Thursday, September 20, 2007

Story from a Magazine

My mom called me the other day and said that my cousin had left a message on her answering machine saying that she had just read an article in a magazine about a child with Down syndrome. Woo-hoo!!! I think it bothers my mom more than me but how annoying is it that as a magazine addict (especially any having to do with parenting) I never see a picture of a child that looks like my Ella, or read articles about them? So, we were quite overjoyed and set out in desperate search for Baby Talk magazine, and do you think we could find it, NO! Anyhow, I did find it online and thought I would post it in case anyone missed it! Enjoy. (It says at the end that the author is publishing a book next year about raising her son with DS, can't wait!)

A New Song Parenting my son with Down syndrome isn't a trial; it's a joy
By Jennifer Graf Gronenberg

I once read that coyotes howl and yelp to keep in touch with each other, and that their songs are a celebration. I am always surprised when I hear them, songs that are beautiful and chilling and sad and exhilarating all at once. The sound resonates deep within me. The longing, and belonging. Coyote songs remind me of listening to opera — I don't understand it, but I do.

At the end of each summer, my friend Sarah throws a deck party. She invites women from all over the valley; some faces I recognize, others I don't. Early in the night, I find myself speaking with a woman I know only a little bit. She asks what I have been up to, and I tell her about Avery. As soon as I reach the part about Down syndrome — the genetic condition that affects cognitive development and can cause other health issues — she gets what I've come to think of as That Look. It's as if she slipped on a Halloween mask, behind which she retreats as she tries to think of something to say. The woman I was speaking with is gone, and in her place is the yellow smiley-face icon. I instantly feel bad for her. I see that she's struggling. I intervene. "It's okay," I say.

"You must worry," she says, after a moment. "I mean, every parent worries. You must worry."

Her comment is a new one, an observation I had not heard before. Usually it's "I'm sorry" or "You're so brave" or "I couldn't do what you do" or my least favorite, "God only gives those children to people who can handle them." I dislike these remarks for reasons that are obvious to me — I am not sorry, I am not brave, and I don't do anything that any other parent wouldn't do. The last one, in particular, implies that my son is some sort of punishment, or a trial. I don't think of Avery as either.

But tonight, with the summer breeze floating gently across the lake, in the safety of Sarah's warm and friendly home, surrounded by many of my closest friends, I want to give this woman a real answer to her question, not a platitude or a cliché. I think for a moment, and what I feel surprises me. No. I am not worried about Avery.

I worry about my eldest son, Carter — he is gentle and sensitive, which are qualities that I respect but that cause me motherly concern. Sometimes I wish I could teach him to protect himself more, to take his heart from his sleeve and wear it inside, safely shielded by his rib cage. My youngest boy, Bennett, is fierce, and while I admire his daring, it also gives me pause — how will we make it through the teenage years? But Avery? I worry the least about Avery.

One evening, I am reading a book on the couch. Carter wants me to get him a glass of milk, which he can do himself, but he wants me to do it, to stop reading and pay attention to him. I mumble something about "in a minute," vaguely aware that I am raising children who are jealous of their mama's time with books. But I also believe they'd be envious of anything I did that didn't include them, even if it was mopping the kitchen floor, and at least this way, there is a chance that my love of books will be passed on through osmosis. So I continue to read.

Bennett is next, also wanting milk, a copycat of his older brother. In fact, I suspect there might be collusion involved with this second request. "One moment," I say, holding up my index finger, still reading. I am aware that Avery has pulled up next to me. He sits beside me. I am still reading. He sits quietly. I am transfixed, carried away from my life by the sentences of another woman, in another place, at another time.

Carter and Bennett have moved on and forgotten about me, about the milk. Avery strokes my hair. He is there. Avery is still beside me. He is wiggling, or something. I am busy. He is wiggling again. I turn the page. He reaches up, places each of his two small hands on my face and gently turns it from the page toward him, so that we are eye to eye. Then he signs "Milk." He wants milk, too. Where the other boys have given up, Avery has stuck with it. In his single-mindedness, in his desire, in his knowledge of his desire, he has persevered. In his own way. In his own time. Which, as it turns out, is the right time. Time enough for me to lift my head out of my book and give my attention to my children, who, after all, have been very patient. Especially Avery. This is why I do not worry about him. Avery will find his way.

Imagine this: I am at a party having a conversation with a woman I barely know. I mention that I have a child, just a normal child. Would she pull out the smiley-face mask of empathy and pity and confusion? I don't think she would. I think she'd tell me about her children, or if she were childless, about her nieces and nephews. Why is there a difference? Is it so hard to think of Avery as a child, first? Is it impossible to think that in addition to bringing us challenges, he also might bring us joy? Is it so difficult to imagine a life with Avery, who is the first person I know who truly marches to the beat of his own drum? Sometimes I think Avery will find a way for all of us.

So I worry about a lot of things, but not Avery. I try to explain this realization to the woman, but the point is lost. Her genuine curiosity is gone and I am talking to the smiley-face again. It is a party, after all. The sun is warm and glowing and the stars are just beginning to come out.
Sarah has lit a dozen white votives in glass jelly jars, and I place them along the railing of the porch. The night is filled with the sound of women's voices, and laughter and music. In the midst of these women, I think of the coyotes. Calling to each other. Finding each other. Belonging. My song is the same as the other women's, mostly. But toward the end, there is a new part. It is a refrain in the key of Avery. I am not sorry. I am not afraid. I like it. It is strange and beautiful all at once, and if you let yourself listen, you might not think you understand it, but you will.

Jennifer Graf Groneberg lives with her family in Montana. Her book, Road Map to Holland, about parenting Avery, will be published in 2008.
Babytalk, September 2007


RK said...

I had a friend give me a copy of the was interesting to read about the photographer's experience with the photo shoot for the adorable little girl with DS on the cover. There were like nine kids they had at the shoot, and they showed their pics inside the magazing too. The photographer was surprised that they weren't "fragile" and that they just seemed like babies. It was neat to read about that part of the perspective, with the photographer coming out more aware and with a positive experience on the other side.

Of course, we can read lots more by Jennifer Graf Groneberg about her beautiful sons at Pinwheels

Michelle said...

I was going to post Jennifer's blog for you too, but RK beat me to it LOL

Thanks for posting the actual article though; I knew Jennifer had that article published in Baby Talk but I had yet to read it!

Laurie said...

Thanks! I had heard that this article was out somewhere, but didn't have the time or the energy to search for it.

Thanks for making a lazy mom's day :)

Ginger said...

My name is Ginger and I live in Arizona. I have 5 children. The youngest is named Emma Grace and she is 11 months old. She surprised us and was born with mosiac down syndrome. I saw your blog while looking at another blog "bluberry Eyes". I read your article and I just wanted to say hi and say that your little Ella Grace is beautiful. Our blog has some pics of our little Emma Grace. So nice to read your blog. And I would love to hear from you as well.

Ginger said...

I was so glad to get your email. I understand about the wanting it to be mosaic. I know that it can manifest itself just as severe and sometimes more severe than trisomy 21. We thought is was trisomy 21 without mosaic until I got a picture of her chromosomes when she was probably about 6 months old. I saw that one of the cells was in fact T21 and the other one was a normal cell with 46 chromosomes that is when we asked for a test where they would check 100 cells. And that was when we confirmed mosaic. Can I ask how is little Ella Grace?

jennifergg said...

Thank you so much for posting this, and for reading it and liking it! I appreciate all the support and encouragement, and I LOVE BabyTalk for featuring our kids in such a loving and supportive way!