I am posting a reply that Emdad from San Diego wrote today on our Down syndrome network. He always makes me think, reach deep inside and pull it out and top of it – he can make me cry. I thought this was beautiful!
What a wonderful way to put “it”.
The “it” is the problem. How do we describe these people that have changed our lives? How do you communicate it?
How, in a society that reports each new scientific study, even when they conflict with established norms (is coffee and red wine good for you or bad for you? This week – next week?)?
Trisomy 21, is it a genetic anomaly, or is it a defect? The difference can make all the difference.
Our children, not too long ago, were locked away, unable to live and prove and show themselves for what they are. This allowed a number of things to happen, including the categorization that allows depersonalization to occur. It’s like saying that 40,000 people a year die on the nation’s highways. It means a lot more if that includes someone you love.
We’re learning to describe “it”, and our kids are defining “it”, every day, to a growing audience, usually one person at a time.
To answer your question, we went through the level II ultrasound, the doc said, “I don’t think you have anything to worry about”. Turned down the amnio, heard the genetic counselor, and went back to our blissful expectations.
Emma was taken to the ICU – I followed with a video camera. I was focusing in on her when I saw her face for the first time. I sat down in the nearest chair and saw a life pass in front of my eyes (no, really).
It was the life that I’d expected for my little girl – running into my arms, going on a date, driving off in a car, giving her away at the aisle, holding her first child. I was crushed. Not knowing an iota of what I know now, I was beginning to mourn the loss of my expectations. A lot of that has been proven wrong. My heart is larger, my view of the world and other people is wider, and the quality of my relationships is deeper on a logarithmic scale.
My girl barrels into my arms. She kisses me like no other person on the planet. I have new dreams