I am 37 weeks pregnant. Huge and tired. Jude has not been moving as much and I am scared. The midwife seeing me decides to give a me a non stress test along with an ultrasound to make sure Jude is head down and ready to go. I lay down on the table, I'm a pro, and pull down the pants down over my monstrous stomach. The ultrasound tech asks what we're looking for and I explain the midwife's concern and mine my own. She looks at my chart, and says "The baby has Down's." I am not at a point where I feel comfortable correcting people so I just nod. "That was my worst nightmare" she says, "when I was pregnant with my last child." I don't know what to say. I am a little shocked, a lot sad, but not really offended. Maybe I should have been. Maybe I wasn't so angry because I had kind of felt that when I got my 1:5 odds. But I had the grace that came from learning that for me there was much a worst nightmare: A dead baby. When I saw Jude alive and kicking on the ultrasound before my amino, I had known then that all that mattered in the end was that she was alive.
(So THIS is some one's worst nightmare. It's kind of laughable when you look at that sweet little face.)
Maybe I wasn't angry because I was too busy feeling sorry for the tech, and for the past me who just didn't know. Perhaps it wasn't sensitive of her to say this to me but I've rather become used to people using me as a confessional. But her fear is real and it's real for many woman who learn that there fetus or baby has Tri. 21. In a world that offers rather limited ideas about excellence, it is perhaps a scary thing to learn that your child might not ever reach those levels (not that many of us do anyway but we forget that when we hear about our child having a cognitive disability). I had forgotten for a moment that what I want for my children has little to do with these constrictive visions of greatness.
As I sat in another room with a contraction belt and heart rate monitor wrapped around my stomach, I thought about what it was that I feared, and what it might be that this woman feared. I suspect it's the fear of the unknown. I didn't know anyone with Down syndrome when I found out about Jude. There were a couple of young men at church. One was an altar helper (he's hardly a boy so I don't want to use that term). They both seemed like nice men but I hadn't talked to them. They certainly weren't scary or hideous. I was a bit scared of having a child with serious health issues. I was a little scared of having a child who could never learn. Of having a child who would always be a child. And all of these fears were based on ignorance. Children with Down syndrome often do have very serious health problems and risks. But there's no guarantee that any child wont' have these things. And children with Down syndrome respond better to treatments than "typical" kids. Kids with Down syndrome do have varying levels of cognitive impairment but they are capable of learning and growing just as we all are. Chances are that Jude will not only learn but that she'll also grow up, fall in love, and be an adult:)
What I came to realize as I listened to Jude's little heartbeat that a lot of my fears were about me. Could I be a good parent to a child with Down syndrome? I am so impatience and cranky. I'm droll and cynical. I'm sarcastic. I like dark comedies. This wasn't what I imagined a mom of a child with Down syndrome looking like. When people told me we would be the best parents for a kid with Down syndrome, I was kind of like "wow you think?" I didn't think so. We are not regulated. We pretty much unschool. We move. I worried that I wouldn't be strong enough to speak up for Jude. I hate challenging authority(seriously...I am a great one for abstract political activism but put me in front of a Dr and I lose my voice). I feel uncomfortable asserting myself in order to have needs meet. And some of the fears about me were a little selfish. I didn't want to be the mother who scarified her entire life for her disabled child. While my children will always be welcomed to live with us, I had always hoped that they could do that with a smidgen of independence. These fears I don't have the answers too. I suspect though, having meeting Jude, she's going to be okay. She is seriously a fine proper beastie girl. She appears feisty and properly leery for big sister R. She has a spark in her eye that promises mischief. And the other day I watched a very reassuring video where a preteen girl, gave her mother sarcastic what for. Very droll indeed. I think that perhaps Jude will be a punk rock girl that just happens to have Down syndrome and that seems like a pretty awesome future.
When I went into my last midwife visit, I proudly brought Jude to show her off. After all, these visits are partially about a triumphant return. The ultrasound tech was at the desk when all the aides came to admire Jude. Every one exclaimed at how lovely she was, and were thrilled at her health. I meet the eyes of the tech, and I could see the wonder there. I thought and I better she heard somehow "so this was our worst nightmare? Imagine that." I think maybe that in moment Jude gave us our absolution.