Last night Julia Grace was up a lot, like usual. She has reflux that seems to be worse at night, probably because she metabolizes the medication too quickly. We are working to get it better controlled but what we tried overnight, suggested by our doctor, didn't work. Yet still, I woke up grateful. Partially because her dad did let me sleep through most of the wake ups, but mostly because a year ago today was "the last time we ate Indian food". That's how my husband and I talk about the day a year ago when we found out that she likely had a genetic condition "inconsistent with life". When you hear something like that, especially perhaps in relation to a baby you tried to bring into this world for years, your vision gets very, very narrow. "Did I do something to make this happen?" was the question that I didn't even consciously form before it was out of my mouth. My midwife assured me I didn't.
Just an hour before I sat in that room, feeling faint and dizzy with my husband's hand on my back we sat in a nearby Indian restaurant enjoying a meal and ogling the ultrasound picture of our beloved baby. The ultrasound tech confirmed what I had known since long before we even became pregnant -- we were expecting a baby girl. I mentioned to my husband that the ultrasound technicians had behaved a little oddly but he thought I was imagining things. On the walk to the restaurant the receptionist at my midwife's office called to ensure that we were coming to our appointment, which was scheduled an hour or so after the ultrasound. I hung up the phone and said "That's weird. Why wouldn't I come to the appointment?" I had always had a sense that I'd have "different" kind of child so I was certain to ask the woman performing the ultrasound if the baby's nuchal fold was normal (a thickened nuchal fold can be a sign of Down syndrome). She assured me it was normal. Little did I know that piece of information would be one of my biggest sources of worry between the time we found out "something is wrong" until the time we found out she had Down syndrome. I obsessed about it. We knew that we could gladly manage a child with Down syndrome but these other things that the midwife talked about, the ones that were "inconsistent with life," those things broke me in my deepest places. It couldn't be Down syndrome because of the normal nuchal fold and several other characteristics that she had that were not typical of a child with DS. So what was it? Sometimes I felt like that meal, "the last time we ate Indian food" was the last joyful meal we had. The intervening weeks and months were exhausting with complications, fear, and sadness. Through it all even though my head was deeply engaged in fear my heart knew that my daughter was meant to be a loving, living, breathing child. I had visions of her in my minds eye: running around our yard, playing with a friend's little boy; snippets that would come to me randomly. That time was dark, I remember only a tunnel vision and a frantic need to be as close to my husband as humanely possible. There were so many tears. I would tell Ed that I was going to shower and I would sit and sob as the water washed over me. I would wake up in the middle of the night, crying silently. I cried at work and in the car; at lunch with friends; and on the phone. I cried for days, it felt like.
Today, exactly a year later, Julia Grace and Ed and I had a lazy morning together as a family and when we finally got out of bed he fed her and got her dressed and she and I made our way to mom & baby yoga. Tonight we sat together on the couch, as we do each evening, and we made faces at each other and laughed hysterically and then I held her and sobbed again with gratitude and joy.