Well it’s been and gone again, hasn’t it? And I bet like us you were sat there last night talking about how quickly Christmas and New Year passed again this year. I honestly don’t know where the time has gone, even though some of the sleepless evenings over the past two weeks (who am I kidding? two years!) with Boo have seemed to last an eternity. Yep: sleeping is still not Boo’s strong suit. No matter. He has others.
One of the things that makes it go so fast is just how much we try to ram in. You see, I love where we live, a nice town in a nice part of the world that we moved to so that both of us could have vaguely bearable commutes in opposite directions. But the downside is that we are nowhere near any of our respective families and some of our oldest friends. We try to compensate by travelling up and down the country between Christmas and New Year. It always sounds barmy when I explain to others what we have planned. But it has always worked in the past.
And then came Boo.
Boo has had periods of travelling really badly. At the moment, he’s pretty good. So what’s the problem you ask?
Space. Our little boy. Our premmie takes up a heck of a lot of room wherever he is. As I type this at my desk in the dining room, I am wedged in by the therapy bench behind me and a therapy roll under my feet. Rather than the walk in wine fridge I feel I both need and deserve, our kitchen has a standing frame and walker, and our dining room has a Jenx seating system and a Wizzybug wedged next to a sofa. It just about fits.
But what on earth do you do when you leave home overnight or for a few days. None of this equipment can come with us when we go anywhere. Even if any of it were more portable, Boo’s Bug wheelchair buggy takes up more than a third of our estate car boot. But while I can just about persuade myself to leave at least some therapy behind when we go away, I can’t bring myself to leave Boo’s independence or the postural support he so desperately needs.
All I can say, again, is thank goodness for Firefly. You may already have read my post on the much talked about Upsee, which Boo uses for weight bearing and supported stepping when we are out and about or in sports days! That squidges into a soft, compact tote bag, so that gets slung in the roof box whenever we head anywhere. But that doesn’t help with one of our biggest problems for Boo. Seating.
Although Boo is more than two and a half now, he still can’t sit independently. I wish I didn’t have to write that sentence, but it’s true. I don’t know if he ever will. He needs ever less support, but still enough to require adult supervision at all times. This is a literal pain for our backs and no small annoyance to poor Boo, who wants to be Mr Independent.
So all our Christmases came at once this year when we heard about and got one of Firefly’s newest products, the Playpak. It’s a much more portable (you carry it over your shoulder like a large but light satchel) and cheaper (hooray!) version of the Leckey Squiggles mat, for those of you who have tried one of those. Attached by Velcro so strong it would have stopped Dorothy’s house going up in that twister, you can attach the series of u-shaped supports, wedges, straps and bendable but sturdy rolls the Playpak comes with in many different ways to aid your child to meet their individual needs. You can rearrange the rolls and wedges to facilitate supported sitting, or prone therapy (tummy time), side lying and all the things you learn about very quickly when you have a child with physical disabilities. Almost all of the floor-based part of Boo’s physio programme can be done on the mat and I’ve got some new ideas from looking at the online therapy programme the company offers.
We haven’t fully got to grips with all of the possible benefits of the system yet (it has been Christmas, after all, and we were under strict instructions from Boo’s physio to kick back a bit over the festive period). But it is already a fabulous addition to our therapy and play kit. If we actually stop having so much fun in it, I might be able to remember to snap a pic of Boo in it to show you how much he likes it.
For now, though, I’m just so glad that this Christmas the Playpak gave Boo a little bit of independence we could take with us wherever he went. Priceless. Thanks, Father Christmas!