This article was originally published on Her View From Home.
I frequently sense that I am being watched. My son’s microcephaly (small head) and syndromic features stand out to passers-by. His head is about the size of a nine or ten month old. Kids often mistake him as a baby, though 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 can certainly see why his appearance causes others to look longer than 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 1 in 50,000 babies. Cri du chat syndrome causes many medical complications and developmental delays.) Bringing my son out in public also brings many public stares.
Summer is coming and we go to the pool. A lot. It is very easy to notice us at the pool. When I help Nathan, who is still unable to walk, awkwardly wade through low-level water he squeals loudly and delightfully bringing more attention. When I tube feed him on a nearby chaise lounge I feel the awkwardness even more so. I get it. Before Nathan was born I thought feeding tubes where for brain injured patients or the elderly. Certainly not kids. It’s become normal to us, but it isn’t for the people at the pool. I understand that people cannot help and look at my little boy, as he has such a rare condition.
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’re 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 of 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 too.
Every parent is going to suffer pain from something in their child’s life, whether it be a learning disability, being bullied, struggling with a poor body-image, or finding good friends. Sometimes this heartache begins at birth and sometimes 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? With 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 outward focused and not totally draw inward. Because regardless of the struggle, what everyone needs in the midst of their hardship is connection and friendship.
Remember This: What Every Child Needs is 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 it’s okay to ask questions.
Of course I don’t want people to think life is easy-breezy for us, but I wish they wouldn’t think it is awful.
Living with disability is not the worst thing that can happen to you. Sometimes fear of hard things causes us to forget the power of love. And perfect love casts out fear (1 John 4:18). We forget how friendship rooted in love overcomes many obstacles. A life is not measured by what one accomplishes. It is not counted by how helpful someone is or what they give you. The worth of a life is deeply secured by the love of family, friends, and God. And love is never, ever diminished by hardship or pain.
So don’t tell your children not to stare because it’s the polite thing to do. It’s okay to wonder and ask about our lives, because we want to know you too.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!