Posts made in May, 2010

Lambeth Council cut May’s support with no warning

Posted on May 29, 2010 | 0 comments

This week my prevailing emotion was anger. With May, rather than assistance, it is as if systems are put in place to make our lives more difficult. I just fight and fight and fight those systems. I get what I need for May in the end, but I get it through conflict and begging. I get it after months, rather than days. I get it, but it comes at a cost double what other families pay. I don’t make one phone call; I email, write, AND call, and then I have to call two more times just to make sure it has all gone through. And, it never has. This week is a perfect example. Weeks ago, Lambeth...

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Letter to my MP Tessa Jowell

Posted on May 28, 2010 | 0 comments

As promised, here is the letter I sent to my MP, Tessa Jowell. (For you Americans: an MP is like a senator except they serve a much smaller constituency.)  I shortened the letter as many of the details are already here on  the Nursery thread on this blog. Having said that, it is still very long, so if you make it through the whole thing, congratulations. Dear Mrs Jowell, My daughter, May, who just turned one-year old, is a special needs case. She was born with severe brain damage. She is developmentally delayed, but a happy baby making incredible progress. Up until our search for a nursery,...

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May is American!

Posted on May 25, 2010 | 1 comment

She is free! She is brave! These are things we already knew about May, but now they are official. Today, May received her American citizenship. True story, from today at the American Embassy, London: Me: Hello, I’m applying for citizenship for my daughter. Them: (frowning) May I see your paperwork? (Me passes over paperwork.) We Americans are not sure we want another bouncing baby in our country. May we see the baby? Me: Of course. (Me raises baby.) Them: (Them cheers.) She is adorable! Congratulations. (Stamps paperwork.) If you doubt the veracity of the story above, refer to the...

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This week I’m… sitting in the dark. In the bathroom.

Posted on May 18, 2010 | 2 comments

It’s not as miserable as it sounds. I’m sitting in the dark. In the bathroom… with a giggling baby on my lap. In the summer months, it is almost impossible to find a space dark enough to stimulate May’s eyes with lights. So, we’ve retreated to the bathroom, where no light shines. Together we sit on the toilet (it is very glamorous in my household) and we play with all May’s toys that light up. Some play songs. Some are totally silent and just light up in pretty blues and pinks. Some have lovely buttons to press, and with a little guidance from Mama,...

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Dealing with doctors

Posted on May 15, 2010 | 2 comments

What is the difference between a doctor and a secretary? That’s not a joke. This week there was no difference. Both asked after my daughter. Both offered no new information whatsoever. In fact, as far as services go, the secretary at least provided me with the form I requested. On Monday, we met with a neurological ophthalmologist. He dilated May’s eyes, determined them structurally sound and revealed that the nerves connecting them to her visual cortex were severely underdeveloped. Then, he told me that May’s sight was fine but that she has no ability to understand,...

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