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