Why it Matters

We all choose causes that we want to support. We choose them because a child going hungry is a gross injustice any way you look at it or because a friend's mom recently battled breast cancer and we want to encourage her.
And then there are the causes that choose you.

October is National Down Syndrome Awareness Month. I know. Every organization seems to claim a national or international awareness month at some point during the calendar year. To be fair, we should perhaps also mention October as Breast Cancer Awareness Month, Domestic Violence Awareness Month, and Bullying Prevention Month, along with at least eight or nine other causes. So why does claiming a corner on the awareness platform matter so much? Isn't it just a catchy way to ask more people for more money? To make your cause seem more important than the hundreds and thousands of other equally worthy (or perhaps more important) causes you could support with your financial resources, with your time? Perhaps, at surface level, it is. On the other hand, bringing a cause to public attention is precisely how change happens. It's how we've moved from a society that institutionalized individuals with Down syndrome at birth to one that has become increasingly committed to understanding the unique health concerns, learning styles, and limitless potential of people with Down syndrome.

The truth is there are so many worthy causes to which we could devote ourselves. In the name of sheer practicality, you have to pick and choose. But sometimes, you're just chosen.

I suppose it's fairly obvious why we've become avid supporters of Down syndrome awareness. But I should back up and tell you the longer version of that story, the version that began before my son was born. As a kid, I was always bothered by injustice. I'd watch the news with my parents and feel completely dismayed at the way human beings treated each other. Seeing kids mistreated on the playground was so upsetting to me that I continually feared being mistreated myself. I grew nervous about things like gym class or recess or riding the bus simply because there weren't enough adults to monitor how kids might act. On the outside, I probably looked like a big wimp. On the inside, I hated the thought that someone might suffer abuse simply because they were different. I was sure other kids didn't worry about these things like I did.

Fast forward to January 29, 2011, when I held my son in my arms for the first time and knew something was different. One of the things that grieved me most that day was the imagined belief that because he was different, his life would be limited. Worse, others would pity him or think him simple or not expect much of him, simply because of the way he looked or talked. It made me sad that my son might be that kid on the bus--the one my heart ached for but my courage wasn't strong enough to defend. I promised him I would defend him, that we would do everything we could to make the world a more hospitable place for him. I had no idea how we would do this, I just knew we would.

Enter the Massachusetts Down Syndrome Congress, who showed up at our door soon after we arrived home in the form of a box that was packed with information, gifts, and a congratulatory note. For the last four years, they've extended that same hospitality in the form of resources, encouragement, education, community outreach, and legislation. They showed us that when you don't care for the way the world sees your child, you don't sit around worrying about it. You get up and get involved.

Somehow, we just got folded into the flock, where we've met so many wonderful families and been encouraged by their remarkable stories. Someone reached out via email to tell the story of her daughter named Hope and to ask us if we needed anything. We started getting flyers in the mail for events. We attended conferences that taught us about teaching our son. We raised money for our first Buddy Walk, and when we showed up it brought tears to our eyes to see so much joy and life and generosity and courage. In other words, we saw what could be done and we got moving. This year we hope to join the First Call Program, an outreach that connects new and expectant parents with families who've already welcomed a child with Down syndrome into their lives. Being involved in the MDSC isn't about what individuals accomplish, it's very much about what a community can accomplish together. Tomorrow we'll connect with friends and family walking on our team who've encouraged and supported us in so many ways the last four years. If your support came by donation, you're also just as much a part of our team.

In Octobers past, I've blogged about why Down syndrome matters to us, what makes our life with K so remarkable, what makes him so amazing, what he has to offer. But I'm not sure I've ever stated specifically why the MDSC matters--how you can be confident that your donations and time are meaningful not just to our family but to so many families. Thank you for being a part of this community with us, for investing your time, your money and most of all your friendship and love.

We're only walking a mile tomorrow, but what an amazing mile it will be--it's become an intersection of sorts--a place where our families, friends, neighbors, employers and coworkers all meet to create opportunities for change and awareness. Thanks for coming along!