Darker Moments

It's time to write about the stuff I rarely talk about. This post, and others like it, are a big reason why I started blogging again. I need some kind of outlet.

There's a group that meets the 2nd Monday of every month nearby. They're parents of children with Down's. When I first heard about the group, I thought it was sort of group therapy, a place where parents could get together and talk shop about their challenges, their triumphs, and also, you know, be around people they might be able to share their deepest thoughts with and be understood instead of judged.

(It's more of an information sharing club thing though, from what I can tell from their website. I may go anyway.)

I don't know why I have this fear of being judged about how all this -- my friends are far from judgmental and are actually very supportive and loving. There is a common darkness all new mothers share which stems from our deepest insecurities about our qualifications as mothers and also our incredibly unpredictable hormones. I mean, if I confide in another new mother that I wake up 50 million times a night to lean my head over Kiki to make sure she's still breathing, that new mother nods knowingly.

I don't know though that I can say to another mother, "I have this deepseated fear that Kiki will never develop a personality," and get anything more than a shocked and perplexed frown.

We found out that Kiki had Down's when I was still pregnant. I got pregnant when I was 39, and I didn't know at the time that I had a great-uncle with Down's (he died when he was 10 or 11). My doctor mentioned that, due to my age, it was medically suggested that I get genetic screens early in my pregnancy.

I declined at the time. I said it didn't matter to me. Which was a lie. What I was afraid of was if the tests came back positive at that point, I would have a whole other option made available to me that I didn't want to contemplate. To me, at that time, that was the only reason you would get a screen -- if it were positive, then you would terminate, right? Otherwise, what was the point?

So I said I didn't want a screen, because regardless of the results, I wasn't going to terminate. Truth be told, I didn't want the option; I was scared I'd be a chickenshit, and I didn't think I could live with that. Then I half-reconsidered, and said, "Well, maybe it would be good to know, so I could prepare myself."

And my doctor said, "You can't prepare yourself for something like that." So we were in agreement, and I didn't get tested. So we didn't discover Kiki's condition until I was already 22 weeks along, due to some irregular ultrasounds and an eventual amniocentesis.

And here's where we cry bullshit on my doctor. There are some things in life you really can't prepare yourself for. The death of a loved one, for example. But my daughter wasn't dead. She was just about to be born, for crying out loud.

But there is a similar mourning process that occurs when you get news like this. I know it sounds like I'm speaking for everyone, and not just myself, and I admit I'm generalizing. But I don't know how many things I've read now, written for new parents of Down's babies, where the first line goes something like, "It's okay to grieve. "

So I went through the five stages of grief. I think I still do, from time to time.

But every piece of literature is also quick to point out that you can't grieve forever. This isn't a death. This is the birth of a baby. It needs to be a celebration.

Here's everything I "knew" about Down's Syndrome when we first found out about Kiki: they have distinctive facial features, they're retarded, and they don't live very long. Here's how I treated people I recognized with having Down's Syndrome if I saw them in public: I smiled stiffly if they made eye contact, but otherwise I avoided eye contact and pretended they weren't there.

Now, I like to think of myself as an enlightened, educated, and empathetic woman. I obviously am not, but I like to think of myself that way. What scared me most about my ignorance, when faced with the reality that is Kiki, is that I know I am not alone in my ignorance and my behavior. My daughter was going to be born into and live out her life in a world full of people like me.


The best cure for ignorance is education. At first I was torn between an absolute need to know every little nitty gritty thing about Down's Syndrome and the utter fear that what I'd learn would be worse than what I already knew (which was, as I said before, nada.) I think I stewed in my juices for at least a week before Kipp convinced me to start talking about it to friends.

But what could I, in all honesty, say about it? On one hand, I was afraid of becoming the object of pity. On the other hand, I was afraid I would be lectured for being a bigot. I didn't see any win-win situation facing me at all.

I have good friends, though. No one judged me for my breakdown. They tried to comfort me. And I felt even uglier about that because they one main thing so many of 'em used to comfort me was to point out that people with Down's syndrome are sooo loving and affectionate, and all I could think was...

I know it sounds ungracious. It IS ungracious. Everyone wants loving children, right? But all I could think, all while I was smiling and nodding and pretending to count my blessings was, "I have two dogs who are affectionate even to the point that they'll run up to absolute strangers and love on them. I don't want another dog. I want a daughter." In one of my darker moments, while watching the dogs run around outside, I actually even said, out loud to no one, "Well, at least I can be relatively certain she won't eat her own shit."

These are not motherly thoughts.

I didn't know what I wanted in response to the knowledge of Kiki's condition. I honestly didn't even know for certain what it was specifically that killed me so much about it. Then one day, it dawned on me.

It wasn't a spontaneous epiphany by any means. I'd already overcome my fear of education, had perused all kinds of internet sites, bought 3 books to assist me in helping her early development, as well as general knowledge books to gain some kind of understanding of what I was facing (I'll post a bibliography in the next day or so.) I wasn't getting much comfort from any of them, interestingly enough, but it was galvanizing me with a sense of purpose and motivation to face challenges head-on.

What started the real epiphany was this. We were telling our friends a few at a time, mostly because after a while, I didn't even want to air it anymore. Anyway, I told one friend who happened to work at DCO (which is the local clinic where they provide therapy and daycare for children with disabilities.

She reacted with pure and absolute glee about it, which in turn made me feel slightly giddy. I asked her about her experiences with working with children with Down's, and she started with the usual, "They're so affectionate," and my glee absolutely ended, and I began to tune her out until she added, "They can also be the most stubborn little brats. And a few of my Down's children can't be trusted around open doors because they run!" And that? Made me giddy again.

And the second drop in the epiphany bucked. One day Kipp decided to tell another one of our friends about Kiki's condition. He opened it up with, "There's something I want to tell you about our daughter."

She reacted in alarm, because Kipp is never serious, and for once he was -- serious. He told her Kiki had Down's and she stared at him for a moment as if waiting for the other shoe to drop, and when it didn't come, she responded, "That's it? I thought it was something serious!"

I fell in love with that woman instantaneously. And that's when it dawned on me, why the whole "they're so affectionate" thing bugged me. It wasn't just that it drew on my fears that my daughter was never going to be more socially developped than a dog, it was that it was offered as a consolation prize. It's like it was the only positive thing anyone could think of to say about the situation.

And this is what made me start thinking about why her condition depressed me so badly, why there is a grieving process at all when parents learn their babies have Down's.

I can't speak for others, but I can speak for myself. I grieved because something did die. Not my baby, but my dreams for my baby. I've spent my whole life dreaming about a wide open future for my future children, and suddenly I felt like the universe had told me in no uncertain terms, "Curb your expectations, woman. There are limits now. Now there are things that will never happen, whether you dream 'em or not."

I mean, rationally I knew that I could never control my daughter's future. But there's a subtle yet jarring difference between knowing that, for example, your daughter may not ever want to become president despite your own desires and knowing that that door -- and many, many other doors -- are absolutely and irrevocably closed to her, and without any choice being made by her whatsoever.

I've begun to fear now that she'll always feel like a disappointment to me. This breaks my heart. I always felt that way growing up -- a disappointment to my father. The last thing I ever want to do is revisit that on Kiki.

But on the other hand, I feel resistant to lowering my expectations. That feels like a cop-out. Why shouldn't I still want a rich and fulfilling life for my daughter? She's not unworthy of that.

So I began to take stock of my expectations, trying to drill down to what was most important, and toss away what was simply frivolous prideful things. I've always dreamed of having a bright, inquisitive Honor's Roll child with whom I could have deep, meaningful theologic, philosophic, and political conversations with. Okay, well, encouraging any person to be bright and inquisitive can't be a bad thing. Honor's Roll -- well, I've come to learn that Kiki can and WILL be going to school with kids her own age, starting at 5 in kindergarten. Well, if she can attend a normal school, why couldn't she be on Honor Roll? Her condition doesn't guarantee stupidity, just retardation -- which means she'll be slower to catch on, but doesn't mean she'll be uncapable of catching on. So it'll be more challenging for her, and for us to help her, but doesn't that, in the end, mean the rewards will be that much sweeter?

Maybe it sounds like I'm just rationalizing, and grasping at straws. But when I was in the hospital, one of the nurses made it a point to introduce herself to me. She had a 17-year-old daughter with Down's. She'll be graduating next year. She's been fully integrated into the school system since she was in kindergarten, and because her schoolmates have known her since they were so young, she's always been fully accepted by them. She even has a boyfriend.

Another case in point. My brother-in-law was telling me that one of my niece's volleyball teammates has Down's, and that she's a strong competitor and a great player.

And on the NDSS site, they offer scholarships for people with Down's who are going on to secondary education. College!

The thing is, expectations are changing for people with Down's. More and more doors are opening. There is hope.

I guess that is what I was missing at first. And now I'm gathering more and more of it all the time. These days, not just from what I read and what I hear, but from what I see every minute of every day, in the bright, inquisitive blue eyes of my daughter, and the fact that she does something new and amazing every single day.

The real lesson that I'm taking away from this is that all the adaption I've had to make to this upheaval was something very basic: savor every moment. Don't think so much about the future that you forget to enjoy every miracle along the way. For me, the one who's always been obsessed with plans and schedules, this is a Very Big Epiphany. And for once, scary in a good way.