Saturday was the hottest day of the year so far, and what was I doing? Rubbing away goosebumps in a conference room in Coventry…
We’ve just spent the weekend at the MPS Society Conference – a weekend of talks, coffee, cake, chatting, more cake, more talks, partying and talks. Full on and exhausting, but most definitely worthwhile.
We’ve attended events each of the last two years, so you might think that there is not much more information I need to take in. Yet there are always some useful snippets that I pick up on, something to reassure me about the next steps we’ll be facing. I won’t bore you with the many details that I scribbled down in my notebook – info about changes in the corpus callosum relating to behaviour, warning signs to look out for as swallowing function declines (oops, I just did!). We’re lucky with the health professionals we see in Manchester in that any questions I have are always answered. But sessions at conference often answer the questions that I didn’t know I had.
And as always, it’s the chance to talk to other parents and individuals with MPS that is almost more important. Chatting with others who just get it.
Unlike in previous years we didn’t take Pudding with us – the date coincided with the weekend we’d been offered respite at Martin House Hospice. It did feel a little odd being at an MPS event without him, but in a way he was very much with us still. Walking down the corridor to our room, I could picture him thundering down the very same corridor two years ago. Helping myself to juice at the breakfast buffet I heard a little voice in my head, shouting ‘Du!’. And of course, every snippet of information that I stored away was one that will inform his future.
T had a super time in the children’s programme (trip to Drayton Manor, magic show, DVDs and more sweets than I could possibly approve of). But it occurred to me that maybe one of the greatest benefits to him of the weekend was the chance to be play with us and be silly, released from the responsibilities of having to be the sensible big brother while we concentrate on Pudding. (Yes, that is him and Hubby having an inflatable banana/guitar duel.)
And last but not least, I stepped way out of my comfort zone by standing up on stage to sing a solo in the MPS talent show!
It’s strange writing this today, exactly four years on from the confirmation of Pudding’s diagnosis. Back then it would have been too overwhelming, too difficult to contemplate choosing to spend a whole weekend immersed in the MPS world. I would have sobbed my way through the first couple of talks before hiding in the loo. So much has changed in the past four years, and while not everyone will find the same path through this life, for me embracing times like this can certainly have positives.
(If you’d like to see some of the highlights from the weekend, have a look at this video. You might spot me!)
Quite a few people commented yesterday about the nice weather we’ve had this weekend. I know there was sunshine but I barely saw it as I was sat indoors in a dark room listening to presentation after presentation at a conference.
It was a little nerve-wracking to send a challenging child like Pudding off with a complete stranger but I cannot sing their praises enough. For the brief hour that I saw T on Saturday – in between their trip to Drayton Manor and the evening entertainment – he talked non-stop about their volunteer and how great he was.
There was more emotion at the Gala Dinner on Saturday when awards were presented to those who’ve made a difference to the MPS community. People who’ve gone above and beyond to raise money, campaign for treatment or support others. I might have cried just a smidgeon. I blame the wine. Afterwards there was time to let our hair down and have a go at some funfair games while the childcare volunteers continued their stirling work. We even got a little goody bag with items donated by a few companies.
A Hunter's Life 