Measured in more than inches

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.



8 Responses to “Measured in more than inches”

  1. Heidi Says:

    Thank you for sharing this. I admire your ability to look past the jealousy and just cheer the mother on!!

  2. bestlight Says:

    Wow. That’s an amazing story.

    The desire for motherhood is so strong…

  3. Michelle Says:

    Very interesting. I didn’t know your husband had this too. I’m completely oblivious to what “blue sclera” is…and what you mean by a dentist improved smile. Can you tell me more?

  4. bleu Says:

    Wonderful link Jen. You are a wonderful role model as well, both of you, in both the IF world and in broadening others lives and educating us all about OI and about the strength of the human spirit.

    Thank you.

  5. Kymberli Says:

    What a moving post.

  6. Denise Says:

    I saw that story and thought of you guys. I admire what you are doing.

  7. Erica Says:

    I didn’t realize either that you husband had OI. I think it’s wonderful that you are making us all aware of this. Sometimes I think it’s hard to look at anyone else’s pregnancy and not get jealous. It’s just a sentiment to the person that you are. I think you and your amazing hubbie with make great parents.

  8. Jen Says:

    As a clarification, blue sclera means the whites of his eyes aren’t white. He actually has a bluish hue to the “whites” of his eyes. As for dentist-improved smile, because OI stems from a lack of collagen or a lack of quality collagen, he has crappy teeth. About half are his and half are crowns, bridges and caps.

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