I don’t know a great deal about Frank Sinatra. I guess he passed me by in my musical upbringing and not being a great film buff (much to the disdain of Mr Mavis), Ol’ Blue Eyes never made it onto my cultural spectrum. I tell you this because it’s very possible, given the little I do know of his mildly unsavoury and intriguingly colourful personal life, that this quote has some less than innocent hidden meaning, but here I’d like to use it a touch more literally.
I must tell you that I’m not one of those people whose heads are always full of useful and pertinent quotes from important historical figures, ready to whip out at any given moment, impressing everyone with a vast cultural appreciation and well considered usage of appropriately assembled words. Far from it. I’m far more likely to tell you I’ve ‘opened a kettle of worms’ or that I’m dealing with a whole new ‘can of fish’. Proverbs, sayings, idioms, quotes, even jokes, my memory just can’t seem to hold on to them. But this one has sort of stuck.
Two weeks ago, something incredible happened in our world. Thanks to a little bird in the shape of my dad, rather a lot of people suddenly knew about Orange. And they also knew that we were starting to think about the difficult task of raising money for equipment and therapy that Orange needs to help him to access his world, be safe, and to aid his development as much as is possible. The only way I can describe what happened is an outpouring of the most awe inspiring human kindness and generosity that I have experienced. People who have never met Orange, and the majority of whom have never met me or Mr Mavis, selflessly gave what many of us around the world are finding that we have less and less of as the economy does its worst. And now, two weeks on, we are over halfway to our fundraising target.
I had thought I’d have to run a dozen marathons and put my family though all sorts of sponsored humiliation and terrifying ‘life enriching experiences’ to get this far, and was starting to feel a rising anxiety about where to find the time to do all this in between the time commitments of caring for Orange, doing his therapies, darting about between his appointments, chasing professionals and, you know, living the regular parts of life like going to work, keeping a home from drowning entirely in cat hair, and trying to ensure my husband and four year old don’t turn completely feral. I’ve casually put myself into the ballot for the London marathon (ssshhh and eek) and if I do get a place I shall now run this to raise money for SWAN UK, since we have been so unbelievably touched by human kindness and now Orange’s fund is looking really very healthy indeed.
I said in my last post that this is life changing. And it really, truly is. I’ve been able to order the bed that Orange needs to keep him safe at night and save my back from the impending doom looming from lifting a two year old with a body like a wet noodle in and out of a cot several times a day. On Wednesday, Orange’s physio is visiting us at home and we will sit together and go through all the possible types of equipment we can purchase to help Orange with his development – crawlers, scooter boards, the Bugzi powerchair, walkers, lycra suits, splints and buggies. And in two weeks we attend Orange’s first Snowdrop therapy assessment in Devon. This is all huge. Not only in making caring for Orange easier but now it feels like we can actually do something to help Orange become the best that he can be. The emotional burden and guilt of not having the means to really help him is lifting.
But there is something else truly striking that has shown itself to me during this little whirlwind. In revealing vulnerability, in telling this story about our little boy, people around the globe have not only bestowed help of a monetary kind, they have connected with us in many other ways too. Some have revealed their own vulnerabilities, some have shared knowledge, information and professional contacts and some have brightened our days with gentle, funny, thoughtful words of encouragement and love, including what has now become my favourite little day time pick-me-up. Sinatra had it spot on. Orange is eye-catching, unexpected, memorable and you can’t help feeling happy being surrounded by it. So apt for our boy, one short little comment on Orange’s fundraising page now sits close to my heart.
There are times in the bringing up of a child with disabilities that the world shows its darker side but, overwhelmingly, our experience so far in raising Orange is that not only have our own quotas of love and empathy for others been given a substantial boost, the generosity of heart towards our family both from people who are close to us and from those we have never met knows no bounds. It’s teaching me to really like people. Having a child with substantial difficulties certainly sorts the wheat from the chaff amongst the people in your lives. We have some incredible, funny and deeply kind new faces in our lives while, at the same time, some well-loved oldies, even blood based ones, are dropping off the screen, mainly of my own doing, either because I now have the wherewithal to tell them their sense of humour sucks or because there is a rapidly expanding chasm in our values systems.
Most of all I just feel a little bit more human. This will sound intensely absurd to those of you who have been feeling human all along, but I’m beginning to realise I spent a great deal of my pre-Orange days just sort of blundering along unconsciously. I’m not even sure I really knew the difference between happy and just, well, sort of ok. Orange, and the relationships that are evolving around him, have changed that.
And so I end with the wise words of a cultural figure I know rather more about than I do Sinatra. If you haven’t read any Haruki Murakami by the way I sincerely recommend that you do. Especially if you are captivated, like I am, by the power of the human mind, the surreal, and on a less grand scale (or perhaps not), cats.
“It’s because of you when I’m in bed in the morning that I can wind my spring and tell myself I have to live another good day”
Haruki Murakami, Norwegian Wood.