My new email friend from Texas, Amber, whose baby girl has hemifacial microsomia like Charlie only without the nerve thing, is making "awareness bracelets" for microtia (little ear). The bracelets will have two-tone stones to show that kids with microtia are beautiful just as they were born, as well as with their new ears; clear stones for clear hearing; an ear-shaped charm and a ribbon charm. I am so impressed with Amber for this. It shows creativity, industry, and a positive outlook. I was genuinely moved when I saw her email about it, and if by some chance she finds this blog and reads it, I would want her to know that I support her efforts one thousand percent. But I'm not ready to fork over the $22.00.
First of all, isn't it getting to be enough with the ribbons and the bracelets? And the months? Did you know that April is National Irritable Bowel Syndrome Awareness Month and National Foot Health Awareness Month? Second, microtia is only part of Charlie's problem, and I'm not sure it's the worst of it, though it's certainly the most noticeable. Third, although I am very open about Charlie's birth defects, and intensely grateful for the support and information I've gotten from the microtia discussion group, there's something that doesn't feel right about the bracelet. I am desperately relieved to have found other parents to talk with, but I'm not certain I want to wear the team jacket to the mall on Friday night, if you know what I mean.
It's kind of the same way I feel about this hearing-impaired babies group that I'm bringing Charlie to on Wednesday. Charlie sees a speech pathologist from Early Intervention once a month. She is observing his vocalizations (Ahhhhhhhhhhhhhh!) and oral motor play (Fllpthpth!) to make sure he's developing properly and catch any problems that come up. She runs a group for babies with all kinds of hearing impairments and keeps inviting me to come by. I'm going, because I believe I should take advantage of all available help, especially the free stuff. But I insist on viewing Charlie as a normal kid who doesn't happen to hear as well on one side.
A few days ago I spoke on the phone with a woman whose 15-year-old son has hemifacial microsomia and had Dr. Brent do his ears. Dr. Spiro hooked us up. This kid actually had anotia--no ear--on one side at birth and microtia on the other, and he has hearing loss on both sides. I asked her if he'd had trouble with his eye. She said he did scratch his cornea in gym class once when he was pitching in wiffle ball and the ball came right back at him. (Then she said her other kid fell off his bike and broke his hand, which was quite a bit worse, so like I've said before, no point worrying in advance.) She said that if someone walked into her son's classroom and said "Which is the handicapped child?", her son would be looking around with everyone else wondering who the person was talking about.
That's what I want for Charlie. I'm ambivalent about things like bracelets and support groups and downright opposed to special treatment at home or in school. Like Jim said on the day Charlie was circumcized: "That's the first in a long line of problems he didn't know he had."
I'll probably end up buying one of Amber's bracelets. I never thought about birth defects before Charlie was born. I thought about miscarriages and serious problems like Down Syndrome, but crooked faces and wacky ears? Nope. My friend Meredith was worried that her baby (now three years old) would have a birth defect because her husband is a Gulf War vet and she'd heard scary stories about Gulf War vets coming home and having babies with horrible syndromes. The doctor told her that Dan's service in the Gulf might increase the chance of certain birth defects from one in a hundred thousand to one in fifty thousand, but that for any given couple, the chance of having a baby with a birth defect is three in one hundred. Three percent! No one ever told me that, or if they did I certainly didn't listen. A little awareness is not such a bad idea.
