Posts Tagged "babies"

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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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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This is the most disgusting thing you will read today

Posted on Jul 1, 2014 | 23 comments

This is the most disgusting thing you will read today

May is five years old now. She no longer fits on those baby changing tables, and she is only getting bigger. If you leave your home for more than an hour, chances are you might need to use the toilet. May does too. When we go out and she needs to be changed, we have no choice but to place her on the floor of a toilet. We wouldn’t put a baby on the floor of a toilet. What a revolting thought. We wouldn’t choose to lie about ourselves on the floors of toilets. Or, allow our toddler to eat a bit of food he drops there. But, there seems to be very little drive to provide sanitary...

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Today I’ll be speaking at Parliament about this…

Posted on Jun 17, 2014 | 6 comments

Today I’ll be speaking at Parliament about this…

Disabled children are almost completely denied child care in Britain. That means their mothers can not return to work. That means they are denied the access to early years education that is a right for every other child in the country. These children cost more; they take more time, more supervision, more training and even changes to the infrastructure of buildings. At this time, the government does not provide extra funding which leaves families like mine scrambling for child care and often needing to quit their jobs as a result. It is a human rights issue that is seriously putting children...

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On the BBC tomorrow… and next week…

Posted on Jun 10, 2014 | 1 comment

On the BBC tomorrow… and next week…

Child care for disabled children needs urgent attention by the British government. Almost 3/4 of mothers have to give up their jobs or move to part-time work after having a disabled child, according to research by the charity Contact a Family. Not only that, but they have uncovered that the fees for children who are accepted are 8x the cost of other children.  May at the time when she started at nursery. Readers of this blog will be familiar with our issues in this area: from an “outstanding” nursery that said they prioritised special needs refusing to take May to a nursery...

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