A word for 2017

Posted by Karen - January 1st, 2017

Happy New Year, friends! Today is January 1, 2017, and my family members are starting to lazily wake up after a night of watching Star Wars movies (in tribute to the late, great Carrie Fisher). Later on, we’ll be enjoying one last big holiday meal with my kids’ grandmother. As for right now – I’m going to talk about my word for the new year… Drumroll please: ¬†2017 for me shall be about¬†overcoming¬†(or at least striving in that direction).

OK, this wasn't last night, but this pic of Miranda and me was taken at a holiday party.

OK, this wasn’t last night, but this pic of Miranda and me was taken at a holiday party.

As far as fibrodysplasia ossificans progressiva (FOP) is concerned, overcoming is a no-brainer in the big picture. Obviously, my greatest wish is for 2017 to result in scientific breakthroughs which conquer the FOP beast. If my daughter and others with FOP could be assured of a future without further flare-ups (or with flares that quickly disappear before doing harm), that would be an incredible and fantastic thing. And, given how many applied research concepts are being pursued right now, overcoming FOP in 2017 is not impossible… Of course, this is largely out of my control as I’m not a scientist myself – but I can continue to do what I’ve done in the past, which is to raise funds and awareness of FOP and help drive research along.

On a smaller scale, there are other things in connection with FOP that I’d like to overcome or see others do so. First and foremost, I’d like to see our friend Erin (whose mom, Suzanne, shares this site with me) overcome her issues in connection with nutrition. Erin has a hard time absorbing nutrients and gaining weight, and has some other symptoms in connection with this problem which made 2016 a real challenge. All of this is probably caused in some way by her FOP, or at least is significantly complicated by it. Anyway, I’m hoping 2017 will be the time when this issue gets thoroughly sorted out, and Erin’s family can put this behind them.

Second, a focus on my daughter Miranda… FOP tends to complicate other health considerations (like everyone else, people with FOP do suffer from everyday ailments which have to be dealt with). Without going into details, let’s just say that I’d like Miranda to overcome a few bits and pieces of things she’s experiencing. This is something I can work on with her, so here I can be an agent for overcoming! Hooray for being able to take action. :)

Moving right along, a further thing which is going to take MAJOR work to overcome is the process of identifying, buying, and moving into a new home. Honestly, this makes me dizzy just thinking about it, but… It has to be done. Our current residence is a townhouse with 3 floors, 2 sets of stairs, and all bathrooms and bedrooms on floors other than the main floor. In short, our house sucketh mightily for people with mobility challenges. Miranda already has FOP bone in both knees and her left ankle, and going up and down all of these stairs is getting to be an increasing challenge. I shudder to think about what things will be like if she suffers further flare-ups and needs to start using a wheelchair on a regular basis. (Aside – the housing market in Vancouver is one of the most expensive in the whole world – I think it’s number 2 or 3 globally – which definitely doesn’t help. Oy.) Anyway, given the crappiness of our house for our daughter’s needs, my husband and I have decided that 2017 is the year in which we move to a more suitable home. By the end of this year, we expect to have overcome this problem and be settled in elsewhere.

Right now I’m feeling moderately optimistic about all of the above… It may be just the good feeling in the air surrounding a new year, but meh. I’ll take it! Here’s wishing you good luck in overcoming your own challenges, whatever they may be.

Miranda with holiday unicorn blanket - unicorns are good luck, right??

Miranda with holiday unicorn blanket – unicorns are good luck, right??

One Response to “A word for 2017”

  1. Linda Hoodikoff says:

    Hi, Karen,
    My Lions club is having a potato feed in Langley on Feb 25 and half of the proceeds are being donated to F O P.
    If you and Miranda would like to join in, please let me know. I will set tickets aside for you. If you have any questions feel free to email or phone me @ 604-583-6272
    Hope to hear from you,
    Linda



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