A new set of wheels

May 5th, 2018

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Nope, not the wheelchair van - it's the wheelchair itself, baby! FINALLY, at long last... It's been a really involved and complex process to get all the funding lined up for my daughter Miranda's super duper expensive, high tech power wheelchair, not to mention getting the chair ordered, delivered, adjusted, customized, and programmed. That odyssey, however, is now finished, and the power chair was delivered to our house this week. The first chance Miranda had to take the chair out and put it seriously through its paces was Friday night. [Explanatory point - Miranda can still walk short distances like around our house and ...

The saga of the vehicle

April 7th, 2018

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We're in the process of getting our first ever wheelchair-accessible vehicle. As with so much else concerning our daughter's fibrodysplasia ossificans progressiva (FOP), it's been a long drawn out process... It all started last summer when Miranda, then age 12, had a major FOP flare in her left leg. Prior to that point, we had known that a wheelchair-accessible vehicle was in our future, but it was kind of hazy, far off in the distance. And then, when Miranda's left hip and knee became entirely fused in 2017, it suddenly became much, MUCH harder to get our daughter in and out ...

To sleep, perchance to dream

March 24th, 2018

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Miranda's bed is the latest headache in our house. Honestly, this came as a big surprise to me. I knew that once my daughter Miranda developed hip restrictions due to fibrodysplasia ossificans progressiva, walking would be an issue and we'd have to get her a wheelchair. It never occurred to me though that Miranda would have trouble getting in and out of bed... (Maybe this is one of those "duh, what did you expect?" things, but there you have it.) Miranda currently has one good hip, one good ankle, and zero good knees (by "good" I mean with unrestricted movement). As it ...

A wheelchair is not confining

March 10th, 2018

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There's an expression often thrown about in the media, which is that such-and-such person is "confined to a wheelchair". Before my daughter was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP), I never thought much about this phrase. Now? Different ball game. So what's wrong with saying "confined to a wheelchair"? In a nutshell, it's inaccurate and comes from an ableist perspective. Look at it this way - if you're saying someone is "confined to a wheelchair", it sounds like you're suggesting that the wheelchair itself is somehow trapping the person. As in, if you are convicted of a crime and sent to ...

February and FOP at our house

February 17th, 2018

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I'm not going to lie - February at our house has been all about watching a certain South Korea-located international sporting event on TV (GO CANADA!!). But, you know, working around the Olympics, we've also been dealing with a few things related to fibrodysplasia ossificans progressiva (FOP). In fact, it's been kind of a busy month. The first thing was that several days ago, I was gearing up to attend the annual "in person" board meeting of the International FOP Association. This was to be my fourth one in as many years, but this year, for the first time, it was being ...

Yep, that’s high school there in the distance

February 3rd, 2018

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This past month we took the first steps to get Miranda ready for high school. Part of me knows she's absolutely ready for it, while another part says WHAT HAPPENED TO MY LITTLE CHILD?? Parenthood, it was ever thus... In my kids' school district, students do kindergarten through grade 7 at elementary school, and then grade 8 through 12 in secondary (high) school. Transitioning to high school is a big and kind of stressful thing for any kid, but there's lots more to think about when the student is dealing with fibrodysplasia ossificans progressiva (FOP). We want this to go as ...

Miranda is now 13 (a teenager, GASP)

January 20th, 2018

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This past week my daughter Miranda had her 13th birthday. It blows me away that she is a TEENAGER! I don't have any more little kids, for absolute reals. It's been my habit with this blog to mark Miranda's birthday each year by talking about the person Miranda has become. Why break with tradition? Especially since the 13th is something of a milestone. And so, I'd like now to tell you all about Miranda... Of course, since the focus of this blog is life with Fibrodysplasia Ossificans Progressiva (FOP), it makes sense to start there. Yes, Miranda does have to cope with ...

FOP in 2017, and hopes for 2018

December 31st, 2017

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Today is the last day of 2017. Phew - 2017, don't let the door hit you on the way out. OK, maybe I exaggerate a bit. In fact, in some ways this was a good year for fibrodysplasia ossificans progressiva (FOP). Looking on a broad scale, 2017 definitely had some positive developments. It's just that speaking more personally, this year was abysmally bad for my daughter. She isn't the only one either; a number of our friends with FOP were hit hard by the disease. Starting with the bad... We weren't far into January last year when Miranda told me, hesitatingly, that ...

San Francisco family conference

December 10th, 2017

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I spent last weekend in San Francisco! Well, really I was in a hotel the whole time, but the hotel was IN Frisco... Why was I there? It was for the IFOPA's 2017 Family Conference. This was a chance to learn the latest on Fibrodysplasia Ossificans Progressiva, and maybe more importantly, to connect with friends in the FOP community. The conference went from Friday evening through mid-Sunday. Sadly it was just me from my family; husband and kids stayed behind (we had just WAY too many expenses this year, what with moving and so forth, for us all to go). I flew ...

November at our house

November 26th, 2017

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Hi friends. Sorry about not posting the past couple of weeks; things got in the way. But anyway, here I am, and here's some recent stuff going on at our house... Last weekend was a bit of a momentous event. Specifically, Miranda went to a movie last Friday night - with only two friends and NO PARENTS in attendance. This is a typical activity for 12-year-olds in this day and age, so why not Miranda? Fibrodysplasia Ossificans Progressiva shouldn't rob you of all fun. It was actually pretty safe; I drove the girls to the theatre to see Wonder (incidentally, this ...
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