Seizures

So, I had this conversation with my son…

Posted on Mar 22, 2016 | 5 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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800 seizures a day: our epilepsy story

Posted on Nov 14, 2014 | 3 comments

800 seizures a day: our epilepsy story

This week on the Firefly Garden, bloggers from around the world are sharing stories about their children and epilepsy. I suppose our story makes for pretty grim reading. But years later, with May’s seizures down to 1 to 2 a day and causing her very little distress, we feel it is a triumph. Here is the post and make sure to click on the links at the bottom to read other parents’ stories: My daughter, May, was born with a severe brain injury. She had seizures every day, from birth. She has taken, at various points, anti-seizure medications including Phenobarbital, vitamin B6...

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Where is the shock and anger?

Posted on Apr 27, 2014 | 13 comments

Where is the shock and anger?

I’m the mother to May, a severely disabled little girl, and I’m opening today’s post with a controversial statement: Your prayers are not enough. Thank you for praying for us. And for the 800,000 other families in the UK who are raising a child with disabilities.* It’s not that we don’t appreciate all the goodwill sent our way. But what about a prayer combined with a lasagne? We could really use a lasagne. Or a few hours off on a Saturday so we could do our shopping. Or for you to sign a petition calling for the end of welfare cuts. Or for more shopping malls to...

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When there is no answer

Posted on Feb 28, 2014 | 5 comments

When there is no answer

A couple of weeks ago, a professor running a vision clinic drew my attention to my daughter’s eyes. Her beautiful, big eyes. “She has very large corneas,” he said. “Do you know what happened to May? Has she been seen by the geneticists?” She has. In fact, she’s had two MRIs, many brain scans of various types, three lumbar punctures to her spine, blood tests (hundreds?), genetic photographic testing (where they examine her facial features) along with tests for Strep-B, infection and vitamin deficiencies. They’ve revealed nothing. “How was your...

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My two-year old knows something’s wrong with May

Posted on Nov 25, 2013 | 5 comments

My two-year old knows something’s wrong with May

A few mornings ago, my husband was taking a shower and so didn’t hear May have a seizure. She cries in a thin and tremulous voice, and it is filled with terror. She still has at least one seizure like this a day, which is much better than it used to be. My husband was letting me sleep in, so I didn’t hear it either. Very softly, there was a knock at my door. “Mama?” a little voice said. “May-May’s crying.” I rushed out and held her in time to comfort her. Later that morning, Ieuan made himself shake. Just like May, his arms went rigid and his fingers...

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