On the heels of the States, in which the month of October is deemed Down syndrome awareness month, comes Canadian Down Syndrome week, from November 1-7 of each year. I used to blog every day in October (following our neighbors south of the border) but the pace of life these days does not leave enough room to write a blog entry every day for an entire month! I am, however, going to blog every day for Canadian Down Syndrome Week (which in the big picture makes more sense anyway, since I am Canadian, and proud of it!!)
5 1/2 years.
When I stop to think about it, I really just can’t even believe that we are already 5 1/2 years into this journey. In some ways it seems like just yesterday that I was holding my very first child, my teeny tiny sweet babe on my chest, sitting in the NICU hospital chair, mesmerized and terrified by the constant movement of the numbers on the monitor screen in front of me. And in other ways, it seems like an eternity has passed, like I am an old, wizened, hardened, and more resilient version of the young new mother that I was as my little boy was passed into my waiting arms for the first time.
We have come so far, our little family.
5 1/2 years ago, Curtis and I were barely 9 months into our marriage. We welcomed Jake into our family, and began to figure out not only what life looked like as new parents, but also what life looked like as new parents of a child with a disability. Now we are seasoned travelers down the road of parenting (okay, we recognize that we are still fairly new at this, but we at least feel like we have some inkling by this point in the journey!), we have four beautiful boys, and life is crazy, chaotic, and full of joy.
And Down syndrome? Well, of course it still plays a part in our lives, and it always will. There are days that are more challenging because of it. There are also days that are much more rewarding because of it. I can’t completely articulate the indelible mark it has left on our lives, because I can’t even begin to comprehend what our life would be like without its presence. What I do know, however, is that I will continue to share our story, to normalize our experience, to raise awareness and acceptance, and to advocate for my son from now until eternity. And that’s what this week is about:)