Where I Am

Ever since Grant's diagnosis, I can't stop reading books and blogs about Down Syndrome. Selfishly, I needed to read other parents' stories of a shocking diagnosis and how they got through it. I wanted to know that others have been in our shoes, that we aren't totally alone in this, that other families have been there and forged a path that ultimately ends up being joyful. And time and time again, these stories DO end up being joyful. It's always a process, but it also always results in greater love, meaning, and purpose for these parents. 

That said, I am going to stop reading these stories for awhile. Library, you can have them back.

At times, these perspectives were comforting and reassuring, inspiring and loving. At other times, they nurtured my fears and anxieties. Like Groundhog Day, I felt like I was living my life in fast forward, over and over again, as I read different parents' birth stories, open heart surgery battles, individualized education plan meetings, and internal fears and questions. Still, I couldn't get enough of these stories because they made me feel less alone. They also gave me something to picture.

But there came a point this week when I realized that the story I need to focus on is our own. There is a child in a bassinet named Grant who is going to tell his story and be a part of our story. I can read a million books, but none of them will be able to tell me what he will accomplish and what our family will look like in 2, 4, 10 years. None of them can help me understand the love he will bring to our family and the love that we will have for him. None will confirm the impact that Grant will have on Will, none can predict Grant's strengths and challenges, none can teach me the lessons that I know I will have to experience myself in order to truly learn them.

As I told a friend on the phone this week, before Grant was born, I feel like I had at least a sketchy picture of our family and its future. Grant's birth left me feeling like someone had come along and erased the entire picture, leaving me standing in front of a white board holding dry erase markers but having no clue what to draw. I felt lost, angry, and bitter about that erased picture. My sweet friend paused for a second and then said, "Grant and Will are ready to help you draw a new picture. It will be better because it won't be totally your vision."

At this time of Advent, I feel more than ever that the birth of a little baby can change everything. We may have an understanding of the world and our roles in it, but we aren't ultimately in control--and if we stop and listen and open ourselves to being changed by a child, then perhaps we will become the very people we are supposed to be. 

I can't change the fact that Grant has Down Syndrome. But I can control how I react to it. While I may have moments of grief in the days ahead, I feel like the heavy weight of sadness is lifting, and I am ready to begin drawing a new picture for our family: one of hope, of love, of possibility, of imagination, and of joy. I have no idea what is coming. But I believe in the goodness that is my husband and the potential that is my children, and I have to believe that whatever is coming is better--way better--than what I could ever imagine.