Posted by Karen

My kids love their grandparents…  Love love love ‘em.  Lucky for Miranda and her brother Owen, they have a full set of four.

Grandparents can be a terrific part of any child’s life.  However, I think that when the child has a disorder like Fibrodysplasia Ossificans Progressiva, having gramma and gramps around is all the more meaningful.  From the parents’ point of view, having one’s own parents for support is invaluable, for both emotional boostering and also practical help.  From the point of view of the child with FOP, a grandparent can be a person who provides some silly fun, and a distraction from every day limitations.  That means alot to our family, but I know we’re not the only ones…  I’m “Facebook Friends” with Erin Kate’s grandma and another FOP child’s grandma from overseas, and I know of others as well who are much involved in their grandchildren’s lives.

In our case, Miranda has two grandparents who live here in Vancouver, and two who live a day’s drive away, in Calgary.  The Vancouver grandparents are Farmor (Danish for grandma, as this lovely lady immigrated here from Denmark as a young adult) and Grandpa Carl.  Lucky Miranda gets to spend every Monday with Farmor and Grandpa while my husband and I are working.  Farmor is very creative, and gets Miranda involved in all sorts of interesting arts and crafts (which is great, since neither Pete nor I are that way).  Farmor and Grandpa Carl also like to take Miranda for walks in the woods at Pacific Spirit Park and tell her all about the birds, animals and plants they see.   Miranda definitely enjoys her days with her Vancouver grandparents…  No gripes ever about going to their house!

Miranda and her brother get to see their other grandparents, my parents, less often because they live in Calgary.  However, when they do see them, they really make the most of it.  The Calgary set are Baba (Ukrainian for grandma, in honour of my mom’s roots) and Grandpa Mal.  We spend a week each summer at their house, and typically they come out here together for a few days in the late spring or early fall, plus each will usually come out on his or her own for a few days once a year.  Baba and Grandpa Mal are great for fun and laughs whenever we get together.  Also, Grandpa Mal has dived head first into the FOP community, and is now on the board of directors of the International FOP Association.  That’s really fab as far as we’re concerned, and some other time I’ll probably tell you some more detail about stuff he’s done supporting us on our journey with FOP.

Right now, though, I’m going to tell you about Baba, who’s visiting us for an extended long weekend.  Years ago, my mom was a social worker.  She really valued her work with the disadvantaged in society.  She left her job when she had kids, but she raised my sister and brother and me to be aware of issues around poverty, race and (dis)ability.  My mom is a deeply compassionate and caring person who has always tried to advocate for  people who face challenges in life.  For example, she has volunteered at the Calgary Food Bank for many years, and she values this work.  When our Miranda was diagnosed with FOP almost 3 years ago, my mom was put to the test - would she withdraw in fear, or step up to the plate and be all that she could be to her special granddaughter? 

It should be no surprise that Miranda’s Baba has been all we could have hoped for.  She was initially just as upset about FOP as we were, but pretty quickly she put her caring credentials where her mouth is and tried to learn as much as she could about FOP.  Baba has been interested in finding out about deveopments in FOP research, and she and my dad have been instrumental in spreading the word about fundraising far and wide and using their extensive connections (trivia - my mom has 13 siblings!) to raise money for the cause.  Additionally, Baba has tried to get to know as many people in the FOP community as she can through the medium of Facebook.  It really has been invaluable for us to know that she, as well as Grandpa Mal, Farmor and Grandpa Carl, are so positive about being involved in our journey with FOP. 

On a more down-to-earth level, Baba delights in playing with Miranda and encouraging her to have lots of fun doing activities she enjoys, such as boardgames and making up stories and scenarios about her animal toys.  This time around, Miranda and I picked up Baba at the airport on Friday (Owen was at floor hockey), and the kids have been having a blast with her ever since.  Yesterday we had a wonderful day - it was sunny and warm, and we spent almost the whole day outside.  In the morning, we took the kids for a run around at a local park, where we all had fun playing hide and seek.  In the afternoon, my mom and I took the kids to Maplewood Farm in North Vancouver, where kids get to walk around and see farm animals and even pet some of them (rabbits and goats).  Then, last night Baba treated us all to dinner at Fat Burger (yum yum).  After dinner and back at our house, Baba sat patiently in her chair while Miranda and Owen covered her from head to toe in plastic animals…

(a picture is worth a thousand words, ha ha)

Baba will be here until Tuesday this coming week, at which point we’ll be sad to say goodbye.  Miranda is lucky to have such a wonderful grandmother.