Friends With FOP

Posted by Karen

In the early days of our life with Fibrodysplasia Ossificans Progressiva, I heard from many people that when FOP becomes symptomatic in young children, the parents are more emotionally affected than the kids.  I’m sure this is true.  The child grows up with FOP and will never remember anything different, but the parents have to shift gears from having a “typical” child to dealing with the consequences of FOP.  This is, to put it mildly, quite an adjustment…

I’ve mentioned in other blogs that Pete and I have adapted to our Miranda’s FOP about as well as could be hoped or expected at this stage.  We’ve accepted it (though we obviously don’t like it) and forge ahead to do the best we can for Miranda.  We enjoy life, and so do Miranda and her brother (who doesn’t have FOP).  And yet…  We still have moments when we feel profound emotion about what’s happening to our child.

Pete had one recently that he told me about.  He was talking to Miranda about her day, and somehow it came up that she asked him why her colds eventually go away, but her FOP doesn’t?  She then added, casually but with a little bit of wistfulness, that she wished she didn’t have FOP.  And then, as five-year olds will do, she switched gears and started talking about her toy.  Pete said he had a painful and bitter twinge at this.  It’s a rotten, rotten thing to have to know, as a parent, that there is NO medical treatment to make your child’s medical condition go away.

I had another of these occasions this week as well.  It was the last day of Miranda’s “Young Tunes” singing group to which she’s been going on Wednesdays for the last 6 weeks.  Every Wednesday for an hour, Miranda’s been doing some fun singing with other little kids aged 3 to 5.  While she sings, Owen and I sit outside the classroom and wait for her (with Owen whining about how long it’s taking and quizzing me about NHL hockey, ha ha).  This Wednesday was the last class, and family members were invited in to watch.

It was very cute.  The group sang “Baby Beluga”, “Down by the Bay” and an assortment of other kiddie favourites.  Singing, of course, is mostly a sedentary activity, but some songs did involve active parts where the kids imitated animals or trucks or whatever.  For one song, the teacher stood at one end of the room and lined the kids up at the other.  Then, everyone sang a song about a robin, and during each repetition of the verse, one kid would act the part of the robin while the others watched.

I watched while each of the other kids ran/flitted/twirled/jumped around the room in imitation of the titular bird.  And then, last to go, it was Miranda’s turn.  Having seen what the other kids did, I was a bit trepidatious about this…  If she ran around and twirled, etc, could a disastrous fall be far behind?  (Though Miranda is stable for walking, the excess FOP bone formation in her trunk and neck make it difficult to correct her balance when it’s thrown off, even a titch, and then she falls like a tree.)  Despite the risks, however, I didn’t want to stop Miss M.  Obviously she’d done it other days without mishap.  And so, I watched as she walked forward, flapped her hands a few times, did one loop around the room (still walking) and then made her way to the group at the other side.

Miranda, after being a robin.

I had very mixed emotions seeing Miranda perform in this way.  I had a pang of feeling very, very sad that my child has to moderate her actions this way.  To know that Miranda can’t just run around and jump for joy like other kids was surprisingly distressing in that instant.  However, on the other hand, I also felt pride in my girl that she HAD learned to adapt her behaviour to be safe.  Clearly Miranda knows her own physical limitations and stays within them.  I also realized, in that moment, that I had witnessed the probable reason why almost all of Miranda’s major falls have occurred at home (ie, where she has her guard down and is being less careful). 

Definitely it’s good that Miranda has learned caution, and *most* of the time Pete and I are able to rejoice that this expands her universe and makes it possible for her to take part in many activities.  I just know, however, that we can’t completely eliminate those instants where we painfully regret our sweetie’s loss of childhood freedom.

Here's another time when Miranda wanted to sit on the piano bench with her teacher, rather than dance around with the other kids.