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.