Snow (and kids with FOP)

Posted by Karen - December 11th, 2016

We usually don’t get much snow where we live. The British Columbia, Canada south coast is much more likely to see a very rainy winter than anything else. A light dusting of snow 2 or 3 times per winter (and lasting maybe an hour at a time before disappearing) is typical.

However, every now and again, snow decides to fall on us BUT GOOD. That happened this week. We had a big dump of snow on Monday, and then another on Friday.

The view from our house this week.

The view from our house this week.

So what does this have to do with my daughter Miranda’s disorder, fibrodysplasia ossificans progressiva, the subject of this blog? Well, let’s just say that snow can be a good thing or a bad thing for a kid with FOP…

Back in the winter of 2008/2009, we had an epic winter with lots and lots of snow (very unusual). Miranda was 3 years old that year, and had such a lot of fun. I would bundle her up in snow pants, parka, boots, and mittens, and she would roll around in the snow, toboggan, and make snowmen. Basically, she was able to enjoy the outdoors just like any other kid. The thick layers of clothing she was wrapped in provided excellent protection from the trauma of falls, and the snow added yet another layer of padding too. Without snow, I had to repeatedly remind my toddler to not run, be careful, don’t fall, don’t do risky things, etc, etc, etc, ad nauseum – but in snow, my girl with FOP could do almost anything she wanted! That year I really loved snow.

Miranda in winter conditions, just this past weekend...

Miranda, back when snow was a good thing.

Right now? The snow is not so much my favourite thing for my 11 year old with FOP. It’s because of FALLS. By way of brief background, if a person with FOP suffers a trauma to the body, such as from a fall, they can suffer an FOP flare-up which causes a soft-tissue swelling in which muscle tissue is being converted to bone. This is obviously a bad thing, as extra bone contributes to more limited movement and progressive lack of independence. Thus, we do not want falls.

Back to Miranda… She’s now at the point where she’s lost interest in mucking about in the snow, and instead, her main interaction with it is in walking to and from school. All of this snow is a big problem because the temperature fluctuates a lot here, and the snow this week has been partially melting and then re-freezing into uneven icy terrain. Even with solid winter boots, it’s extraordinarily hazardous to try and get from our house to the door of the school, even though it’s not a long distance trip. To top this off, Miranda is in her “I’m 11 years old and you don’t need to walk with me”, phase, and all of this is just an invitation to disaster.

Earlier this week I drove Miranda the 350 m to the school parking lot, and – with great reluctance – let her walk on her own the 50 m along the back of the school to her classroom door. I watched as she walked, and my heart was in my throat the whole way as she gingerly picked her way along between piles of ice and frozen snow (thankfully she did make it safely). That was it; clearly this wasn’t going to work any more. That day, I arranged for special permission to drive Miranda each day during the snowy period to an alternative parking lot which is much closer to her classroom, and then in fact to cut through a door in the school to get to her classroom from the inside. The entire hazardous walking distance is now more like about 10 metres – much, much better.

One more thought – this is all bad enough with Miranda as a walking person. But if she was in a wheelchair? Honestly, I cannot imagine how this would work. I think a wheelchair user would find it virtually impossible to travel outdoors where we live right now.

So… White Christmas, and all that? It will be lovely, but oh so hazardous for Miranda. I must honestly admit that I want it all to melt away.

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