Before Austin was born I was overwhelmed with feelings of uncertainty. I didn’t know if I was going to be a mother of a “typical” child or a child with Down syndrome. I kept telling myself that the chances were slim and I was probably worrying over nothing. In the midst of my pregnancy induced insomnia I often found myself thinking…”What am I going to do is my baby really does have Down syndrome?” Each time the OB nurse would enter my weight and blood pressure, I could see the typed words on that computer below my name. I don’t know why, but I read them EVERY time. It was only 2 sentences, but it echoed in my head at during and after every OB appointment.
"Quad test came back as high risk for Down syndrome. Patient declined amnio."
I don’t know why, but the fact that I was high risk for Down syndrome never came up at any of my OB appointments. The baby was healthy and I think that’s what my OB was concerned about. I’m thankful that she didn’t treat me differently.
As my due date approached, I thought about Down syndrome a lot. Would I want to hold Austin? Would I even want to take pictures of him? Those were my thoughts before he was born, and while I know they were “normal” at the time…I still feel ashamed for having these thoughts cross my mind. The truth is, it wouldn’t surprise me if my computer crashed at any given moment due to the insane amount of pictures I have on it. Austin is the celebrity and I’m the paparazzi.
I remember taking one picture of Austin when he was a week old and his Pediatrician said we could begin “tummy time.” You have to keep in mind that we didn’t find out at birth that Austin had Down syndrome. It wasn’t conclusive, some doctors suspected it and other doctors thought he looked “normal.” We had to wait 2 weeks before receiving the results. Anyway, I remember snapping several pictures of his first tummy time experience. As I was reviewing the pictures, one really stuck out. I noticed that the back of his head was slightly flat. His profile…I could really see the characteristics in his side profile. This picture only confirmed what I already knew deep down. What I did next isn’t something I’m proud of, but it’s a profound part of my healing. I erased the picture. I wanted to erase his Down syndrome. We didn’t know for sure if he even had Down syndrome, but I didn’t care. I wasn’t mad at God for giving me a baby with Down syndrome. I was mad at God for giving my baby Down syndrome.
As time has gone on, my outlook has drastically changed. Hearing the results of Austin’s karyotype made it all so real. I knew that I had to focus on Austin. I used all my energy to learn as much as I possibly could about Down syndrome. I’m still learning. I’m pretty sure I’ll have my Master’s in Down Syndrome by the time I’m 30. ;-) I think a lot of my fellow DS parents feel that way, too.
I don’t necessarily know why I’m sharing this. I feel it’s important to not only touch on the good times, but also the not so good times. I had to go through sadness and uncertainty to get where I’m at now...a good place. And guess what? It feels so good to look back and see how far we’ve come.