Thursday, June 19, 2008

Expectations, disappointments and tracheotomies...

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…

Friday, June 6, 2008

Broken dreams and cancer...

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…