Watch What You Say

One night when Josie was about 6 or 7 months old, my beautiful little baby girl screamed her beautiful little head off for about an hour. You see, Tyson usually put her to bed, and for her, that meant rocking her until she was asleep and then putting her into her crib while holding your breath and praying that you were able to take your arms out from her slowly enough so as to not to wake her up. After 6 or 7 months, Tyson had gotten quite good at putting our precious darling to bed. On this fateful night, however, Tyson was in Bloomfield for a basketball game which left me home with Josie and Lucy by myself for a lovely girls’ night-in. When it came time to put the sweet two-legged daughter to bed, I did everything right (or so I thought): I put her lotion on before zipping up her jammies, turned on the lullabye CD and her noise machine. I said her prayers and sat down in the rocking chair to send my darling babe off to la-la land. And then everything went to hell in a handbasket.

That child cried and screamed and there was nothing I could do about it. I rocked her. I walked her. I sang her Love Story. I put her in her crib and threw myself onto my bed and screamed. I hit my pillow against my bed. I picked her back up and tried soothing her again. I avoided tripping over Lucy who was following every step I made because she was every bit as upset and frustrated as I was. I let Lucy out when she went to the door. I called Tyson when I discovered several minutes later that Lucy had run away because the ice- and snow-covered streets were a far more peaceful place to be than our home. I cried with relief when his dad came back with her after her found her a couple of blocks away.

It was that night that I had horrible, unspeakable thoughts about the precious bundle of joy God had gifted me with. And then I told that story to other moms and listened and laughed along as they told their own battle stories. I told the story to friends who didn’t have kids because, in hindsight, it wasn’t so bad and parts of it were actually kind of funny.

With Josie, it was and still is okay for me to sometimes answer “Not so great” or “She’s really been struggling lately” when I’m asked how she’s doing. With Moses, on the other hand, I quickly learned that saying something like seemed to cause people to become very uncomfortable. Sometimes it was like I could hear them thinking, “Oh no. She’s saying something negative about her child with Down syndrome…What do I do?” So I would quickly slap a smile on my face and say, “But overall, he’s great!” and then watch the relief spread over their bodies. Now it’s to the point where I just answer with a smile and “He’s great!” And that isn’t a lie. Moses is great. But I never had to follow up a “negative” statement with Josie. And overall, she’s always been great, too. It’s just that babies are hard sometimes, regardless of their chromosome count or type of needs.

Sometimes when I’m asked “How’s Moses doing?”, it seems like there’s an underlying curiosity of what it’s like to have a baby with Down syndrome.

From about birth to 4 or 5 months, it really didn’t seem like Moses was that different from how Josie was as a baby. At that point in a baby’s life, days are pretty much spent eating, sleeping, pooping, and taking in the world around him. That was my experience with both Josie and Moses. It was probably around that 6 month mark that I did start to notice some of the physical and cognitive delays.  Right now Moses is almost 18 months old and is doing what Josie was able to do when she was about half his age. He has physical therapy once a week and occupational therapy and speech twice a month. He could probably crawl on his hands and knees if he wanted to, but army crawling gets him where he wants go and he’s fast. His arms and shoulders are weak, but he gets better and better at pulling himself up to standing every day. Last night he stood at at the coffee table in the basement for about 3 minutes straight. By the last minute, his little legs were shaking but he stayed upright until they just couldn’t hold him up anymore. He “talks” a lot and it sounds like he says “Dada” and “Mama”, but it’s not intentional where he’ll look at us and say it. He knows the sign for “no more” and it really sounds like he’s trying to verbally say it, too. He can do the sign for “more”, or at least clap his hands together, but apparently it’s not as fun as signing “no more” so he doesn’t do it as often. He will wave “hi” and “bye” pretty consistently now, and he’s getting to the point that when I say “Give me a kiss” he comes at my cheek with an open mouth. He can stack toys and knock them down like a boss. He can draw a smile from even the sourest soul.

For me one of the things that’s hardest for me as a parent of a child with Down syndrome is that I feel like I have to really censor what I say in response to questions about it. Or feel like I can’t talk about his delays without drawing looks of criticism or pity or panic. I just want to have a normal conversation about the normal struggles of having a normal child with Down syndrome. This is our normal and I’d like to be able to talk about and not have to wait for my super secret meetings with other parents of kids with Down syndrome because they’re not scared to say “Yep, that sucks” or “I know, isn’t that so frustrating?” before ending the conversation with the acknowledgement that overall, we have pretty amazing little human beings.



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