Despite appearances to the contrary (after all I love acting, and share a fair amount of my life on here) I’m not actually very keen on standing out. I’m more of a keep-quiet, blend-into-the-background, kinda gal.
Pudding however, has a habit of turning things upside-down. And I’m not just talking about the kitchen bin here. He challenges me to change my life too. Four months after his diagnosis I shaved off all my hair to raise money for the MPS Society. The response was brilliant and the final total was over £3000.
Three years on and I’ve seen many people taking the effort to do fantastic fundraisers. I’ve toyed with various ideas and I’ve felt bad that I’ve not got round to making any a reality. Part of it, I know, is down to struggling with my own demons. That’s about to change but it’s not down to me.
A couple of months ago I got a message with a proposal (no, not that sort!). I’ve written before about how much the support of friends means to me, and one lady has featured in a previous blog when Pudding was invited to her daughter’s party. Her message suggested the frankly quite stupid idea of driving an engine-less soapbox cart down a steep hill and wanted to know if I’d like to be part of the team and raise money for MPS. Once I had established that I wasn’t expected to step foot in said cart and just had to help push, I of course had to reply a resounding ‘Yes!’
Don’t worry – the cart has brakes and is part of an organised event, so I’m fairly confident that my friend will still have all her limbs by the end of the day. The Micklegate Soapbox Run has been held on August bank holiday the last two years and is already a brilliant local fixture. Some other lovely ladies have been persuaded/bullied into joining our team, the cart is looking great and Danny’s Daring Damsels will soon be flying down that hill.
But now of course, I have to do the bit that I find difficult – to ask whether anyone fancies sponsoring us! The link is on justgiving, so it’s dead easy and I will love you forever. So will Pudding. Though to be fair, he loves everyone anyway…
Don’t forget, if you’re in York on the day you can come and cheer us on!
(And before anyone else says it: I know ‘dame’ would probably describe me more accurately than damsel, but it didn’t sound as good, so there!)
No, what I’m talking about now is the way other children react to Pudding. I judge them by the way that they judge him.
Perhaps I should change the tag-line of my blog – Facing the future with a facade of fortitude…?!
How would you explain Mucopolysaccharidosis to someone who has never heard of it?
As Sarah Brisidon, the pants-tastic organiser of this event says, she’s doing it ‘because my little boy (& every disabled person) deserves more than a toilet floor’.
Lately I’ve been trying to work out what’s changed to make me feel different. After all, Pudding is the same gorgeous trouble he always is. His diagnosis hasn’t changed. The future is still uncertain. It’s just my own attitude that has changed. Some of it has been down to things that I’ve been able to control, and some of it has been external factors.
So how to get past it? One thing at the MPS conference this weekend really helped to clarify my thinking about how things have been in the last few months. My favourite psychologist showed this diagram (and sorry, I don’t know who should be credited!). Essentially it shows that what you think about something affects how you feel which in turn informs behaviour, and so on. Round and round. Negative thoughts lead to negative feelings and behaviour that doesn’t help the situation. This was a bit of a lightbulb moment for me as it is so true: now something has happened to interrupt that cycle.
Earlier in the morning we didn’t have any particular plans but at the last minute I decided we’d go to the
It is hard to describe the relief I felt on getting the first letter home describing what his class was going to get up to this half term. I no longer have to deal with the heart-sink of reading ‘this week we’re going to be looking at number bonds to twenty’ when my son can’t even count to two. Instead I read about an emphasis on mark-making, sensory play and grouping objects. They work on self-care and regulating emotions, do dance and explore stories in amazing interactive ways. It’s exciting watching this new future unfold in front of him.
Sometimes though the hardest photos of all are those from before diagnosis. When I had never heard the initials MPS. Photos from more innocent days. I look at his so-obviously-Hunters face and think ‘How could I not have known? Why didn’t I fight harder to get his delays looked into? Why did I let the professionals’ dismissals over-ride my concerns over the way he looked and acted? How could I have missed what is so obvious to me now?’