The Mighty Logo

Why We're Ready to Share Our Daughter's Newest Diagnosis With Our Friends

The most helpful emails in health
Browse our free newsletters

The power of friendship cannot be measured on any scale.

image (9)

It’s something that you learn at a young age. And throughout your life, those friends may come and go, but all will leave a lasting impression on you. When our daughter, Devan, was born we soon were told she has Down syndrome. She also was born with a heart defect that would need surgery at some point early in her life.

On Black Friday 2012, had her heart repaired. The outpouring of love and prayers and concern of friends near and far helped us over the two weeks she was at the hospital. One week into our stay, when I needed to leave my family and head back home to work, someone offered me a home cooked meal. At first I declined. Too tired to be happy. Exhausted from concern. As I drove closer to home, I gave it a second thought and asked if was still OK to swing by. The offer still stood, and off I went. When I arrived I was met with hugs and kisses and the promised home cooked meal. It was one of the best I’ve ever had. As the meal ended, I was given an envelope with a check in it. A small token of love from a family member of theirs who heard what we were facing. A debt we could never repay. A new friendship was born over kindness.

Other relevant stories:
Things You Can’t Do with Epilepsy
Is Epilepsy an Autoimmune Disease
Can Epilepsy Kill You

When released from the hospital, we returned home where Devan’s older sister was eager to decorate the Christmas tree. Friends sent handmade hearts from all over, and they soon decorated our tree. That Christmas was spent reflecting on what we had and what was to come. We found love and support from the Down syndrome community. Made new friends. Became close to one who has a son close to Devan’s age and has Down Syndrome. He’s our future son-in-law. The apple of Devan’s eye and one of her biggest supporters as she navigates this journey.

Life goes on, and now two years into this, we still would not be where we are without the love and support of our friends. We’re now facing another diagnosis. One we didn’t expect or see coming. Infantile spasms. Epilepsy. We’re currently wading through the feelings and emotions we felt upon hearing the words “Down syndrome.” Most of our friends don’t know yet. It’s too new for us. But it’s time. It’s time to come out of the dark rabbit hole and into the light. They will learn upon reading this. We’re thankful for each and everyone of them. For the kind gestures, love and support. For being who they are. Our friends.

image (10)

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.

Originally published: February 19, 2015
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home