The best night of her life

Posted by Karen - February 24th, 2019

There are many things a person who has fibrodysplasia ossificans progressiva can do for recreation. My daughter Miranda, age 14, especially enjoys reading. Yes, she’s glued to her phone like any other teenager, but she’ll happily put the phone down long enough to get deeply into a book. Further, when she finds a book she especially likes, she uses her allowance money to buy her own copy. She has a bookshelf in her bedroom containing all her much-loved books, and every so often moves the books around according to some scheme of which only she seems to be aware…

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As part of Miranda’s enjoyment of books, she follows a number of authors on Instagram (having abandoned Facebook as suitable only for boring adults, lol). Recently, she discovered that one of her current favourites is doing a book tour and was going to be appearing in Vancouver to talk about her book. With much excitement Miranda bought a ticket to the event, which was to occur on Thursday, February 21. As the big day approached, Miranda reminded me numerous times that we had to be IN THE CAR and leaving to drive downtown by 5:30 PM to get to the venue in plenty of time for the 7 PM event. Fine, fine, I replied.

Now, it happens that at about the same time, I had to schedule our monthly visit with a nurse in connection with the FOP drug trial in which Miranda is participating. Due to a number of factors which I won’t bore you with, this time around we had only a narrow window of time in which to get the visit accomplished. In fact, the only day we had available was late afternoon on, you guessed it, February 21. I told the nurse we could do it that day, but would absolutely have to be finished by no later than 5:30. I was assured that this would be no problem at all, and we set the appointment for 5 PM. As we got close to 5 PM, however, the nurse called and advised that she’d be “a little late” due to heavy traffic. That “little late” turned into quite late, and by 5:30 Miranda was freaking out and issuing all sorts of ultimatums that we HAD to leave within the next 5 minutes, and if we didn’t, she would never forgive me, EVER in her entire life! (Because this was all my fault, of course.) Anyway, the nurse finally made it there by 5:40. We did the things we needed to do in about 3 minutes flat, apologized to the nurse for our hasty departure, and whipped out the door. Phew.

The next thing, of course, was that we were still in rush hour, so traffic was heavy. Miranda was seriously panicking that she was going to miss the event, and was heaping many curses upon my head and wishing me a cruel and painful death. As such, I am extremely glad to say that we pulled into the parking lot at about 3 minutes to 7 PM, and Miranda was able to hurry into the venue. A nice concierge then took her in hand and directed her to the wheelchair seating area. As for me? I went to the Starbucks next door, ordered a big mocha frappuccino, and promptly collapsed! Gah.

When the event was over, around 8:15, I returned to pick up Miranda. She was, in a word, GLOWING. She was absolutely blissfully happy, and told me that this had been the best night of her life, hands down. It turned out that she had not been late for the book presentation – which began at a fashionable 10 minutes late – and was seated quite near the stage. And, when it came time for questions afterward, Miranda was one of the lucky few given the chance to ask the author a question, and even, TA DA, to have her photo taken with her. Who was this amazing writer? None other than the fabulous Angie Thomas, “young adult” book genre writer extraordinaire, and the author of “The Hate U Give” – recently made into a popular movie – and a new book, “On the Come Up”. Miranda also got a personally signed copy of the new book. Angie Thomas was all Miranda could talk about, the whole way home. Can you say star struck?

Miranda with the great Angie Thomas

Miranda with the great Angie Thomas

I must say, am super relieved I managed to get Miranda to this book presentation. She’ll remember it her whole life.

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On a completely separate topic – February 28, 2019 is International Rare Disease Day! This is a day to give thought to the 7000+ rare diseases in the world, and the fact that about 1 in 12 people suffers from a rare disease such as Miranda’s FOP. In Vancouver, where my family lives, the Rare Disease Foundation will be putting on its annual Rare Disease Day activity this Thursday, and similar events are ongoing all over the world. To learn more about Rare Disease Day, go to¬†https://www.rarediseaseday.org/events/world.

 

One Response to “The best night of her life”

  1. Lesley-Ann Reed says:

    That is so cool! I just read The Hate You Give a month ago after my 14 year old finished it and we both really enjoyed it. It is so great when authors get the rock star treatment from their fans. Good thing you managed to beat rush hour traffic!



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