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 […]

Another RIP

Most of the time lately I’ve been able to feel very positive despite the sword of MPS hanging over us. Pudding is on the trial and we know that this could mean his future is very different from other Hunter’s boys that have gone before him. Even if the trial doesn’t work for him he […]

Hospitals (and play)

I have a little luxury that I indulge in when we’re in Manchester if it’s a long day or we’re there two days running. Our visit last week was a long long day. There was a problem in Pharmacy making up the drug so Pudding wasn’t given his dose until three hours later than usual. […]

School

Exciting times! Yesterday was Pudding’s second full day at school. Last week he did two mornings and this week we’ve been alternating so we can ease him (and them!) in gently. Despite some encouraging transition sessions and oodles of support from school I have been nervous about him starting. Will he run riot? Will the […]

My boys. Always.

As predicted, this summer holiday has been so much better than last. We’ve had some lovely days out/time away and respite has allowed Twiglet and I to spend time doing some more adventurous outings. And of course it has helped that we weren’t being crushed under the weight of a new diagnosis. The holiday ended […]

Feeling the love

I have many reasons to feel grateful despite MPS: the uncomplicated smile of delight on Pudding’s face when he sees someone he likes; his deep chuckle when something catches his fancy on TV; the love given to him by his older brother despite being hit frequently; occasional sunny days; trips out. One thing I haven’t […]