Posted by Karen
This weekend I went with my daughter Miranda to a Girl Guides’ event at the Southlands Riding Club/Farm in Vancouver. My title here has the word ”sleepover” in quotes because there wasn’t a whole lot of sleeping going on, ha ha.
I went with Miranda because she couldn’t go if I didn’t. Because of her Fibrodysplasia Ossificans Progressiva, my girl has safety risks which the other kids don’t have, and also, she needs help with dressing herself. You can’t just delegate that kind of stuff to one of the Guides’ leaders, so it’s off to these things I go…
Anyway, the sleepover was at a really nice place which boards horses, gives riding lessons and runs a bit of a farm with goats, pigs, chickens and organic produce. Miranda’s group, the Sparks, arrived there at 3 PM yesterday – 13 girls, 4 leaders and 2 mom volunteers – to stay overnight and do all kinds of farm/camp-out type stuff.
When I go to these events, I’m in a bit of a unique position – unlike the other adults there, I’m not jointly responsible for a bunch of girls, but rather I’m there to focus on Miranda and make sure she can participate safely. For instance, when all the girls were running around in the grassy area burning off energy yesterday afternoon, I kept a close eye on my girl to make sure she didn’t step in any holes, or slip in mud, or lose her balance and fall in the pond. Another thing I had to do was brace Miranda as she walked up a narrow ramp to approach a goat in a milking pen, and help her position her body so that she could reach the goat’s udders despite her rigid spine, fused shoulders and partially fused elbows. I also helped her roll out her bread dough this morning to make cinnamon buns (ditto the arm problems for this task).
As the parent of a girl with FOP, I’ve had to learn how to quietly and quickly assess any given situation and figure out how to get Miranda through it with minimum intrusiveness but maximum caution and also maximum participation. It’s a fine balance, sometimes, but it’s either that or Miranda doesn’t get to, you know, be a kid and have kid experiences – which would be really heartbreaking.
It was all a lot of fun. After meeting horses, milking goats and running around yesterday afternoon, the girls ate their brown-paper bagged suppers, did some crafts and enjoyed singing and smores at a campfire. At night, we all slept squished in close together in a loft in the barn, right above the horses. It was a late bedtime, and then an unfortunately early wake-up caused by a zealous cock-a-doodle doo-ing rooster ($#&^@ bird!!!).
This morning, after getting dressed and organized, the girls got to make and then eat some cinnamon buns which were baked in an outdoor stone oven over an open flame. Following breakfast, they met the pot-bellied pigs and 2 more goats, and got to brush and comb a very nice, placid pony. By 11 AM, it was time to go home, and Miranda’s dad Pete and brother Owen came and picked us up.
Right now I’m honestly a mess – I think I had maybe an hour of sleep last night, because I SERIOUSLY underestimated how cold it would be to sleep in a barn in May, and because of all the croaking frogs, peeing/neighing/bickering horses and all those girls tossing and turning (and that one girl who got homesick and started bawling in the middle of the night didn’t help either). The other adults said they had pretty much the same experience too… But anyway, I figure them’s just the breaks, and I’ll sleep it off tonight. Miranda had a lot of fun, and mades some good memories – which is what it’s all about.