Friends With FOP

Posted by Karen

So I missed doing a blog last weekend…  If anyone out there is reading this, and actually cares if I write, my apologies!  Last Sunday, as it happens, Pete and I took Miranda and Owen to Washington State to meet up with Suzanne, her kids and her mother.  The excuse for a get-together was so I could collect the PartyLite candles which I had ordered at Suzanne’s September FOP fundraising candle party.   Anyway, we picked Bellingham to meet, since it’s roughly halfway between our two cities and also Suzanne’s mom lives there.

We started out with lunch at Denny’s.  Suzanne and I agree that Denny’s is a great place to take children, because the kids’ meals are inexpensive and have good side-dish choices other than french fries (which is helpful because Miranda is the only kid on the planet who doesn’t like fries…  but I digress).  We met at noon, and I was introduced to Suzanne’s mom, Carol (that’s her name, right Suzanne??? my memory for names sucks, so sorry if I got it wrong).  She was a very nice lady, and interested to see the similarities and differences between the effects of Fibrodysplasia ossificans progressiva on Erin and Miranda.  We had a great conversation, which is always the case when our familes get together.  Incidentally, Pete noticed that the people at the table next to us were looking at us oddly when we were casually discussing the ages at which our girls’ elbows (left for Erin, right for Miranda) fused in a bent position…  But, when you live with FOP, you get used to people wondering what on earth you’re talking about.

Here are Erin and Miranda sitting side by side at Denny's.

After lunch, we said goodbye to Carol, and then did a bit of early Christmas shopping at my favourite American store, Target (to my favourite Target employee, Dee Whitmore – I so wish we had your store in Canada!).  We then took a little cruise through the Bellis Fair mall, and topped it off with some ice cream.  By that time, the kids were getting kind of antsy, and since it was a rare non-raining day in this area of the world, we went to a playground to let our bunch run around and play.

As usual, Miranda and Erin started off the day a bit shy toward each other, but before long they were chatting up a storm (also typical).  At the playground, I noticed they were playing quite an involved game of wrapping little sticks with leaves and calling them “babies”. 

Also as usual, we were a bit sad when our visit came to an end.  I really enjoy our meetings, because it’s so very nice to spend time with people who REALLY GET our lives with FOP.  I think the McCloskey and Friz familes are very, very lucky to live in such close proximity, especially given that our little girls are so close in age and having the same kinds of experiences. 

When we met up with Suzanne and family, we were also able to show off our new awareness-rasing FOP licence plate!  It happened that earlier this year, I had occasion to see the “CURE FOP” plate which adorns the minivan of the Henke family in Delaware, USA.  Inspired thereby, I looked into getting something similar for our vehicle.  As it turned out, I was irritated to learn that in British Columbia, you can only have a 6 digit plate, which means we couldn’t exactly duplicate the Henkes’ effort.  However, I came up with a pretty good alternative…  Sort of a “text” message version of the same thing:

Finally…  I have one other FOP-related thing to tell you about, which is that after a year of working with the Canada Revenue Agency to satisfy their concerns, we have now obtained registered charity status for the Canadian FOP Network!  The board members of the CFOPN are delighted with this result, since it means we can issue income tax deductible receipts to Canadian donors.  Hooray!  This is an important step, which we hope will enable us to raise more funds to help ”QRE FOP”.  If you’re interested in donating, check out our website at www.cfopn.org for more details.

And now…  time for some December fun!  As we enter the Christmas season, some words of wisdom from Miranda Friz, age almost 5: “Christmas isn’t just about getting presents.  It’s about being with your family and having fun AND getting presents.”