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Wednesday, September 25, 2013
I have a new neighbor. He’s really new — he was born in May. It’s still a little early to tell, but when they were passing out personalities, this kid seems to have gotten in line twice. He’s the kind of baby adults love to be around — he smiles and blows bubbles at everyone, even total strangers.
He also was born with facial defects. The first time you see him can be startling, but don’t be ashamed or embarrassed if you react that way.
We are hardwired to expect regular and symmetrical features, and it’s natural to be a little uncomfortable when someone doesn’t fit the usual mold. Remember it’s what you say and do — not what you feel — that really matters.
So what should you do if you’re out in public and you see him? First of all, don’t stare. Your mother taught you better, and you don’t like being stared at, either.
If you’re a grownup, remember that, and recover from your surprise as quickly as possible. The child’s feelings are what’s important here.
It may be years before he realizes his face is different from everybody else’s, and the longer that takes, the less it will matter to him when he does.
If you’re not a baby person, keep on walking as you normally would. But if you always stop and fuss over infants, don’t ignore him and his family. He has a sweet, gummy smile, a round tummy, a perfect head and tiny dimpled hands. He is a baby like any other, and his parents love him and love to hear him praised.
If you have a child with you and he or she asks questions, explain matter-of-factly that we’re all different from each other in some way. Some are different on the inside and others on the outside. If the child reacts negatively or wants to ask more questions, you can gently lead him or her away and promise to talk about it later. You may be worried about the baby’s health, which is normal, and which comes from the kindest of intentions. But don’t ask if he’s okay. You can see for yourself when a child can’t eat, move or play like other kids. And this particular baby does all of those things just fine.
Of course, there’s the big question you’re just dying to ask: “What’s wrong?”
Don’t. Just don’t. If you’ve ever had a black eye or a limb in a cast, you know how tiresome it is to have to tell everyone over and over again what happened.
Multiply that by two or three times a day for years on end, and you get the picture. If you think asking “just this once” won’t hurt, remind yourself that it’s none of your business. Then repeat — as many times as necessary. The parents don’t have too many answers, anyway. They and their doctors are feeling their way along, and reminders of that will just make them worry.
If you really are curious, that’s what the Internet is for. Even if you don’t know the name of a condition, looking up the symptoms you can see will usually lead you to a satisfactory answer. And if you feel the urge to help, this is a great time to make a donation to a charitable organization or support group.
Lastly, you might pity him and worry about what his life will be like. Don’t waste your time. He has loving parents, a supportive extended family and the best medical care.
There also is a gang of little boys in the neighborhood — including a brother — who are a few years older than he is. Most of his problems probably will be along the lines of getting blamed for broken windows, being made to eat stuff nobody else will try first, being punched in the arm when the adults aren’t looking and being told to get lost because he’s a pest. You know, regular kid stuff.
For much of human history, people with birth defects have been shunned or hidden by families who were ashamed or worried that other people’s reactions would make the child suffer. Medicine has evolved to a point where most birth defects can be treated or at least made less debilitating. Parents and physicians make every effort to ensure that every child has the highest quality of life he or she can achieve. And our attitudes have evolved enough that the rest of us can offer the kindness and compassion that makes that possible.
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