I’m not in love with the phrase “kids with special needs.” It sounds sad to me. I prefer “exceptional kids” or something like that.
We met a bunch of exceptional kids last week.
As we walked the halls of the various research facilities of that remarkable place we call the NIH , it broke my heart to see some of them. The ones racing each other in their wheelchairs…legs so small and weak resting calmly in their chairs while the rest of their bodies flailed about in the race. The bald little girl with deep, dark circles under her eyes hugging to her mother’s arm. The tiny fifteen-year-old boy waiting for a transplant of some kind with the wit to keep Dave interested in his football expertise for a long time.
There was the sweetest eight-year-old in the waiting room with us one of the days we were there who Lucy from that point forward claimed to be her new best friend. Lucy wasn’t phased by the fact that half of her dear new friend’s face was hugely swollen three times the size of the other half and that she only had one working eye.
We saw the looks in the parents: the bravery. the heart-wrenching worry. the exhaustion. Some families stay there for months. Some come on a regular basis. They have the routine of getting through all the serious security and shuffling through to doctor after doctor down pat.
Their strength is inspiring.
Before we left on our trip I had the opportunity to photograph one of these exceptional kids.
No, I don’t do photography any more, but I couldn’t turn this little girl and her family down.
And her amazing family figured out how.
And mostly, because of love.This little sister of hers will never know the difference. She loves to ride on the back of that chair, and is used to waiting for her parents to maneuver setting it all up when they get new places.
Check out more details about their story and how it all began here and here.
I’m so thankful for inspiring examples.
P.S. I just read this great quote on an email from the Foundation for the Blind and thought it was perfect for this post: