When Christina was born, and we realized for certain that she had Down syndrome, my father, a devout Catholic, rallied the prayer warriors to pray for a cure for her Down syndrome. I credit this with the fact that she has never had a single one of the typical heart or gastrointestinal problems commonly associated with Down sydrome. However, I must admit, I felt a bit touchy about people who wanted to change the way my daughter is. After all, we Catholics are called to love one another unconditionally, so why pray for her to change? Wasn't she good enough to be loved with her Down syndrome?
I have often said "I love my Christy 'just as she is' and wouldn't change her if I could". One day, my 14 year old Gabbi asked, "you mean if there were a cure for DS, you wouldn't get it for her?Do you really want her to stay the way she is?"Of course, that question caught me flat footed! Who would deny our children cures? I DO love her unconditionally, but if she woke up tomorrow with regular abilities, would that change my love for her? Certainly not!
We have to remember the terrible lives people with DS had in the recent past. Even Dr. Lejeune, who discovered Trisomy 21 and loved our children deeply, wanted to find a cure for DS. He called Down syndrome an illness, but never meant it as a put down. As a doctor, he was confronted on a daily basis with the side effects and limitations of Down syndrome, of course he wanted a cure! He said, "it would take less effort than sending a man to the moon to find a cure for Down syndrome" (from his biography, Life is a Blessing) His greatest regret upon his death from cancer in 1994 was that he hadn't found it. His Fondacion Lejeune continues his research to this day, never losing hope, that Down syndrome, like Polio, may be relegated to the honor roll of conquered diseases.
1 comment:
You have such a beautiful gift for speaking the truth!
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