Thursday, March 26, 2009

Would I, Would He?



If I could, would I take away my daughter’s 47th chromosome and leave her Down syndrome-less? This question has been floating around the blogosphere.

It is not a possibility. It will not be a possibility. So why are we struggling to answer it? Consider what other questions lay behind the question. Do I accept my child as is? Would my child still have the same endearing personality without the Down syndrome? Did God specifically design my child this way? Is it wrong of me to want to excise the 47th C? Would life be better for my child if he or she had only 46C?

Yes, I accept my child as she is. I love her completely. If we could go back and not make her, we would not go back.

Maybe her personality would be the same, maybe it wouldn’t. This is a tangle of Nature vs. Nurture. I can see how her low tone causes her to be more mellow about everything which in turn causes us to respond to her in ways we might not otherwise, which in turn causes her to develop new actions and reactions. It’s the butterfly effect and yet our genetic makeup does influence our personalities. So there is no way to know the answer to this but either way, I am convinced she would have a wonderful personality.

No, God didn’t decide to throw in an extra 21st chromosome. He didn’t “do” this to her but He did allow it to happen. And I am glad He did because if He had stopped it from happening, she would be either never conceived or dead. (Uh, and in case you’re wondering, God doesn’t have a special needs nursery up there. He doesn’t pick out “special” babies and send them to “great” parents like us. Genetically speaking, sh*t happens and He can turn that into a learning experience and a blessing.)

Maybe it is wrong to want to alter our children into a more “typical” state, maybe it isn’t. We think nothing of having a conspicuous birthmark or an extra toe removed, why not an extra chromosome? Then again, surely these upgrades come with risks. Wishing your baby could magically not have Down syndrome is not the same as wanting your child to undergo a medical procedure that would alter his genetic code. One could make a subjective argument that the latter is wrong.

A better life? Well, that depends on how it’s lived, doesn’t it? We all hope our children turn out ok but the world is full of depression, divorce, addictions, and dysfunction. There is no guarantee that my typical children will have more fulfilling “better” lives than my 47C girl. More importantly, this life is ephemeral but what we do here determines our eternity. The Ds probably gives Kimani an advantage for securing a happy afterlife.

Yes. Maybe. No. Maybe. That depends. Those are my answers. Add them up and you get my answer to the first question, Would I? And, since it is just theoretical, I can vacillate at will.

My question is, will God take it away when He gives her a new heavenly body? (2Cr 5:1) I believe He will. While I think that anyone incapable of making a decision about Christ will be saved automatically (and that would certainly include some people with Down syndrome), I do not believe there will be Down syndrome in Heaven.

Does that mean He thinks she is imperfect as is? Aren’t we all? What is His view of perfection anyway? I suppose that would be Jesus, and my dear girl will not be sinless...(especially if she takes after her mother). Whether it’s snitching an extra candy or some other disobedience, she will remain only human until her “house is torn down” and she receives a new, perfect one from God.

When we meet there, will she say to me... “Mom, you turned down a theoretical Ds cure? What were you thinking?” or “Mom, you were going to theoretically rip out one of my chromosomes? What were you thinking?” Lol, I don’t know.

8 comments:

Billy Coffey said...

This is a wonderful post, and something I've struggled with for two years now. My daughter is seven and a diabetic. No matter how vigilant we are, she still feels awful sometimes. No matter how far medical science progresses, she still needs finger pricks and insulin shots. But she had touched so many lives because of her disease and met so many people who are thankful to know her.

Would I take away her diabetes if I could? I think so. Would the world grow a little dimmer in the process? Yes. What does that say about me? I'm not sure.

Lacey said...

Its funny you say that, because every once and a while I will watch Jax video and just be in awe of that horribe summer. It still feels like a dream sometimes.

Jo said...

This is a question posed to parents of special needs children all of the time. Your post sums it up beautifully.

Jennifer said...

As always, your honesty is so refreshing. You're a blessing.

This line is just it for me tonight: "Does that mean He thinks she is imperfect as is? Aren’t we all?"

Umm, hmmm.

Well said. Bless you.

JaybirdNWA said...

Very thought provoking post.

Indy said...

So honest of a post. I am sure so many parents have wrestled with this thought. Thank you for sharing.

Hector and Jennifer Varanini Sanchez said...

Really great post that speaks for a lot of us. The only difficult part for me was thinking that God would take the DS away in heaven. I think that the DS part of my son is what makes him closer to God and more similar to Jesus. Maybe when we get to heaven we will see that everyone has DS :)!! Just a fun thing to think about :)!

Janet Oberholtzer said...

Found your blog today through twitter - I had a sister with severe Cerebral Palsy, who went home to Jesus a year ago (she was age 39) And I love this thought in this post ... (Uh, and in case you’re wondering, God doesn’t have a special needs nursery up there. He doesn’t pick out “special” babies and send them to “great” parents like us. Genetically speaking, sh*t happens and He can turn that into a learning experience and a blessing.)

People were constantly implying the "special" child for "great" parents to my family.

Glad to see I'm not the only one that feels the way you do.

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