I didn’t know how I could write about my woes regarding looking after Daisy following the horrific Manchester atrocity but the reality is life goes on for all of us, we cannot help those who have lost their precious lives. We can cry for the pain of the people lost and left behind but for us that are distanced from this awfulness we have to continue living. My life is shadowed with what now seems trivial moaning and whinging but the world doesn’t stop for those of us left in this mad, sad world, we have to carry on.
Daisy has had seizures today. Awful violent scary seizures. You’d think that after all the hundreds of seizures I’ve witnessed that I would be conditioned to cope, but I’m not. They never get any easier. I despise them. It’s torture to watch and feel so impossibly helpless. The first one was 3.10am. I bolted out of bed when I heard the gulping and distinctive ‘seizure’ noise. Daisy had blue lips, her eyes were rolled into the back of her head, her neck was stiff and her body tight. It lasted about 3 minutes. That’s a long time when you’re waiting for it to end. You wonder if it will end. Is this the seizure that will end Daisy’s life? That sounds dramatic doesn’t it, but it’s how I feel every time. The darkness does leave me as soon as she breathes again, but it’s there. These wretched seizures don’t just endanger her life – each one erodes her brain.
I lay next to her, holding her tight. She groaned and moaned until eventually we both fell back to sleep.
5.30am. Another seizure. This time her face was in the pillow so I had to force the pillow into the mattress so that I could remove her dummy and stop her from suffocating. 2 minutes later it was over. Daisy let out an awful deep groan and entered into a phase known as ‘postictal’ which is a recovery phase. Daisy tends to have very long periods of postictal phase, 3,4,5 hours. Today’s will be interrupted with more seizures, of that I have no doubt. Will I be forced to use her emergency medication? I don’t know. I just have to sit and wait.
With the seizures come complete bowel evacuation. It’s so difficult to clean up an unconscious 16 stone girl. Getting the nappy off is the first hurdle, cleaning is the second, fresh nappy third, removing the sheet beneath her the fourth. There is no help. I’m not that strong, but I have to clean her up somehow and I do and I am knackered.
So today, whilst sitting waiting for the next seizure, I will try not to feel sorry for myself or for Daisy. Yes, it’s shit. Yes, the next 2 or 3 days will be shit but d’you know what, it’s a card we’ve been dealt, we live in a shit world.
So, as I’m sitting, holding Roo and listening to Will Young on the radio I’ll leave these words …………..
“Eyes, like a sunrise,
Like a rainfall
Down my soul
And I wonder,
I wonder why you look at me like that
What you’re thinking, what’s behind
Don’t tell me but it feels like love………..
I’m gonna take this moment and make it last forever
I’m gonna give my heart away and pray we stay together
‘Cause you’re the one good reason
You’re the only girl that I need
“cause you’re more beautiful than I have ever seen
I’m gonna take this night
and make it evergreen.
Damn you and your lyrics Mr Young!