Safety net

I have a lot to do: this is a fact of my every waking moment (and my sleeping ones too, though I'm less aware of it then). However, there are some things that deserve a rant no matter how busy one is, and this is one of them. Stop reading now if you don't want to "get involved."

As a parent--as a mother--of a child with Down Syndrome, it behooves me to point out that a new prenatal test is being released soon that will make testing an unborn child for Trisomy 21 safer, more reliable and available earlier. This is not good news, obviously, especially for those of us who love one of "these children" and all those who might have had the chance to discover the adventure for themselves.

I'm not going to point fingers at anyone who gets prenatal testing, that's not my intention. It just grieves me that it's so commonplace now that we have become immune to what it is we are doing when we let a doctor take a sample of blood and look for "abnormalities." I do, however, want to point out one very obvious fact that I think gets left out of most discussions, at least among plebes like me, and that is the issue of who profits from the test.

When a mother gets this "MaterniT21" test, as it's being called (for one full article on the subject read here), no matter what the diagnosis is, who profits? Full marks if you said the company that produced the test, i.e. Sequenom.

We may think that it's the woman, or the couple, or their family who "profit", but the fact is that Sequenom want you to take their test, they want your money and they don't give a damn what the result is for you. This is evidenced by the fact that they don't put one red cent into developing education or training materials for those who perform or take this test. There is no moral dilemma for them, this is not a child's life in limbo, or a family's journey, it is simply a few billion dollars they stand to make if people buy the jargon of "safety" and get the test.

Here is another fact, just as unappealing to many people: there is no such thing as safety. You can have all the tests in the world and your child is still unknown until he or she is born. There is no test to see what their grades will be, if they will be predisposed to stealing (or worse). If they will have friends or finish school or end up on the streets. You can never know, you just have to live with and love the people you've been given, and you get to find out along the way how blessed you have been.

Sorry for the rant, but I have to speak out. If not for myself, then for one of "those children"-- and two others who learn, in part by my example, what it means to walk beside him every day. I know Adam, and all my children, not from tests but by asking the one who made them to help me know them.

It is not easy, but it is surprisingly very safe.

The comments keep coming

If any of you looked at the last post that I referenced, written by my friend Amy Julia Becker, you should have a look at her most recent post. You can click there or on the link on the right. It's worth looking at to see, written in black and white, some of the horrible things that people say about "those children." And Amy Julia's surprisingly calm and thoughtful response to it all.

The comments she quotes might surprise some of you, sadden or pain you, but they have been heard by all parents of disabled children. Yes, even me. I said in my comment to her that one time a mom, a nice, upstanding, middle-class mother, said to me in the park "I could never have one of those", referring to my Adam. She wasn't being malicious, she was being both honest and completely transparent in her ignorance. She is probably a person who has never had anything go wrong in her whole life, so why should she start by welcoming a defective child into her life?

I get it, that we humans like choice, we like getting things right and things going right in our lives. We have emotions and thoughts that are occasionally painful to others or painfully stupid, and sometimes we let those loose on the world. It doesn't bother me, because I am happy with my choices and with our family. But...

I still can't figure out the but. There is definitely a but there...maybe it's that protective impulse to want people not to say or think those things because someday Adam may learn of it. I guess also it's a desire to want people to at least be willing to see more, to be open to more. To consider for one minute that a child with Downs, or cerebral palsy, or Edward Syndrome is just as wonderful a gift to welcome as any "normal" child. I want people to see that life is complex in its imperfection, and running away or trying to shield yourself from that imperfection just limits you from...well, life.

I'm pretty sure you don't know what you can't do until you try/do it. But maybe that's just me. And no, just to set another myth on its tail, you don't need superhuman powers to raise a disabled child. You just need to do it, same as any other child. I'm not special because I'm caring for Adam, I'm special just like everyone else on this planet. And blessed because I'm caring for Adam.

A really good article

A friend of mine/ours named Amy Julia Becker has written a post for NYTimes.com. In it, and in a previous one, she talks about her experiences as a mom of a child with Down Syndrome. I'll have to look back for the link to the other article, but the link to her most recent one is here. My comment is number 64, but the wealth of viewpoints in all the comments is worth taking a look at if you have time.

Flying Solo

Brian is away for 10 days, so I'm going to pull the obligatory late night and write a little bit about the week. I just talked to him and he's doing fine, by the way--about to have the official book launch for his finally-published PhD thesis tomorrow evening. Funny how 15 years can seem like not such a big deal when you finally get to standing around with a glass of wine handing out signed copies, but then again I was only an observer!

So Adam's birthday was a good day--Sunday it was, and I still haven't downloaded the pictures (but I will)! We took a cake to church which was completely demolished. Either the Provost spoke extra long or it might have been a good cake after all. I say that because it was still a bit warm when I took the outer ring away and the whole thing sunk and splooged out in a very non-cake like form, but people still liked it which was good for me, bad for leftovers! Then we had lunch and took the boys swimming. A trip to the pool would not be complete for us without two things: Adam poops and we have to go change him in the middle of the swim, and Adam pushes a few kids off the jumping area who aren't expecting it and end up crying on their parents' shoulders. Both of these things happened. At least he usually picks the kids with very understanding parents--though someday I imagine I will end up with a black eye because of his "quirks." The boys were good enough to let me go sing with the choir in the evening, and had a nice "boy evening" themselves, so it was a great day all around.

The other major event of the week was Adam's trip to the dentist on Monday. I knew it would be bad, and having it immediately after school was not the best timing either. But that boy knew as soon as we walked in that he was going to have to do something he didn't want to do, and it was very nearly an ugly scene. I tried talking, cajoling, pleading, laughing, demonstrating and reprimanding: in the end I had to lay back in the chair with arms and legs enveloping my very strong now-7 year old and hold him down. The dentist helped, and after he realised that having a mirror in Adam's mouth was not a good idea, he carefully used his fingers and eyes to inspect Adam's teeth. He had 4.5 seconds to do this, while Adam was howling and before he broke out of my grasp. But not before he gave me another hernia and left the dentist and me sweating! I am pleased that our dentist is both young enough to manage the energy that Adam has/takes and nice enough not to curse us until we've left the building.

Luckily all looks well for now, but I know the dentist was thinking the same thing as me: what happens when he has to do some work?? Funny thing is, apparently Down's kids don't get decay as much but do get gum disease. Our only defence of course is brushing his teeth. A lot. At least Adam is a pro at brushing his teeth, something we (amazingly) have never had to fight over. Hopefully that will stave off problems for a long time. I guess we can add future dental work to the growing list of things that might require anaesthetic to carry out, but I plan to cross that bridge...later.

That's all for now--more (and more pictures) soon.