Little Did I Know

Categories: Blog, News, Other

 

When the doctor handed me William for the first  time and sat down on my hospital bed to tell me she thought William — though he was perfect — had Down syndrome. All I heard at the time was that my son was different and he was going to have a harder life than what I had pictured for the previous nine months. Little did I know that a quick ten years later, I’d have a silver-medal-winning, basketball-shooting, downhill-skiing, YouTube-loving, best big brother in the world, third grader. And it is his differences and how much harder he does work that make us love him more.

Nevertheless, William doesn’t see his obstacles as barriers. He sees what he needs or wants and finds a way to get it.

Over the past decade, William has shown us over and over again what compassion, love, and happiness is. From his full-belly laugh, to his love of PJ Masks and space — he can name all nine  planets and  insists  Pluto is still counted even though it‘s a dwarf planet.  And yes, he knows what a dwarf planet is and will tell you ALL about them! — to his gentle pats on the back mid-hug, Will doesn’t shy away from life. Things are harder for him. While I want to write that he is just like every other third grader I know, I honestly can’t say that. He has apraxia of speech and many people  who don’t know him well can’t understand him. Writing is very hard for him and he often struggles just to write his name, and while he is a very physically active boy, his low tone has made things like skiing, riding a bike, and crossing the monkey bars harder for him. Nevertheless, William doesn’t see his obstacles as barriers. He sees what he needs or wants and finds a way to get it.

As many people in the special needs community will tell you, one of the best things about joining this village is finding your tribe. William has brought us a host of families who are on this same path and who love and support him. It was through this community that I was introduced to LuMind IDSC and the research they are conducting to help benefit the Down syndrome community. LuMind IDSC is making huge strides in researching the connection between Down syndrome and Alzheimer’s disease, and understanding cognition and speech development. All of these areas will benefit Will, but they are also so important to people everyday. It’s not just people with Down syndrome who struggle with cognition or speech development, or suffer the effects of Alzheimer’s disease. William, through all his determination to get what he wants or needs, deserves a life where he doesn’t have to work so hard to tell us he loves us. Or to learn how to ride a bike with no training wheels. Or to write his name. Running through the streets of NYC is one small thing I can do to help make sure he lives the life he deserves.

That is why on November 3, I will pound the pavement to help give my boy and everyone like him a life where he can be independent, grow old, and take part in his community.

Amy Bourque’s story was excerpted from her Crowdrise fundraising page and is also featured in the book, Chicken Soup for the Soul: New Moms.