Part 3 of an 11-part series about Life With Jessie (written in the early years), first broadcast on CBC radio in 1997/98. The series will be re-shared and posted here on the weekends through the month of October 2012, as part of the 31 for 21.
We have been invaded by cloth diapers and disposables, infant chairs and rocking chairs, a cradle and a crib, not to mention friends and relations. The most noticeable new acquisition, besides Jessie herself, is the breast pump. Not one of those little hand-held jobs, but the great big industrial model. The lights in our apartment pulse when I hook myself up and turn it on. I feel like a cow, but at least I don’t feel like the world’s worst mom anymore.
The day I admitted defeat, I sat in a corner in the living room and cried. I was sure I was not going to be able to anything right if I couldn’t even get her on my breast. I was convinced that her whole fragile future depended on it. My mother, who had come to stay with us for a while, hugged me, told me I wasn’t a failure, that I was doing a great job, and cooked liver and onions for dinner. For some reason it tasted delicious and I looked at her in awe.
But Jessie is getting my breast milk, even if she didn’t get on the breast. It certainly wasn’t for lack of trying. La Leche League meetings, droppers, teaspoons, trying every conceivable position possible, and more than 12 hours with a lactation consultant who said that Jessie certainly was persistent—in sucking the wrong way. I drew the line at sticking my finger down her throat and making her gag as I tried to massage the part of her tongue that she was supposed to use to draw milk from the breast. I guess we’ll have to watch what we teach her in the years to come.
I’ve been reading everything I can get my hands on about Down syndrome. Articles on genetics, heart defects, muscle tone, speech, and education. But my favorite book is the one that my 12-year old cousin found for me in his school library called Our Brother Has Down Syndrome. It’s written for children and has lots of picture. Pictures of a 3-year-old boy with Down syndrome eating ice cream, getting into trouble, hugging his sisters. It’s the book I go back to again and again because it’s warm and human, and it gives me hope.
Hope for what? I guess that Jessie will just be a kid, like this little boy in the book and that others will see her that way.
I have this urgent need right now to tell everybody that she has Down syndrome. I can’t help it. The first time I went to our corner health food store with her they all oohed and aaahed and said what a beautiful baby. “Yes, and she had Down syndrome” I replied, watching them. Waiting. But there was no explosion, no withdrawal, only comments about her delightfully blue eyes. I don’t know why I need to tell strangers that she has Down syndrome. Maybe it’s my way of getting used to the idea, of desensitizing myself. Or maybe I just want to get it over with so we can get on with life and they can be as amazed and impressed as I am when she smiles or turns her head to a sound.
I am living in a constant state of exhaustion. What on earth did I do with all my time before Jessie was born? Between feeding and pumping and rocking and reading, I spend a lot of time cutting out pictures from magazines and drawing black and white patterns and faces on paper plates to put up around Jessie’s crib and change table. We’ve hung rattles and tin pie plates and small bells in places where she’s likely to hit them by mistake and make a noise. We massage her feet and her head and her belly and move her arms and legs while singing nursery rhymes and tying to remember all the words that somehow disappear after the first two lines.
Bev, our infant development worker, has lent us a great book with lots of songs and rhymes and Jessie seems to love these. Bev. What would we do without her? It seems that giving birth to a child with a developmental delay has all sorts of bonuses I never knew about. Bev is one of them. She comes into our home once a week and works with us so that we can do all we can to help Jessie grow. She shares in our celebrations, is a keen and caring observer of Jessie’s development, and is able to hook us up with the resources that are available for Jessie and ourselves. More than anything, she supports us as parents, giving us the information and courage that we seem to need to forge ahead. I know all parents celebrate with delight their child’s first gurgles and smiles and steps. But already I notice a difference. We can’t assume that Jessie will just do these things, we have to set up situations that will lead her to them. Bev gives us ideas and is there to celebrate each tiny step she takes.
My biggest problem is that Jessie doesn’t sleep between 2 in the afternoon and midnight! The doctor says this is her social time, but around 7 I run out of “social” steam, and so I bundle us up, Snuggli and all, and we walk the streets, ending up at the club where Dan is doing his show. Of course, as soon as HE puts the Snuggli on, she falls asleep. I thought babies with Down syndrome were supposed to be lethargic, sleepy, and without much energy. But that describes me, not Jessie. She’s wide awake, alert, and demanding.
The payoff is—she smiles! Just when you are ready to have yourself committed for ever having had sex, they smile! It’s not gas, it’s not a weird reflex. It’s a smile! At first I wasn’t sure, because it seemed like just a flicker of a grin. But in the last week she had developed a great big toothless smile that seems to eat up the whole world. And the best part is, she smiles at ME! She looks at my face and smiles with delight and I feel this electric current run between us. She knows of course, that now I’ll do anything for her. I’m hooked. For life.