Miranda is now 13 (a teenager, GASP)

Posted by Karen - January 20th, 2018

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…

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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. This past year was a particularly big exercise in that regard since Miranda spent much of 2017 coping with an aggressive and tenacious set of FOP flare-ups in her left leg. The FOP beast started with her knee, then pillaged it’s way down toward her ankle, and then up her thigh to her hip, leaving new pieces of bone behind in its wake. By the time it ended in early September Miranda had lost all movement in her left knee and much of the movement in her left hip. Her leg is also now cocked forward at an angle with the lower leg sticking almost straight out at the knee, meaning that to walk, she has to be somewhat bent forward. At some point during the summer, she also suffered a flare-up in her left cheek, which resulted in her jaw becoming partially fused – the gap between her upper and lower jaw is now less than a centimeter (though luckily, she can still eat most foods).

This FOP stuff is truly awful. It caused my girl a great deal of pain, discomfort, and anxiety through this past year. But as I have said so many times before, FOP isn’t all that Miranda’s about. In fact, it’s only a minor part of who she is. Miranda is a person of many interests and passions.

Here’s the bit I’m finding the most intriguing about my girl during the past year – she’s become very aware of the concept of “fandoms” (groups of people who share an interest in a particular cultural thing such as a TV show, book, or movie). I love that Miranda has enthusiastically embraced a number of fandoms, and not all are about TV or movies – a good many are about young adult books. All of this makes my nerd mom’s heart sing! In fact, Miranda recently discovered a local clothing store chain which caters to all things fandom-related, and we took a trip there last weekend to buy her some very cool T-shirts. She came away with a Deadpool shirt, two Marvel comic tees, a Star Wars top, and my personal favourite, a tank top with a big picture of artist Frida Kahlo on the front – this last one is truly too cool for words. As part of this enjoyment of fandom, Miranda has read a lot of books during the past year – I would say considerably more than she did in previous years. She is particularly into young adult dystopian science fiction, though reads a wide range of stuff.

Miranda has also enthusiastically embraced art during the past year. Last spring, her Girl Guides unit introduced her to an art studio (actually a chain of studios) which puts on workshops for average folk to create fun works of art. Since that time, Miranda became hooked and has done multiple workshops and summer camps through this studio, and has created a lot of really great stuff.

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IMG_0337I guess this has truly been the year of culture for Miranda, because she also joined her school’s grade 7 concert band. Miranda’s watched her brother play trumpet over the years, and when her opportunity to join band came along, she was determined to do it. I say “determined”, because it wasn’t the easiest thing to accomplish. Miranda was initially interested in playing a wind instrument, and we undertook an extensive search to find one that she could actually hold and could reach her mouth, given her shoulder and elbow limitations. We came close with a bass clarinet, but even that ultimately wouldn’t work. Finally, Miranda had to give up on the idea of a wind instrument and embrace percussion. At first she was somewhat disappointed, but pretty quickly she became fascinated with her snare drum and the enjoyment of being part of the band.

Miranda is also a youth on the edge of a big transition. In the city where we live, elementary school is grades kindergarten through 7, and high school is grades 8 through 12. In September, Miranda will move from her modest little 240 pupil primary school to a secondary school with over 1,200 students. In fact, we have already gotten the process started of making the high school aware of Miranda and her particular physical needs. It’s both exhilarating and terrifying at the same time, and I’m grateful I’ve done this process once already (Miranda’s brother Owen is in grade 10). On an FOP-related note, we are also hoping to become more deeply involved in an FOP drug trial – also exhilarating and terrifying.

And so begins Miranda’s 14th year. Looking for more of the good stuff, and maybe (mercifully) a year with little or no FOP progression. I hope you will wish her luck.

One Response to “Miranda is now 13 (a teenager, GASP)”

  1. Heidi Hunter says:

    I really appreciate the opportunity, through your blog, to see Miranda’s new developments/experiences as she becomes the young woman she is destined to be. Kindergarten seems so long ago.



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