October is National Down Syndrome Awareness Month. I might have noticed it on Instagram feed every few years or so, but never imagined that it would be such a significant month for me and my family. Eight years ago, my first little bundle of love was born into our lives with an extra dose of chromosome 21 and now I’m acutely aware of things like Down Syndrome Awareness Month.
When Jackson was just a few weeks old, I remember sitting with some dear friends we had just met, who had a 3 year old daughter with Down syndrome. Tears pouring down all our faces as I asked inappropriate questions like:
Are you supposed to say, “My kid has Downs” or do I just say Down syndrome?
Am I obligated to acknowledge the elephant in the room to everyone (aka strangers in the produce section of Central Market) that yes, indeed Jackson’s gorgeous blue almond eyes means he has Down syndrome?
Does it make you angry now when you hear the word retarded? Do you stop and and correct or mention it when it’s a friend that says it?
Does it mean he won’t get invited to the other kid’s birthday parties because he looks different or he can’t keep up?
Will it mean that a neighborhood mom won’t call me to join them on a stroll because she’s embarrassed?
In the quietness of their living room, her words pierced me, “Mica, there will never be a box for you. It’s not something that can be wrapped up with a perfect little bow.” Just like that, she said it. Air hung on those words as i let them sink in . . .
And she was right. These past 8 years have been full of joy, dance parties and an unconditional love from Jackson that truly knows no bounds. But there have been those little fleeting moments of uncertainty, where I’m just not quite sure where we fit in. It’s those little moments where I’m learning what awareness is really all about . . . like when people ask him his name or where he goes to school, and I nervously fidget for a few moments because I know he can’t yet fully tell them with his words and I’ll have to speak for him. My heart breaks in those little moments, but the truth is that those are few and far between. My anxiety and anticipation for these rare moments is far surpassed by the unbelievable grace we have received from friends and strangers that interact with my Jackson.
Having Jackson come into our lives and being able to meet other families with special needs has been one of the greatest privileges in my life. He has a different perspective on life that is slower. More intentional. More content and grateful. Jackson forces to all simply SLOW DOWN and enjoy the moment. I believe that being and feeling grateful is a choice for most of us – one that we truly need to strive to incorporate into our daily lives. At dinner each evening, my husband and I (and all our three kids!) say three things we are gratefuf for. The things that come out of the mouths of babes surprise and delight me – everything from them being grateful for strawberry ice cream, to Madelyn saying, “I’m so grateful for people in the world that are like Jackson. I learn so much from him every day.”
There are things I still don’t know and most of my fear and any sadness I feel comes from thinking about the future. I don’t ever feel sad about the past, because I’ve already lived through it all, and it’s amazing!! But, the future can feel big and daunting and unknown. I don’t know if and when Jax will ever drive, or be able to live alone or if he will find a special lady friend to love. But there are many, many things I DO know – and these are what I cling to. I know he brings joy to each and everyone he comes in contact with. I know that we get to experience development and growth a little bit slower paced than the average family and I’m so grateful. I do know that his sisters love him fiercely and they have a tender place in their hearts for people with different abilities. I do know him being in a classroom with typical peers has been incredible for the other kids in his class and they have a new level of understanding and appreciation for others because they get a front row seat to a different way of learning.
So, to my Jackson, I am beyond thankful for who you are and that I get to be your Mama. I am and will always be your strongest advocate. Your loudest cheerleader. Your biggest fan. When you think you can’t do something, I’ll be right there to pick you back up to try again or to whisper in your ear to keep going. And frankly, I’m on the edge of my seat just waiting to see what God has in store for you. I have a feeling you might be the coolest hair stylist there ever was. Or the next great piano composer, touring all over the world because everyone is in awe of your dancing fingers. Your smile and charisma will dazzle the masses, I have no doubt. Wherever you go and whatever you do, I believe in you. Thank you for challenging me to look for all the goodness around us, and for BEING part of that goodness.