Not to you

Many times I have laid in bed listening to your nightly party time, and cursing you for my lack of sleep. Last night though I loved hearing your surprised little ‘oh’s and cackles of laughter, the shouts of ‘wha da?’ from your dark room. You see, just before I’d been watching TV and seen a hearse with a child’s coffin in it and a name spelt out in flowers. Your name.

I should have expected it, the storyline was obvious. But I didn’t expect that visceral punch to the emotions and it left me sobbing on your Daddy’s chest. When I went up to bed and closed my eyes I kept seeing it still. But your laughter wound its way around my heart and soothed my fears. Every shout and giggle sang out that this is a boy who is joyfully and wonderfully alive.

Pudding peering around a tree with a huge cheeky grin.Since Christmas I don’t think I’ve been the best mother for you. I’ve spent too long stuck in a darker place than I’d like to be. I’ve been too easily frustrated by you and your brother, and have been finding it difficult to accept life as it is now as opposed to the life I expected. Things have been turned around lately though; Martin House and the MPS Conference gave us a bit of respite, and counselling has been helping me to look at things a little differently.

I lay there and thought of that coffin and your name in flowers, and instead of falling back into the dark place I vowed that it.. Will. Not. Happen. Not to you. Not as long as I can help it.

It’s not fair that a simple mistake in your DNA has dealt you this hand. It’s not fair that it is so costly to develop drugs for conditions as rare as yours. It’s not fair that decisions have to be made on which patients are ‘worth’ saving. It’s not fair that there are parents out there having hope ripped away from them as another trial drug is withdrawn.

It is all too easy to be swamped by all these obstacles in your way. I’m not a natural campaigner – I’m too shy and introverted for that. But, my gorgeous trouble, I promise I will do what I can for you. I will fight for you.

You are most definitely worth it.

Conference

Timetable for the MPS ConferenceQuite 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.

Not most people’s idea of fun, but I loved it. Because this was the conference organised by the MPS Society. It gathered together individuals, families, clinicians, surgeons and experts on mucopolysaccharidosis and other related conditions in the Hilton Hotel, Coventry. The whole hotel to ourselves, so no-one around to raise eyebrows at the wheelchairs dancing through reception or a child trying to make a break for freedom being chased down by a harried parent. From the moment we were greeted by the friendly MPS staff, we knew we were amongst family.

Pudding smiling up at camera before climbing into the car seat.

There is no doubt of course that living with MPS can be a stressful business, so the weekend started off with a session on mindfulness which Hubby found very useful. T and I managed to sneak in a visit to the hotel pool and then we were ready for dinner, the kid’s disco party and the chance to get to know other families. It’s a slightly surreal experience to meet people that I’ve only ever seen in photos until now, and greet them like long-lost friends. But that’s what it’s like when we’re tied together by this bond. MPS is no respecter of age, background, education or race and it forges close friendships that last through the years.

On the Friday evening we also got to meet our volunteers – wonderful wonderful people who gave up their weekend to take our children off and give them a fantastic time while we sat and listened to all the presentations.A few capsules on a ferris wheel 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.

On to the main business of the conference itself – talks on all aspects of life with MPS, from cardiac complications, behavioural issues through to new treatments round the corner. Some of the presentations weren’t for the faint-hearted; Hubby had to look away when faced with slides on carpal tunnel surgery (not me, I find that sort of thing fascinating)! Some were more challenging on an emotional level – looking at Pudding’s future face-on can be a scary thing. And then there were the inspirational ones, like a teenager talking about living with MPS I (Hurler-Schie) who refuses to let it define her.

Air-con vents on the ceiling of a coachThere 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.

The weekend was inspiring, disheartening, informative, tiring, relaxing and wonderful, and I can’t wait till the next one.

(The photos I have are mainly alcohol-fuelled Saturday evening ones on my phone, so I am illustrating this post with T’s slightly random pictures!)