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.
Memories.
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?
Beautiful memories--written down by a little sister with lots of love.
ReplyDeleteReading your blog over the last few days has truly been an inspiration. You are so brave and so strong! You are so kind and care so much about others. The world needs more women like you in it, and I am lucky to know you.
ReplyDeleteAhhhhh, beautiful. Just beautiful.
ReplyDeleteSuzy
Ah Ashley... that is beautiful. I think of Nate often. He was one of my first patients when I started as an RT. My first real loss. Such a good funny sassy boy!! :) He brought me earrings from Disney world. :) I remember how he snorted when he laughed. Your blog is great and I look forward to reading it.
ReplyDeletePlease know how much joy your comment brought to me! I love to hear about Nate and how he effected so many people like yourself. Makes me smile. Thank you for reading. Hope life is well!
DeleteI am so thankful I had Nate in my life. I think of him often, especially when I see my cat and dog play. I am a better person for having had him in my life.
ReplyDeleteThank you so much for the comment! I am so humbled by hearing the stories of Nate and how he effected so many people. Thank you, truly.
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