Wednesday, September 26, 2012

Suburban drives

Yesterday Atticus and I took the long way home from school to listen to music and feel adventurous. The kid adores the car and music, so it was really a win-win. I've been listening to a lot of Milo Greene lately, namely this song:

 and this one:

We were contemplative and taking in the scenery of West Houston. I know, most of you are wondering what scenery I'm talking about, and I haven't painted a very positive picture of this part of town over the past few months, but I grew up around here and I know where to find beauty. There are trees and trails and well-kept yards that make some of the nearby neighborhoods a blast to drive through. Plus Atticus got a kick out of the many, many school buses we saw en route. That kid loves anything with wheels.

And then, as I was thinking this exact phrase, "Wagon Wheel" by Old Crow Medicine Show miraculously started playing on the iPod. I say miraculously because I had it set for Milo Greene, so how it switched gears without my doing is beyond me, but it seemed like what we both needed. That song cheers me up every time I hear it and when I turned around, Atticus was having a regular hoe-down in the carseat. He was tapping his feet, clapping his hands and bobbing his head to the fiddle and I got the biggest shit-eating grin on my face. God, I love bluegrass. Apparently so does my boy, which makes me one proud mama.

Tuesday, September 25, 2012

Dark Thoughts and a Lack of Sleep

Sleep. Oh, how I took sleep for granted. I’m so physically and emotionally drained by 9pm that I can barely keep my eyes open. But 2am always arrives and I jolt awake like clockwork. What seems so much clearer in the daylight hours, all my research, all the reassurances I can give to my fully conscious mind about the future of my child and my family become groggy and clouded in the wee hours of the morning. My hopes that my joy in this pregnancy and the excited expectations for Quinn will be restored are dashed by the darkness and the silence. And my already frantic inner dialogue does nothing to quell my fears, especially when I’m left alone with my thoughts and there’s nothing to distract me. I am terrified.

I’ve learned a lot of great facts about kids with Down syndrome…they are sweet and more like typical kids than they are different. The Ds community has taken huge strides toward achieving a better quality of life in the past decade, and Quinn has a greater chance of attending college, reaching a level of autonomy, and even getting married than another child with his diagnosis even 10 years ago. But all the positives can’t erase the fact that, statistically, we’re in for a very heartbreaking and challenging road. Here are just a few of the things that kids with Ds face in their lifetimes:

Saturday, September 22, 2012

One Day at a Time

I have a feeling that this blog will see a lot more action in the coming weeks, as writing is so incredibly therapeutic for me. The past few days have been a roller coaster of emotions in which Brian and I will go from sobbing uncontrollably to suddenly reaching a moment of acceptance and back again. I assume this will be the norm for us as the weeks progress.

Yesterday I found a box of baby toys in Atticus’ closet that had not been unpacked from the move. As I lifted the cardboard flap, I was overwhelmed with the most soul-crushing sadness I have ever felt. You see, the two years following Atticus’ birth were the happiest of my life, and seeing those toys transported me back to our humble Austin home with the big backyard and owl-themed nursery, where we were surrounded by friends who were always just a phone call away. It left me with a feeling of homesickness and a worry that I would never be that happy again. So I cried in mourning for the life I knew, until Atticus looked at me quizzically and said, “Mommy’s crying” and gave me a huge bear hug, which immediately snapped me out of my self-pity. And in that moment I knew that the grief would end someday and that just because my second child will face more challenges than most kids, it didn’t mean that we would be any less happy. In fact, my obsessive research into the subject suggests that children with Down syndrome serve to bring more happiness into the home than parents and siblings ever thought possible. Divorce rates are lower, feelings of empathy are stronger, and the sense of "family" takes on a whole new meaning. And that thought gives me peace.

Thursday, September 20, 2012

What's To Come...

I knew I was pregnant the moment I conceived. Call it a woman’s intuition or a case of mother-knows-best, but I knew. As the weeks went on and I could finally take a pregnancy test and receive reliable results, Brian and I stared at the giant plus sign and I said, “I told you so.” As things progressed, I also knew I was having another boy. Friends and family members would wink and say, “oooh, what if it’s a girl this time?” And I would smile and nod and join in the what-ifs, but I always knew deep down that Atticus would be getting a little brother. And when our doctor confirmed this at 16 weeks, I just shrugged at my own intuitive nature.

So when I got the news today about our son, I was shocked that I didn’t already know….

It all started at our 20-week ultrasound. It’s supposed to be a fun glimpse at the life growing inside, a check of basic anatomy, and a reassurance that all is well. For most moms it is. Our doctor found that our little guy had slightly dilated kidneys, but she wasn’t worried about it too much. Even so, she sent us off for a level II ultrasound the following week, just to make sure that it wasn’t anything serious.

Brian offered to come with me, but I took my doctor’s reassuring words to heart and told him I’d be in and out in no time at all. He had just started a new job and couldn’t realistically make every single appointment. I did a little research into what dilated kidneys could mean, and learned that it could be anything from a temporary fluid build-up that corrects itself before birth, to a marker for Down syndrome. As I was lying on the table with the unbearably cold ultrasound jelly smeared over my abdomen, it became clear to me that the ultrasound tech was looking for other signs of Down syndrome. She measured the heart, the level of fluid behind the neck, the length of the arms and legs, and the shape of the pinky finger. She said very little as she worked, then told me the doctor would be in soon to talk with me. It turns out that in addition to the dilated kidneys, the baby also had an echogenic intracardiac focus. This is a calcification on the heart muscle that usually, like the kidneys, clears up on its own and isn’t a cause for alarm. But it’s also another marker for Down syndrome, and coupled with the kidneys, was therefore a cause for concern.

Wednesday, September 5, 2012

I Won't Touch your Belly if you Don't Touch Mine

Pregnancy is one of those rare moments when your body is not your own, and everyone expects you to be ok with it. And only a pretty marginal section of the population can truly understand what I’m talking about. Not only am I playing host to a growing human being who, much like a [very cute] parasite, is making himself cozy and freeloading on my resources, but people also want to tell me exactly what I need to do for the well-being of the baby (though they are wise enough to disguise this a genuine care for me as well). I really don’t mind these things and find them comical most of the time. But as any pregnant woman in the modern age is well aware, there’s entirely too much paranoia surrounding what’s actually the most normal thing in the world. 

Women have been giving birth since the beginning of time. Obviously. But visit any message board on or and it’s full of crazy-ass women telling other, more suspecting women what terrible people they are for wanting to eat a turkey sandwich (according to many doctors, deli meat should be avoided during pregnancy due to the miniscule risk of listeria. My guess is that you’d have a better chance of contracting mad cow disease from your cat than actually risk ingesting listeria, and I tend to ignore fear-mongering, especially in the pregnant and vulnerable). I do get it, though. Even though pregnancy is as old as the human race itself, it’s only become a predominantly low-risk condition within the past century. Death during childbirth was common before the advent of modern medicine, and infant mortality rates are much lower than they were even 30 years ago. Our technology has enabled us to recognize potential problems before they become dangerous and monitor high-risk pregnancies with significant success. That said, sometimes knowledge is the opposite of power.

Take the case of alcohol during pregnancy, for example. My grandparents likely washed down every dinner with a martini and a cigarette, and I’d be shocked if this practice changed while my grandmother was pregnant with her children. In fact, when I was expecting Atticus, Brian’s mom gave me a book on prenatal care that was published at some time in the 1970’s. Along with advice to eat well and exercise, there were also suggestions to keep cocktails and nicotine to a minimum of 2-3 per day. Fast-forward to today and women are expected to not only abstain from cigarettes and alcohol, but also deli meat, soft cheeses, smoked meat, sugar substitutes, large fish, caffeine, aspirin and ibuprofen, cold medicine, and even herbal teas. Some doctors even suggest that pregnant women avoid hot baths and showers, bumpy car rides, and third-trimester travel. These are good steps to take in general, but a glass of wine after a stressful day will not cause Fetal Alcohol Syndrome in my unborn child unless I intend to follow it with two or three more and then repeat that practice every single day. A cup of green tea will not cause preterm labor, and I can move that chair from one side of the room to the other without killing myself or my baby. 

I think things have gone too far in the name of “safety.”