Monday, November 17, 2008

And Then a Plank in Reason Broke or Who knew?

My first trimester was punctuated minute by minute with one of the following: vomiting, gagging, dry-heaving or at the very least an overwhelming nausea. I carried plastic bags in the car in which to retch while driving. I accustomed my coworkers to having me stop mid sentence, stare blankly into the middle distance for a second, then sprint to the bathroom to rattle the corridors with the sounds of my puking. It felt as if I had the worst hangover of my life for three straight months. Nothing I accomplished in my collegiate years could have prepared me for the brain crushing magnitude of this. Little did I know, these were to be the best days of my pregnancy.

At 13 weeks I went, alone, to my integrated screen. We all get these now, or at least our obstetrician's recommend them. I chatted with the technician about how, "Yes, this was to be our first. Yes, I feel awful. Isn't it all lovely?" I laid back and luxuriated in another ultrasound, peering into the hushed world of my growing child in the warm dark room these things happen in. The tech stopped talking. I noticed she was taking the same measurement over and over again. She was concentrating. I began to be scared.

An increased neuchal translucency. That's what we had. An increased NT. I met with the genetic counselor who informed me that this could mean Downs or another trisomy. That this could mean a heart deformity or a chromosomal abnormality. That I should have an amnio to investigate. That, then again, everything could be normal.

I had all the tests. The results stubbornly came back fine, every time. I continued to be relieved and tried with all my power to avoid the concern in my husband's eyes. To blot out all worry, all questions, all feelings something was wrong. I was angry with anyone who asked me about it. I was hell bent on normalcy. Then I went into premature labor at 23 weeks. I spent two weeks in the hospital. I took the drugs. I barely moved. I prayed to what I now knew was a daughter to stay with me. I begged her to keep living inside me because she was going to be fine. I held onto the roundness in the dark willing it to give her strength and I tried not to cry because I did not want to scare her.

Three months of bed rest followed. "The baby is normal. The baby is normal." The new thing that punctuated every thought, that kept me company through the long winter days. Finally the waters broke and Willa came. Well... the baby was not normal.

Willa's first month was spent in the hospital, diagnosing. We were lucky. Someone knew what it was. Our girl has Costello Syndrome. It is an incredibly rare gene mutation that happens randomly, causing all kinds of issues. There is not one system of Willa's little body that is not touched by difference, by some level of difficulty, by irregularity. She will have developmental delay, mental retardation, she runs a 17% risk of having cancer, she will never be independent. Our baby will be a baby for a long time. And then, our children have amazingly sociable and sunny personalities. They have a marked sense of humor, they are short, they have heart problems, they have long memories and remarkably well-developed fluid reasoning skills.

There are also so few people with Costello (1 in 30,000,000 that's million... It seems almost statistically impossible to get this syndrome. there are 300 people diagnosed in the world. That's world...) that we have no idea what to expect for her. Each child writes their own story, each child has their own combination of health problems, learning difficulties, personality traits, personal style, taste in music, age when requesting a cell phone or designer jeans. These kids are kids too you see.

Try telling all this to the lady behind the counter at the market who says, "Oh! You had the baby! Everything ok?" 

Well...

You learn something very important about people very quickly. Everyone is willing to take your lead. I do not burden the casual askers with too much information but I always tell them the truth. To friends and family I tell the whole long list. A list that is longer than the one above. It takes a while to explain it all. But there is happiness still in my voice as I tell it because this girl is a keeper man. I love her.

I have all kinds of opinions about medical technology. I absolutely ask the question,  just because we can, should we? I have alot to say about keeping such pregnancies and not keeping such pregnancies, about our role as parents starting at conception and the terrible responsibility of playing God.

But none of that matters now. Willa sleeps near me. I can hear her breathing and that hand I dreamt of holding on a dark night in the hospital reaches out for me. All that matters in my life is that I hold it and lead her far enough for her to be able to push me aside and walk on her own. Some day...


6 comments:

Cate said...

Hey. I found your blog through your comment at the NYT article.

My daughter has Down syndrome, which we did not know before she was born. It's been a weird journey. She's two now. She's great.

Anyway, I'm looking forward to reading more.

p.s. Love the name Willa!

Chrystal said...

Crap. I knew at the first post that I liked your style.

And then I got to the last paragraph of this post and the tears flowed.

Yeah, you're cool people. Keep writing and I'll keep reading.

Love to Willa.

TUC said...

I am glad I found your blog. My 9 month old has Ds. We had a very rough start and I am still up and down with the emotions. Reading your posts helps me to sort through similar feelings.

"But there is happiness still in my voice as I tell it because this girl is a keeper man. I love her." Cheers to you, I'll drink to that.

Kami said...

Heather, I figured if I was digging for information I should start with the first post and, oh hell. Please, hug that child for me. Hug her til your arms hurt.

JenLF said...

I found your blog through Kami, so I've now read the most recent post and the first post - you moved me to tears in the office. :( Thank you for sharing your life with Willa with the world. I'll be catching up on the middle soon.

The Sanchez Family said...

Absolutely beautiful post. A true mother speaking.