Wednesday, June 30, 2010

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

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”


My heart hurts for my son...

Thursday, June 17, 2010

Perfect timing...

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…

Sunday, June 13, 2010

Josh is 10 today...

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…