An experiment in letting go (a little bit)

Posted by Karen - July 1st, 2013

Posted by Karen

Yesterday we got back from 2 days at Girl Guide Camp.  Yes, I attended with Miranda, the way I did the past 2 years.  There are always a number of mom volunteers, so having one more along for the ride doesn’t cause anyone to blink an eyelash.  This year though, we handled it a bit differently than we did in the past…

This is Miranda’s third year in Girl Guides, and it’s necessary for me to attend camp with her.  The girls are supposed to be able to dress themselves and use the bathroom on their own, neither of which Miranda can do because of the arm and shoulder restrictions she has due to fibrodysplasia ossificans progressiva.  Not to mention, of course, the extra safety risks posed by dumb old, stupid old FOP.  In the first two years, I attended camp as Miranda’s attendant – this means I went everywhere with her group and did all the same activities which she did.  But this year, I wanted my daughter to be able to spread her wings a bit, and not have me hovering over her the way I have in the past.  At age 8, she is ready for (and craving) more independence.  And so, this year I went along to camp as a general parent volunteer.

There’s an important distinction.  Yes, I was there to help M as needed with her clothes, teethbrushing, etc, but during the day, I (wo)manned (LOL) an activity station at the camp, just like the other volunteers did, rather than tagging along with Miranda’s group at all times.  I also took part more in the general cooking/cleaning/organizing activities than I had in previous years, and I got my own temporary Brownie leader name – “Spicy Owl”, ha ha ha.  I arranged with our Brown Owl (the head Brownies leader) to get a Ranger, who is a Girl Guide age 15 to 17, to be with Miranda’s group and to be specially responsible for her safety and extra needs during the days’ activities.  I also had a walkie talkie, as did the Ranger, so we could communicate with each other in case of Miranda falling or some other problem.  In the end, I didn’t see Miranda at all on Saturday between breakfast and lunch, and between just after lunch and swimming at 3 PM (we all joined together for swimming and for the evening activities).

Miranda doing one of the camp activities, making huge bubbles.

So what did the girls do?  We arrived mid-afternoon Friday, and spent some time getting organized in our lodge/cabin and then roaming around and exploring things.  We made supper together, with the Brownies (ages 7 to 9) helping prepare food and clean-up.  That evening, we had smores around a campfire.  Aside – one leader and a couple of girls came within 6 feet of a black bear, which resulted in a slightly early end to campfire that night!  Anyway, the next day the girls did activities around the theme of “earning your fairy wings”, which meant that they played fairy themed games, went for a walk in the Enchanted Forest, did crafts, beachcombed (not particularly fairy-ish, but whatever), and had a “mermaid break” to swim at the beach.  On Saturday evening, each girl was presented with a pair of fairy wings, and they had a fairy dance ball.  On Sunday, we packed up and came home, exhausted from 2 nights of minimal sleep and lots and lots of fun.

The verdict?  It worked out JUST FINE.  In fact, it was smooth as silk; we had no hiccups at all.  Even the riskiest thing of all, beachcombing among the slippery, mossy rocks on the seashore and bending down to pick up crabs and seashells (yikes), went off without a hitch.  I am so pleased that Miranda was able to have this “freedom from mom”.

At the Fairy Ball!

PS – I hope you’ll make a donation to our summer FOP fundraiser, the Ride and Walk to Cure FOP, with all proceeds benefiting the Canadian FOP Network.  We’re going to do it on Sunday, July 28 in Calgary, Alberta.  If you’re in Calgary at the time, please join us as well!  More details to come…  If you’d like to donate to us, go to www.canadahelps.org, click on “Giving Pages” and type in either   Karen and Pete   or    Owen and Miranda.  Or, to send a cheque, post a reply to this post and I’ll contact you with my address.  Thanks!

2 Responses to “An experiment in letting go (a little bit)”

  1. Suzanne Hollywood says:

    Yay Miranda!

  2. Rory Otto says:

    Great update! I have been wondering how activities like this could work for FOP kids. Congrats to both of you on the new independence!



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