Friends With FOP

Posted by Karen

It seems we spent a lot of time this week talking and thinking about sports.  More specifically, my daughter Miranda’s participation in same.

In Canada, sports are encouraged for everybody, able-bodied and those with disabilities alike.  Miranda, at age 7, can’t help but absorb that.  But…  Miranda’s  Fibrodysplasia Ossificans Progressiva is a disorder which makes many sports challenging or impossible.

The discussion in our house started with one of Miranda’s birthday presents from last weekend.  The gift was a cute figure skating outfit, complete with authentic looking skates, for her doll.  Miranda LOVED this present, and spent much time dressing her doll in it and playing “figure skating competition”.  Obviously this got her mind ticking, because a few days ago, she said casually to me, “Mom, I saw a thing on the internet where you can get pretend skates that you can wear, but they don’t really skate.”

This ripped my heart out.  I know Miranda saw no such thing on the web, but rather was thinking about being unable to go ice skating.  Ice skating is just too risky (IMHO) for people with FOP – much likelihood of falling on hard ice (especially as a beginner skater) and causing an FOP flare-up which produces new bone and more limited movement.  Additionally, existing FOP bone in Miranda’s back severely restricts trunk movement, and you need to be able to twist, turn and bend your back when you skate.  And so, we’ve pretty much written off skating.  All I could do was commiserate with Miranda, and try to distract her with something else.  But geez did I feel bad for her.

In fact, I started pondering whether I COULD find a way to get Miranda skating.  I know that for her, sitting on a sledge and being pulled around the ice just doesn’t cut it.  I wondered…  Does anyone out there help folks with disabilities skate?  I tried an internet search.  The one really relevant thing I found was a registered charity which creates special adapted ”frames” to help children with disabilties be able to skate by holding them firmly upright while on the ice.  Sounds great, but…  Downside – I couldn’t see any evidence that they sell these things, but rather use them in their own skating programs.  In the USA.  Sigh. 

The next thing was also a few days ago.  Miranda said to me, out of the blue.  “Mom, I’m 7 now.  You can play floor hockey after school when you’re 7, like Owen does.  Can I sign up for floor hockey?”  (!)  To the depths of my feminist soul, I hate the response I gave her, but it was the first thing which came out of my mouth in a desperate attempt to not have to tell her YET AGAIN that she can’t do something because of FOP.  I said, “Umm, Miranda, you know that almost no girls play that, right?  It’s almost all boys.”  She then backtracked pretty quickly, and said maybe she didn’t want to play floor hockey after all…  Gah, I hate myself for that one, but I knew that Miranda “I’m-a-girl-and-I-only-want-to-do-things-girls-do” Friz would quickly abandon floor hockey without me having to mention FOP.  (I feel, in a complex way, both guilty and relieved at the same time.)

Finally, maybe because of all this other talk, I started thinking again about T-ball this spring for Miss M.  She told me recently – hmm, maybe it was even this week as well? – that she wants to play.  OK, this is the one team sport she can play in a quasi-safe manner, albeit decked out in Klingon battle gear for safety, ha ha.  She played last year in our local “Learn To Play” league, which for kids that age isn’t even games, but just doing drills to learn the basic skills. 

Still, even with helmet, knee and elbow pads, etc, my heart was always in my throat last year watching her play.  I wondered if maybe a “special needs” league would be a better idea.  I talked to one of their coaches, and he was very encouraging.  However, he said one thing which made me pause.  He said, in a nutshell, that the most important thing about the sport is for the kids to be with their friends.  Paradoxically, that’s what sold me on putting Miranda back in the regular league.  That’s where her classmates play, and she loved last year that she was on the same team as them.  And so, I told my husband Pete that I figure M should do the next step up in “Learn to Play”, which is T-ball.  He shares my concerns, but agreed.  We’ll just have to suck up our fears, grit our teeth and let her play.

Here's Miranda (with purple lips from eating candy, LOL) watching a university hockey game with her brother Owen, dad and me (the photographer) last night at our local arena. OK, so she can't play hockey, but she can have fun watching it.

If you or your child has FOP and you have any stories, thoughts, etc about playing sports (post-diagnosis, of course), I’d love to hear ‘em, so please leave a comment.  Thanks a bunch.