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Welcome nursery people!

Posted on Jun 12, 2015 | 0 comments

Welcome nursery people!

Yesterday, I gave a speech at the National Day Nursery Association’s national conference. And yes, when I was dropped off by the taxi in front of this sports arena that I’m assuming seats tens of thousands, I did think, “What the hell am I doing here?” Thankfully, I wasn’t centre-pitch delivering my speech to a rugby ground of thousands, but a sedate conference room of hundreds. For those of you who saw me ramble through my speech and came here to read more about our trials and successes with nursery, I bring you this easily accessible list of previous posts...

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The joy of parenting a special needs child caught on video

Posted on May 30, 2015 | 4 comments

The joy of parenting a special needs child caught on video

I almost didn’t use the phrase “Parenting a special needs child” in the title of this post. Don’t get me wrong. I have no objection to the term “special needs child”. I live in reality. I call it like it is. But, sometimes there is no special needs in the equation. Sometimes, like this video shows, children are just children. They have temper tantrums. They get sick. And hell yes, they shriek with joy and giggles sometimes. When May shrieks with joy and giggles, as her mama, I don’t blink back bittersweet tears and think: “Ah, bless. She is so...

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Update on my plea to NHS England to save my life

Posted on Apr 30, 2015 | 23 comments

Update on my plea to NHS England to save my life

Today, I received the call from my doctor that I’d been waiting for, that all of you – my friends and family especially – have been waiting for: My second transplant has been approved by NHS England. The past six weeks have been some of the darkest days of my life. That so many of you got behind me, including hundreds of total strangers, was completely overwhelming. I am very grateful. But, the truth is the real heroes here are my doctors, who pressed for this treatment despite it being expensive and only given in very rare circumstances. They toiled behind the scenes on my...

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Happy Birthday May – You are six!

Posted on Apr 23, 2015 | 7 comments

Happy Birthday May – You are six!

Like the title to a Winnie the Pooh book, my little half-brained baby is now a 6-year old half-brained beauty. And let’s all take a minute to pause there. SHE IS SIX. That’s nuts. I feel old. But, you know what? With everything going on the last few years, I don’t mind feeling old or the idea of growing old, especially with such a cutie by my side. And how incredible it is that, not only are we dealing with having a child this brain damaged but we enjoy her, our lives and our future. Having said that, here is the thing… May hasn’t actually made a lot of progress...

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And finally… some good news!

Posted on Apr 8, 2015 | 10 comments

And finally… some good news!

Several weeks ago, I published a post entitled: This is what being disabled and on the housing register looks like. I began: A mother with leukaemia. A five-year old daughter so disabled she can’t even throw an arm around the shoulders of someone carrying her up the stairs to her flat. Over two years on the housing register and no chance of even being shortlisted for a property. This is the reality of being disabled and living in housing completely inadequate for your needs. That was five weeks ago. This week we were shortlisted for a property! We are thrilled because, even if we...

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