Tuesday, February 26, 2013

Your Worst Nightmare

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.


Kristin said...

Ginger, I have shared so many of your thoughts and fears and at times am still scared of the future and the unknown - our son with DS was just born 12.22.12. Aside from him having AV Canal, he is doing so much better than we could have ever expected and he is so much more than we ever hoped he would be. It's amazing how your life can change in the blink of an eye... Anyways thanks for sharing this post, I'm looking forward to following your family's journey!


Kristin said...

One more thing... your comment about "a dead baby" really reasonated with me. Following our prenatal diagnosis - when I felt overwhelmed, scared and like I just couldn't have a baby with special needs, all I had to do was think about the risks with miscarriage / stillbirth and that potential really made me snap out of those thoughts... you're absolutely right... a dead baby would have been so terribly worse than what we ended up with. Just like you said above, especially when you take in the little smiles, coos, hugs and everything else! May God bless you and your family!

Tracy said...

See, this is what I keep telling everyone: it's the fear of the unknown that 's scary. Anyone pregnant with a child with DS should first get to know people who have it, and only then decide whether to have it or not. I think we'd be surprised at how many of them would decide to keep it.

Anonymous said...

Thank you for sharing your story. As of next week, my son will be 23 years old. He was born with AV Canal and had it repaired at 4 months old.
So what does life look like for him? He coaches a mainstream rugby league team, coaches and mentors people with disability in sport, he surfs, snowboards, and lives life to the fullest. I was only 21 when I conceived him and had no prior knowledge he had DS. But you know what, I would not change a single day nor a single thing about him because he's perfect the way he is.
Is he accepted by his community? You bet he is! For his 21st we organised a surprise come and have a drink party at the local bowling club. They closed the club and notified people it was a private function. Only those known to my son were allowed in. Over 150 people turned up to have a drink with him! And he knows and interacts with each and every one who attended. They are that proud of him they have a wall in the club with clippings from the local paper. Each time he appears, it gets added to the wall. He's loved and he loves. There is nothing greater than that.
Oh! I forgot! He has a severe speech impairment too! But it doesn't stop him. Check out Brenton Ashford-Potter and see how the future can look.
Tracy is right, people need to get to know people with DS before making the decision.
Again, thank you for sharing your story, Ginger.

Allie said...

Thank you Ginger for your post and to Anonymous for sharing about your son. Our daughter was born on 12-14-12. While I have been so enveloped in nursing and working full time, your blog has been a huge source of support for my husband. You have made him feel more empowered and less alone. Since we are not particularly religious, the "special miracle" and "angel" idea always made us feel a little uncomfortable--for a few reasons. Reading your perspective helps us both to know that we can do this with joy and grace in our own way. Thanks