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.
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.
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.
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.
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.’
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.
Latest from Independent journalists on Twitter