Conference

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. Not most people’s idea of fun, but I loved it. Because this was the […]

Nothing and everything

In the run-up to MPS Awareness Day on May 15th, the MPS Society is asking us all ‘What does MPS mean?’ Last year I already wrote a long (and emotional) post about what it means to me as a parent. Of course, most of this blog is from my perspective. I share what I’m going […]

What will you do?

One hundred years ago Charles A Hunter, a doctor working in Canada, first described the symptoms of Hunter Syndrome. In 2017, there are still children dying from this and other mucopolysaccharidosis conditions. That is why MPS Awareness Day on 15th May is just as relevant as ever. Every year we ask friends and family to […]

Learning

Not Pudding. Me. It may be a bit of a cliche but Pudding definitely teaches me things. He is so friendly with everyone he meets, welcoming them with an open heart and no judgement, despite often being on the receiving end of judgemental looks himself. To him, everyone is a potential playmate regardless of age, […]

Rare

When you leave your house today, as you go to work or the shops, look around. 1 in 17 people could, at some point, be affected by a rare disease. In Europe that’s defined as one that affects fewer than 1 in 2000 people. So how do you spot someone with a rare disease? The […]

Healing for the Soul

I haven’t posted on the blog for nearly 2 weeks. Not the first time that it’s been that long but it does feel a bit weird. Sometimes gaps have been because we’ve been busy. But sometimes it’s because it can be hard to admit to what I’m really thinking. Hard thing to admit # 1: […]

Sleep like a baby?

Having written about emotions last time, I’ve come to realise something (probably fairly obvious) this week. I am so much better at coping with everything when I am well rested. I’ve had a few late nights recently, and I find it leaves me in such a fragile state of mind. When I’ve slept enough, I […]

The ‘new normal’

Last week I was having a conversation with someone about emotions. Of course when Pudding was diagnosed with Hunter Syndrome I went through all of them – anger, guilt, desperation. I was drowning in the strongest emotions that I’d ever felt. When you first hear that your child has a condition that may kill him, […]

Time sponges

I always expected that when my children were old enough to go to school, I would start work again. I used to be a therapist, but stopped when Twiglet was six months old. I became a stay-at-home mum and also did childminding for Niece and Nephew. I suppose this has left me with some self-image […]

Products that I love

This is a post I’ve been meaning to write for ages but never quite got round to. One thing I found when I joined the strange new world of additional needs is that I had no clue what sort of products were available to help us. Not the big equipment sort of things like special […]