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.
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.
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.
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.
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.
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 and it’s all a bit of a blur.
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 which, to me, appear entirely identical. I suspect this is not peculiar to our household alone.
Today I was given a rare gift: a day alone with my little girl. Just her and me. A girls’ day out. She understands immediately when the attention is undivided and starts to giggle the moment I lift her into the car, clearly excited at the absence of small demanding boys on the back seat!
I was planning lessons for a year 7 class today, about short story writing and how to create a three dimensional character. One of the ways we learn about a character, I teach them, is through what other characters think, say and feel about them. It occurred to me that this is perhaps at odds with the rather modern concept that we should worry less about what others think and instead be brave and confident in ourselves.
I rarely remember my dreams. I suspect this is because they are rarely unusual or noteworthy enough to hold on to, too often revolving around the pile of marking or the imminent Ofsted inspection to warrant using precious memory space!
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