Angelman Syndrome Is One of the Biggest Influences in My Life. And I'm OK With That.

To UBE3A,

I’d never even heard of you until Sean was 7 months old, but you were there all along. Actually, that’s when I learned you weren’t there. How could one little gene on chromosome 15 matter so much? We have something like 24,000 genes in our body, so how could missing just one little gene cause so many problems? Thanks to Dr. Harry Angelman’s discovery, we call you Angelman syndrome.

I struggle with my relationship with you. I hate you for what you’ve done to my son, but I love my son for exactly who he is and can’t imagine him any other way. Because of you, Sean will need 24-hour care throughout his life. I’ve never heard him speak a single word, and I know he has so many thoughts he’d like to express but struggles to do so. You’ve come close to taking his life with seizures. He’s had several surgeries and countless hospitalizations.

Without you, I wonder what kind of mom I’d be. When I became a mom, I became a special needs mom. I don’t know what it’s like to parent a child who doesn’t need your constant presence. You affect our entire family and every major decision we make. If Sean wasn’t missing you, what would his life be like? What would my life be like? Would my marriage be any different? How have you shaped my other children’s lives?

But I’m certain of a few things. I see the world differently now. I’m a better person for knowing you. I don’t sweat the small stuff. Life is all about how you handle plan B, and I know how to wing it. I have a deep appreciation for the amount of work it takes to achieve what others may take for granted. Sean began walking independently last week at age 14! I know you’re one of the reasons my marriage is strong. My younger three kids don’t know life without you. You have no doubt shaped their character traits. They too know how to go with the flow. They’re compassionate, caring, sensitive and loving individuals.

I think about all the amazing people you’ve brought into my life, not just through mutual connections we have but because of other genetic anomalies. I was inducted into a special club. I went in fighting, and now I can’t imagine leaving. These people have enriched my life in unimaginable ways. I’ve formed lifelong friendships with moms and dads, teachers, physical therapists, occupational therapists, speech therapists, music therapists, aquatic therapists, doctors, nurses, pharmacists, case managers and even our UPS delivery guy who delivers all of Sean’s supplies with gentle care.

It doesn’t do me any good to think about the what-ifs had our paths never crossed. You’ve been one of the biggest influences in my life, and I’m OK with that. I wasn’t always OK with that, but I am now.

Sean’s Mom

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 community@themighty.com. 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.