Thursday, March 29, 2012

Days of Awe (New Down Syndrome Diagnosis)

If someone would have told me that the days and weeks following Bridget's unexpected Down syndrome diagnosis would be bountiful...I would have thought they were crazy. 

Earlier this year, I caught a link on facebook to this blog (a friend just reminded me of it yesterday), which got me thinking about how we were in that same position five-and-a-half years ago.

I so wish we could have had even a tiny glimpse into our lives today. There was no reason to fear the future. But we didn't know that yet.

The news that our brand new baby needed surgery--and had a genetic condition that would impact her life in untold ways--was tough news to bear.

We wanted to celebrate, but we felt sad. We didn't want life to be hard for her, or for us. She was a brand new person. She was just beginning, and yet somehow it seemed that she was already behind the eight ball.  

I wish I had a picture of Bridget lying under the warming lamp recovering from her surgery. It would be even better if that picture included all three of us--Chris and I on either side of her little bed, facing Bridget and one another at the same time.  

We didn't need words to explain what was happening. The tears that fell in those moments were quiet tears of relief, of gratitude, of hope. We’d both had an epiphany and the fear began to dissolve.

We could do this. We could raise a child with Down syndrome.

For anyone just beginning this journey, please feel free to ask questions here or to visit one of the many wonderful resources for parents with a new diagnosis. Here are a few great places to start:

>Down Syndrome Pregnancy
>Real Life Down syndrome (Resources page) (List of Blogging Families)
>Down Syndrome New Mama
>What Parents Wish They'd Known


  1. Absolutely we can do this, you can do this. I wish sometimes we could not get the diagnosis for awhile or find a way to put the diagnosis on a shelf. Just love the baby, he is a baby first and foremost. Try not to project and just live in the love. It is awesome you are offering a way for new Mom's to ask and express their feelings.

  2. I, too, remember those early days in the NICU, trying to digest the news that our new baby had Down syndrome, and being fearful and sad . . . but also so grateful that he had made it through his surgery, and that determined knowledge that we were going to give him the best of ourselves.