This morning at basketball Quinn refused to participate after the initial warm up drills, sitting out his turn during the scrimmage game. First just sitting out, then crumpling into himself, then outright crying. His aide tried to coax him up. His coaches tried. Even a young teammate made a sweet attempt. But nothing would convince him to move. I took him from the sidelines, tried a couple of bribes, a trip to the bathroom & a few more bribes (ice-cream! The Lorax! the park!) but nothing could convince him to take his place on his team and participate. Feeling open, exposed, and raw because I am in this on my own today. William is working nights and is (hopefully) fast asleep right now. A bit frazzled as well since the babysitter, who was supposed to watch the two younger boys so I could focus on Quinn, was a no-show.
Recognizing defeat, I surrendered and gathered the two little ones and pouting big one to make our exit. I felt the looks of pity? kindness? curiosity? from the other parents as we made our way to leave. These are the moments that are the hardest for me. When the spotlight shines bright on Quinn & our family, revealing every nuance of difference. All kids have their tantrums, their meltdowns, but in this moment it feels like this bright light shows the place where that extra chromosome dwells. How our family has to deal with things that others do not. In our experience so far, people are very kind in these situations. The irony is that their kindness makes it feel harder in some ways. That sounds messed up, I know, but what I mean is that it forces me to recognize that the issue is mine. In some twisted way it is easier to deal with a slight or cruelty because I can rally the forces to face it together. My reaction to kindness or pity is my own issue to sort out. I find it strange that my biggest fear about Down syndrome at this moment is being on the receiving end of pity. The extra behavior issues, increased risk for dementia, need for supervision to continue in ways that typical kids do not… these things, and potential things, feel manageable somehow. Acceptable worries. The logical part of me knows that worrying about what other people think should not be anywhere on that list. This emotional place, however, doesn’t follow logic much.
When Quinn was younger I never minded the extra therapy or doctors appointments, instead finding comfort at having a team of people to turn to as he grew. But standing out in this way is something I still struggle with. Feeling “different” brings me right back to that feeling of dread in middle school that everyone was in on some joke that I didn’t understand. Or in new motherhood when it looked like it was all so easy for everyone else, but I struggled with adjusting to my new identity. (Something I know that is not true, everyone has struggles, but felt profusely in the earliest days with Quinn.)
The day goes on & I start to wonder why it is so important to me that he play on a team at all. These moments in parenting always take me by surprise. The ones where you have to take a breath, focus on the issue, and try to separate what is yours & what is theirs. Is it important to Quinn to play on a team? Probably not. But as his parent isn’t it my job to push him out of his comfort zone a little, to provide the chance to learn something new? The world won’t always slow down for him, so I feel that I need to give him every opportunity to find his own way around within the fast pace of regular old life. Having him fully included at school is a big part of this. Playing basketball with kids close to his own age seems like a good place to push him forward a little more. Perhaps I just have to be a little more prepared for the one step back that comes along with his two steps forward when trying new things.
I wish I didn’t care what other people thought, and with most things I really don’t, but when it comes to Down syndrome and people feeling sorry for us, I tend to come unglued. I don’t want to be pitied or thought of as “that poor family”. I want the world to see what I see. A family that laughs and struggles and has killer taco parties. A young man with almond eyes who loves his monster trucks, can read at near grade level and would eat macaroni and cheese every single meal for the rest of his days if I let him. The one who loves basketball but can’t seem to get it together when it comes time to actually play on a team.
One step back, two steps forward, one step back. We’ll get there eventually. We always do.