Friends With FOP

On the weekend, Pete and I took our kids to the Vancouver Aquarium, and after that for a picnic lunch and fun at a playground in Stanley Park. It was a cold but sunny day, and Miranda had a great time running around (clutching her squeaky beluga toy the whole time). Her cheeks got nice and rosy, and she got some good exercise.

However… Once again my FOP mom stress-o-meter kicked into high gear. Why, oh why, did Miranda have to think it was so much fun to climb up on the big boulders surrounding the playground? And why did she want to walk along the adjacent stone ledge?? She had a grand old time, but my heart was in my mouth. In fact, Miranda actually did fall off the ledge once, but she landed on her legs in a pile of playground gravel and wasn’t upset at all, just got up and kept going.

When your child has Fibrodysplasia Ossificans Progressiva, it can be very challenging to let go and relax when your child goes outside to play. In fact, the younger your child is, the harder it is to chill out about it, and in fact you actually can’t – you have to be on guard to make sure your little one doesn’t take some kind of a spill which will provoke an FOP flare-up.

Some places outdoors are better than others. My favourite kind of an outdoor place to take Miranda is to a park with even terrain and lots of nice, soft grass. In that environment, I can supervise Miss M but don’t have to hover, and I don’t worry as much.

The worst type of place to take Miranda is somewhere with not much grass and lots of hard concrete. Unfortunately for us, that describes our front yard. It wouldn’t be so bad if no-one ever played in our yard. However, when the weather is nice, all the many young kids on our street come out to play in our little cul-de-sac, and of course Miranda wants to be part of it all. So, when everybody’s out there, I take Miranda out as well. All the other kids, including Miranda’s brother Owen, run around and play on our quiet street which is between two rows of townhouses (we put out warning signs on the entry to our street to warn any cars turning in that there are kids at play). When Miranda’s out there, however, I make sure she stays put on our postage stamp of a front lawn. I put a blanket or sleeping bag on the lawn, grab a box of toys, and plunk her down to play. I just can’t bring myself to let her take her chances running about on that hard, FOP-unfriendly street. If she wants to go out on the street, I go with her and she walks and holds my hand. I feel bad about this, but I’ve seen my dear girl fall at the slightest provocation and go crashing down onto the ground or floor on too many occasions, so I just can’t let her go yet. Maybe when she’s another year older…

Last summer, we had a nice princess tricycle which Miranda liked to ride out front. That was OK, because it has a safety belt and also parent push-handles on the rear. She really enjoyed riding it, and I felt good about it because she stayed safely in place and I was right there to help her out if anything were to happen (and it never did). However, we tried it out this past weekend when we got home from the park, and I was disappointed to see that Miranda has grown just a little too big for it. I think this year we’ll have to look into getting her a “banana peel” trike – it’s a 3 wheeler with a hammock-like canvas seat which is close to the ground, and the rider steers with her feet. I know that other kids with FOP have enjoyed bike-riding using this fun and safe(r) item.

Despite my fears about taking Miranda outside, I just have to do it. Much as I’d like to keep her always completely safe, life won’t be fun for her unless she takes some chances and experiences the world. I have to learn, gradually, how to let her do that in a way which won’t put her too much at risk. It’s been getting easier as Miranda grows older, but it’s an evolving process…