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Rett Syndrome and me: White picket fences, Health

Rett Syndrome and me: White picket fences

When you’re young, I think you think that by the time you’re, say, 36, you’ll have it all figured out: love, family, money, career, that important fundamental kind of stuff. Not necessarily all perfect, white-picket-fence sorted, but perhaps at least a muddy-brown splintered gate sorted.

By | Health, Notebook | Friday, 7 February 2014 at 4:30 pm

Rett Syndrome and me: Love actually, Notebook

Rett Syndrome and me: Love actually

I have a confession to make. Somewhere around five weeks before Christmas, the hubby and I spend an evening wrapped in a duvet on the sofa watching ‘Love Actually’, again.

By | Notebook | Sunday, 5 January 2014 at 12:34 am

Rett Syndrome and me: Happy new year, Notebook

Rett Syndrome and me: Happy new year

As a child, New Year’s Eve was my absolute favourite time of the year, more exciting by far than my birthday or Christmas. Every year we would go to stay with my aunt, uncle and cousins, and New Year’s Eve would be a family party full of silliness, too much food, and brilliantly awful indoor fireworks. I loved it.

By | Notebook | Sunday, 5 January 2014 at 12:18 am

Living with Rett Syndrome: Playing Mary – Part 2, Health

Living with Rett Syndrome: Playing Mary – Part 2

Well, I was right. Mostly right. As predicted, today was messy. Hannah played Mary, ‘Purple’ class played green aliens, 80 other immensely special (in the ‘unique’ and ‘brilliant’ sense of the word) children played stars, angels, donkeys, sheep, kings and shepherds, and I, you’ve guessed it, wept.

By | Health, Notebook | Tuesday, 17 December 2013 at 6:00 am

Living with Rett Syndrome: Playing Mary, Notebook

Living with Rett Syndrome: Playing Mary

Today, a quiet and simple note came home in Hannah’s school bag. ‘We have chosen Hannah to be Mary in our Christmas play. Please can you send in a blue dress.’

By | Notebook | Tuesday, 10 December 2013 at 2:00 am

Living with Rett Syndrome: Trying to face some inevitable truths, Health

Living with Rett Syndrome: Trying to face some inevitable truths

I like to think that I am generally a realistic, feet-on-the-ground, faces-the truth kind of a person. Since the initial shock of diagnosis wore off, I have imagined that I am facing the reality of my daughter’s condition in an informed and educated manner. But actually, I’m not. I’m in denial. And never has that been clearer to me than this evening.

By | Health, Notebook | Sunday, 27 October 2013 at 4:24 pm

Living with Rett Syndrome: Walking in someone else’s shoes, Health

Living with Rett Syndrome: Walking in someone else’s shoes

In a few days’ time, I will be playing at single parenting for approximately 89 hours. It’s a daunting prospect in many ways, not least because I am increasingly unable to carry the six-year-old up or down the stairs, and because there is not a buggy in existence which can be pushed once they’re all in it.

By | Health, Notebook | Thursday, 17 October 2013 at 6:00 am

Living with Rett Syndrome: Controlled crying, potty training and learning how to be ‘normal’ parents, Health

Living with Rett Syndrome: Controlled crying, potty training and learning how to be ‘normal’ parents

When Hannah was nine months old and bedtime was proving a struggle, I dutifully read my Gina Ford, watched Supernanny, and asked every parent I knew who didn’t seem entirely sleep deprived, how you get a child to fall asleep without lying next to them. ‘Controlled crying’, came the resounding answer.

By | Health, Notebook | Monday, 23 September 2013 at 4:00 am

Living with Rett Syndrome: One of those nights, Notebook

Living with Rett Syndrome: One of those nights

It is 12.04am and Hannah is awake. She has been awake for just over an hour and it is going to be another long night.

By | Notebook | Tuesday, 27 August 2013 at 7:00 am

Living with Rett Syndrome: How far does a smile alone actually go in this world?, Health

Living with Rett Syndrome: How far does a smile alone actually go in this world?

On the last day of term Hannah came home with a certificate: ‘awarded to Hannah Johnsson, for always having a lovely smile and being so happy. Hannah gets on really well with all her friends and is a joy to have in the class.’ Full of pride, I took a photo and shared it, knowing that those who also know and love Hannah’s infectious smile would understand my happiness at such a report.

By | Health, Notebook | Tuesday, 6 August 2013 at 9:00 am

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