Miranda is 12…

Posted by Karen - January 15th, 2017

Today is Miranda’s “hape borfday”. This was her creative spelling when, at age 4, she was determined to learn to read and write and sounded out “happy birthday” for a birthday picture she drew for me. Yes, Miranda was a smarty pants both then and now. ;-)

As has been my habit, I’m going to use this opportunity to tell you about my dearest girl. Who is Miranda at age 12?

First, since this is a blog about our life with fibrodysplasia ossificans progressiva, the FOP stuff. Luckily, Miranda’s FOP has been pretty quiet for a few years now. Her last flare-up was about 10 months ago when she had a swelling under her chin (it left a bit of jaw restriction). Before that, the last one was a year prior when she had a flare on her upper back; that one was in a spot where she had had flares before, so didn’t change her movement. And before that, it was when she broke her shin bone at age 9. Looking over this pattern, it’s been roughly one flare a year for about 4 to 5 years now. I’d rather she had no flare-ups, but I’ll take it…

It’s a good thing Miranda’s recent flares have been infrequent, because she was hit HARD as a small girl. By age 3, both shoulders were entirely fused, her back and neck were rigid, and both elbows were mostly locked. And then, by age 9, she had developed limitations in her right knee and left ankle, the latter issue requiring her to walk on the ball of her left foot because she could no longer lower her heel to the floor. Miranda’s been living with the fallout of those restrictions ever since. I note also that as she grows older, and taller, she’s had frequent episodes of general upper back pain – not from new flares, but due to pressures on her spine from FOP bone and gravity – as well as tension headaches (all of this stuff is usually at the end of the day).

But, as I’ve said time and time again on this blog, Miranda is NOT just about her FOP. FOP is nothing but an aspect of her life, and one that she does her best to ignore as much as she can. Looking past the FOP, here is Miranda at age 12:

– She is mostly a happy girl. She loves talking to people, and is renowned in our family for chatting all kinds of folks up and learning things about them in very short order. When in public, Miranda continues to carry on with her habit of suddenly complimenting people out of the blue – for instance, in an elevator with a lone person, she’ll say, “I like your earrings. They’re really pretty.” (This startles people, but in a good way.)

– Miranda and her older brother still get along very well. Despite having access to computers, iPads and iPhones up the ying yang, the end of the day often finds Miranda and Owen (who is 15 in 2 weeks) playing cards or a board game, just the two of them, at the dining room table.


– Miranda is still a picky eater. I despair over her dismal vegetable consumption. At the same time, I confess to having been an utter failure as a parent, in that I have inculcated in her a love of Starbucks frappuccinos (she drinks the non-coffee variety, at least).

– You want to talk about a good memory? Miranda continues to have a phenomenal memory. Fortunately, she has also developed, all on her own, top-notch study habits. Without any prompting, she developed her own school exam study practice of producing flash cards which she reviews several times a day for a few days before an exam. Between her great memory and study efforts, this has paid off for her in very good results in grade 6. (If this sounds like bragging, I am guilty as charged.)

– Miranda has recently figured out a way to sit and hold our family’s cat, Gally. She was frustrated for a long time in that she couldn’t just randomly pick up and tote the cat around the way her brother does; this is of course because of her very limited arm movement. Miranda learned, however, that if she’s sitting in a chair, she can get someone else to pick Gally up and put him in her lap butt first, and then she holds him around his belly. She was DELIGHTED to find out that he will sometimes sit with her like that for quite a while.


– Miranda loves sketching, and we recently started her in a Saturday morning art class to learn more technique. In fact, she had the first one yesterday, and said it looks so far like a good class. (Though I note, with disapproval, that the City of Burnaby made no effort to make sure the location is accessible – it’s in a building with many stairs and no elevator.)

– MWAH HA HA (evil laugh), I have turned Miranda into a Star Trek fan! She and I have been watching all the old Star Trek TNG, DS9, and Voyager episodes which are now available on Netflix. It’s our “thing” to do together. As for current pop culture, Miranda’s faves are Maroon 5, Bruno Mars, The Big Bang Theory, The Hunger Games (both books and movies), and the Twilight series (both books and movies).

So there she is, Miranda at age 12. She is a wonderful girl, and I hope today will be a very happy birthday for her.

I would make life easier for her, if I could.

One of my fave photos of Miranda from 2016.


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