Friends With FOP

Earlier this week, Miranda came home from school with a notice in her backpack for a mother-daughter "red carpet makeover".  The note explained that the Variety Club children's charity was to be hosting this event on Saturday, June 26 and was to be for special needs girls and their mothers.  As soon as I saw it, Miranda got very excited and started jumping up and down, saying that she REALLY REALLY WANTS TO GO!!  How could I deny her this chance?  ;-) We hadn't yet had any contact with the Variety Club, but I understand that they raise funds to provide families who have kids with ...

I cannot believe we are almost done with this school year.  Not only do I not have to spend $290 a month for full time kindergarten, but Erin will be graduating this Tuesday!  I am so happy for both!   Erin got through the school year just as I expected, all in one piece. Yes, we had a few falls and bumps but nothing serious to write home about. For the month of June, there were many in-classroom volunteer opportunities.  Alan and I always get into the classroom but now we have hit some road blocks.  With Alan's new job and my ...

Last weekend I didn't get a chance to blog...  Because I took Miranda to her first ever Girl Guides Camp! This was the first year Miranda has been eligible to join Guides.  She did her first year of Sparks (kindergarten and grade 1 girls).  I chose Sparks for Miranda because I figured she'd have fun, and that it wouldn't involve TOO much difficult physical activity.  This was true for most of the year; they did a lot of crafts and singing songs.  Camp, though, was more of a challenge. Given Miranda's Fibrodysplasia Ossificans Progressiva, she couldn't go to camp on her own ...

Summer's great, right?  Who doesn't love summer; the warm weather, trees and flowers, fun outdoors...  And, generally speaking, summer is a great time to be a kid.  My son Owen, who is 9 years old, spends every moment he can outside playing street hockey, hide and seek and riding his bike around our townhouse complex with the other local kids. My daughter Miranda, who is 6, loves to do those things too - okay, maybe not the street hockey, but for sure the other stuff.  However, due to her Fibrodysplasia Ossificans Progressiva and the changes it's wrought on her body, Miranda ...

In 2010, a gal by the name of Vanessa Herce did an amazing fundraiser with all proceeds going to the Canadian FOP Network.  Vanessa, whose sister Valerie has Fibrodysplasia Ossificans Progressiva, rode her bicycle along with a team of other riders from Toronto to Niagara Falls, Canada.  In so doing, Vanessa raised over $30,000.00 for the FOP cause! I'm a member of the board of the Canadian FOP Network, and we were honoured that Vanessa did this incredible event and donated the funds to the CFOPN.  We were even more delighted when Vanessa agreed to let the CFOPN partner with her ...

Posted by Karen As you may know, we recently got a new, specialized bike (actually a tricycle) for our Miranda.  She can't ride a regular bike because her Fibrodysplasia Ossificans Progressiva has resulted in extra bone which significantly limits her shoulder and elbow movement, and she can't reach the bike handles (plus a regular bike is a risk for FOP flare-ups if Miss M falls off). When we first set out to get the bike, I had modest goals in mind.  I just wanted Miranda to have an opportunity for some exercise, because there aren't a lot of safe options open to her - ...

Every Saturday we take Erin to play Challenger Baseball with others who are physically challenged. On the way there we had to stop to do a few errands.  We pull into the parking area, and there is a car in front of us, slowly creeping along.  We see there is only one handicapped parking spot available, and this small car blocking us pulls into it. We had to park further away, but I kept an eye on the car who took our spot.  The young girl in the car was going through her purse, and seriously took a good five minutes before ...

Posted by Karen I have a really fantastic employer.  The firm of Stephens and Holman, Personal Injury Lawyers, has been very supportive of our family on our journey with Fibrodysplasia Ossificans Progressiva.   When Miranda was first diagnosed with FOP in April of 2007, at age 2,  my boss, Simon Holman, listened carefully and considered my plan to radically alter my work situation.  I pitched an arrangement in which I would work mostly from home (close to where Miranda would be cared for during the day, in case of emergency) and on a "permanent contract" basis, instead of as an employee, with reduced hours to ...

La Nina has been kicking butt all over the country and Seattle has not be left out in the cold. The last La Nina season we had record snow accumulations. This time around it’s been extra wet. Luckily we have had a few beautiful, sunny days. Those days the neighborhood is jumping with all the kids playing outside. Over the winter months several new families with kids moved in. For the very first time, I have allowed Erin to out to play unsupervised. In the past we have propped the screen door so she could come in and out and ...

Posted by Karen Happy Mother's Day to all the moms out there!  As for me, I got some nice gifts today...  Miranda hurried me out of bed and downstairs, where she and her brother Owen were excited to give me a new fuzzy bathrobe, a box of dark chocolate creams, a book and a little pot with a seed planted in it.  Very cute, and delightful (thanks guys!). Seeing as how it IS Mother's Day, that got me thinking about what it's like to be mothering a child with Fibrodysplasia Ossificans Progressiva.  This is definitely not something I ever expected to do, ...