Thursday, April 3, 2014
This post is dedicated to my brother, Nathan, who I catch a glimpse of at times staring back at me through my own reflection.
Nathan was 6 years older than me. After more than 4.5 years of tests and continuous unanswered questions, he was diagnosed with Cystic Fibrosis. At that time the life expectancy for a child diagnosed with CF was about 14 years old.
Nathan spent the majority of his life surrounded by nurses, respiratory therapists, and doctors who all became like family. Home became the hospital. It was where everyone knew his name and treated us like family. I am so grateful for those kind nurses, RT, and doctors: many of which I still know and love dearly.
From as early as I can remember, my days revolved around going to the hospital to visit him: whether it was Iowa City, Omaha, or Sioux Falls. When he would come home, it would be for short periods of time and usually on home IVs. Inevitably, the infection would always get worse and he'd have to return to the hospital. As the disease progressed, so did his fight for every breath. He was so small. He wasn't taller than 5 ft and never weighed more than 85 lbs. Walking 15 feet was an exhausting task: bound by CF to watch the world race past unaware of just how lucky they were. There are moments I want nothing more than to ask him questions, talk to him about his life, tell him how sorry I am for not understanding until now, and express my guilt for being healthier than he was.
Nathan died at the age of 17 from complications due to Cystic Fibrosis.
It seems like an entirely different life when I look back now. Because there were 6 years between us and I was still the little sister, I have trouble recalling a lot of specific memories. Maybe this is the cause of time, or maybe a response to what I saw happening before me as child?
What I do remember?
His laugh. The way he said my name. His love for instant pudding. The make-a--wish trip we took to Disney World. The color of his eyes. Him instilling the fear I have of swimming in lakes or oceans. His walk. His baseball card collection [he gave me a few of his Hologram cards when I was little]. Him burying me in the sand. His smile. Us jumping on our parent's bed. His hands. The words of his last goodbye to me: he gave me his dog. The day he died.
Who do I see when I stare at my reflection?
My brother. I catch glimpses of him when I smile a certain way, when my face is extra puffy from all the medication, and most often in my tired eyes staring back at me.
Thank you to all the nurses, respiratory therapists, and doctors who fight CF everyday: you have given me the gift of every breath. Love to you all.
Who do you see in your reflection?