Friends With FOP

Posted by Karen

Ah, it’s New Year’s Day…  A day for looking ahead, and hoping for a great year to come.  On the downside, seasonal holidays are only 1 day longer – d’oh!  Our family has had a really fun break, and while we’ll be refreshed and ready to get back to the regular routine, I’ll be sad to see it end.

One good bit, for example, was that from December 26 through 29, we had our son Owen, age 9, signed up for his first ever set of snowboard lessons at Cypress Mountain.  He went 4 days straight, from 8:30 AM to 3:30 PM.  (OK, the part where we had to get up early to drive him each day wasn’t so hot, but we managed.  )  Our routine was for one of us to ferry him to the ski hill, then return and spend the rest of the day with Miranda. 

Unfortunately, snowboarding and skiing are activities that Miranda, with her Fibrodysplasia Ossificans Progressiva, just… can’t… do.  What I mean is that my husband Pete and I have considered the risks, and decided that these snow sp0rts pose too many difficulties and risks for Miranda.  First, there’s the movement part of it – to ski or snowboard, you have to be able to shift your torso and move your body freely in order to keep balanced and going forward.  This is impossible for Miranda due to her rigid spine, unmoving shoulders and (mostly) locked elbows.  She just wouldn’t be physically able to do it.  Second, there are the dangers associated with these sports.  I remember that when I learned to ski, there were multiple occasions when I wiped out spectacularly, with one ski going one way and the other going the opposite direction, causing multiple bruises and muscle strains – all of which would be bad news for a person with FOP, who is likely to suffer an FOP flare-up with more resulting bone formation.  Yikes.

But though Miranda can’t do these sports, we wondered if there was anything else she could maybe try at the ski hill.  Pete looked into it, and he learned that   there’s a snow tubing area at Cypress.  It turns out that if you’re age 6 or older, you can go to the snow tubing place and pay a fee to rent a big inflated inner tube, get towed up a hill and slide down the hill in the tube.  I was kind of leery about this…  Miranda is 6 years old, so is the youngest age at which you are allowed to participate, and besides, I wasn’t sure how she’d manage with the tube.  Still, we decided that the three of us would go up to Cypress one day while Owen had his lesson, and that Pete and I would take turns skiing and checking out the tubing hill with Miranda.  We figured that if the tubing looked OK, she could go tubing, but if not, then surely she could at least play in the snow.

We went up on December 28, and we decided that I would ski first and Pete would spend the morning with Miranda.  It turns out that he took her to the tubing area, and from the get-go, she was VERY keen to give it a try.  Pete scoped it out, talked to the attendants about risks, etc, and decided to make it work.  He got a free ticket for the tubing area as he was helping Miranda (this is Cypress’s policy for attendants with people who have disabilities), and he paid for a standard tubing experience for Miss M. 

It turns out that Miranda loved snow tubing!  Pete says that she made it to the bottom the first time, and then shouted, “That was SO MUCH FUN!  Can we do it again?”  She then went up and down the hill a whole bunch of times, laughing all the way.  Pete sat in his own tube and held on to hers (which, strictly speaking, wasn’t necessary, but it made her feel safer).

Miranda lasted a bit over an hour at this, which sounds like plenty to me.  After that, they went back to the ski lodge and got some lunch, and then Pete and I switched off and he went skiing.

I’m so very glad that Miranda had such a great time doing snow tubing.  She raved about it afterward, and says she wants to go back and do it more.  So why was it so great?  I have no doubt that Miranda had a blast, but I don’t think that’s the whole story…  It was at least as important that she had the chance to do a fun snow sport just like any other kid.  In fact, she even saw one of the other children from her grade 1 class at the tubing area, and though she didn’t specifically say this, I bet she was proud to have been seen by him doing snow tubing.   

Miranda even got to sport one of those nifty little ski tags on her parka.

On a totally separate topic, Happy New Year to you and yours!