31 for 21, Take Two

Well, here we are again: October 1st, the start of Down Syndrome Awareness Month and Lincoln’s Second Birthday. Last year we decided to take this little challenge called 31 for 21, and to our complete surprise it was a comforting and liberating experience for us. It was our first time blogging and our first time acting, in our own little way, as advocates.

If you didn’t read last year, you can go back to the beginning (the first entry of this blog) and see how we began to process our first year as parents of a child with Down syndrome. One of the things you will probably see, if you do, is that a major facet of our approach to this situation is a commitment to honesty about life with Down syndrome, and to honesty in general about the struggles that we face and know to be somewhat universal. One thing that strikes me again and again is that, no matter why or how we all came to be here in this life together, the fact that we are in it together must be an integral component of what we are supposed to accomplish or learn or survive. If we all keep to our own corners, covering up our wounds like bluffing prizefighters, all that we are going to be able to offer each other are black eyes and a bouncy defense.

So, here we are, exposing our imperfections in the hope that our vulnerability may be helpful to someone else. Right after Linc was born, people started acting like we were some kind of saintly, heroic figures, like having a child with DS had upped our moral standing. Frankly, it was quite annoying at the time, and incredibly difficult to reconcile with our burgeoning fears about our new roles and our own grief about the loss of our ideal life and ideal family that came in the wake of Lincoln’s diagnosis. When we started writing this last year, it was so freeing to be able to say to anyone who wanted to listen that we are just putting one foot in front of the other like everyone else.

We are not saints, we are not stronger than everyone else, we were not chosen for this because we have the moral fortitude to handle more than other people. It was just a thing that happens. Sometimes, when cells begin to divide, an extra chromosome pops up in there. It doesn’t mean we didn’t have an emotional adjustment period or that we don’t struggle with the implications of it some days. But it also doesn’t mean that we have a miserable, tortured experience.

The truth that we are trying to share is that, although some days it is hard, it could be a lot worse and we know it. Down syndrome is just a thing one of our kids has. The other has strabismus (see the oh-so-cute spectacles). His father has undifferentiated spondylo arthritis. His mother has a mild case of asthma and a severe case of OCD. It’s just life, folks. It’s a messy thing, a four letter word and all. Let’s just skip to the part where we say, “Yeah, mine’s messy, too. You want to grab a beer and talk about it?”

With that in mind, we are accepting the challenge again this year to blog every day for the month of October, 31 posts to raise awareness about trisomy 21 (aka, Down syndrome). We hope you will read it if you are curious, interested, unsure, or for whatever reason want to peek in on our little slice of atypical and yet somehow oddly normal life.