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Why I love my half-brained baby

Posted on Dec 1, 2014 | 6 comments

Why I love my half-brained baby

Praise be all parents who lovingly pack a hospital bag for their child knowing they will be wheeled into surgery the next day. On Sunday night, I packed up my daughter’s clothes and nappies and all the essentials — plus her Minnie Mouse pillow and treasured, baby blanket — for her hip surgery the following day. Finally, I packed her favourite toy, a monkey music toy. On the bottom, I wrote in big letters “Property of May”. Last time she had surgery, someone took her monkey toy and placed it in the black hole of the children’s toy room in the ward. I...

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These facts don’t define me. This success does.

Posted on Sep 4, 2014 | 8 comments

These facts don’t define me. This success does.

Sainsbury’s wrote me an amazing email this week confirming that all of their stores, nationwide, will have a disabled shopping trolley for kids to use by the end of the year. Every.Single.Store. Thousands of families across the country will be able to complete a weekly shop with their child. A normal chore, once too challenging, made simple.  

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Another “impossible” on the 1000 things May would never do – done

Posted on Jul 14, 2014 | 5 comments

Another “impossible” on the 1000 things May would never do – done

Five years ago, I sat in a small office of a hospital with a professor at one side of a desk, my husband’s hand in mine and the weight of a list of all the things my daughter would never ever do, suffocating me. Thousands and thousands of activities pouring through my mind. Everything from toilet training to going to the circus. So, what happened next? Okay – toilet training is out. But there were plenty we did do. May went to the theatre. She performed in a school assembly. She danced (she doesn’t stop bouncing sometimes). Swimming. Travelling. Bed time stories. Carving a...

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They invited WHO to Parliament? (Hint: You know her.)

Posted on Jun 25, 2014 | 6 comments

They invited WHO to Parliament? (Hint: You know her.)

It is a terrible thing for a child to be born with one burden - their disability – and find they are more encumbered by another, our exclusion. Last week, I was invited to Parliament to give evidence about why finding childcare for disabled children is so difficult.   

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This mama kicks ass

Posted on Apr 29, 2014 | 4 comments

This mama kicks ass

Six-month post-bone marrow transplant biopsy results in today: I’m still cancer free. Still kicking Leukemia’s ass. Poor Leukemia. I’d almost feel bad for it, if it hadn’t almost killed me. Instead – HA! HA! Leukemia! - I win! And you are a massive loser. You poked me with needles, drilled into my hips, made me live in the hospital for months, poisoned me and transformed me into baldy mom. Even more trying: you made me eat hospital food. And still, I kicked your ass. Want to know more? Read this six-month update on my...

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