Last weekend my good friend Suzanne hosted an event at her house to raise money for the International Fibrodysplasia Ossificans Progressiva Association (IFOPA). I figured this would be a good opportunity for a visit with the McCloskeys, so I packed up the kids and we drove down to Woodinville, Washington for the weekend (just us 3, since my husband Pete was out of town on business).
Miranda and I picked up Owen from school at lunchtime on Friday, and headed off. Lucky for us, it was a GORGEOUS sunny day – perfect for driving. The drive down south was easy and uneventful, though it felt a bit odd (and sad) having to show our passports at the US border… Anyway, we arrived in town late afternoon, and hung out for a while with Suzanne, her own kids and a handful of kids she looks after in her daycare.
Suzanne’s event was a party to sell candles through the Party-Lite company. Suzanne’s friend Robyn is a sales consultant with Party-Lite, and she graciously agreed to donate her commission for the evening’s sales to the IFOPA.
The weather remained perfect the evening of the party, so Suzanne held it in her driveway. This turned out to be a very good thing, because our girls and boys were able to play outside and get some fresh air. Fortunately, our children all get along very well. My son Owen, who is almost 8, really enjoys hanging out with Suzanne’s boys Brennan (age 11) and Larkin (age 9), and they ran around chasing eachother around the block. Miranda and Erin, who are both 4, had a terrific time filling up Erin’s two toy shopping carts with toys, and then bringing each load one by one into the yard and dumping it out. Those two little girls did that again, and again, and again…
The fundraiser itself was small, but very pleasant, and based on the interest in the products for sale, I know that a tidy sum was raised for donation to our cause. The products really were beautiful – everything from fragrant scented candles to holiday themed items to delicately carved candle holders. It really was very good of Robyn to donate her commision from the Party-Lite sale to our cause, and I’d like to give her a warm thanks.
During that evening, the people who attended the party had the opportunity to meet three people with FOP. In addition to Miranda and Erin, Sarah Steele also attended the event. Fortunately, Sarah lives close by. This was my first time meeting Sarah, and I’m really glad she and her mother were able to attend. I find it interesting and valuable to meet adult members of the FOP community.
Sarah also brought some of her artwork along. I don’t know what you call this particular craft, but it involves weaving coloured plastic “threads” through a cup-shaped plastic mesh frame to create a nicely decorated container, suitable for holding anything from small toys (as Miranda does with hers) to pens and pencils. Sarah offered her containers for sale as well, and there was considerable interest and a number of purchases.
Miranda, Owen and I spent the night at the McCloskeys’ house. The boys had a campout in the playroom together, which they thought was a blast, while Miranda and I slept in Erin’s bedroom and she slept with her parents. The next day we went shopping in the morning (cross-border shopping, ooooh – a chance to go to my favourite store, Target!!), and then in the afternoon, we went to a very nice birthday party/outdoor barbecue supper for one of Erin’s little pals, a boy named Riley who was turning 4.
The weather continued to hold out that Saturday, as it was another perfect day, so good for the birthday. We did all the usual fun party stuff – birthday cake, hamburgers and hotdogs, lots of running around and playing for the kids in Riley’s family’s awesome big grass-covered yard (extra good for small kids with FOP, who need the softer padding).
A poignant moment during that evening occured while I was playing “Simon Says” with Miranda, Erin and the birthday boy. Riley was Simon, and he said to put your hands on top of your head. Of course, both Erin and Miranda have extra bone formation in their shoulders, with limited movement, so neither girl was able to do this – the best Erin could do was touch her forehead, and Miranda could only touch her chin. Riley looked confused at this, and repeated his instruction. I had a little internal pang at that moment, and told Riley that the girls couldn’t do what Simon was saying. Of course, as kids do, he just accepted it and moved on quickly to the next comand. Sigh…
We stayed overnight again with the McCloskeys, and then on Sunday morning, we went out to Denny’s for breakfast. After stuffing ourselves with pancakes, sausages and the like, we hugged our friends goodbye and drove back to our home 3 hours north.
It really was a great weekend. We completely lucked out with the weather, we raised money for our cause, and best of all, the Munro/Friz and McCloskey families got to hang out together. I’m so glad we live so close to each other, because as our girls grow older, they’ll be able to share their experiences of living with FOP. Considering how rare FOP is, that’s no small thing, and I’m truly grateful for it.
Its SO GOOD that Erin and Miranda have each other. I wish Jasmine had a little friend who was going through the same thing.