Archive for the ‘OI’ Category

Measured in more than inches

March 3, 2008

28-inch-tall mom gives birth to 18-inch baby

When I saw the headline, I knew. Without reading the article. Or looking at her face. I just knew it was a story about a woman with OI.

And I had to share.

It is, to me, a reminder of hope.

Never once in reading her story did I question why she gave birth and I didn’t. Why she gave birth to a healthy child and I didn’t. Instead, I felt such pride in her achievement of becoming a mother twice over.

And without question, I can say I will never truly appreciate what my husband or any others of those with osteogenesis imperfecta have and continue to live through.

But what I can appreciate is how strong these individuals are and that their lives are measured in more than inches or the number of broken bones.

Obviously, as an outsider to the disease and outside of my husband, the Internet and various chat rooms are my main source of information and connection to this “community.” It’s here, among this community, where I do have the pangs of guilt over our method of trying to reproduce.

I have been asked if he is in a wheelchair. If he had rods inserted into his legs as a child. If he has insurance. If he has a job.

It’s only then that I think maybe we are silly for going the IVF route.

You wouldn’t know by looking at him that he has OI. Sure, he’s a little shorter than he’d like to be, or should be based on those size 12 feet. But at 5’10, he’s not short, not tall. Sure, if you get up close you can tell he has blue sclera and a dentist-improved smile. But you have to look hard to see. Sure, he has scars on his arms from surgeries and pins placed through bones. But he’s always willing to tell the story behind them.

But most of all, he is just like you and me.

Maybe that is what the story of the 28-inch-woman reinforced in me. Big or little, we are all just trying to reach our dreams, whatever they may be.

And our dream is giving our children a life without OI.

I try to remember that every time I feel sad about our losses. This isn’t about us, it’s about our children and the life we want to give them.