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Living with Rett Syndrome: Eye gaze is a game-changer, except it’s not a game
My husband is the technical mind in our house. He will happily mooch around Maplin or Currys for hours, become childishly excited over new apps, and find therapy in sorting through boxes of cables...
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Living with Rett Syndrome: Remembering birthdays past
As my son’s third birthday approaches, I find myself thinking about Hannah’s third and how we celebrated. I struggle to recall and then realise why: her third birthday came five weeks after diagnosis...
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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...
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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.
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Living with Rett Syndrome: Controlled crying, potty training and learning how...
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...
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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...
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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...
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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.'
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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)...
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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...
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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.
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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...
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