My oldest son, Cooper, has a rare, random, chromosome mutation. In a worldwide database, there are only four people that have one of his mutations, and none that have the other. We were told when we got his genetic results that he would be smaller than average and would have small feet. That was it. Everything else was a mystery. No one could even guess what Cooper would or would not be capable of when he grew up.
Six and a half years have passed since then. And I’ve learned a lot.
About Cooper: what he is and isn’t capable of.
And about myself: what I am and am not capable of.
Who knew that two tiny changes in his genetic code could alter so much, could affect so many, could change everything about who I was?
I’ve had to let go of a lot: pride, preconceived notions of what my life would be like, ease, and convenience to name a few.
And I have a new life mantra: Breathe in. Breathe out. Let it go.
Before kids, before Cooper, I was on top of things. I graduated from college, moved halfway across the country, started a career, and got married. I had life under control. I was in control. And then Cooper came along. And I quickly realized that my life, my accomplishments, did not happen in a vacuum. And boy did I need that network of support. In his first four years of life,
In his first four years of life, Cooper was hospitalized 22 times, seen in the ER 20 times (8 of those visits were in a six month period), and had more than 10 surgeries. He has 12 separate diagnoses, from chronic lung disease to infantile spasms, and we see 10 subspecialists. The last few years have been significantly better, but just last month he was hospitalized for a five-day stretch for severe dehydration.
My pride, my thinking that I could do life on my own, quickly went away. Now, if you call me and ask, “Can I help?” you better believe the answer will be yes. Friends and family have brought us food, done laundry, grocery shopped, watched my other children, hung out with Cooper at the hospital so we could get a break, and on and on.
Every time I have to ask someone for help I remind myself: Breathe in. Breathe out. Let it go.
In addition to his illnesses and hospital stays, Cooper is difficult to care for on a daily basis. He’s non-ambulatory, non-verbal, g-tube dependent, and still in diapers. He attends a wonderful school full of children just like him where he receives speech, physical, and occupational therapy. Plus he gets aquatic therapy in their heated, indoor pool once a week. He also goes every other week to a feeding specialist.
Literally, I could not raise my child by myself. And that was a hard pill to swallow.
When he was first born, our pediatrician told me about a few special needs schools that took infants as young as six weeks. I resisted. I just knew I could do it on my own. It wasn’t until I finally went and toured one of the schools, and Cooper got a mini physical therapy session, that I realized just how wrong I was. My pride was standing in the way of Cooper meeting his full potential. So at eight months, Cooper started school. He’s gone year-round since.
I just had to breathe in. Breathe out. Let it go.
Cooper turned six last August. When milestones like birthdays and starting kindergarten come around, I often find myself wondering “what if.”
What if Cooper was born a typical kid? What would he be like? What would he be into? Superheroes? Dinosaurs? Minecraft? Pokemon? What kind of music would he like? What would his favorite color be?
But I quickly try to stop that kind of thinking.
Cooper is who he is. I can’t “fix” him. Those questions just lead down a wormhole of sadness and longing for something unattainable. So I breathe in. Breathe out. Let it go.
The next time you take your family somewhere fun: a baseball game, a park, the circus, etc., look around and try to find a clean, private place where you could change the diaper of a six-year-old. And try to go everywhere on wheels. We’re luckier than most. He doesn’t need a machine to eat or breathe. He’s relatively easy, as far as medically complex children go. But there are so many extra things to think about, to take into consideration any time we try to go somewhere with Cooper. And he’s part of my family. I WANT to take him places with us. I WANT him to be able to do as many things as he can. But sometimes, logistically, it’s just not possible.
So I breathe in. Breathe out. Let it go.
Cooper has taught me so much: To be humble. To know when I need help. To ask for help. To live in the present. To not dwell in the past. To roll with the punches. To be flexible.
And I hope that my other children learn from him as well. I hope they learn to stick up for those that don’t have a voice. I hope they learn compassion and empathy. I hope they’re never embarrassed of Cooper, and if they are I hope they feel shame for it.
But most importantly, Cooper has taught me to just breathe in. Breathe out. Let it go. And for that I am thankful.