Sunday, July 6, 2008

Isn't searching for a cure an insult to our children?

I was just attacked at a Down syndrome site for "wanting to treat our beautiful children like lab mice", and rejecting their uniqueness. I am still smarting from the dressing down out those women gave me, because nothing could be farther from the truth.

I think we mothers get confused about loving the child and hating the disease. Children with Down syndrome do have their personalities somewhat shaped by their chromosomal enhancement, so many mothers can't imagine them without DS, and they love them as they are, so anyone who wants to change them is seen as rejecting them. The child faces a lot of rejection from society, and her mother becomes her best defender and loves her child with the ferocity of a lioness.
SO, if a researcher says he's got a cure, isn't he rejecting our children's uniqueness?

Let me tell you the history of Dr. Lejeune. One day in the 1960's there was a TV program in France about aborting children with DS,and a teenage boy with DS started sobbing after the program, 'Mom, they want to kill us!" The next day, he begged Dr. Lejeune to protect him from those who wanted to kill him. Dr. Lejeune made finding a cure for DS his life's work. Dr Lejeune told Dr. Marie Peeters Ney, who came to work with him in Paris, that it was the duty of Catholic researchers to do this, because, if not, "in twenty years, there won't be any children with T21 left". With a 90 percent abortion rate, and better prenatal tests available for T21, he wasn't far wrong, was he?
Now, if your typical child came down with a bacterial infection, you wouldn't hesitate to give him an antibiotic, would you? If he had Cystic Fibrosis, and was slowly dying before your eyes, wouldn't you give anything for a cure to save his life? Down syndrome is a disease just like the other two, and if a well-tested drug came along to help Christina's memory, her coordination, her speech development, or her ability to learn, should I say, "no, I love her as she is?" or give it to her?
I would certainly give it to her.
Just because I believe that God chose her for me doesn't mean that if a cure became available that I would see it as outside His will. That doesn't mean that I keep looking at her and imagine "what if she could do this or that?" No way, I love every little advance she struggles to make,and her dogged persistence to learn things I took for granted when her sisters leaned it ( like potty training!!) I admire her pure heart, her cheerfulness and her curiosity, just as I admire the good qualities of her sisters. She has unique gifts from God, and nothing will ever change that.

I think sometimes that the more resistance we faced from family and friends to giving birth to and keeping our child, the more defensive we get, AND sometimes we can back ourselves into an unhealthy position. We attribute evil motives to the scientists who are working on a cure, or
dollmakers who want to make our children happy with a toy that resembles them. Or doesn't.

Did you know, that only 6 years ago, when my Christy was born, the mentality of the medical community went something like, "we told you how to diagnose and abort your child with Down syndrome, you chose not to, so tough, don't come running to us for a cure!" Do parents of children with Autism hear this? NO. For one reason, Autism is diagnosed after not before birth. The mentality used for dealing with Down syndrome at the March of Dimes was cure the disease by killing the diseased. Sick. Dr. Lejeune was taken off the list of the MOD beneficiaries because he was prolife. I have this from the founder of the Michael Fund(raises funds for researchers on Down syndrome who are pro-life) Randy Engel, who heard it directly from the good doctor on two occasions.

Now, thanks to thousands of active parents, legislators and scientists are coming together to find cures for the delays caused by T21. Programs to educate our children, NOT warehouse them are proliferating around the nation, and I feel an optimism in the air that someday soon, having a child with an extra chromosome will no longer be seen as the greatest tragedy that can happen to a mother. They will no longer be aborted, and my daughter will look around and see lots of beautiful faces like hers.


Alice Gunther said...

Fantastic post that makes perfect sense.

Elizabeth Kathryn Gerold-Miller said...

There is so much truth in this personal post.

Chris said...

I too have gotten into some heated discussions about embracing a treatment for Down syndrome. My son was born with a heart defect (and Ds). That was the way God made him. Was I denying God by having his heart repaired--of course not. Would I be questioning God by treating my son if a cure for Down syndrome became available--of course not. If such a cure becomes available, I see it as God's hand at work. A blessing that should not be denied. Thank you for this post. I too am Catholic, but I must admit, my faith has been tested. I love my son for the gentle soul that he is, but I still wish the Down syndrome was gone. God bless!