My son Bennett, who is 4-years-old-going on 5, has a habit of saying, "It's a miracle!" Sometimes he says it of things that, to me, don't seem particularly miraculous, like when we find the missing rain boot, or when the VCR finishes rewinding, or when the waffle pops out of the toaster.
But other times, I'm bound to agree: watching the first green buds on the lilac bush grow into leaves and flowers; lying in the grass noticing the clouds move across the sky; stumbling upon three small blue eggs in the perfect circle of a nest hidden in the tall grass.
Bennett's twin brother, Avery, copies him and echos, "Mir-mur." Avery is two minutes older than Bennett, but you'd never guess it by looking at them, because Avery has Down syndrome.
I've been Avery's mama for nearly 5 years now, and mostly, it feels normal and ordinary to me. So when we recently met a new family, and the woman emailed me and invited us to lunch, I didn't think much of it. I wrote back and asked, "What time, and what can I bring?" She replied, and at the end of an otherwise ordinary exchange, she asked, in the nicest possible way, how she should prepare her children for Avery. What should she do? What should she say?
And there it was--a tiny stab to my heart. Why would she ask such a thing? I wondered. She'd already met Avery; couldn't she see he was just a child--no more, no less?
Being Avery's mom is a little bit like being the mom of a low-level rock star, or a minor sitcom celebrity. People have often heard something about Down syndrome, but it's not always helpful, or true--one mother I know was asked if her child spit and was a biter; I was told Avery probably only ate candy. People sometimes think our kids are always happy, or that they're angels. (One mother I know was told her child was the Bodhisattva.)
The new woman's email didn't say any of these things, of course. But I began wondering what she knew, and didn't know about Down syndrome; what she might be expecting of Avery, or me. The more I thought, the more anxious I got.
I remember feeling a similar mama-apprehension years ago, when I my oldest son Carter was a baby. I packed him into his infant carrier and pulled on my fourth-trimester jeans and my best shirt. I brushed my hair and swished mouthwash and put on lip gloss and mascara. It felt as if I were getting ready for a first date.
I can laugh about it now--those first playgroup women have been friends for years, and we joke about how we used to park all the babies in the middle of the living room like circling a wagon train, and how they would all stay there, and sometimes even sleep, which is so much easier than chasing them through a playground, or coaxing them off the highest level in the play-land, or running as fast as you can after a tiny person who has just figured out how to pump the pedals on a bike.
I write the new woman back and thank her for her questions. I tell her that the best answer is to treat Avery like any other child. I explain that he has no dietary issues or physical restrictions, and that there's nothing especially different about him, other than he's smaller than children his age (most kids just assume he's younger) and he's still learning his words, again, like a littler kid.
I tell her that Avery knows sign language (ASL), all my boys do, and that sometimes Avery signs and kids don't know what he's saying, but he's patient, and he'll keep trying until someone asks, What's Avery saying?, which is like a little game we all play (even me!) until we eventually get it figured out.
I add that in my experience, the littler children know there is something different about Avery, but they don't give it much thought. They see he likes to play, and laugh, and do kid-things, and that's good enough for them. Sometimes older kids have questions like, "What's wrong with him?" and I say, "Nothing, he just goes at a slower speed than most other kids," or "Is it contagious?" which it's not. Often, one or two children will form a close attachment to Avery and will speak for him and help him and care for him, which is always very sweet, but not necessary, though Avery loves it.
I finish the email and hit send. I hope I've been clear, but not pushy; friendly, open-hearted. Which is what I hope this other woman is trying to be, too. It's all very confusing, just like it was in the early days, when we circled the wagons--each of us trying to find common ground, for ourselves, and for the sake of our kids.
A few hours later, a reply arrives. She says they can't wait to meet Avery. Their family has been studying ASL and they're excited to have the chance to use it. I feel like Bennett: It's a miracle! The day is full of them, big and small.
1. It's funny the different perceptions we have of miracles isn't it? I'm so very glad that you had that miracle with this new mom. :-)
Shortly after Nik was born, his dad and I had a conversation about miracles. I thought of Nik's birth and survival as a miracle; he thought of it as science. Sigh. However, in the years since then, I think Nik has taught his father to look for those everyday miracles, too.
Hope the sun is shining where youa re today!
Posted at 8:13AM on Jun 5th 2008 by Niksmom