It was stressful. So very, very stressful. What made it the most stressful was that I was not sure if I would be handed a child with Down Syndrome or not. I refused the amniocentesis which left me with two positive screening tests and contradictory ultrasounds.
But on this day, 8 years ago, I met my little shrimp for the first time. I saw him squirming on the screen and heard his tiny heart beat. I was told he wasn't quite right and more tests would be needed. The words "markers" and "trisomy 21" were uttered for the first time or many yet to come. And on this day, 8 years ago, I looked at that weird looking thing on the screen and told him he was a keeper, regardless of what he had in store for us.
It seems fitting that 8 years later we're about to hit another turning point in his story. Tomorrow he has his first appointment with the developmental paediatrician.
I always knew he wasn't like the others his age, long before an assessment was done. But he was just stubborn and doing things on his terms. He still is.
When the behaviours started to show up and the suspicions began it still didn't seem like a big deal. He was growing and learning and functioning just fine.
I kept him in a stroller probably far longer than a kid should be kept in one. But as a single parent with a temperamental child, it was a necessity. I just figured the terrible twos were late and lingering. In the stroller I could strap him in when his tantrums got violent and it kept us both safe. The stroller became the safe place where he would go when he got overwhelmed. It's normal for young children to get overstimulated, right? Places like Disneyland he'd spend a while in there every visit, with the shade pulled as far down as it could go, and I thought he was tired and just needed a break. How wrong I was.
In January we went to Disneyland without a stroller for the first time. At 7 years old I thought he could handle it. And physically he did. But for the first time I saw that look. I called his name as he stood next to me and he looked up at me. His eyes were glazed over. His look was dazed and I could tell he wasn't focused on me. And a line from a song I hadn't thought about in years crept in. "He's awake but he's still not there." I saw this look a lot that day and wonder how many times it was there, under the stroller's shade, as I pushed him around this place.
That look, it was haunting. You can clearly see it, he just kept staring off into space. Even when I asked him to smile for a picture, he smiled but did not look at me. You know when you look at your child and they may seem typical to the world but you know better. You can tell by looking in their eyes that all is not right. And it's not. I notice the look more now and can anticipate it to an extent. It doesn't haunt me anymore but it worries me. He is unfocused and cannot follow basic instructions well when he is like that. Simple tasks like "go get your shoes" become a challenge.
We have a lot of hopes for this appointment. He isn't really getting the support he needs in school right now and we have no basis to demand anything more.
8 years later, and with just as much uncertainty as then, I promise him he is a keeper no matter what he has in store for me.
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