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…

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