Over on one of my Down syndrome message boards, a little “debate” got started about whether us mothers would change our children with Down syndrome if we could. It is a loaded question. And it is interesting to see how many different kinds of answers we got, and from all different age-ranges of children. For the most part, people with older children said they would not change a thing. That was not my answer.

There is SO much that is good about DS16–so many things that would change if I snapped my fingers and took away that extra chromosome. I would never want to change the essence of who he is, and in looking at the whole picture, I’d take the good things the chromosome has added over the bad. Still, I’d be dishonest if I said that I embrace EVERYTHING that goes along with his chromosome. What do I embrace? Well, I’ve said it before, but one of the best things about DS16 is how he sees the heart. Much like God says he looks not at the outside but at the heart, so does DS16. He doesn’t care if his friends have nice clothes or grubby, zits or a clear face, messy hair or neat, are skinny or fat, drive a cool car or old (well, okay, he is partial to some cars!). None of that matters to him. He sees the person and loves the person on the inside. If I took away his chromosome, I think I would open his eyes to the stereotypes and prejudices and values of most people, and it would completely change how he veiws the world, much as eating the apple changed Adam and Eve’s view.

But then there’s this issue of an upcoming youth retreat. He wants to go. We hesitate. Is it too much to ask of the other adults? He is very difficult to awaken in the morning. Somtimes he needs help with things like zipping his pants and being reminded not to wear the same shirt two days in a row. He probably won’t remember to brush his teeth on his own, and if he gets bored during a meeting, he may wander off to find a Coke or call a friend on his cell phone. If an activity is too difficult, he may just refuse to try, like he did on the recent youth ski trip. And yet, how can we say yes to DS14 and no to him? It may seem like a simple probem, “Well, duh! Let him go!” But if the youth is short on staff (and this time DH doesn’t have the time off), do we ask them to do the extra work to include DS16? I’d like to, but still. Just the mental wrestling that goes along with having DS16 is something I’d love to give up!!

And in order not to make this totally about me–I would change the hip instability that makes it so that DS16 cannot balance on a two-wheeled bicycle. I would give him more confidence in his step and better depth perception so that he could confidently hike on a trail that has roots and branches all over. I would give him typical sensation of touch so he would know if there is food on his face after a meal. And I would give him the ability to speak with confidence, so that when he tries to explain something and the person doesn’t understand what he said, he wouldn’t immediately turn to me and ask me to tell them what he is trying to say.

And yet, in spite of all of the struggles–for him, for me, for all who love him–DS16 is who he is because of how he was made. All people have struggles, and I could list things I would change about any person I know, because none of us is perfect. Heck, DS16 could probably list a few things he’d change about me. (I’m predicting that he’d wish he could make me less grumpy and less likely to get him in trouble! I’ll ask him this afternoon.) I truly can’t wish away DS16’s extra chromosome, because it makes him who he is. I can’t imagine life without him, and I will take the struggles willingly because it is worth it for the amazing person DS16 is and the impact he has had on so many lives.