Posts made in February, 2012

An open letter to doctors

Posted on Feb 24, 2012 | 13 comments

An open letter to doctors

If you are a doctor, I would really appreciate it if you read this. If you read nothing else of the post, take this away: before diagnosing a child, review her history, look her parents in the eye and don’t give them “scripted” answers. Some of you call it “professional distancing” but I call it heartache. The setting for this post is Moorfields Eye Hospital, but it could have been any hospital. I’ve had doctors dismiss May and her future at Detroit Children’s Hospital, King’s College Hospital, Guys and St Thomas’ and their...

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What is happening to the NHS?

Posted on Feb 22, 2012 | 1 comment

What is happening to the NHS?

The Coalition government is at it again. They are pulling the rug out from under the Disability Living Allowance. Ripping the Mobility element from many needy people. Making disabled families who are also very poor, poorer. If that wasn’t enough to make a person want to charge Downing Street and literally disable David Cameron, now they are pressing through their National Health Service reforms. Pressing ahead despite most of the NHS begging them not to. Despite most of the professional bodies associated with the NHS criticizing it. Despite patient groups and people like me, on the...

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This week I’m… singing scales.

Posted on Feb 18, 2012 | 2 comments

This week I’m… singing scales.

My biggest fans. And yes, my voice merits this level of adoration. Just call me Julie Andrews. I’m no one trick pony. I’m a triple threat; I can sing, dance AND act. Okay. I can hum a tune, drunk dance AND act nasty – but only if you park in a disabled spot and you aren’t disabled. grrrrrr. Thank goodness for children. They think you are God’s gift to entertainment. My baby, Ieuan, adores me in much the same way as the Beatles experienced on their first tour of America. And, May can spend hours, literally, singing with me. See! She thinks I can sing! Our...

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Recognition for hardship or marketing ploy?

Posted on Feb 16, 2012 | 5 comments

Recognition for hardship or marketing ploy?

Mama Lewis and the Amazing Adventures of the Half-Brained Baby has been nominated, again, for the Circle of Moms Top 25 Moms with Inspirational Families award. Um. Thanks.¬†It’s kind of like being nominated for “Who has the saddest life?” Cancer.¬†Autism. Genetic abnormalities. The nominees form a long list of children born without and their parents who have suffered. Last year I was flattered, but that was before I realized what it was all about and, by that point, I’d already encouraged people to vote and I didn’t see a way out. Plus, I wanted to believe that it...

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How does special needs potty training work?

Posted on Feb 9, 2012 | 13 comments

How does special needs potty training work?

I admit it. My mom worked some kind of voodoo magic over my daughter. Because, it’s not just my mom anymore. I am now 3 for 3 with my daughter on the potty. Now, I only tried once today and twice yesterday, but each time, within 30 seconds, there it was. Pee-pee in the potty. I admit it – and, I’m just the kind of wilful daughter who refuses to believe that her mother might be right. I’m not saying that May is potty trained, or even close. But, the evidence has forced me to confront the possibility that it might, in one form or another, be possible. May seems pleased...

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