Kicking off Down syndrome Awareness Month 2018 “DSAM” in a completely different way than I ever have before. So many thoughts about where our lives are now as a result of Down syndrome, and where they might be headed.
I read a post from a friend the other day saying that she knew another mom who would not be celebrating DSAM this year. She couldn’t celebrate something that had brought some many other issues along with it. And it’s true. Down syndrome can bring a whole host of related issues with it. Just here on Instagram in the last few weeks, there have been parents watching as their children head off to heart surgery, eye surgery, tonsil surgery or others. Friends whose children have been dual-diagnosed with autism, ADHD, even leukemia. Parents dealing with behaviors, therapies, insurance companies or school systems. Older children who find that “cliff” after graduation, and deal with lack of employment or transportation or decent living situations. It’s a hard road at times, and these are many reasons parents fear Down syndrome. These are all real issues and cannot be rainbowed-and-sunshined away.
But here’s the thing. This is what makes me, as a parent and advocate, get up every morning and do what I do. And so many others as well. Because even though these battles don’t need to be fought if people with Down syndrome didn’t exist (ask Iceland), how much less would our society benefit from having them included? What have we, as a community, been shouting for the past year since that news came out that #lifeisbetterwithyou ? How do you measure the intangibles that people with IDDs bring to our living?
This is why our family celebrates DSAM and always will. Because life IS better with Caleb in it. I can’t imagine how much less our world would be without the gifts that he not only possesses, but shares so freely with all he encounters. The challenges, and celebrations, of Down syndrome are real. We choose to see that half-full glass. Happy DSAM!