The Wonder Game

 October 25, 2022

I used to play the wonder if game in my head a lot. For the first couple years of Bradley’s life I would find myself walking that path whenever I saw my nephews or saw a kid Bradley’s age doing the typical things they do. Or when I had the rare but Blessed chance to hold a new baby and get them to coo, something Bradley didn’t do, but was one of my most favorite things that the girls did. 

And I’m not saying that I’m completely over the wonder if game - in fact, I find it happens a lot right now. And I did sometimes wonder what life would be like if Bradley hadn’t been born with an extra chromosome, but the fact that he beat the odds to be born at all, is a significant reminder that we should just feel Blessed he got here. No, my wonder if game isn’t about the chromosome itself. My wonder if game is more about me wondering what his life would be if he hadn’t been born sick. Where would my little boy be if he hadn’t had such a poor digestive tract that it almost killed him. Where would he be if we hadn’t lost something every time he had to be sedated for some incredibly dire surgery? Would he have his voice now? Would he be stubbornly independent rather than just stubborn? Would he be able to navigate his world more efficiently and not need someone to help him every step of the way? Would we have felt we could have fought for inclusion with enough evidence that we would know that Bradley could handle it, would handle it, and thrive within it as so many other kids with something extra special have and do daily? 

Instead, we continue to try to help him find his voice. We keep trying to bridge the gap between him and us as we try to read his signals, his moods, his symptoms, sometimes it feels like even his mind - so that we can know if he’s in trouble or sick, if there is something he just wants or needs, or if he’s just not feeling like being around us, or maybe that he wants us around him. I sometimes wonder if that little boy, without the surgeries, would have been the young man that could live independent of us, or maybe with a care provider to watch over things… or a group home. Or even just a part of my home with more independence than dependence on us to see to his every need. 

Right now, I don’t watch a lot of older people with Down syndrome and think - that’s going to be my Bradley someday. Instead I see them and I have to stop and I wonder - is there going to be a time when Bradley will be more like some of his peers that are handling parts of their lives? When he was a baby they told us he’d never leave us. And then they changed that to he’s probably going to live in an assistive living situation, and not with us. Now, I think we anticipate something in between all of that. 

Although the girls are still in residence, I can feel the nest starting to thin a bit. And we know that they are going to make their way out sooner than I like, maybe later than they and Dad want, (just kidding - not getting a huge sense of urgency from any of them) but the reality is when not if. And once that happens, I will find myself parts very sad, parts very proud, and parts still a mom with a full nest as Bradley will likely still be in it. And as our babysitters might move away - or just start living their lives or some such nonsense, I will lose some of the freedom I get when they can watch their brother so Eric and I can have a date night, or anything along the lines. These are real world problems! 

And I was thinking that I might always have to make his meals. Although he is savvy enough that given some practice he’ll be able to use the app and order pizza for dinner. Considering he went on a ten minute hunger strike at school today for lunch because he really wanted pizza and mom packed him a sandwich… I can see this being a real potential in his future. I hear there was great protesting involved. I am thrilled that he is so vocal and adamant in his choices and letting us know that pizza is the thing… but, protesting is not great. Eventually, his stomach required food and regardless of the lack of pizza in his container; he relented, eating his most yummy turkey sandwich. 

Bradley arriving with an extra chromosome was a shock and it definitely took some time to adjust our thinking. We had to grieve the baby we didn’t get so we could take the time to fall in love with the one we got instead. And we most definitely did. I never wonder if I love Bradley, if I would have loved the kid he might have been - with or without the extra chromosome, sick or not…but sometimes I hear his voice so seldom that when I do, I realize how sweet it is and how I wish we could hear it more often. And I can’t help but wonder what that might be like. 

31For21 Down Syndrome Awareness and Acceptance.