11 Years After My Daughter’s Diagnosis, This Is What I’ve Learned


Dear Cerebral Palsy and Epilepsy,

When we first met, you were bold and scary — an ominous force. We knew nothing about you. All we could see was the beautiful baby girl you were stealing from us. All our dreams and joy seemed to disappear in an instant, and all we could envision was fear, pain and sadness.

But she would not let you steal her. She was stronger than you both. She fought and she lived when medical predictions indicated the opposite.

Eleven years later, here we are. She is a beautiful, healthy, happy yet profoundly disabled little girl. You haven’t left, but we’ve learned to live with you. She wakes up every morning with the biggest, sweetest, most beautiful smile — a smile that says, “Hello, world! Here I am!” She cannot walk, talk, sit or feed herself, but she is the joy in every breath I take. She has an infectious smile, a laugh that is contagious and a magnetism that is undeniable.

Cerebral Palsy and Epilepsy, you have not stolen anything. You have granted us the opportunity to live in the presence of an angel. She has had to face obstacles from surgery, pain and discomfort, but her strength shines through every day. She may be visually impaired, but she sees in her own world. She may not understand our world, but she understands hers. She is locked into a peace we can only imagine. She has helped us learn so much and experience things we may never have without you, Cerebral Palsy and Epilepsy. We have swam with dolphins in dolphin therapy, we have walked with elephants and we have met the most majestic horses in hippotherapy. We have explored the world through her, and we are better, stronger people because of her.

Because of you, Cerebral Palsy and Epilepsy we know absolute, unconditional love.

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 [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 Cerebral Palsy

What My Depression Taught Me About Compassion

I’m writing this because I believe my depression offered me a small window into the world of those who know they are different from the majority, those who feel incapable of fully participating in society. My last two cycles of clinical depression taught me to have compassion for those for whom such struggles seem part of [...]

We Love What the New White House Receptionist Has to Say About Being Deaf

Meet Leah Katz-Hernandez, the new White House receptionist. The 27-year-old from Connecticut works just feet away from the Oval Office. She greets each person who arrives to meet with President Barack Obama, oversees the Roosevelt Room and the West Wing meeting room and is in charge of the White House guest book, according to TODAY. She [...]

I Don’t Need a Cure for Cerebral Palsy, But I Do Need This

Today I want to thank my disability for several reasons. Cerebral palsy made me who I am; it’s a part of me, and the challenges I face make me a stronger person. The days in the hospital and the hours of therapy taught me to appreciate the small things in life. Without my disability, learning [...]

How an NHL Coach Helped Me Through a Tough Special Needs Parenting Moment

A couple of weeks ago, my husband, Rob, and I were sitting around reading books with our kids, Lola and Sebastian. Sebastian is enthralled with books. He could read and reread the same book 50 times a day if we let him. He also likes puzzles, shape sorting, stacking blocks and other forms of play [...]