Friends With FOP

Yesterday was a beautiful sunny day, and we had met some friends at a local park.  “Mom,” said Miranda, glancing at 4 year old Hannah, “How come Hannah doesn’t wear a headband?”  My heart gave a little twist.  It wasn’t the first time Miranda’s asked this question (in respect of any of her friends), but she’s only asked it maybe 2 or 3 times now.  By “headband”, she was referring to the protective neoprene headgear we have Miranda wear outside our house.  I answered her question the same way I did the other times: “Well, Hannah doesn’t have FOP.  You know, that silly old FOP can make a big bumpy on your head if you fall and hit your head.  Your headband protects your head.  Remember when we met Erin, and she has FOP and she had a headband too?”  I tried to explain this as casually as possible.  Miranda nodded, was satisfied, and trotted off to play…

When Miranda was first diagnosed with Fibrodysplasia Ossificans Progressiva at age 2 years and 3 months, she was far too young to have any understanding of what it meant.  As such, one of the many things Pete and I had to figure out about FOP was how to explain it to our kids as they grow older and start to ask questions.  After getting to know what others in the FOP community have done, and thinking about the issue, Pete and I agreed that the way we’d handle it would be to introduce the facts of FOP to our kids in a simple, age-appropriate and matter of fact sort of way.  We figure that what’s best is for us to gradually introduce them to what it’s all about, so that they grow up knowing about FOP as a part of Miranda’s life, and adapting to it naturally.

I’d have to say so far, so good…  Owen, who’s 7, understands that if Miranda gets hurt, she can get a “bumpy” on her body which can make a new piece of bone and make it harder for her to move.  As for Miranda, she at age 4 just knows that because of FOP, she’s only allowed to run on grass, and that if she gets hurt she might get an “ouchy bumpy” on her (especially on her head, which is what she always thinks of – probably because of the headband).  She also knows that she can’t get her arms up very high because of FOP.  Miranda’s never shown much, if any, distress about FOP, and doesn’t really ask about it.  Occasionally I can see Owen thinking about it a bit more, and he’s asked if Miranda will have FOP forever.  When he’s asked this, my response has been to say, “Yes, unless Dr. Fred can make a medicine for FOP.  Remember Dr. Fred (ie, Dr. Fred Kaplan of UPenn), who we met a couple of summers ago?  He and some other doctors are trying to make a medicine to stop FOP.”  So far, that’s been enough for Owen.

The only other person we’ve ever met who has FOP was our little friend Erin McCloskey.  She’s just a few months younger than Miranda, and it was pretty clear neither girl (or their brothers, for that matter) had any inkling there was anything unusual about either of them.  However, there’s an event coming up which will be, I think, a bigger test for both us and our kids.  Specifically, at the end of May, we’re going to London, Ontario to the first ever Canadian FOP Conference, which I have been helping to plan.  At the conference, we expect to meet with about 10 people who have FOP, and most (or maybe even all) of them will be older than Miranda.  In fact, I think most of them will be adults.  I think the conference is going to be a fantastic, wonderful event, and I’m really looking forward to it, but there’s part of me which is a little concerned about whether our kids will have any reaction to seeing adults with advanced FOP.  Will it “click” for either Owen or Miranda that FOP is the cause of these adults’ disabilities, and that such things could well happen to Miranda in the future?

This is a bit of a worry.  However…  Pete and I have made the decision not to shield our kids from others with FOP.  It might cause them emotional pain, but if so, we’ll be there to help them deal with it.  We’ll support our kids, and comfort them.  This is not to say we’re going to specifically go out of our way to push our kids into troubling situations, but rather just that we’re going to the conference, and our kids will be with us.  At appropriate and natural times during the conference, Miranda and Owen will likely meet the other attendees with FOP, and when that happens, we’re going to be low key and casual about it.  If such meetings cause them to ask more questions about FOP, we’ll answer them honestly, and as I mentioned earlier, in age-appropriate ways.  All I can do is hope we’re doing the right thing…

I know other parents have chosen not to take their children to FOP meetings until the children are “older” – and “older” varies from family to family.  I have complete respect for the decisions others have made.  Every family has to have its own way of dealing with FOP, and that’s going to mean different people do things differently…  For our family, however, the way we’ve planned to have our kids experience FOP feels like the right way to go for us.

So – why have I included this photo?  Apart from an excuse to show off my gorgeous kids (what mother doesn’t think her kids are spectacular??), I want to demonstrate that Owen and Miranda are happy, fun-loving kids in spite of Miranda’s FOP.  The ability to enjoy life and be comfortable with themselves is what I want for my kids, now and in the future, as much as I want a cure for FOP.  And that’s saying a lot…