Orange is the happiest colour

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.

Fundraising

I didn’t want to write this post. In fact I didn’t want to write it so much that I haven’t even looked at the blog for two weeks. I have started it and deleted it, started it again but got waylaid surfing eBay for fabric bargains and then, when I could avoid the blank screen no longer, walked away from the computer in staunch determination to find really important things that had to be done Right Now, like polishing the coffee machine and sorting out the cat toys.

I can procrastinate over even the most enjoyable of tasks but when it comes to things I don’t really want to do, the delaying tactics enter a whole new stratosphere. My to-do list has quickly morphed from one page of A4 to three, packed to the brim with Very Essential Tasks. You know, quick and easy jobs like setting up a new freelance PR consultancy (eek, what do you think?), redecorating our aged and well-used kitchen (also know as faffing about with Farrow & Ball paint samples, I’ve decided on Mizzle and Skimming Stone…), making Roman blinds for every room in the house (which also involved learning to use a new sewing machine, there was swearing, and tears), and surfing the net for imaginary holidays and fantasy shoes I definitely cannot afford.

And all in the name of what? Not talking about, or thinking about, fundraising. Fundraising for Orange. It’s not something I ever imagined doing. We are not on the poverty line. We live in a beautiful cottage by the sea, we can afford to heat our house, feed and clothe ourselves, and run a car. But what we cannot do is afford to pay for all the equipment, therapy and support that Orange needs. Typing this feels like a huge admission of failure. In the past, whatever financial situation or goal we have had in mind, we’ve been able to find a way of making it happen with our own means. But this is different. The sums involved are vast and our own means of money generation have been halved by the fact that I am now full-time carer to Orange.

The list of needs is growing as Orange gets bigger – somewhere safe to sleep, a means of independently getting about either on wheels or supported on two feet, a safe and stimulating play area at home, therapy input above and beyond that which is provided by the NHS. All of these things cost thousands. A bed for Beep? We were extravagant if we spent £300. A bed for Orange? Add a zero. Shoes for Beep? £40. Wheelchair for Orange? Add two zeroes. Sensory toys weren’t even on my radar when we had Beep, and furnishing a playroom for her has come at no great expense, but Orange needs safety matting and toys that are designed specifically to stimulate his senses in precise ways that will aid his development. All rather pricey, I’ve learned.

It is deeply humiliating thinking about the possibility of asking for handouts. Writing grant applications to charities and local trusts to see if they can help us buy a bed. Planning fundraising events to raise the funds to get Orange a mini-electric wheelchair so he can be independently mobile because it is crucial to cognitive and social development to be able to get about, and he can’t. The longer I procrastinate, the more I’m letting Orange down, but asking for help is so desperately difficult that for a while now it has seemed like the better option not to.

I had promised myself that by the beginning of April, I’d have stopped procrastinating and got on with making a fundraising plan. I had wanted it all to be done in time for Undiagnosed Children’s Awareness Day which is happening this Saturday, 13th April, 2013. I had imagined throwing a party, making all sorts of lovely homemade goodies to sell to raise funds for both SWAN UK and for Orange. I wanted to run the Plymouth Half Marathon to raise funds for both too. But I have achieved precisely nothing towards these goals.

So today I decided to take the advice of an old colleague of mine who used to say to me ‘just take a run at it’, give yourself 15 minutes of working on the ‘Huge Scary Thing To Be Avoided’ and promise you’ll stop at the end of the 15 minutes and reward yourself with a cup of tea. Baby steps, if you like. Which is a ridiculous turn of phrase coming from the mum of a child who may never walk, but my vocabulary seems to have shrunk with all the procrastination. I’m fighting the Brain Fog, so let’s just leave it there.

What did I do with my 15 minutes? I hear you ask. Well I set up a fundraising page. Thanks to a very lovely charity called Tree of Hope which gives families with disabled or sick children the tools to be able to fundraise for the things their children need. You can find ‘Orange’s Fundraising Page’ here. I am yet to do anything with it (expect another week of procrastination before anything new pops up here), but it is a first step. It feels a bit vulgar and, frankly, hugely embarrassing to be putting it out there publicly like this but these are my negative emotions and just something I will have to learn to deal with.

Orange’s page tells you more about the things we will be fundraising for:

A specialist bed

A Bugzi wheelchair

and ‘Snowdrop’ therapy, a programme that works on the theory of neuroplasticity, to help Orange achieve his full potential in life. There are vague plans floating around in the collective family brain for singathons, bakeathons and various other a-thons so watch this space.

I’m going to have to leave it there, because I can hear the Orange awakening and I daren’t keep the boy waiting for his lunch. He is like his dad, you know. Miss the lunch deadline by five minutes and trouble is afoot.

In the meantime, have a lovely long read all about Undiagnosed Children’s Awareness Day. Wear something pink or blue on Saturday, and pop along to an event near you to help raise money for SWAN UK.

With love, Mavis