Children of glass

I get very frustrated when I read about osteogenesis imperfecta (OI). There is only one fatal type, and a particularly severe form of this already serious disease is what Henry had. There was, without a doubt, no way that we would survive life outside my womb if he made it to 40 weeks. 

In my journey to learn more about how to navigate through this horrible fog, I watched snippets of the documentary Children of Glass today. It was inspiring to see people coping with OI, and living relatively normal lives. Of course, I was screaming on the inside for not having the opportunity to do any of the operations (like rodding) or chemical procedures the individuals in the documentary had done with Henry. I even held back from trolling Youtube commentors living with Type 1 to let them know how lucky they were (of course they’re not lucky – I just wish my son would have lived like them).

Grief is wild and unpredictable animal.

Reading up on OI helps me understand why Henry died, but it also leaves my partner and I second-guessing ourselves. We know how damaging this can be to our already bruised and battered hearts, and we try very hard not to travel down the slippery “what if” path. But what if there was a wrong diagnosis, and Henry actually had Type 1, or even Type 3? What if he could have survived and been one of those miracle Type 2 cases? What if we’re terrible parents who have made the worst mistake possible?

The thing about OI is that it turns the surviving parent’s lives and confidence in to glass. We will sit and fret until we hear back from the doctors and geneticists working on Henry’s genetic coding, when we will get a firm confirmation on his condition and the likelihood that we will see this disease again if we try for other children. This information is, at best, one month away. 

Aside from a hornet’s nest of self-doubt, sadness, and recovering physically from labour and Henry’s birth, I find that the days are still the same. Confusing and dark, and feeling guilty every time I laugh or take something to make me feel better. But I still do it, somehow. 

Thank you for reading. 

 

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5 comments on “Children of glass

  1. Amanda says:

    Everything you feel is normal. Do let anyone tell you how to grieve. If you feel mad, it’s ok. If you’re sad, it’s ok. We all love you and are here to help you through this. Xx

  2. Natalie says:

    Dearest Mel…. My heart aches for you, and Henry, and Tyler… And yet I know that you made the best decision you could make for your child with the information and options you had, which is all any parent could ever do. May you find peace through this journey. Love and light to you xoxo

    • Mel Lefebvre says:

      Thank you Natalie. It’s just impossible that we’ve gone through this, and somehow, we’re still waking up in the morning. Life has felt like a cruel joke these past two weeks, but I know that someday, we’ll feel better – just not yet. Thank you thank you thank you.

  3. Anonymous says:

    My dear Mel,I am so glad you find some kind of comfort in writing grief certainly is a bitch but just know that you and Tyler will get through this and my heart aches along with yours my prayers and thoughts are with you both and I send you all the positive energy I can muster ,I hope the love of close to you are some comfort to you one day at a timeis all you
    Can do the sun will shine once again after the storm passes,god bless

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