Friends With FOP

Last year around Christmas time, our little area of the world had a HUGE dump of snow.  Way, way more than usual, and we dealt with giant snowdrifts and icy roads for multiple weeks.  And, no big suprise here, a couple of times when we went out with Miranda, she slipped and fell while walking across icy parking lots.  I remember at least a couple of times spending several nervous days waiting to see if she’d have resulting flare ups of her Fibrodysplasia ossificans progressiva (luckily she dodged that bullet both times).

I remember thinking frequently last year, “GEEZ I wish I could avoid having to walk all the way across these stupid frozen slippery parking lots with Miranda…  This is just an accident waiting to happen.”  However, the obvious solution to the problem didn’t occur to me.

In spring and summer, parking wasn’t such a big deal, though I still always felt a bit nervous about the riskiness of walking across metres and metres of concrete for a little girl with FOP.  And then came the fall, which brought a September visit between the Friz and McCloskey families in Woodinville, Washington.  We went out the day after arrival in Suzanne’s vehicle, and upon arrival at our destination…  Suzanne casually pulled out a disabled parking pass and hung it on her rear-view mirror.  She then pulled right up into one of those spots at the very front of the parking lot.

Bing!  Lightbulb went off in my head as I realized that we too could benefit from one of those.  Upon our return home, I mentioned it to my husband Pete.  He was, however, very much unconvinced about our need for such an item.  Aren’t those just for people in wheelchairs???  Miranda is completely mobile as far as locomotion is concerned, so he just couldn’t see that it was correct for her to have a disabled parking pass.

Pete was pretty doubtful we’d ever get approved for such a pass, despite the evidence that the McCloskeys had obtained one (different country, different regulatory agency, blah blah blah).  But, and Pete admitted this to me, he also felt a bit…  “squeamish” about obtaining a disabled parking pass because it is, after all, admitting that our sweet child actually IS disabled.  We use the term “special needs” a lot, which is a much less loaded term, and don’t often refer to Miranda as having a disability.  I have to say that though I favoured trying to get a pass, I could see his point.  It is somewhat difficult to apply the “D” word to your own child.

When I pitched the argument about icy winter conditions, however, Pete admitted as how that might be a valid point.  I said to him finally that we’d leave it to our pediatrician – we’d tell him we were interested in a disabled parking pass, and see what he said.  If he was reluctant to sign the application (which is required for approval), then we’d just drop the issue and forget about it until such time as Miranda actually may become challenged for locomotion.  That seemed like a fair way to proceed.

It happened that Pete was due to take Miranda for her pediatrician’s appointment earlier this autumn.  He took the application form along, and it turned out Miranda’s doctor didn’t even blink an eyelash before agreeing to sign it.  He said it was a perfectly valid thing, which I think kind of surprised Pete.  And so, when he brought the signed form home, I think he had mentally turned a corner…  If the pediatrician approved of it, well, then maybe Miranda’s FOP really did merit the use of a disabled parking pass.

I filled out the rest of the form and submitted it to the necessary agency.  Despite the pediatrician’s approval, though, I myself still had a bit of doubt the application would really be approved.  I think there was a lingering bit of reluctance to believe the agency would see Miranda as having a disability.  Analyzing the situation, I recognize that I figured the parking pass people would have a problem with it because I still had a smidgeon of a problem with it.  I felt some deja vu – it was the same feeling I had had when we applied for “benefits for severely disabled children” from the province of British Columbia.

Of course, just as had happened when we applied for the disability benefits, it came to pass that we received a letter in the mail a couple of weeks ago enclosing the disabled parking pass.  There was no argument about it, no need for us to persuade the agency – apparently, despite Miranda’s normal legs and unimpaired ability to walk, they were persuaded by the very nature of FOP that such a pass was appropriate for our family.  I know FOP comes across as an extreme and terrible disorder – and truly it is, but still…

We’ve now used the pass a few times.  The first time, I felt very odd about it.  That feeling has persisted, but it’s been bit less pronounced on each subsequent occasion.  I have to admit, though it’s been mentally hard to think of Miranda as having a disability, it does give me peace of mind not to have to traverse big parking lots with her.  That was, after all, the reason why I decided to try and obtain the pass in the first place.  And, this weekend we had our first snow…  As the winter season wears on, I’m sure we’ll appreciate the pass more and more, even though it means we attach THAT WORD to our little girl.

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