Three years ago yesterday, I got a phone call that would change our lives forever. Three years ago yesterday, we got the results back from my quad screen test that indicated our little lady had Down syndrome. A few weeks later, amniocentesis results in hand, the quad screen test results were confirmed.
Since then, October has become a "reflection" month for me. A time to look back and evaluate how our lives have changed since that phone call. A time of introspection.
On the day we found out, I felt devastated...and that word doesn't even begin to describe it.
A year later, I felt like I was on the offense--I joined several different Down syndrome advocacy groups and felt the fire to rid the world of the injustice toward people with Down syndrome. When people would make comments about Miss B or about Down syndrome, I immediately became a mother bear, protecting my little one.
By year two, I was exhausted of being in constant "Down syndrome" mode. And so I stepped back, and simply enjoyed my daughter and the blessing that she is...We didn't do all of the therapy-homework we were supposed to do. I didn't read every news article about Down syndrome that came out. I didn't talk about Down syndrome constantly. We all just went about our daily lives.
And now, at year three--I am trying to find the balance of the two--being mother bear for people with Down syndrome when necessary, but living life just like any other family would. As I've tried to find that balance--to walk the line of "same as everybody else, just different than most"--I have struggled. How do I make a positive change in the world for people with Down syndrome without it consuming my life?
The push to make the world a better place for my little Miss B has driven me to start a Down syndrome group here in The Village and surrounding towns. As the President of this new group, I feel enthusiastic and optimistic that we can make a difference. And I'm excited that, in our little corner of the world, I am promoting inclusion and acceptance of my little lady. However, despite my enthusiasm, I worry about my life becoming engulfed by all things Down syndrome. While I want Miss B to have every opportunity to have the good life; I think that part of having "the good life" means that we shouldn't always live in "special needs land" and that we need to be a family first--a regular ol' family--and a "family touched by Down syndrome" second.
At the same time, I have guilt that I haven't done enough for Miss B. Like the other day when a friend used the R-word and I just let it go without saying anything...I felt like I was letting Miss B down. Or when I read about all of the different therapies and reading programs and equipment and toys and foods and vitamins and experiences that are recommended for people with Down syndrome--and I know that we are only doing a small fraction of what we could be doing--I lay awake at night worrying that we are failing her.
And so three years later, I have come to the conclusion that there will always be struggles in life--things that make you worry and times when you have to push forward or pull back--and that is okay. And I've realized that I feel so blessed to have these struggles. I feel infinitely grateful for the growth and change and learning that takes place as we find our footing on this path in life. I feel blessed to wake up each morning to my thoughtful husband and three beautiful children. I feel grateful for the change that Down syndrome has brought into our lives.
And while we don't have it all figured out yet...there is no hurry, we will get there someday.
While our life is not perfect...it is good.
2 days ago