Posted by Karen
When my daughter Miranda was first diagnosed 4.5 years ago with Fibrodysplasia Ossificans Progressiva, one of the (very many) concerns I had was about her ability to enjoy life. How could Miranda ever be a happy child with this horrible genetic monster hanging over her shoulder and affecting her every move? In my extreme despair, I pictured a gloomy life, with Miranda being in constant pain and watching other children do everything she couldn’t.
Thank goodness the reality is nothing like I had feared.
As I’ve blogged about many times before, Miranda is a happy, fun-loving girl who does lots of very typical kid things. OK, maybe there are some alterations to how she does some activities, but the point is that she takes part. Enthusiastically! What I didn’t really grasp in those early days is that Miranda would grow up with FOP as part of her life, and that for her, it would just be something about her, like the colour of her hair or being left handed. She doesn’t have the emotional/psychological baggage about her disability that her parents have. She always assumes she’s going to do what everyone else does. Why wouldn’t she?
Take Halloween. Miranda LOOOOOVES Halloween. Go figure, but there’s something that really turns her crank about dressing up in costume and getting all the candy she can eat. This year we went to Value Village to see what cool costumes we could dig up, and we happened to spy a little blue sequined dress. This was perfect, because Miss M wanted to be “Lagoona Blue”, a character from the “Monster High” TV show. Lagoona Blue is supposed to be some sort of water-monster teenager (who dresses in stylish clothes, natch). We put together a pretty good costume…
Miranda got to test drive her costume on Friday night of this past week when we went to our school’s “Monster Mash” Halloween family dance. Was this a risky event for Miranda to attend? Yes – picture all kinds of kids running around and making mayhem in a dark gym with flashing coloured lights; lots of potential for someone to barrel into Miranda and knock her to the floor (thus putting her at risk for FOP flare-ups). But while the risk was there, Miranda’s disappointment about missing this dance would have been terrible to contemplate, and the risk wasn’t so high that we wouldn’t do it (ie, it’s not, you know, skateboarding).
We went to the dance, and of course had lots of fun. Miranda and I danced up a storm (her dad’s not so fond of dancing, but he enjoyed himself talking to other parents – and Miranda’s brother Owen spent his time running around the gym with his posse of 9 year-old buddies, LOL). OK, I did stick close to Miranda to keep her safe, but most of the parents did that with their kids too, so I wasn’t really doing anything very unusual.
I guess my point here is that so far, Miranda’s childhood has NOT been the nightmare I worried about when she was first diagnosed with FOP. FOP is part of Miranda’s life, but not even the most important part. If you’re reading this and you’re a parent of a child newly diagnosed with FOP, I hope you’ll remember that and be able to take it to heart (someday, when you come up for air after the diagnosis).