To the Faulty Gene I Gave My Son

To the Faulty Gene I Gave My Son, Known as L1CAM syndrome,

Unlike most genetic disorders, you’re not difficult to spell or pronounce. But you are difficult to understand.

nathanzoo It’s difficult to understand that, because of you, my baby has endured three brain surgeries to date and will most likely endure many others. It’s because of you he’s the size of a child half his age. I pray each time he takes a bottle, he won’t throw it up. It’s because of you that we do three hours of therapy per week and despite that, he still can only sit on his own for a few seconds. It’s because of you that we didn’t come home from the hospital to flowers and balloons but went straight to the neurosurgeon’s office to be told his fate. Because of you, we’re not looking into saving for his college fund but instead looking into creating a special needs trust to protect him. It’s difficult for me to understand how one, tiny change on one gene out of all the others, could wreak such havoc on my child’s body and mind.

It’s also difficult for me to understand where you came from. When I talk to other moms of boys you’ve chosen, they usually have brothers or uncles who have known you. They could see you coming, though they might not have wanted to look. No one in our family had ever heard of you before, and we know our family history back to Charlemagne. Why did you pick me, I wonder? Why did you have to pick him?

But what’s maybe most difficult to understand is that I think, perhaps, in taking a normal life from him — hell, from us all — I think maybe you gave him something. You see, one thing I’ve always known is in our genes is a tendency toward worry. Let’s face it, we’re a family of anxiety-ridden introverts who can fall to pieces over a funny look. (Well, at least we used to be. We’re having a healthy lesson in perspective lately.) But not my baby, not N. Unlike his brother, who was intense and nervous even as an infant, baby N is the most joyful child I’ve ever met. He has a smile that lights up a room and makes even the sour-faced old biddy in the corner glow. But it isn’t just him. I’ve had the privilege of getting to know parents of boys around the world you’ve taken in your grasp, and they aren’t a bitter lot. They’re easygoing, happy children who beam from their wheelchairs and from hospital beds.

See, I prayed every night of my pregnancy for a healthy baby. I did it as insurance, like taking my prenatal vitamin. But there was one night, I remember, after a stressful evening, that I went in the shower and turned the water on high so no one could hear, and I prayed, begged God to make my child a happy child, to spare him the family illness of neuroticism. That was the prayer that was answered.

So, faulty gene, if you had anything to do with that, then I forgive you. Because I have a child who doesn’t know he’s supposed to feel sorry for himself, who doesn’t worry about his next hospital visit or realize he’s missing out because he’s not crawling or toddling about. I have a child who feels love, and even though he can’t speak, gives love out without reserve. I have a child who loves life, thinks it’s a miraculous journey and is taking the rest of us along for the ride. And for that, I will always be grateful.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Find this story helpful? Share it with someone you care about.

Related to L1 Syndrome

Please Don't Tell Me Autism Is a Gift

Every time I sit down to write, I often already have a positive message to end on in mind. I don’t have that today. Today I am sad, I am angry and I am coming from a place that I don’t often go: a place with walls papered by self-pity and lighting dimmed by exhaustion. [...]

9 Things I Wish I'd Known During Our Autism Diagnosis Process

I remember back to the time that I first told my Hail’s pediatrician we would like to have our boy tested for autism. We’d noticed a lot of odd behavior — he would line everything up when he played, he had sensitivity issues and would gag on foods, would yank on his hair until he [...]

Autism, I’m Going To Be Honest With You

To Autism, I’m not going to begin my letter with “dear” Autism — you don’t deserve that greeting. You don’t really deserve anything. You’re nothing to me because my son is not defined by you. My son is defined by his beautiful nature and the unconditional love of his family. His foundation is built on these [...]

A Breakup Letter to My Life-Altering Stomach Condition

Dear Gastroparesis, I hate being your slave. You are so demanding and such a control freak. You want what you want, when you want it, and you never even ask my opinion. I make plans, and you cancel them. I try to complete chores, but you sap my strength and demand I focus only on [...]