We Who Give Life, Give Pain

I have a friend!

Her name is Ellen, and we had so much fun hanging out (in person! with her!) last week that I forgot to get a picture of us together, or to ask her to sign my copy of her book. Oops.

Yes, Ellen has written a book–No Easy Choice.

If you are a person of Christian faith–or simply a person open to the possibility of faith–and you have ever wondered about the ethical questions surrounding any of the following–

  • parenthood as a calling
  • the meaning of suffering
  • adoption
  • infertility
  • disabilities
  • PGD (preimplantation genetic diagnosis)
  • IVF (in vitro fertilization)
  • more!

–then this book is for you. It is a beautifully written, comprehensive, and thoughtful contribution to a discussion that is all too frequently muddled with generalizations, oversimplifications, and fallacious arguments.

There is so much that I want to say about this book. But before I can say it, I have to tell you something about me, and that’s this:

I, and my two sons, have the same genetic disorder than Ellen and her eldest daughter have.
I inherited it from my mom, who inherited it from her father, who inherited it from his mother, and, before that, we don’t know. It’s an autosomal domininant disorder, which means that an affected person (male OR female) has a 50% of passing on the disorder to each child he or she may have.

The disorder can vary very much in how it affects individuals. I broke only very few bones as a child (maybe because I was a lazy bookworm!?), my mom broke about a dozen bones as a child; Ellen broke dozens. Apart from back pain (from my scoliosis) and odd aches and pains, my OI doesn’t affect me much. It’s something I can easily forget about, in fact. It affected me more as a child, when I could participate in most “normal” activity but would experience pain (& shame) at my slowness, weakness, and lack of coordination.

But that was about the extent of OI’s way with me. I’m very, very lucky.

I got stronger as I got older–I even ran two half-marathons! When I had our children, I did fine, and never considered that OI would have any bearing on their lives–other than being small, late at walking, having the whites of their eyes be blue, and having long, slender fingers (like me!)

That is, until between them the boys had 3 broken legs and several sprains in the space of a little more than a year.*

At that point, I began to feel guilty: I had done this to them. My ‘bad’ gene made this happen. Oh, they are so very mildly affected–and of course they are good and perfect gifts from God just as they are. But sometimes when my insides clench watching them take a spectacular fall (as kids do) and I just pray pray pray “don’t let them break!”– I can’t help thinking–

“I’M responsible for this frailty.”

Not to be all paranoid or whatever, but here are some things I imagine people saying:

  • Don’t you trust God?
  • It was irresponsible for you to reproduce in the first place.
  • Come on, your form of OI is so mild. Are you really so worried about a few broken bones now & then?

So what a gift from God Ellen’s book is for me. In light of the Christian story, and the context of telling her own family’s beautiful, redemptive story, Ellen raises great questions about the meaning of disability and suffering, about the ethics of using PGD/IVF, about the harsh realities of genetic disease and the myriad difficulties and complications surrounding reproductive technology and the fact that for all parents— “the only way/is hard. We who give life/give pain.”

But it’s by that “pain we learn/the extremity of love.”

Indeed it is.

This is a grace-filled, deeply Christian, thoughtful, wise, beautiful book. Read it!

{*The boys haven’t been hurt–knock on wood!–since that bad year.*}

5 thoughts on “We Who Give Life, Give Pain

  1. Rachel, your words this morning made my breath catch in my throat. My son and daughter may be in college and out of the vulnerability of childhood, and they may never have experienced the the type of vulnerability you and your children have, but still I pray every day for God’s protection on them. And while I may not have passed on a genetic mutation that affects their health and safety, there’s plenty I’ve done (or failed to do) that has put them at risk over the years.

    Like you said, “I just pray pray pray ‘don’t let them break!'”

    I am so glad you and Ellen had the opportunity to spend that time together, and that she wrote her book, and that you gave us this wonderful blessed look into your life out of all that.

    Tim

    P.S. You and Ellen didn’t get a picture together? One word: photoshop.

  2. Thank you for sharing this part of your life. I’ve never heard of the disorder. I’m glad to know of this resource!

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