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 […]

Party!

Last week Pudding had a party to go to. One of those ‘Turning 5, and inviting everyone in the class’ sort of parties. I looked forward to it as a great opportunity to see Pudding in a large group of his peers and watch first hand as he interacted with them. It would also be […]

Things people say

It happens to all parents of disabled children. The questions and comments from other people who don’t quite know how to interact with us now. I haven’t really had any negative comments yet but there have been a few times when I’ve been a bit stumped as to how to answer. I think the hardest […]

Progress

I am finally allowing myself to believe that this clinical trial is working for Pudding. Although I have seen the results that other boys have achieved, I have until now always had to remind myself that: a) a trial is exactly that. A trial. What works for some may not work for everyone and that […]

A world without…?

Last week I got round to watching a programme I’d recorded – ‘A World Without Down’s Syndrome?’ In it Sally Phillips, who herself has a child with Down’s Syndrome, raises concerns that a new highly accurate screening test will lead to an increase in the rate of abortions of those identified with Down’s (which is […]

Guessing games

This morning Pudding woke up crying. I hear him whimpering in his cot and go to get him out. When I bring him downstairs he sits on the sofa, his normally cheerful face red, contorted and tear-streaked. Cuddles make no difference. Even breakfast doesn’t tempt him. Was it a bad dream? Was he feeling sick? […]

Meetings

The last two weeks have had a beautiful synchronicity (though I suppose that’s not really the right word as I knew both events were happening). I have had the honour of meeting two lovely mothers and their sons who live with Hunter Syndrome just like my Pudding. The newbie Last week in Manchester I met […]