Tuesday, March 2, 2010

Making it up as I go.

Tomorrow is End the R-Word Day and later this month is World Down Syndrome Day. I'll be posting more about Down Syndrome this month in observance of these two events.

The moment that Ralph was born and the midwife said the words "Down Syndrome", I had a flash of clarity. It was one of those defining moments. I crossed a threshold. There was no going back to the way things used to be. But it was OK.

Ralph was very sick at first. His lungs were damaged by meconium and I'm sure the Atrial Septal heart defect didn't help the situation. We didn't tell people that he had Down Syndrome. Not until his condition stabilized about 6 weeks later.

I was criticized for this. Fine with me.

I also got into the habit of not mentioning Down Syndrome when we would meet people. I was criticized for this also. Fine. I was always, and I still am, happy to answer questions from curious people. The truth is that most people are too afraid to ask. Too afraid to offend.

Am I ashamed of Ralph having Down Syndrome? Not at all. I just don't choose to define him by his extra chromosome. And I never felt obligated to share it with casual acquaintances.

I don't know if I was right or wrong. I'm really quite new at being a parent of a child with Down Syndrome. He didn't come with a handbook or anything. None of my babies did.

I'm still just making it up as I go.


Anonymous said...

You are doing a good job!