Sunday, April 21, 2013


When I first found out Jude had Down syndrome, my aunt offered to buy me a book. I sent her the link to A Good and Perfect Gift. I wasn't sure if it was the right book. My religion was (is) a rather difficult thing. I was scared to read a book by a theologian, a protestant theologian at that but her title spoke to something deep inside me. At that time, I did not believe that Jude was my good and perfect gift. I wanted to believe that she was of course and I put on a good face. But there were still those nights when I worried that I would never see her as perfect. I could imagine the good. Of course it was an awful, hard good.

The book came in a ragged yellow padded envelope. I read it in two nights. I appreciated Becker's intelligence. Her elegance with language, and the way she wrestled with love and doubt. Even though my diagnosis was a prenatal one, Becker's story was the first story I had read that captured the emotional world in which I found myself living. One thing that held me was when Becker asked her husband if he would take away the Down syndrome, and he at first says "yes" but as the book progresses, they both start to answer no.

I couldn't imagine that in those early days. In the quiet of night, when I allowed myself to feel all the things, I knew I'd erase that extra chromosome if I could. There would be no hesitation. However in the light of day, I could not think about that erasure, it was too impossible to imagine, and it hurt to hold. H challenged me on this..."If we erased it, she wouldn't be Jude." He knew then but would take me a bit of time to know. The Down syndrome is not the completion of Jude but it is part of her. Just like epilepsy is part of Beastie Boy, and Asperger's is part of Camille. These things have shaped them into the selves they are today. Down syndrome though seemed so much scarier. Again that awful good.

A couple of weeks ago, someone I consider to be a dear friend already, wrote about gene therapy and asked what we thought about it. It was in relation to an article that a few people had sent me over Facebook. A protein is shown to be lacking in people with Down syndrome. Early studies suggest that if they could figure out a way to supplement this protein, they could increase the cognitive ability of people with Ds.  It's an interesting idea, and something that Solomon brings up in his book Far From the Tree.  When my friend asked how we felt, most of us in the group responded that it was good stuff. My rationale was simply that if it gave Jude a higher quality of life then I would be all over it. After all, I give Umberto medications for his seizures. Then my friend pushed us to consider if we would radically change our child with Ds's cognitive ability and that is where things got murky for me. And I have spent seriously a month mulling all this in my head.

I keep coming back to "Would you take away your child's Down syndrome if you could?"

There was a time when I used to lie awake wishing Umberto didn't have seizures. I hated them. They were so painful to watch. Seeing Umberto seizing on the floor, eyes open staring somewhere that we could not reach. His limbs stiff and trashing. His hands curled up against his chest. When it was over, I'd hold his body on my lap, waiting for him to return. I would cry then so that when he finally recognized me he wouldn't see my tears.

But we were lucky and the medicine helped. He still had a few seizures and even now that it's been over a year, we won't' start weaning him until it's been three years. In that time, though, I learned to not wish away those seizures. It only made it harder when they came. And now I sometimes wonder if he was one of the kids who had the horrible side effects, would it be worth it? I am not sure. The side effects of the meds that Umberto takes can be very intense right down to full personality changes and a hardening of features. I also don't know if taking the epilepsy away would change who he is. I do think that we made the right choice in medicating him and continuing with all the tests. I mean for one thing, he gets to have this great scifi picture of himself.

What we did with Camille was kind of the opposite of what we did with Umberto. Camille clearly is somewhere on the "spectrum." There are times when it's more obvious than others. When she was two I thought she had Autism because she didn't talk, wouldn't look people in the eyes, and had a thing for lining up trains. But none of these things were extreme and I thought then that Autism would show up stronger (didn't know about the spectrum). As she got older, I meet some people who had kids on the spectrum and started to piece it together. After a really disastrous K experience, I started to think that we need to diagnosis her and get her into therapy right NOW. H wasn't so sure. He pointed out that she wasn't troubled or in pain. She was doing well academically (very well actually). While she had some odd behaviors we weren't troubled by them. We had to accommodate some...she need soft clothes, didn't wear socks, etc. We were a family who valued difference, and didn't like the norm anyway. So we pulled her from school, and the rest is history. No Camille doesn't act like everyone else. She has some quirks that make people uncomfortable. Her hair is a wild mess because she hates combing it and the idea of cutting it sends her into shock. But she's clean and comfortable with herself. I wouldn't change Camille for anything and that means not taking away the Asperger's (if that's even what she has). She is this quirky, self confident kid partly because of this difference. I mean who wouldn't want a kid who randomly decides to act like a cat in public including ear scratches with her foot?

And then there is Jude. Right now I can't imagine Jude being anything but who she is. At four months, I don't know how that extra chromosome is going to shape her. But it's weird for me to even think about her in the terms of having or not having. Mostly she is just Jude. Just like the other beasties are who they are to me. I don't think a lot about their genetic make up. You know I'm busy trying to keep them from going feral. This is not to say I am not conscious of the Ds. I still have moments where I see in the way her eyes crinkle down when she smiles. But that smile is all Jude just my other kids have their own unique smiles.

The markers are there. Sometimes I see it in what she is not able to do. When confronted with a baby her age, it's clear that in some ways Jude is a bit behind physically. These are small things though. I do worry that as she gets older those things might not be so small anymore. But the other people I am meeting who have Ds? Well for them it's just a part of the complexity of who they are...all that stuff that the rest of us carry as well.

A couple of weeks ago, I sat at a table for our Ds support group at a disability expo. I watched a 13 year girl with Ds wheel herself all over the place. Laughing with her friend. Checking out the other booths. And most amusingly flirting with the two teen boys who were manning the Asperger's support group table. The boys were trying to flirt back but it was awkward. This awesomeness just brought it to me again that what it comes down to is that we are all human and that's about the only thing we can guarantee. I wouldn't change Jude's genetic make up any more than I would change the fact that she's human. I will do what I can to make sure she has a good fulfilling life but I am not going to change her to make her someone different.

Why? For the same reason I don't want to change my other kids. What we really seem to be getting at when we come with these questions is this: Would you make your child less different? More normal? Because really isn't that what I feared? I realize now that was the wrong thing to fear. What's to be feared is a world that hates difference and wants to stomp it out. A world that if it does accept difference only accepts it if it comes with assistants or better yet segregation (can't that child be special somewhere else?). Our world does not treat those with difference well. When I read about Ethan Saylor and Antonio Martinez, I realized that what I had to fear was not my child's genetic components but what people would try to do to my child because of her genetic components. Instead of fighting for her to change, I need to fight for her right to be who she is no matter how uncomfortable that might make others feel. Jude has the right to not have anyone, including me, ask if her Down syndrome should be taken away. Because in the end what matters is that she is allowed the space to grow into herself.


Crystal Rhew Staley said...

"What's to be feared is a world that hates difference and wants to stomp it out."
This is what keeps me up at night.

Ginger Stickney said...

Me too Crystal. It's hard because my kids are SO different. I worry about Umberto because he's a young Hispanic male. I worry about Camille because her quirkiness can be misread. I worry about Jude's future. I want to make the world a better place NOW.

Diane Hill said...

Beautifully written my friend!

Deborah said...

Such a thoughtful post. I read A Good and Perfect Gift when Ben was about 4 months old, and I so appreciated "hearing" someone's words about perfection - and what it means to have value. I know that I have a lot of understood, but not verbalized/fleshed out, ideas about what it means to have a good life, and Becker's book challenged me to think about what traits I truly hold dear. I appreciate your perspective with all three of your children.