Since we are visiting friends and relatives, I didn’t want to have to explain Belalu’s condition over and over, so I decided to email everyone before we left. And then I sat staring at the screen. How much should I tell them? How many details to include? What details can I include, if we don’t know how this condition will manifest itself for her?
I thought about the term “dwarfism.” I almost didn’t include it, but then I decided that I had to. If I just use the medical term and explain its effects, people may not really get how significant this is. Part of me believes that in terms of who she is, hypo is a very minor part of Belalu as a person. However, I would be naïve if I didn’t recognize that it will shape who she is as she gets older. So, if I didn’t explain that hypochondroplasia is a form of dwarfism, I felt like I was only telling part of the truth. However, I also knew that as soon as I put that word out there, it would be impossible to remove from people’s minds. In the end, I did include it. I just felt like I would be trying to hide or gloss over the truth if I didn’t. (This is for family and friends- not random strangers or even acquaintances I run into- for those folks, I do not mention dwarfism).
I also have become aware that the way I tell people about hypochondroplasia reveals my own concerns. I almost always say, “Hypochondroplasia is a milder form of dwarfism,” as if I’m trying to soften the blow of the news (For them? For me? For both). Yes, it may mean she’ll be taller than if she had another form of dwarfism, and/or she may have less medical complications, but really neither is necessarily true. But I tell myself that it gives people something to cling to when they don’t know what to say. “Oh, well that’s good! At least the complications aren’t too severe.” Or something to that effect. Really, though, I’ve come to realize that that little word, “milder,” has helped me to cope with all the unknowns. Rationally, I know that she can still easily have complications or may have problems fitting in with her classmates at times, but it’s just as possible that she won’t. So, I’m choosing to envision positive scenarios when I think about her future.