A birthday, and who she is now

Posted by Karen - January 17th, 2016

Haylp, have a big 11 year old girl at my house!

Miranda’s birthday was this past Friday, and I have to say, I’m very much enjoying this “big-girl” phase. My daughter is really a lot of fun right now. She is one great kid.

Every year around Miranda’s birthday, I like to do a “focus on Miranda” type of blog post. This is both because I like to brag about my terrific girl (ha ha), but also, to be serious for a moment, because I think it’s invaluable for people to realize that there is an actual, true, amazing person connected to her diagnosis of fibrodysplasia ossificans progressiva.

I remember back when Miranda was in the early days of her diagnosis, I seriously could NOT get enough of learning about other people with FOP and how they live their day-to-day lives and the types of accomplishments they had. It made me feel so much better to realize that FOP did not mean the end of the road, and instead was maybe something people live with and manage to work around. And so, by telling people about Miranda, I hope that maybe someone who has a little one with FOP will read this and also see that people can do well, even with FOP. For everyone else out there, I hope you’ll read my post about Miranda and think, “I have to keep donating to FOP charities, because I want this girl to not have to worry about this stupid disease.” (my ulterior motive, mwah ha ha!)

So, in no particular order, here’s what I’d like you to know about Miranda at age 11…

– The divine Miss M is a real style maven. She has very definite ideas about her own fashion sense and what sort of a look she wants to put forth. For one thing, she loves to have bright colour streaks in her hair, especially in blue. She had this done for the first time in 2015, and now, several months later, she asked for renewed streaks in connection with her birthday. [Aside – these streaks are awesome in terms of getting people to focus on things other than FOP bits.] Miranda is also very, VERY much into Converse high top basketball shoes. She’s been asking for them in different colours for various birthdays, holidays, etc, and now has amassed quite a little collection. Just now, for her birthday, she asked for and received a pair of classic red ones. [Second aside – apart from style, these shoes are great in the sense that they don’t pull off her awkwardly raised left heel, thank you very much stupid-2014-FOP-ankle-flare.]

The birthday girl with her newly blue-streaked hair.

The birthday girl with her newly blue-streaked hair.

– Miranda is a cautious and wily money saver. This is a kid who most certainly does not just spend her allowance/chores money on random plastic crap that she finds in shopping malls. Miranda plans for things she wants to buy – often Apple computer related stuff – and then saves money in her bank account for that purpose. And, she never caves before she’s reached her goal – she always sticks it out right to the end, and always knows exactly how much she has and how much more she needs. I’ve told M a number of times that she should seriously consider being a financial planner or accountant when she grows up.

– My girl really enjoys discussing the plots of movies, books and TV shows, and speculating on the motives which drive the various characters. I find this quite a bit of fun, as I enjoy doing this too. Recently she’s gotten into James Bond movies, which I think is kind of interesting, as I those are pretty complex for an 11 year old kid to wrap her mind around.

– This is one stubborn kid. Once she makes up her mind about something, it takes an awful lot to budge Miranda. This is sometimes good, and sometimes not good… One example of NOT good, is that she has developed what I think is an unreasonable prejudice against reading the Harry Potter books. Harry Potter! This child will NOT READ HARRY POTTER! I haven’t even been successful at bribing her to do it – see: cautious and wily money saver, above – so this really demonstrates her obstinacy on this point. I am a big fantasy/supernatural/science fiction type geek myself, so this pains me to no end.

– Miranda has definitely inherited a passion of mine – the love of Starbucks drinks. I pour a ridiculous amount of money into Starbucks coffers, and Miranda now loves doing that too. No, she doesn’t drink coffee, but there are no shortage of other yummy drinks to tempt an 11 year old. (The struggle is real.) This summer, Miranda and a friend of hers were in a day camp together, and when I picked them up at the end of one day, they wheedled me into taking them to a Starbucks nearby. Miranda presented the idea in such a way as to suggest, though not outrightly state, that each girl had her own money to spend on a drink. However, upon arrival, it became clear that she expected me to pay for both drinks! Quite the scammer, that one.

– Miranda knows everything about everybody. Anyone out there familiar with Lord Varys from the Game of Thrones TV show/books? Miranda is an 11 year old Lord Varys. She manages to wheedle all kinds of information out of people. Be careful what you say when you have a conversation with her, as she will definitely be hiding what she learns away for future reference (not necessarily in a sinister way, but… Miranda’s philosophy is that you just never know when some little factoid could come in handy).

Ta da, this is Miranda at age 11. What an incredible kid.

Showing off the stylin' shoes.

Showing off the stylin’ shoes.

 

PS1 – If you or your child has FOP and you want to learn about various ways to become involved in FOP research, please go to the IFOPA website at www.ifopa.org

PS2 – Children with FOP who are age 6 through 14 are now eligible to take part in the current Phase 2 testing of the potential FOP medication Palovarotene. Children in this age range with a new (less than a week old) FOP flare-up on an arm, leg, shoulder or hip, or on the chest or abdomen, may be able to participate. This does require some short-term travel to one of the test sites in the USA or Europe, but all travel expenses are paid by Clementia Pharmaceuticals. For more information, go to http://www.ifopa.org/drug-development/clementia-palovarotene-clinical-trial.html?utm_source=Travel+Assistance+for+Clementia+Clinical+Trial+Participants+-+pointer+%239&utm_campaign=Clementia+Travel+Assistance+%239+pointer&utm_medium=email

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