By Kathy McClelland: For More Info, Go Here…
An open letter from the mom of a kid with a rare disability.
Ifrequently sense that I am being watched. My son’s microcephaly (small head) and syndromic features stand out to passersby. His head is about the size of a nine- or ten-month-old so kids often mistake him as a baby, although he is too tall and skinny to be a baby. His almond-shaped eyes and low-set ears throw off the symmetry of his face. I think he’s absolutely adorable but I can certainly see why his appearance causes others to look longer than you might at your average four-year-old.
When I sense others lingering and looking at our family, it’s hard to not get stage fright. I fight hard to stay present, to not freeze up and draw inward. I want to remain friendly.
My son was born with a rare chromosomal disorder called Cri-du-chat syndrome which affects one in 50,000 babies. Cri-du-chat syndrome causes many medical complications and developmental delays. Bringing my son out in public also brings on many public stares.
Of course, I don’t know exactly what people are thinking when they stare, but I assume it’s probably something like: I’m glad that’s not my kid.
Know this: Life is hard but we are still happy
I want my fellow moms to have a more positive picture of our life. I don’t want them to feel sorry for us. Instead, I want them and their kids to know about our love and enjoyment of one another.
When other moms see me with my son, I want them to think: I could do that, too. Not because they want to do it or because they could do it better but because sometimes life hands us things we don’t want or feel strong enough for. But if we had to, we could do that thing, too.
Every parent is going to suffer pain because of something in their child’s life, whether it be a learning disability, bullying, struggling with poor body image, or finding good friends. Sometimes this heartache begins at birth and sometimes it comes with puberty — but it will come.
We all encounter varying degrees of unwanted circumstances in our lives; it’s a matter of what we do with them. Do we turn inward or look outward? For parents of kids with disabilities, our challenges are very external. They are on display for everyone else to see. The challenge for me, as the mom of a special needs child, is to stay outwardly focused and not draw inward. Regardless of the struggle, what everyone needs in the midst of their hardship is connection and friendship.
When other moms see me with my son, I want them to tell their children, “Let’s go say hi.”
When other moms see me with my son, I want them to engage in conversation. And when they do, I will share. I will tell them things about Nathan.
I want people to know that it’s okay to ask questions.