Tuesday, January 31, 2012

Cohen- Part One

You know those moments in life where you begin to think "Hey, I've got this." Things are going well, life isn't easy, but manageable and joy isn't too hard to find if you just look round. That's where I found myself last February: Chris was done with Fire Academy and looking for a job, I was waiting tables evenings and weekends to make ends meet until he found a job, almost all of our meals were made from scratch, I had a daily, weekly, and monthly schedule for everything and (though I wouldn't have admitted it) I was generally feeling like super-mom.

That's when I found out I was pregnant (surprise!). I was pretty upset at first and really nervous about Chris' job situation. After the initial shock wore off I bucked up and thought "I can do this!" Super-mom reappeared for about a week... until morning sickness hit. It was worse than I had ever experienced! That coupled with a crazy-hormonal shift sent me into a tale-spin of depression and exhaustion. Luckily I never threw up on anyone (or their food) while I was waiting tables.

Mid-way through my second trimester my energy returned. Chris got hired by a good department in a not-too-far suburb. Things were going well. Something about this baby felt a little different, so I was just sure I'd be having a girl. I had both of my big boys at the hospital with a midwife we loved, but had always wanted a homebirth, so I made an appointment with the midwives who attended homebirths in our area. Anticipation mounted as I struggled back and forth about whether or not I wanted to know the gender at our ultrasound. Chris won out and we decided to find out. As soon as they got the picture on the screen we saw it: A clear dead on shot of our little baby's boy parts. I swallowed my disappointment and pride and began making plans for another rowdy boy.

Later that week I received a phone call from one of the midwives at the hospital. She told me that she wanted to discuss my ultrasound. I knew something must wrong, as I had never "discussed my ultrasound results" with either of the other boys. I sat down immediately, bracing myself for the worst.
"Your baby has BLAH BLAH BLAH, BLAH BLAH BLAH, and BLAH BLAH BLAH. Each of those things can be an indicator of down syndrome on it's own, but with all three it doesn't look good." She encouraged me to get a blood test that would help narrow my odds and told me that it would be a good idea to get an amniocentesis if the odds were high.

I told Chris and we cried for hours. We mourned the loss of the "normal" baby we had expected. We cried for the years we thought we'd have alone together since we had had our children when we were young. We wept at the thought of burdening our other children after we were gone. But mostly, I think, we cried with guilt for feeling the way we did. We loved our baby and we wanted to accept him for whoever he was, but we both really hoped that he didn't really have it.

I did the blood test, hoping that it would erase all of the fear that had grown in my heart. The odds for a woman my age to have a baby with down syndrome are like 1:1100, so I was expecting my results to reflect that. They didn't, 1:40.

We cried some more.

The genetic counselor called. The results from the blood test combined with the results of the ultrasound put us at 1:13.

I laughed and cried at the same time when I hung up the phone. Somehow I knew that he had it, even though I didn't want to admit it.

I did a lot of research- part of me getting excited, realizing that an extra chromosome isn't the end of the world. Every time I heard of someone with Down Syndrome doing something wonderful I would fly. But every time I saw a list of the health concerns associated with Down Syndrome I would sink. My days were a mess. I put into words the real juxtaposition of emotion that I felt. The heart and breathing problems that are often present in newborns with Down Syndrome made me give up me dream of a homebirth in order to insure we were near a good NICU.

I decided against the amniocentesis, even though it would have given us a definitive answer to whether or not he had Down Syndrome- it had a miscarriage rate of about 1:100 and I didn't feel like playing the odds.

One of the things that was noted in the ultrasound was a possible problem with the kidneys, so we had to go for ultrasounds every 4-6 weeks. It was wonderful! Just when I'd be feeling most worried or fearful I'd get to go into a dark room and watch my precious one play, suck his thumb, and squiggle around. I was able to his growth from month to month and enjoy him for what he was: a baby.

So we waited...