What we did and when we did it. Sometimes.

What we did and when we did it. Sometimes. People, places and events to remember.

Friday, August 1, 2014

Rewriting the Story

Three years ago Wednesday, I had a baby boy.  My doctor held him up and announced, “He’s beautiful!  Perfect.”  And I will be forever grateful for her words.

Later, as I waited to hold him, I noticed some sideways glances and head nods among the nursing staff.  And when I finally held my son, I thought, he has Down syndrome.  I waited for someone to say something, to confirm what seemed obvious to me, but no one did.  So I wondered – am I wrong? 

They took him away, and I remember lying in the hospital bed overnight, just wondering.  Praying.  Waiting for my husband’s flight to get in so that he could wonder with me.  I felt fear.  Worry.  And the most protective love I have ever felt in my life. 

Eventually, the hospital pediatrician peeked his head into my room.  “You know about the Down syndrome, right?”

And that was it.  No information.  No local contacts.  Just a casual comment.  My feelings of ignorance and isolation lasted for months.

Fast forward three years.  I stood with two of the other women from our local Down Syndrome Association – an organization that didn’t exist when Ben was born – in the conference room of that hospital.  We were there to do a short presentation for the OB/GYNs who deliver there. 

“We are here to help. 
Here is a pamphlet about how to deliver a Down syndrome diagnosis …
here is an excellent booklet with accurate information about Down syndrome …
here is information about the Early Intervention program …
and here is information about our organization.”

Before any of the doctors arrived, I walked around the conference room and prayed.  I thanked God for the local relationships that exist now for families of children and adults with Down syndrome.  I thanked Him for the opportunity to talk to doctors about how they deliver the news, and I thanked Him for Ben. 

After the doctors heard our spiel, they had good questions about prenatal diagnoses, about the DSA, and they asked us to bring more information for the hospital social workers and staff.  The physicians commended our organization and requested extra packets for their colleagues.

It was surreal to be in that place, to remember the fear and loneliness of those early moments, and to contrast them with the sense of hope and community that I feel now.  Ben is a great kid, an essential element of our family, and the Down syndrome community (local and beyond) has been a gift to me.

I may not be able to change the story of Ben’s birth and my fear, but I hope that what we did on Wednesday will help other new moms and other babies to have a better start.

Look at my 3 year old!  Isn't he something?