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So, I had this conversation with my son…

Posted on Mar 22, 2016 | 4 comments

So, I had this conversation with my son…

Last night, I put my son to bed, said goodnight 15 times and after several hugs and requests for water was finally released downstairs. And then, I heard this: “Mama?” “Yes?” “I want May to be like me.” We talk about May, don’t get me wrong. I never close the conversation down, but he is 4-years old. We talk on that level and until this moment, I’d never heard anything like this. For him, May is May. It’s not shocking, it just is. And, maybe as such he actually deals with it a lot better than I do. He wasn’t even two the first time...

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Time to share some sunshine…

Posted on Jul 23, 2015 | 6 comments

Time to share some sunshine…

Four months ago, I could barely walk across my kitchen. One month ago, I marched, along with thousands of others, from the Bank of England to Parliament Square. A march of protest against austerity, but for me another protest too: against ill health with the physical proof that I could walk the length of the march. So, did I make it?

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I have some major news to share

Posted on Jun 22, 2015 | 18 comments

I have some major news to share

For the two months, I’ve kept quiet about something. A few of my friends know, and certainly my family does, but the story still seems so outlandish to me that I’ve barely said anything to anyone about it. I’m in remission. Actually, I’m not just in remission. I’ve been in remission before. This is different. To read more click here.  

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Was this year a Halloween fail?

Posted on Nov 1, 2014 | 2 comments

Was this year a Halloween fail?

Every year I dress May up and get her ready to go trick or treating and every year she doesn’t come along. In 2012, it was just the cold and the dark that did it. In 2013, well… May doesn’t understand why anyone would want to go out after dark when they could be cuddling with their daddy on the sofa. This year it was her hip. She needs follow up hip surgery to adjust the work they did last year around her growing body. For the last couple of months, she’s barely been able to stretch out her right leg. I’m chasing it up – but I haven’t received a date...

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Will this product revolutionize seating for disabled kids?

Posted on Feb 3, 2014 | 5 comments

Will this product revolutionize seating for disabled kids?

When I was a toddler, I sat in a red rocking chair and read books. I would drink in each page as if I was digesting War and Peace. Page one: picture of a drum. Page two: a ball. Later, my son sat in the same chair, reading the same book. He didn’t just sit on it, he used it to propel himself up to stand and then to walk. None of those options were ever in the cards for May. She can’t read or stand or – until now – sit using that beloved red rocking chair. A couple of months ago, the Leckey company sent me their new Firefly GoTo seat to test out. Leckey is the...

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