and grown, changing lives and making a difference. Then in 2004, Joshua was struck with childhood cancer. Africa and our work there were shoved into the background, no longer a priority.

Fast forward three years after cancer and with life settled down and calm again, I thought I was ready to go. I thought it would look and feel and taste the same as it had before. Back when life seemed more innocent. I felt such a strong desire to minister to the suffering mothers, to share my Joshua journey and all God had done, but I was wrong. I faxed in my application for the trip, a sure sign of my commitment to go, but... I felt no peace. I wrestled with God all that night and throughout the next day, finally realizing, I wasn’t supposed to go.

I discovered emotionally and mentally and yes, even spiritually, I am still healing. I was disappointed in myself and in my reality. Why isn’t life the same as before? Why does the past trauma still seem to have a grip on me? I can’t leave Joshua. It’s that simple. It’s not the time or season in my life to go. I always want to be willing to be willing and open for what God might have for me. Sometimes it’s hard to accept the change. I am not who I was before childhood cancer. I need to give myself grace.

Joshua is such a gift in my life. My girls are gifts too, but in a completely different way than Joshua. I can’t put it into words really. He is God’s message of His immeasurable love for me. Josh is my love picture. I thought I was ready, but I wasn’t. It may never be right for me to go again. But that’s ok, because I am serving here in my home, with the precious women God has placed in my life, with my children. I am not the same, but I am still serving.

I thought I was ready...

Maybe one day, I will be…

TAKE JOY...

2008-01-04T20:12:00.000-08:00

Recently I found these words, which I had discovered last year and saved. I should have posted them during our Christmas season, but having only just found them, I decided to post them NOW as the meaning is relevant anytime of year.

Again the subject has to do with JOY. If you have a moment, I would love to hear your thoughts about JOY...about this poem...please add your comments.

Thank you in advance.

"I SALUTE YOU!

There is nothing I can give you, which you have not;
but there is much, that, while I cannot give, you can take.

No heaven can come to us unless our hearts find rest in it today.
Take Heaven.

No peace lies in the future, which is not hidden in this present instant.
Take Peace.

The gloom of the world is but a shadow; behind it, yet, within our reach, is joy.
Take Joy.

And so, at this Christmas time, I greet you, with the prayer that for you, now and forever, the day breaks and the shadows flee away."

From “With Christmas Greetings” from Greville MacDonald, son of novelist George MacDonald, and Mary MacDonald

Happy New Year...

2008-01-01T19:45:00.000-08:00

I bring no resolutions, no goals, no plans into this year marked 2008. With a heavy heart, I welcomed the turning of time after only just having learned of the death of yet another pediatric cancer child. Her death was not expected nor looked for by me. I was surprised and saddened. She was but eight years old.

Recently I gave my testimony. It was arduous for me as I prepared my words to share. I felt I had literally wrestled with God for five months as I grappled with what I was to share. I had much to process, tough questions to ask and answers to come to grips with, and I longed for calm. I finally came to a point of revelation, peace and understanding.

On the day of my sharing with a small group of dear women, I felt a freedom I never have felt before. I realized I could trust God with my son, my daughters, my husband and with my life. After all, whom else could I trust? Logically, there is no one else nor anything else to trust. I know my own fickleness. I know man’s faults with his lack of full knowledge and wisdom. I know medical science’s barbarous ways. How comforting to know I have One whom I can trust. This One has created every molecule of my son’s body and directed the making of our unfathomable universe. Why would I not trust Him?

What will 2008 have for me? What will this year bring my children…my husband…my country…my planet? I do not know, therefore, I bring no resolutions or goals or plans. I only walk into this New Year with my eyes wide open and my heart full of love. I walk into this New Year with a contented joy and gratitude. I walk into this New Year with no guarantees of a “happily ever after” at least not here on this earth. I do not step into 2008 with fear and trepidation, but rather with the assuredness of there being pain and sorrow, but also untold joys and laughter. I read in the Bible man plans his future, but God directs his steps.

And so I am being led into this New Year 2008…

How to lose a child...

2007-12-14T09:02:00.000-08:00

Unimaginable.

However; I find myself thinking frequently about the death of a child during this time of year. I’m not morbid. It’s because I know four families that have celebrated their first Thanksgiving without one of their precious children. And they will soon be celebrating Christmas without them too. Then they’ll march right into a New Year missing a piece of their heart, whether they want to or not. Life moves forward. It doesn’t stop, just because they’ve been devastated by the loss of their baby. Holidays and celebrations swirl all around them, yet they are grieving a horrible loss. I cannot imagine.

I watch how each family grieves differently. One family has expressed how much they are looking forward to the comfort of being with family and friends during Christmas despite the huge hole that will be felt by all because their six year old son no longer exits on this earth. Another family has secret plans for Christmas deciding they will NOT put up a tree, exchange gifts, or go to family or church functions. The pain of their missing six year old daughter is so great; they want to do something absolutely the opposite of what they used to do. I know another family whose child has been gone two years now. Thanksgiving Day is spent serving the homeless. There is still no tree or decorations at Christmas. It must be so painful. I cannot imagine.

A part of me grieves with each of these families. Yet, I cling to what I have knowing it could all change in one second of time. I am more fiercely determined to hold onto every moment, to love up each of my children, making sure they know how proud I am of them, how I cherish their uniqueness. My heart bursts with the depth of love I have for them stronger than I ever thought possible. All the time, in the back of my mind I know there is no guarantee, I too could lose a child. But for now, I will focus on...

How to love my children...

Missing joy...

2007-11-28T14:21:00.000-08:00

Like a silent ache, joy has been missing in my life. It’s been absent for a long while now. Don’t get me wrong. I feel happiness. I can be seen smiling and even laughing, but it’s the joy I lack. It’s the joy that is lost. Joy is a deep down in the gut feeling. It’s an assuredness…a soundness. You either have it or you don’t…and I’ve been missing it. It grabs the soul. It’s solid and real. Joy is different than happiness and laughter, being their foundation. It’s the core for the wellspring of life. It is a necessity to the spirit like water to the physical body. For a time grief, sorrow, heartache and pain have crowded it out. I’ve longed for it, searched for it, knowing it was missing, because I’ve had joy before. I know of its depth and solidness…its truthfulness. There is nothing like joy.

“Will I ever feel joy again?” I croaked in a quivering voice to my councilor. He was silent.

I’ve been missing joy, but recently I felt the stirrings of its return. A tiny speck of joy. It started every so slowly with a smile, a lightness of heart. I wasn’t surprised by it. I welcomed it. I was thankful for it, but I mustn’t get greedy and demands its fullness. Like a tiny mustard seed buried in a garden, it is there, unseen, known only to the earth. I know the potential of its growth. I must be patient for its completeness. I must not stifle it. I must nurture it, allowing it to grow. So I will wait with an open soul.

Hoping to be consumed by joy…

HAPPY THANKSGIVING 2007

2007-11-15T21:25:00.000-08:00

How can I even begin to express the gratefulness of my heart?

As I reflect on these past three years and remember the suffering, trauma and tears, I can’t help but see the flip side: peace, hope and love.

I’ve known Jesus Christ and tried to walk with Him since I was 5 years old. Sometimes I walked very close by His side. Sometimes I walked ahead or behind Him. One time I even ran away from Him for a couple of years, but always He was there pursuing me, as the gentleman, never forcing Himself, yet allowing my soul to sense His presence.

But never have I realized how much Christ loved me and my precious son and husband and daughters as I do now. Do you know how much Jesus loves me and my family?

Ephesians 3:17b-18 says, “And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the LOVE of Christ…”

And I KNOW this LOVE, because of YOU!

You have:
· cried with us
· carried us
· served us
· waited on us
· given to us
· sacrificed for us
· prayed for us
· blessed us
· loved us
· mourned with us
· sat with us
· laughed with us

YOU have demonstrated Christ’s LOVE beyond anything I could have ever imagined or believed would be or could be possible. YOU have been Jesus’ hands and feet expressing His LOVE. And you continue LOVING us, even today.

The verse goes on to say “…and to know this LOVE that surpasses knowledge-that you may be filled to the measure of all the fullness of God.” Ephesians 3:19

I am FILLED with the fullness of God, my heart full of gratitude and LOVE, because of YOU.

Thank you and have a very blessed and HAPPY THANKSGIVING!

By God's grace...

2007-11-01T19:31:00.000-07:00

How many times have I spoken those words? As a Christian I understand how crucial God’s grace is, how pivotal it is in our lives as well as the history of the world. As a Christian I know I am saved by His grace. I know Jesus Christ came to this earth, fully human and fully God freely giving up His life for the world. This is the foundation of Christianity. It is the foundation of my life. But now, I find it difficult to speak those words.

How can I say it is by God’s grace Joshua is alive and happy and well today when the flip side to that statement is God’s grace didn’t cover Paul’s family or Maggie May’s or Rachel’s or Taylor’s or Lexie’s or David’s or Jackson’s or John’s or Kory’s or most recently…Labri’s? (I could go on and on with names here)

Why didn’t God’s grace fall on these children and their families? Why do their parent’s arms ache to hold them one more time? Or long to hear their laughter? Rachel’s mom often writes, “We have a Rachel shaped hole in our hearts?”

Just two weeks after his death, Paul’s mom wrote “I’ve been trying to find a word to describe how I feel, and the best one I can come up with is: Raw. I feel freshly wounded, but without hope of the wound being healed. It’s an interesting place: I can’t be healed (on earth) by being reunited with Paul, but I don’t want to be healed without him. Healing would mean that somehow I’ve “gotten over” Paul. I’d rather hurt for the rest of my life.” She knows she will be reunited with Paul in heaven, but it’s the here and now, the aching and sorrow and tears and “rawness” that must be endured today.

So where is God’s grace for these broken parents?

I’ve decided, it must be a different kind of grace. As I read their websites, talk with them and watch them, I see a kind of grace that gets them through each day. I see a kind of grace that gives them strength to somehow go forward, to suffer, longing for the day of their reunion with their child in eternity. I see a different kind of grace, which propels them into taking great action in their child’s name, honoringthem. I see a different kind of grace where memories comfort their forever damaged hearts. There will be no perfect wholeness for any of us, until heaven.

So, how can I celebrate God’s graciousness of my son’s life here on earth, right now, while grieving the loss and seeming lack of grace for yet another child who has died of cancer? I guess I’m asking, why the death of one and the life of another?

By God’s grace… I will be attending Labri Dirkse’s memorial service this Saturday. She was twelve years old.

Three years ago today...

2007-10-21T09:09:00.000-07:00

I found myself in a hospital emergency room with my husband, staring at an x-ray clearly showing a tumor in my son’s neck bone. I felt elated to have found the cause of his pain, naively not understanding what lay a head. A pediatric oncologist mentioned the c-word, as she walked into our room and then we heard it again on the phone spoken by our pediatrician. A biopsy was done confirming what I had tried to pray away. Cancer had invaded my four year old son’s body. It was a defining moment. Everything around me disappeared with the truth of the doctor’s quietly spoken words. The small waiting room seemed to shrink and fill with darkness. Tears streamed down my face. Fear filled my heart. My husband began to talk, but I couldn’t hear his words. And I ran from the room trying to get away. Impossible. Time stopped, but the world kept right on ticking.

The hours and days ahead were full of confusion, anger, fear and loss. The learning curve seemed insurmountable. So much information was thrust my way, I was numb, my mind felt like mush with the details running into each other blurring everything.
New faces constantly entered our lives. I examined every move the nurses made finding myself in hyper-vigilant mode. I cautiously watched the childlife worker, as she played with my son. Various doctors came and went and there was always the medical student hanging around, fascinated, yet unsure of their abilities. I felt I couldn’t trust anyone. After all, who were these people asking me the same questions over and over again? Who were these people so interested in my son?

A day or two later my husband and I sat in another tiny windowless room with a nurse and two doctors, reading through a long list of side effects from the treatment they were proposing. My stomach ached as we went over each item. Wasn’t there a better way? This is so barbaric. How could I allow this? They wanted our signatures. We signed the papers and were left alone. Huddled together, we felt devastation and exhaustion. Too soon the chemo began, but I left, fearful of what was to come. I drove home to be with my girls. My husband stayed cheering on the toxins. He was sure they would kill the monster. After eleven days of scans, a biopsy, surgery and chemo, we finally went home. But our journey had just begun.

Today…three years later… Joshua is alive. Today he has hair on his head and eyelashes with eyebrows. Today he laughs, is full of energy and has a twinkle in his eye as he teases his sisters. Today he is in second grade reading and working sums. Today he plays a mean Star Wars video game, sleeps in his House in the Trees with us and loves Legos. Today he goes to birthday parties and has friends over. Today his smile fills my world. Today my world is full of light.

Yet, there is an underlying sadness, the grief of other children lost, an innocence gone. Today I am a different person. I was forced to enter a world no one should ever have to enter…the world of childhood cancer. The impact is forever. Three years ago today my world went black and yet…there was a tiny pin hole of light. I just couldn’t see it. The darkness seemed overpowering, but it wasn’t. Three years ago today, I thought I would never be able to breathe again. But I am breathing. I thought I would never stop crying, but I have.

Three years ago today my world, my son’s world and my family’s world changed forever…but we are still standing.

Three years ago today...and we are so grateful...

Our first date...

2007-10-12T11:05:00.000-07:00

I was 19 and you were 23…babies and yet we thought we knew all about life, as we sat there eating pizza listening to an organ play its classic cartoon music while bubbles danced in the air. Is that restaurant still there? I didn’t eat much; I was so enamored by you, the college graduate who wore three piece suits to work. You were a 4.0 tennis player, enjoyed soccer and water skiing, but I could beat you down the ski hill. We went to a movie after dinner, The American Hero starring John Ritter, and we laughed together. Do you remember? You drove me home in your orange sports car gently kissing me goodnight on the front porch. I floated into the house, knowing I would marry you.

Now twenty-eight years later, we are going away for a weekend, our first time away… alone…for three years…three years in crisis mode. With twenty-five years of marriage together, we have walked through many fires: a premature first born, a major job change when you were forty, the demands of five children, and now childhood cancer. We smell of smoke, but we are not burned. We are breathing again. We are healing. We are different people. How could we have known back then the crisis’ we’d face? The difficulties and heartaches? Now we know more about life with shared pain and shared joy. We are secure in our commitment to each other. We are secure in our commitment to God…no matter where our journey takes us.

It will be a weekend for us to just BE. A time to be still. A time to focus on our relationship as man and wife, as individuals. A time to search out and understand each other’s needs. A time to reflect on the past, while looking towards the future. I am almost giddy with anticipation of our time away, yet nervous. Who are you now? Who am I now? I want to discover you again.

Our first date…

The boy/man...

2007-10-08T08:15:00.000-07:00

He swaggered down the sidewalk, with two giggling girls on each side of him, as he screamed out obscenities. “Blank the weather! Blank the rain! Blank, blank, blank!” All the while looking at Josh and me out of the corner of his eye, watching our faces, thinking he’s funny, loving the attention, hoping for a reaction. This boy/man with soft whiskers on his face and scruffy blonde hair and low rider jeans; a burning cigarette dangling between two finger on the hand that was casually thrown over the shoulder of the girl on his right; oblivious to the emotions or needs or pain of others. Self-absorbed and self-focused, not really caring about anyone or anything, I sensed his apathy.

I reacted, wrongly, of course, asking him to please watch his mouth around my son. My mind flew over all Josh has been through, his life, his pain and damaged body. I thought of his courage and strength of character. I admit, I was angry with this boy/man and my words and tone betrayed the rage. Of course, the response I got back was full of venom with more obscenities directed at me. What else was I expecting?

His image and our interaction haunted me through out the day and on into the next. My heart actually hurt for this boy/man, who obviously hid under an outward appearance of bravado laced with the words he thought gave him power and meaning. A rebel, full of self hatred, and disdain for the world, what had he seen? What had been done to him? Were there any adults who cared about his life? Had he experienced unconditional love?

I began to create a new scenario in my mind, of me quietly walking towards him, asking him how he was, about his day, and who he was. I could see myself driving him to the hospital, all the while telling about my son, Joshua. We would enter the pediatric oncology floor and like the ghost of Christmas present tour unseen from room to room. I’d know each child’s name and how old they were, giving a simple description of the type of cancer they fought. He’d see their sad, hollow eyes peeking out of pale faces and hairless heads. Some would be sleeping the exhausted chemo sleep. Some would be in pain and crying. Others would be smiling from skin and bone bodies with feeding tubes taped to their faces as they played a board game with an adult. The stories would unfold. And all the while, as the boy/man and I observed the pediatric oncology floor of the children’s hospital, I’d watch his face out of the corner of my eye, hoping to see the bravado melt away, the self-absorption dissolving into the realization of another’s pain. The apathy growing into caring with the sudden knowledge of action and purpose energizing his body and soul. The knowing deep in his being would become real; he could make a difference in this world, no longer hiding behind his hidden hurts.

And I’d smile knowing this young boy/man had become, in that instance, a man…

If you were unable to watch Extreme Home Makerover about Boey in Corvalis, OR, please go to
http://dynamic.abc.go.com/streaming/landing and then click on "launch the player"

She will melt your heart...

Boey...

2007-10-05T10:39:00.000-07:00

Sunday, Oct 7th at 8/7c tune is to the ABC show Extreme Makeover: Home Edition.

This week's show will feature the Byer family of Corvalis, OR.

Janessa "Boey" Byer was diagnosed with Rhabdomyosarcoma. This self described childhood cancer "warrior" will be the star of the show.To view a preview of the show visit: http://abc.go.com/primetime/xtremehome/index .

www.jenessabyers.com

Margin...

2007-10-03T09:28:00.000-07:00

It’s an overcast morning in October and I’m sitting alone in my home with nothing but free hours stretching ahead of me. I feel as if I can breathe again.

Years ago I read a book titled Margin by Richard A. Swenson, M.D. It was all about leaving room in your life, having a cushion, space, instead of running from activity to activity. He talked a lot about “the tyranny of the urgent”. It’s a hard concept to grasp here in America, because we have a tendency to fill up each second of our day. And I see so many running from fire to fire, trying to extinguish them, being controlled by the urgent. Or I see them consumed by shallow, unimportant details, such as the perfect color paint for their living room. Or scheduling their child’s life so full there is no time for them to just BE. I am guilty of living this way as well. It’s hard not to, but I remember reading that book and LONGING for Margin in my life.

At that time, I was raising my four girls and homeschooling them, so my Margin, if any, was minimal. Now I didn’t have to homeschool them, it was my choice. Our oldest was born three months early weighing in at 1 and ½ pounds. She spent four months in the Neonatal Intensive Care Unit. Her life is truly a miracle. By the time she was school age, it was obvious she was quite delayed. I knew she was not mentally or physically ready for school, not even emotionally as well. I began to examine my options. Finances were tight, making private school unreachable and homeschooling seemed the best choice. So began our lifestyle, which carried on for sixteen years, our school growing as each child came along. It really worked for our family. It was a joy, a challenge and a blessing.

A first homeschooling was easy, but each year brought new challenges as the children grew and matured and as new babies were born. I never had easy pregnancies, always feeling flu like for nine months; it was hard to function well. Some years I filled the girl’s day with so many fun and “worthwhile” outside activities, that we were rarely home. By the end of the school year, I was exhausted from trying to keep to my self imposed “schedule”, which ran at break neck speed. The next year would be calmer, but then I’d forget my lesson and fill up our time the following year. I also made another crucial mistake. I didn’t plan “down time” for myself… the mother, the teacher, the organizer, the family manager. Over time, I began to burn out, but didn’t realize it until crisis hit in October 2004.

If I had only a little Margin before, now I had none as we were sucked into the world of childhood cancer. When in survival mode, nothing exists outside of endurance. This lasted for approximately two years. One year filled with treatment, one year dealing with the medical damage done by treatment and as we entered the third year, I saw the dust beginning to settle. I discovered emotional issues emerging, which had previously been buried, a bone deep fatigue and the crucial need for processing, processing, processing…hoping to make sense of it all. Homeschooling was out of the question and I enrolled my three youngest in a unique private school.

Last school year, I spent each day on campus with Joshua taking care of his trach needs, monitoring his recess time for safety and g-tube feeding him at lunch. School was a new experience for him and for me as well. He’d been isolated spending a large portion of his life in the hospital. I’d never sent a child into the capable hands of others, let alone a child with medical needs. The year went well, Joshua thrived as did the girls and I slowly began to relax.

This fall I trained the school teacher’s and staff how to care for Josh and what to watch out for concerning his breathing and neck safety. I let go and let other’s step in. I cannot begin to tell you how awesome, how caring and loving his teacher and the principal of his school are. His teacher is extremely comfortable with his trach care. The principal personally takes Josh and his class to the park for each recess all the time watching out for Josh’s neck safety. The principal has even eaten lunch with Josh, helping to cut up his food making sure he doesn’t choke. The tears in my eyes, as I write these words, tell you of my deep appreciation for the people who are Cor Deo Christian Academy.

And now, I find myself with Margin in my life. The very thing I had longed for years ago. I’ve always been a doer, task oriented, loving to check off those “to do “items on my list. After all, isn’t that how we know our worth? By the things we accomplish? How wrong I have been. My worth comes from my Creator, the God of the Universe, who happens to know every molecule of my body. He knows my thoughts, my heartaches; He’s seen every tear that has trailed down my cheek. He has watched me filling up my time, touching me with His quiet voice warning and loving me deep in my conscious, yet always the gentleman, never forcing Himself on me.

My husband has cautioned me NOT to fill up my Margin. I heed his warning, but it isn’t easy. Hours stretching before me, sometimes filled with grocery shopping or laundry, but mostly filled with writing, or contemplating God or watching the burnt orange leaves fall from our trees in the backyard or trying to capture the color of the sky on paper or watching squirrels scamper from tree to tree.

I sense healing. I breathe deeply.

I think I’ll take an autumn walk through the hills of my neighborhood now…

Ah…Margin…

The day in the life of an esophageal dilation...

2007-09-25T16:13:00.000-07:00

e·soph·a·ge·al pertaining to the esophagus.

e·soph·a·gus a muscular passage connecting the mouth or pharynx with the stomach in invertebrate and vertebrate animals; gullet.

di·la·tion the act of expanding or the state of being expanded.

tra·che·ot·o·my Surgical incision of the trachea through the neck, as to make an artificial opening for breathing.

G-tube A tube inserted through a small incision in the abdomen into the stomach and is used for long-term enteral nutrition.

The morning begins early, “’O dark-thirty” to borrow an idiom from our friends. The night before I’ve made sure Josh eats an adequate dinner, gets to bed early with a generous g-tube feed just before he falls asleep. This gives him a little extra in his belly, as he won’t be able to eat the next day until late afternoon. Sometimes an anesthesiologist will call that evening to discuss Josh’s sedation making sure I know he cannot eat and drink for six hours before the scheduled time of his procedure. Many times they don’t call, seems we are “pros” at this and therefore; don’t need a call.

Yes, I have a favorite anesthesiologist, one who really cares about Joshua, and we always request her, but rarely is she able to attend his dilation. This can make it tough if I come across a “new to us” doctor who has an ego. I know how Josh responds, I know what he needs, after all we’ve gone through this procedure over 100 times by now, but if I don’t approach a “new to us” doctor in just the right way, I can alienate him. I WANT the anesthesiologist on my side, so I tread lightly. Sometimes, if they are “new to us” doctors, they’ll take one look at Josh’s enormous file/records and ask me how we handle the sedation. This endears me to them as I know they have come to the realization of the knowledge, heart and soul and power of an involved, but not overbearing or hysterical mother. Some doctors really respect and rely on the mother, truly listening to them. Some doctors do not. Maybe they’ve had a dreadful experience with a mother. Maybe they just have a huge ego.

I wake first, letting Josh sleep, while I get myself dressed and ready for the day. Then I rouse Josh, unhook him from his mist machine, give him his Levoxyl medication, and pack him in the car fully dressed in his pjs and socks. I love the fact Josh has NEVER had to wear hospital pjs. This has helped him feel some control and comfort. We drive the half hour to the hospital, park and walk in and up to the third floor where we check in with Edna in Pediatric Admissions.

Edna is a kick! She’s kind, loving and always has a cheerful smile on her face. And if I ask her, she’ll begin preaching and sharing scripture verses with me just for encouragement. And oh, can she preach! She loves seeing Joshua. Once we’re checked in there, we head down the hall to Pediatric Short Stay. The nurses there are phenomenal, especially Nurse Susan. They are so happy to see us and ask how we are, getting us into a room; usually a private room, and then Nurse Susan comes up with a fun game for Joshua to play using medical “stuff”. She’s very creative. Lately, though, he’s not been interested preferring to watch cartoons.

I fill out all the necessary forms; which I could do in my sleep. Josh is weighed, has his temperature and blood pressure checked; then is sent back to his room to relax in front of the TV. Sometimes he plays video games in the playroom. Most of the families in Short Stay are having minor procedures done, such as ear tubes, tonsillectomies etc. Once, an irate mom was at the desk giving the nurses a hard time. She wanted to know EXACTLY when her child would be taken in for ear tubes, after all they’d been waiting for hours and her child was hungry. The nurse tried to explain she didn’t have control over the doctors and how much time they took for each procedure and sometimes they get backed up. I watched and listened as they argued and bantered back and forth, nurse and mother. I remembered back some 16 years before when my first born was getting ear tubes. Oh, the worry of sedation and doctors and hospitals. Now I have to laugh at myself back then. How naïve I was and yet my response was so normal. Finally the mother furiously left the nurses station and one of the nurses mumbled how she’d LOVE to introduce that mom to Josh knowing all he’s been through, so the mom could see a really “sick” child compared to a child just getting ear tubes and maybe she wouldn’t be so difficult. I felt torn between both sides and I quietly said, “It’s all a matter of perspective. Perspective is everything.”

After a while, we’ll have our reunion with Josh’s GI doctor. We catch up on each other’s lives, he asks Josh how he’s doing, asks me how Josh is doing, then I sign the consent form. I’ve never been able to stop the cringing in my gut when I sign that form, always hoping and praying everything goes well. Soon Josh is wheeled in his bed down to the second floor into the endoscopy suite. There Josh is met by more wonderful people who know him, have taken care of him and who really enjoy him. That’s where I meet the anesthesiologist sometimes for the first time. Slipping the gas mask over his trach tube, they always let me stay until Josh is completely asleep. I so appreciate this, more than I could ever express. Once he’s asleep, I kiss his forehead, say a prayer, ask everyone to take good care of him and walk out into the hallway to wait. It is ALWAYS emotional demonstrated by my inability to stop the lump in my throat and tears in my eyes. Never have I been able to just breeze through.

Waiting is the worst part and waiting alone is difficult. That’s the way it is now, since esophageal dilations have become routine. My husband has work, the girls are in school and I sit there alone in the hallway, sometimes pacing and quoting scripture, sometimes sitting in the puffy chair just down the hall a ways. I watch people walk by, sometimes I see nurses or doctors or childlife workers I know from Josh’s past care. Sometimes I try to read a book.

Usually, I see the doctor step out of the suite looking for me within half of an hour. A few times they’ve been in there a long time, too long. This is when I know something hasn’t gone well. Josh has an esophageal stricture (a ring of scar tissue in his throat) due to the radiation treatment he went through in February-March of 2005. This treatment was to save his life, killing any residual tumor discovered in his neck vertebrae. Unfortunately, it also caused damage. When the dilation hasn’t gone well, it’s because the stricture has shrunk down to a very small opening making it difficult to dilate.

I’ll never forget the words of one of our pediatric oncologists as she was visiting us in the pediatric ICU. We had just discovered the esophageal stricture and the tracheal stenosis (swelling in his airway), both damage caused by radiation, which required the doctors to give him a g-tube, so we could feed him and a tracheotomy so he could breathe. Her eyes were full of tears as she looked at me and said, “Sometimes the damage we cause through treatment for cancer is horrendous. Only you can tell us if it was worth it or not.” I contemplate these words often.

The GI doctor always shows me the picture he snapped of Josh’s esophagus before and after dilation. We discuss a little more about Josh, how there’s nothing in the medical world to heal his throat, how we just need to continue dilating so that the esophagus does not close completely. If this happened we would have to do emergency surgery and esophageal surgery is very tricky. After consulting numerous doctors about the stricture, these words stick in my mind, “Esophagus tissue is very unforgiving.” In other words, we could try to “fix” it with surgery, but there’s no guarantee it would work. Josh might end up in the same place, or worse off…or it might be successful. It’s a harsh decision for my husband and I to make. Right now, we are in no hurry.

As we talk, Josh is wheeled out of the room and down to the basement and into pediatric recovery. He’s still asleep. I head down there as soon as I can letting the anesthesiologist know I want to come into the recovery room as soon as possible. The nurses in recovery all know me well. Typically they don’t let parents in until the child is awake. But I’ve proven myself over and over again and I know what to do and how to let him wake up and how to suction him and how to question him finding out if he needs pain medicine or not.

Before I can go into recovery, I check in with the volunteer in the family waiting room. Every time I step into that large waiting room, I am assaulted with memories. I glance to the right looking at the small private waiting room on the right and remember sitting there in 2004, praying the biopsy report would be benign. Before he was even out of surgery, the pediatric oncologist came in and uttered these words, “The biopsy showed round blue cell…sarcoma…cancer.” I push those remembrances away as I show my wrist band to the volunteer. It’s always the same woman and I discovered early on she guards her territory well and takes her volunteer job seriously. I try not to speak to her as she and I have had a “run in” once before. She likes control and so do I. Walking back out of the waiting room, glancing at all the people, some trying to nap, some noticeably nervous, I stand in the hallway waiting just outside of the pediatric recovery room doors. The nurses know I’m there and after they get Josh settled, they call me in.

As I walk through the double doors, I note whether it’s full of children or not. Most often it’s pretty quiet and I greet and hug many of the nurses. Sometimes curtains are pulled around the little child’s bed for privacy; sometimes I can see the other babies. I catch up on the lives of many of the nurses and share about our lives. We allow Josh to sleep, making sure he wakes up peacefully. I always check to make sure the anesthesiologist has given him a little narcotic for pain. This makes his wakeup time much more pleasant. If he doesn’t get any, he wakes up hurting and crying. This has only happened once, when I forgot to ask and insist on the drug.

Once Josh is awake and he nods his head indicating he’s ready to go up stairs to see Nurse Susan, we are on our way with the help of someone in transport. We talk with them on our journey back to Short Stay, catching up on their lives as well. Back in Short Stay, nurse Susan makes sure Josh isn’t in any pain, and then offers him a Popsicle or ice water. This is to make sure his throat is not torn or damaged from the dilation. Once he’s drinking well, she takes out his IV, which is usually in his hand, but recently was discovered in his foot. He was NOT happy about that one! Nurse Susan finds the “coolest” band aides there are for 7 year old boys; Batman, Superman or Spiderman are the usual choices. Josh doesn’t even notice when the IV’s being removed anymore. We wait about an hour in Short Stay before we are allowed to head home. I sign the consent form to leave, am reminded to keep Josh’s activity level down because he was sedated and what number to call if he were to develop a fever. A wheelchair or wagon is brought to us and off we go…home! Josh falls asleep quickly that night and I’m exhausted, physically and emotionally spent.

Josh doesn’t feel well for the rest of the day and often on into Wednesday morning. I’ve learned to keep Motrin or Tylenol in his system until Wednesday evening. This makes a big difference in how he feels, but Wednesday can be a hard day for him at school. I remind the teacher he’s had a dilation the day before. Thankfully, she understands. He eats very little by mouth for a day or two, then it’ll slowly pick up and he’ll eat normally. By this I mean normal for him, not what a typical 7 year old boy would eat. He’ll do well for a few weeks, and then he’ll begin eating less and less by mouth. Finally he’ll have difficulty swallowing water and it’ll be time for his next dilation.

Each night we thank God for Joshua's life. Each night we pray for continued healing.

Every six weeks for the last two years we’ve taken Joshua into the hospital to have an esophageal dilation and we will continue as there is no end in sight…

Let's set the record straight...

2007-09-21T12:44:00.000-07:00

Our city was NOT the enemy, as the local media portrayed, when it came to allowing Joshua’s dream to come true!

Josh’s dream was big from the start. From the beginning, he insisted it was to be a “HOUSE in the Trees” (his words) not a tree house; complete with a kitchen, a garage, a shower and bathroom! And he wanted all seven of us to sleep there. Five years old and in the middle of a grueling treatment for Ewings Sarcoma, this vision was what gave him hope. He talked about it during the day and he dreamt about it each night and also when he was sedated for numerous medical procedures. Of course, we had to make some limits; there would be no flush toilet or shower in his House!

Josh and one of his sisters captured his dream on paper and it caught on like wild fire! Many of our friends and neighbors, talented people from our church and community stepped forward telling us they wanted to help make Josh’s wish come true. Soon an architect drew up a plan, and then companies from all over the area began to offer donations: lumber, siding, roofing, window materials and workers.

After the city had been notified, the plans had been examined and we’d been given the go ahead to build without permits, the “barn raising” began. It was a warm weekend in August 2005. Unfortunately, Joshua was in the hospital, unable to participate as he was receiving yet another round of chemotherapy.

I LOVE sharing this story with you, but like many good stories, there was a bad guy…and it wasn’t our city. One of our neighbors did not like what was happening and he began to make phone calls. I couldn’t believe anyone would try to stop the dream of a little five year old boy who was fighting cancer. He called the city and reluctantly, they came out to look at the job site. They had no choice but to stop the work, saying we needed to get permits. The neighbor’s complaint? He was worried about the safety of the children who would one day play in the House in the Trees. Oh, really? He had also told another neighbor it blocked his view. Anyone who has visited the House in the Trees will tell you this simply isn’t true.

About this time we almost lost Josh. He went into anaphylactic shock just after a platelet transfusion had begun. Thank God his doctor was nearby and knew exactly what to do. So while my husband and I were in the hospital taking care of our son, the halt to Josh’s House in the Trees was all over the local news. Every major television station called wanting interviews. And the bad guy the news papers and radio talk shows were attacking was the city. Yeah, right... My husband and I wanted to set the record straight, but we realized giving the name of our neighbor wouldn’t help the situation. So we just ignored all the calls, focusing on our little boy.

The city soon called a meeting and like a group of lawyers looked for loop holes in the law, discovering a simple way to make the House in the Trees comply with code. Creative ideas were implemented and permits were given and the House in the Trees was once again under construction! In the mean time, our neighbor called an environmental agency twice, hoping the project would be stopped. He came over to complain about the construction noise. Still we did not give his name or cause him any trouble. We were found to be within the law with the environmental agency and today the House in the Trees is 99 percent finished!

We sleep in Josh’s House in the Trees most every night, Joshua, his daddy and I. Sometimes the girls will join us too. It’s a House of blessings to us. Our neighbor, the one who tried to stop the House in the Trees, is building a large garage in his backyard now. We have said nothing. It’s a cold, sterile building, not quaint with a “cabiny” feel like Josh’s House in the Trees. But we will not complain to the city. We will not call the environmental agency. We wish the neighbor well. God tells us to pray for our enemies and so I do.

Josh began fighting cancer in October of 2004. Just last June 2007, the neighbor asked, for the very first time, how Josh was doing. I see him walking around his job site, seemingly happy with the progress. I heard he will fill it with his “classic” car collection. While Josh, my husband and I snuggle together each night in Josh’s cozy, warm pine scented House in the Trees, we soak in the love, feeling the blessings and caring of others surrounding us and we sleep in peace. Thank you one and all.

Thank you, city of Tigard!

The anorexic child vs. the child with cancer...

2007-09-14T13:24:00.000-07:00

I would watch as the nurse wheeled you down the hallway towards the lounge. Most often you were a girl, sometimes you were a boy, but always you were skin and bones, pale with sadness in your eyes, barley taking up space in the wheel chair. You were not allowed to expend any energy with your heart rate down to twenty-six beats; you were tethered to a heart monitor. Never allowed privacy not even when using the toilet or taking a shower in your room, always would a nurse hover over you and it was no different in the lounge where you were supposed to eat your meal. I would watch you stare at the tray of food. Each of you had a pattern, but it was similar... you would straighten the tray, put your napkin in your lap, take your fork and push the food around. Then you would set the fork down, re-fold your napkin and straighten your glass of milk. Finally you would pick up the fork, putting a little food on it and bring it to your mouth, only to stop, setting it down again and re-straightening your tray. It was agonizing to watch. I did not understand. Did you want to disappear? What kind of monster were you battling in your mind?

My son was fighting a monster too. It was growing inside of him unseen until the x-ray exposed its existence. He did not choose this monster. My son like you was wasting away, only he had a feeding tube and was tethered to an IV pole, which pumped in chemo-poison trying to kill the monster. He desired food, but knew he would just throw it up again. When I was told Josh had cancer, they began to explain the treatment of chemotherapy, radiation and surgery .When I learned of the damage that could be done to his virgin body both now and lurking in his future, it was all I could do to stop myself from scooping him up in my arms and running. It all seemed so barbaric. But I had no choice, as the doctor explained the courts would take him away from me if I did not consent to his treatment. I had no choice.

With treatment over, we no longer pace the halls where I used to see you, not understanding your fight. There is no scan to reveal the beast in your mind. Did you want to be invisible? Now the damage is done to my little boy’s body, but the monster is dead. The radiation fried his airway, melted his throat and destroyed his thyroid, but the monster is dead.

I had no choice. But you do. I do not understand, but I beg of you, choose your life. You have the power. Fight the monster. Choose your life.

It's the end of an era...

2007-09-11T23:24:00.000-07:00

Those were the words spoken by my brother as he helped disassemble the bunk beds my oldest two daughters had slept in for many years. The girls are gone now, off to college, exploring life as young adults. I am left with a room full of their treasures…memories from their childhoods. As I dug through their memorabilia, stuffing it all into boxes until a time when they can sift through it themselves, snippets of their lives flash through my mind. I carefully wrapped the Breyer horses given to them in Indiana on our 1997 motor home trip across the USA. The book and CD collection tell of their favorite authors and musicians. Movie stubs, ribbons won in art competitions, poems written with the passion of a teenager, all tell stories about my girls and who they are, maybe even hinting at who they will become. A bottle collection from Europe and Africa, loose pictures of friends and sisters making silly faces, prom dresses, fancy shoes and delicate wraps all passing through my hands bringing a smile to my face and a little sadness to my heart. It’s the end of an era…

I indulged myself and spent an hour last Saturday afternoon watching each daughter’s graduation DVD. Pictures put to music of their doll like faces in infancy and their chubby bodies in toddlerhood followed by the little girl and then the gangly pre-teen and finally finishing with the beautiful eighteen year olds. I allowed myself to cry. I am proud of them both, each unique, each individual. One is messy and one is neat all of their lives spent sharing one bedroom and yet they enjoy a close relationship as only sisters can. It’s the end of an era…

They often call on my cell phone, “Hi mom! What are you doing? How are you?” And as we chat my heart sings as I hear about their new classes or their new friends or their professors. Most often they call just to hear my voice, once in a while they call asking for advice. I’m their coach now, listening to their dilemmas, asking solid questions allowing them to think things through and come to a decision. And it’s their decision, not mine. Not quite a peer, I am, however; someone they acknowledge as having a little wisdom. I guess the “wisdom” is shown by the lines on my face. It’s the end of an era…

Their room has become the guest room now, soon to be filled, ironically, with a college student from a foreign land. After all I’m used to cooking large dinners and the stipend for the room and board is much needed. One of our younger two daughters eyed the room for a while, making plans of inhabiting it and decorating it to soot her tastes. But I insisted they continue sharing a room just as their older two sisters had, after all it will benefit them once they hit dorm life enabling them to adjust quicker and be tolerant of others. The younger two seem to be at odds more than the older two ever were. Maybe it’s the combination of red hair and strong personalities. Either way, it doesn’t matter, because the room once filled with the teenage paraphernalia of my oldest two daughters is now a crisp blue and white, clean and ready for that foreign college student who wants the adventure of an American family.

It’s the end of an era, but the beginning of another…

September is Childhood Cancer Awareness Month...

2007-09-07T08:38:00.000-07:00

Please watch this video on youtube:
http://www.youtube.com/watch?v=AGS4yE5v9rM

Childhood cancer is HORRIBLE. Please consider helping in someway because of Joshua. Funding for research has been CUT. The type of cancer Joshua had is rare, so there is almost NO funding for research or clinical trials open for kids with the same type of cancer, who have relapsed and whose parents are desperate for a cure. I know too many children who have died.

Please consider writing your representatives or donating to curesearch or the LibbyShriver foundation or the Sunshine Project.

Thank you.

The miracle of Joshua...God's way...

2007-09-06T07:53:00.000-07:00

Once upon a time there was a woman who had four beautiful, exceptional daughters. And she was very happy. But she had a secret. Deep in her soul she longed for a son. So one day, she whispered her heartfelt desire into God’s ear.

But…being a woman who liked CONTROL, she decided to take matters into her own hands. Like Sarah in the Bible, she took charge by making plans of her own. Sarah had “Haggai”. This woman with the secret longing had “adoption”. After all, hadn’t she been sick with flu like symptoms and extreme exhaustion for nine months straight with each pregnancy? Why go through that again? Besides, how could she guarantee she’d give birth to a son? These questions could only be answered one way…through adoption.

With her husband’s agreement, they began to step through all of the doors that adoption brings. And before they knew it, along came a little boy. And even quicker than you think, he was in their home…their little boy. But something was wrong. The woman could not sleep. The woman could not eat. She felt a torment deep in her soul. Something was horribly wrong, but what? She was confused and unsure of what to do. Why was there no peace?

Not understanding what was happening, the woman and her husband decided to step away from the situation. With heartache and confusion they gave the little boy back. How had this happened? They had stepped through all the doors. They had been willing to be willing. What went wrong?

Unbeknownst to the woman and her husband, far, far away a small church congregation was asked by the grandparents of the little boy to pray, non-stop, against the upcoming adoption! The grandparents wanted to adopt the little boy themselves. He was their blood. This was the unexplained torment that the woman was experiencing; only she didn’t know it at the time. She didn’t find out about the praying church until two years later! Prayers are powerful.

Today that little boy is thriving in his grandparent’s home. He’s in school, has many friends and is much loved. What happened to the woman, who liked control, and her husband? Within one week of giving the little boy back, they discovered they were pregnant…with a son, and they named him, Joshua!

And the rest, as they say, is history!

Two women stood at a cross roads...

2007-09-03T19:48:00.000-07:00

One day two women met for the first time as they stood by a swimming pool. They were similar ages…both women of faith…both in a daze. As they watched three children splashing and playing, they talked and their spirits connected as sisters. They understood each other, but they’d just met.

As young women they’d both desired to be wives and mothers. Both women had spent two decades, following their dreams, happy, content, knowing who they were and satisfied with life. But life had changed suddenly, unexpectedly with no real explanations.

The first women’s two children had grown up. They were adults now not really needing her anymore. She let them go, which every mother knows is good and right and normal, but not very easy. About that same time, her husband walked away from their marriage, abandoning her, trading her in for a younger, newer model. Two and a half decades of being together…over. Just like that. Naturally this woman was devastated. Who was she now? What was her purpose? What was she to do with the rest of her life? She still had so much to give. Where would God lead her? Her thoughts…travel the world, helping the poor and needy...giving.

The second woman had recently let two of her five children go, but she was still reeling from a childhood cancer diagnosis and treatment of her youngest. She’d spent sixteen years homeschooling, sacrificing, raising her children. But now she was exhausted emotionally, spiritually, wiped out from three years of intense medical situations. Who was she now? She was still a wife, but the dance with her husband had changed. She was still a mother, but now the medical arena filled most of her time. Homeschooling was impossible, but the school where her children would attend needed training on how to care for her youngest child’s medical needs. Could she train them? Could she trust them, letting her baby go? How would she fill her “free” time? Where was God leading her?

They cried together as they shared their lives standing by a swimming pool. They connected instantly two sister hearts whose lives had forever been marked in a single moment by someone else’s words…”I’m leaving you”…”Your son has cancer”. Standing there, talking, they looked up, the brilliant puffs of clouds were skirting across the deep blue sky, carried on the wind, shifting, changing as just as their lives had. They understood each other as only sister’s can. They gained strength from each other. They both knew God would lead them and they both knew they would be ok.

I see life through childhood cancer colored glasses...

2007-08-30T18:20:00.000-07:00

I have a confession to make; I tend to see the glass as half empty. Now please do NOT call me a pessimist. I am not a dooms day type person. I am not a kill joy. What I am is a REALIST. There is a difference. A realist sees life in its reality…the good and the bad. I think I’ve always been a realist and that is why I married an optimist. It must be a universal law or something. After all, can you imagine an optimist married to an optimist? That would be like Job in the Bible saying to his wife, “Oh, honey what a beautiful day it is!” while he lies in an ash heap scraping his boils with a pottery shard. His wife would happily reply, with a sweet smile,
“Yes, it is a great day Job, even though we’ve lost everything we’ve ever owned, not to mention all 10 of our precious children and you are covered from head to foot with painful, ugly boils.”

What about a realist married to a realist? Each night they would argue about their favorite topic over dinner, how the world was going to end. It might go something like this…
“Honey, I’m sure we’ll all be blown to kingdom come from the nuclear weapons out there. Might even happen tomorrow. “
“Oh, no honey, I’m just sure the sun will burn out and we’ll all freeze to death. After all, the scientists say…”

But in reality (pun intended) I’m not saying realists aren’t happy or fun or full of joy. I’m not saying one is better than the other. I’m just saying realists need to be surrounded by optimists and optimists need to be surrounded by realists. It’s about balance.

But I have a problem. As a realist, I now see life through cancer colored glasses. I see life through the lens of childhood cancer. Sometimes they are somewhat rosy and some days they are grey or even black. I see children’s lives marked with a greater uncertainty, their futures less sure. I sometimes think I spot recurrence in the corner of my left lens. I see physical damage done to a young innocent body. I remember the toxins pumped through my son’s blood system, so I’m often looking for possible future damage. I try to see my son’s life before living with a tracheotomy, g-tube feeds and thyroid medicines, but it’s pretty hazy with the lenses I now wear. I try to see a future for my son without sedations and esophageal dilations every 6 weeks. All of this, the collateral damage of cancer treatment.

There are days I find myself sliding to the pessimistic side. I’ve seen a little cynicism creep in too maybe even a little less joy as I wear these new spectacles. I don’t want to wear glasses. I’ve always had 20/20 vision, but not anymore. Unfortunately, it is impossible to take off these new glasses. And even more frightening is seeing my optimistic husband sometimes slipping to the pessimistic side.

So how do I keep myself from becoming a pessimist instead of a realist?

I must trust God, know His nature, being sure of His goodness and hold onto HOPE...

There is no end in sight except heaven...

There is no end in sight except heaven...

2007-08-25T09:17:00.000-07:00

Years ago, twenty to be exact, when I began having children and all that includes, I chose a Bible verse to help focus me through the challenging times with young babies. Galatians 6:9 says “Do not grow weary in well doing for in due season you will reap a harvest.” With four beautiful, smart, little girls, I enjoyed every second of my time with them. I loved nursing, the challenge of potty training, the toddler years during which I was usually pregnant with one of them and very cumbersome as I chased after those chubby little legs that were faster than I was. I loved the tea parties, their creativity with paints, paper, scissors and glue. I loved the hours and hours of reading a classic book aloud under a tree in the backyard. I loved the time we spent home schooling, choosing a topic that excited us all, discovering and learning together. If I was going through a particularly difficult childhood phase, I would remind myself that “This too shall pass,” another great word from the Bible reminding us nothing lasts forever. I remember being utterly exhausted each night as I collapsed on the couch after I’d finally gotten them all tucked in their beds, but I was content and happy.

Now, twenty years later, I am reaping a harvest of much fruit as I send my two oldest off to college. I look at them, knowing their hearts are full of life and a love for God. I see their maturity, way beyond mine when I was their age, but I also see their questions and wondering with a little hesitancy as they head off on their own. I release them into God’s hands now, more than ever before, trusting Him to guide them, watch over them, and care for them. I’m excited for them, but I will miss them dearly. Long gone are those precious years of childhood.

Then I remember my three still at home. I have felt the weariness set in, deeper and harsher than ever before. I am older now, but with three long years of battling childhood cancer I feel ancient. I am mentally, spiritually and emotionally spent, but I am not broken. I long to give up, give in, or check out as a mom, but I cannot…I will not. So I ask God each day to build me up. I ask for His grace to help me not grow even more weary, to be able to keep pouring myself out to the three young lives He’s given me at home. They are priceless. They need me. They deserve my devotion just as my older two did.

The battle is tougher now. Childhood cancer does not just “pass” as potty training did. It seems to always be hanging there in the background, waiting like an enemy ready to destroy us. But now I know something I didn’t know as a young mom, God is fighting for us and I can relax in His power and might. I can let the weariness slip away into His hands. I know there will be a harvest for these three as well. One day I will be sending them out the door with a smile on my face and tears in my heart. But when that day comes for Joshua, I will fall on my knees with my hands lifted up in thanksgiving. What if that day does not come for him? Each of our lives is so tentative. Then I remember the ultimate harvest, which will come for all seven of us someday…

There is no end in sight except heaven.

Healing...

2007-08-20T12:43:00.000-07:00

I wrote this a while ago when a dear friend of mine took me to the beach for a weekend get-a-way. She’s a very nurturing person and I was wonderfully pampered. She loves to shop and I love to walk along the beach, so one afternoon I found myself alone on the sand and this is what happened…

One day, as I walked down the sun soaked beach of Gerhardt, OR, I noticed how the light shimmered on the ocean waves making the water look like liquid silver. The sky was alive with light and color bursting through the texture of clouds. As I drank in the beauty of God’s creation I surprised myself by suddenly bursting into heart felt sobs. It had been a long and arduous 18 months since our youngest, our only son, had been diagnosed with cancer at the age of 4 years. With tears falling down my cheeks, I found myself saying, “Lord, my soul hurts. My soul is bruised and battered. Lord, heal my soul. Heal my soul.” I repeated this mantra over and over. And then I noticed for the first time, the pieces of sand dollars littering the sandy beach. They were white calcium, the bones of a sea creature torn apart and shattered by the tumultuous waves, strewn over the beach like white scraps of scattered paper. These poor sand dollars had no control over their simple lives. The ferocity of the ocean waves pulled by the moon to create the ebbs and flows of the daily tides had shattered them. They were helpless. They were battered and bruised…they were lifeless. This was how I felt.

As my heart expressed its brokenness… suddenly, I saw it… the first whole sand dollar! It was lying there complete and perfect. I slowly picked it up in disbelief; it was flawless, intact, a full circle, no damage despite being at the mercy of what the environment had placed upon it. My heart beat faster and I could feel myself growing excited. Surely, this was a miracle! But no, there was another and another and after walking hurriedly for 2 hours I had accumulated a sweatshirt pouch full to bursting of these precious gems. Each glorious sand dollar was a message from my God, giving me hope and filling my heart with the promise of His healing. I knew my soul would be renewed. Though I was battered and bruised …healing would come. This was God’s promise to me. A miracle!

2007-08-19T20:44:00.001-07:00

I know what hell is like...and I've seen glimpses of heaven too...

Hell is watching your child suffer terribly and NOT being able to do anything about it. Hell is hearing the words "round blue cell sarcoma" in the same sentence with your 4 year old son's name. It's pale, skinny, baldheaded children with little energy trying to play in the waiting room of a pediatric oncology clinic. Hell is hearing all about the damaging side effects of chemotherapy and radiation, both long and short term, from the doctors and knowing you have no choice. It's wanting to pick your baby up and run...but where? To whom? It's not being able to watch that first dose of toxins being pumped into your baby’s body. Hell is holding your screaming child down for needle pokes and IVs. It's fighting insurance companies for every penny and mixed up communication with hospital staff and children with feeding tubes and yellow plastic tubs for vomiting. It's crying for eight months straight and knowing your life and your child's life will never be the same. It's finishing treatment, and then grieving the damage done to your little boy's body, but being grateful he is alive. Hell is watching some of the other childhood cancer children around you die and being thankful it isn't your child...yet grieving the loss deeply...and feeling guilty...

I've seen glimpses of heaven too...

Heaven is the love and care poured out by neighbors, friends, the church, strangers and the community so much so it could never be repaid. Heaven is kind shoulders to cry on, ears that are listening, hands that show up to grocery shop or clean the house or drop off a meal or drive your other children somewhere. Its people coming together creating fundraisers to help with medical costs and foundations created through loss that help pay the bills. Heaven is free family camps, doctors who cry when a child they’ve treated dies and nurses with a gentle touch. It’s that special childlife worker who goes out of her way to help your son make a Spider Man costume. It's the smile on your son’s face when he's given a toy even though he's too sick to play with it. It's the chemo pals and the art therapists and all the children and their families who show up for the "end of chemo" party! Heaven is the people who encourage your child to dream big, and then actually make that dream come true! Heaven is the love that is shown to a suffering child and his family over and over again, day after day, week after week, month after month and year after year...