A little more than a month ago, a young lady wrote a column in this paper about what it’s like to live with a disability. My first thought was, “What courage she has for a 12-year-old!” Although she insisted she wasn’t looking for pity – and I believe her - I couldn’t stop my heart from hurting when I read about the many times she’s encountered long stares, rude comments and just plain ignorance from people who should know better.
What is it that makes humans act this way?
She lives with her disability daily and still manages to have a bright outlook on life. What strength!
In the months ahead, our family will likely experience some long stares too. Our 8-month-old son Brenner has “plagiocephaly” - a flat spot on the back of his head - and needs a cranial remolding helmet to correct it. The condition is actually quite common these days, and is thought to be directly linked to the “Back To Sleep” campaign, which recommends putting infants to sleep on their backs to prevent Sudden Infant Death Syndrome.
The “helmet” will curb growth on one side of his head to encourage growth on the other. I think of it as sort of a cast for his noggin. Thad compares it to getting braces on your teeth.
But prior to Brenner’s evaluation, I wondered if we were over-reacting. So his head isn’t perfectly symmetrical? Should we be worried about something that just appears to be cosmetic?
Turns out, vision and hearing problems can develop because of a misshaped skull structure. Bike helmets won’t fit properly. Batting helmets won’t fit properly. Football helmets won’t fit either. When we realized the potential of problems down the road for a little boy who is already extremely active, the decision was easy.
He will wear the “helmet” for 23 hours a day for approximately five months – give or take - depending on the progress. In the end, his head still probably won’t be perfect, but it should improve. Basically, we’re just hoping to make a cute little boy a little more handsome!
Even though this condition is more and more common, I know we will encounter people in the next five months who just can’t help but stare. Humans are by nature curious. During that time, I will draw on what
I’ve learned from people like the 12-year-old column writer and from the young children and their families we’ve encountered during appointments at Children’s Care Rehabilitation. They are big teachers in small bodies… and the rest of the world has so much to learn.