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‘I think she’s having a seizure.’ I could hardly believe I was saying the words. ‘What do we do?’ I turned to Matt, craving some kind of reassurance. ‘What do we do?’
‘I don’t know. I think… in a seizure aren’t you just supposed to leave them to it? They’ll come out of it when…’ He gulped. ‘When they can.’
The next three and a half minutes felt like the longest of our lives. Matt looked up seizures on his phone and read that we should put Alice on her side, to help her breathe, so we did that while murmuring encouragements and endearments to her, even though it was impossible to know if she could hear us.
It was agonising to see her that way, so out of control, so in need, and yet there was nothing we could do. It went against every instinct I’d ever had.
Then, finally, her limbs relaxed and slowly her gaze came into focus. She stared at us in confusion, and then in fear.
‘What… what happened?’
‘You had a little scare, darling,’ I said, only just managing to keep my voice from trembling as hers was. ‘But you’re all right now.’
The day we got back to Bristol, I took her to the GP.
‘Febrile seizures are surprisingly common in children,’ he told us, smiling in sympathy. Alice looked very little in the chair next to his desk; her feet didn’t even touch the floor. ‘Although they can be quite frightening.’
‘This wasn’t due to a fever.’ I glanced at Alice, not wanting her to hear this whole conversation. ‘She wasn’t ill.’
‘I can request an EEG, of course, if she has another one.’
I gritted my teeth, because our GP has always been a bit too easy-going. I felt in my gut that something was wrong, and he wanted to take the ‘let’s wait and see’ approach.
As it turned out, we didn’t have long to wait. Alice had another seizure the following week, and the GP booked her in for the promised EEG, which gave no answers except that she didn’t have epilepsy.
As much of a relief as that was, the not knowing was making me anxious. I felt as if I were becoming paranoid, seeing everything as a symptom.
‘You need to relax, Milly,’ Matt told me, which was saying something considering how overprotective he usually was. ‘So she’s stopped liking broccoli. It doesn’t mean anything.’
I rolled my eyes at him, because it wasn’t that that was worrying me. It was everything else – the restless nights, the refusal to put on her shoes, the increased clumsiness, the way she’d sometimes forget a word, right in the middle of a sentence, and stare at me blankly, until I gently filled it in and she’d give me a beaming smile. The feeling, as we walked to school for her first day of reception in early September, that she wasn’t the same Alice I knew and loved.
It hit me suddenly, as I watched her walk in front of me. It had happened so gradually, all summer long, that I hadn’t taken it all in, but watching her walk so slowly and carefully down the pavement, even limping a little, as she dragged one foot slightly behind the other, I realised Alice was different. She’d changed, more than I’d ever seen or suspected and I knew in that moment that something really was wrong.
I made an appointment for the GP the next day, by myself, so I could talk honestly, without scaring Alice.
‘She’s changed, over the last few months, and I’m worried.’
The GP gave me a smile of rather indulgent sympathy. ‘Changed how?’
‘She’s slower, less confident. She trips or bumps into things more, and she can’t do simple tasks such as putting on her shoes.’ Or taking off her clothes, or even brushing her teeth. With a ripple of alarm, I realised, as I sat there, just how much I’d started doing things for her, because she said she couldn’t, and because it was easier.
That first pitched battle over the shoes felt like a long time ago. I’d given in without even acknowledging that I was doing it – a lot, moment by moment, day by day.
‘Children this age often exhibit a lack of self-confidence, a period of regression, especially when they’re starting school,’ the GP reassured me. ‘It’s fairly normal for them to say they are unable to complete tasks they were able to do previously.’
‘It’s not that.’ My voice came out firm, even hard. Alice wasn’t limping down the street because of a problem with her self-confidence. ‘It’s physical,’ I told him steadily. ‘Not emotional.’
The GP frowned, and then, with a sigh, as if he was making a big concession, he told me he could refer me to a child neurologist for an initial consultation.
‘Neurologist?’ The word threw me for a loop. It sounded so serious.
‘Considering the seizures she’s had, as well as the other symptoms you’re mentioning, I think that is the appropriate specialist to consult.’
I felt as if I had stepped off the edge of a cliff into empty space. I was free-falling in my ignorance, hurtling towards this whole new world I didn’t want to get to know. It reminded me of that moment when my doctor had told me I had premature menopause, except so much worse. Everything was about to change, and in that moment I knew I didn’t want it to.
‘A child neurologist?’ Matt said when I told him. ‘Do you really think that’s necessary?’
