CHAPTER 1
I hear a scream and i climb out of bed, I'm not alarmed because i know it's mum, she's always crying out in her sleep. I look at the clock and sigh, it's 1am. I walk into her room and I can hear her whimpering
"Mum?" I whisper quietly, "Mum, are you awake?"
I gently put my hand on her shoulder, "I'm here mum, its ok."
"Emma?" she whispers, "what time is it?"
"I don't know, I can't see the clock" I lie, "Would you like something for the pain?"
"Yes, can you get me some Panadol?" she asks.
I sigh, "Mum, Panadol won't stop the pain, i'll get you a Tremol, okay?"
"No, it makes me tired"
"You need sleep, I'll be right back"
"Can you turn on the light?"
"Sure"
Out in the kitchen I pour her a drink of water and get one Tremol and a Panadol. I pick up the glass and carry it back up to her room. I can see her trying to sit up so I speed up, place everything on the bedside table and lean down so i can lift her into a sitting position. I give her the glass of water and ask her to open her hand for the pain medication.
She squints at the pills I've put in her hand, "what is it?" she asks
I point to each of them and name them. She places them in her mouth and follows with a long drink of water.
I smile at her. "You should sleep better now"
I lift her legs back into the bed and slowly lean her back down. I kiss her on the cheek and wish her goodnight.
I'm almost out of her room when I hear her ask "Did I wake you?"
I pause, just as I'm about to turn off the light "No. You didn't wake me."
I know how guilty she feels when she thinks she's inconveniencing us, she thinks she's a burden on dad and I. But she isn't. She'll never be a burden.
I turn off the light and go back to my room. I sit quietly on my bed but I don't go back to sleep. It's been 9 years since she's been ill and it's only been 6 months since she's been properly diagnosed with a rare case of Stiff-Person Syndrome.
I remember being seven when my father lied me down on the bed and rolled me onto my left side, he said "If mummy ever has a seizure, this is what you have to do. Do you understand?"
I didn't. I never really comprehended what was going on, I just accepted it. I never asked why she was hospitalised for 2weeks every month for years; it just had to be done.
For years I've been accompanying mum to the constant visits to the doctors and to hospitals for blood tests, MRI's, Blood patches, numerous Lumbar punctures, a brain Biopsy and treatments. She's been constantly in and out of a wheelchair depending on her good and bad days.
Through my childhood, this is what I considered normal. Since I was eight I've been cooking, cleaning and getting my mum's medication through different hours of the night and when I'm not at school. After numerous surgeries, I've helped her shower and dress herself. Nobody asks me to do it; it's just what's expected.
I lay down on my bed and cry, I'm always crying now. I cry because I feel guilty, because it's not fair that I can do everything that mum cant. I'm sixteen now and it's only recently that I've realised that one day mum is going to hospital and she isn't coming home. I know that there's nothing I can do but watch her slowly deteriorate.
