Tuesday, August 6, 2013

Would Christina Choose not to have Down syndrome if she could?

Mary Keily has written a very thoughtful article about her daughter with Down syndrome and the new advance which shuts off the third copy of the 21st chromosome. She says. . .

Would Christina choose to have Down syndrome? I very much doubt it. Sometimes when our family is gathered around the table joking about one thing or another, Christina will turn to one of us and say sadly, “What are you guys laughing about?” In those moments my heart seizes. I wonder what fences she feels herself to be standing just outside.
And some of the losses Christina doesn’t even know about yet. For example, I haven’t had the heart to tell her that her dream of being a mom is one that will not come to pass, given her current level of capability. Our oldest child, 19-year-old Bridget, says that if she has babies someday, she will share them with Christina. It’s a beautiful impulse, but adult life can get complicated. Time will tell.
When I was pregnant with Christina, my husband and I were told, on the basis of my triple screen prenatal blood testing, that she was at high risk of having Down syndrome. We decided to bring her into the world anyway, feeling we were not wise enough, could not ever be wise enough, to assign a value to her life. I have never regretted that decision. Christina has been and is deeply loved.
But I also have no doubt that I would treat her Down syndrome if I could.
Read the entire article here.

We have a lot in common; my eleven year old daughter is named Christina and she has Down syndrome and possibly autism as well. We are still seeking our third psychological evaluation to determine if the loss of speech and cognitive abilities she experienced in  elementary school was due to autism. No one seems to understand why she can't speak anymore and has never learned to read more than a few words in seven years of school.
I agree that she would not choose to have Down syndrome if she could, she is isolated from the family not by our choice, but her lack of language makes some activities impossible for her to participate in, and we feel terribly guilty. Then she gets frustrated and throws something (I don't blame her) and goes off again to watch a movie alone.
 My heart breaks for her loneliness. She has no friends, despite our best efforts,her lack of language makes it very difficult to play with her and only the rare child has the patience and understanding. Most just walk away staring at her.
  Although she has made us better people, teaching us the same lessons you mentioned; clarifying priorities, learning to look at the soul not the exterior, we see her despondent at times as she struggles against obstacles she can't understand.

 That's why I hate Down syndrome but love Christina.
Just like Dr Jerome Lejeune who discovered the third copy of the 21st chromosome and spent the rest of his life seeking to cure Down syndrome out of love for his patients. He said, "Hate the disease, love the patient, That is the practice of medicine."

Bookmark and Share

1 comment:

Barbara Fryman said...

This is something that I think about when I consider the implications of "curing" Down syndrome. (I put it in quotes because I'm not sure that is the right word.) I will always consider what Mae would want. Already at 17 months she is intense in her desire to catch up with my older children. It hurts to watch videos of the others at her age walking and talking and knowing she WANTS to do those things. She's the hardest working baby I have ever seen. Would I cure her? In an instant. Would I grieve losing the person I would have become by serving her? Selfishly, yes. But her life isn't mine, it's hers. Honoring that is what I must do as her mother.