Friends With FOP

Posted by Karen Today Miranda is 7 years old.  7.  SEVEN.  I can't believe it!  Where did the time go, and how did my girl get so big? This whole weekend has been, as it should be, all about Miranda.  We kicked off the festivities on Friday evening by letting Miss M pick where we go for supper.  She went back and forth on the decision all day, and in the end, finally picked Boston Pizza.  That turned out to be a pretty good choice, because the waitress did her up a nice little brownie with whipped cream and gummy worms and the ...

Posted by Karen A week or so ago, a friend of mine posted on Facebook that she was doing that exercise where you think of a single word which best describes what you hope for/want to achieve this year.  I thought about that, and had an immediate response.  The word I thought of?  Confidence. I pondered this a bit, and realized that I can think of lots of ways in which confidence will assist in my professional and personal life, and it also fits very well in the context of dealing with my daughter Miranda's Fibrodysplasia Ossificans Progressiva.  In fact, the word "confidence" ...

Posted by Karen Ah, it's New Year's Day...  A day for looking ahead, and hoping for a great year to come.  On the downside, seasonal holidays are only 1 day longer - d'oh!  Our family has had a really fun break, and while we'll be refreshed and ready to get back to the regular routine, I'll be sad to see it end. One good bit, for example, was that from December 26 through 29, we had our son Owen, age 9, signed up for his first ever set of snowboard lessons at Cypress Mountain.  He went 4 days straight, from 8:30 AM to 3:30 ...

Posted by Karen Today is Christmas Day...  "It's the most - wonderful - ti-i-i-i-me of the year!"  Miranda, age 6, and her brother Owen, age 9, have ripped into their presents and are now having a great time playing with new treasures.  Later on today, we'll eat turkey, sweet potatos and all the fixings, and even more importantly, will love and enjoy each others' company.  Miranda will even play "Jingle Bells" for us on the piano.  ;-) Before I rejoin the festivities, I'm going to take a page today from my friend Yolaine's book, and say a very special and heartfelt Merry Christmas to ...

Posted by Karen I'M BAA-AACK!  And happy to be blogging again, after 3 weeks off to deal with a...  time-consuming project I had to do through work (end point was Friday Dec 16).  The early part of December was a tough slog for me, and now I'm ready to relax! However, the past month wasn't a complete washout in terms of enjoying the holiday spirit with my kids and husband - a couple of weeks ago, I took a break and we all went to the "Starlight Stars on Ice" kids' holiday party.  I've written about the Starlight Foundation before, as has my ...

Posted by Karen I recently made the acquaintance (via Internet, but still) of a woman whose beautiful little girl, Addi, was recently diagnosed with Fibrodysplasia Ossificans Progressiva.  While going through all the strong and difficult times that entails, my new friend, Shannon, also started a blog about her family's journey with FOP.  Recently, Shannon and her family had the chance to meet Dr. Kaplan, FOP doctor extraordinaire.  Today I want to share with you Shannon's blog about that meeting.  Check it out at: http://fopjourney.blogspot.com/2011_11_01_archive.html I'm so glad to see that Shannon found the meeting helpful and inspiring.  From my own perspective, one thing which is so great about Dr. ...

Posted by Karen Why can't getting a flu shot EVER be a simple thing for Miranda? This is the third year in a row that we've experienced drama and/or confusion and/or delays in getting a simple flu shot for Miss M.  I have to say, this is getting kind of old... [caption id="attachment_1507" align="alignnone" width="244" caption=""Waahhhh! I don't want a flu shot!""][/caption] Before I tell you this year's story, though, a bit of background.  Of course, nobody wants to get the flu - but for people who have Fibrodsyplasia Ossificans Progressiva (FOP), as my daughter Miranda does, there's an extra reason not to get ...

posted by Suzanne I should be sad today.  Why?  Because I have been kind of sad for awhile now. But I am not today. Of all days to feel happy, the beautiful fall weather here in Seattle has turned dark and rainy.  Instead of dry leaves littering our lawns and street, we now now have wet and soggy vegetation everywhere.  Erin loves to play outside with her friends and can't today because of the storm rolling through. Lately I find myself having more sad days than happy days.  This morning I realized that I have been sad for a very long time.  I have ...

Posted by Karen Age 18 months to 3 years is a really fun and exciting time in a child's life.  That's typically when a kid starts talking and building her or his language skills.  I have so many great memories of my son when he was that age...  I remember his funny pronunciations of some words, quirky expressions he had, the first things which caught his attention and the things he wanted to talk about.  Those are some of my favourite things to remember, and I have a lot of fun telling my kids stories about those times (my son, Owen, is now ...

Posted by Karen When my daughter Miranda was first diagnosed 4.5 years ago with Fibrodysplasia Ossificans Progressiva, one of the (very many) concerns I had was about her ability to enjoy life.  How could Miranda ever be a happy child with this horrible genetic monster hanging over her shoulder and affecting her every move?  In my extreme despair, I pictured a gloomy life, with Miranda being in constant pain and watching other children do everything she couldn't. Thank goodness the reality is nothing like I had feared. As I've blogged about many times before, Miranda is a happy, fun-loving girl who does lots of ...