Mum Alison Thorpe with 15-year-old daughter Katie
Mum Alison Thorpe has a thumping headache and is down with exhaustion caused by too many broken nights – 15 years’ worth to be exact. All she wants to do is lie in a darkened room and sleep, but that’s not possible when you have a child as profoundly disabled as her daughter Katie. Instead, Alison looks at the clock and listens out for the sound of the taxi bringing Katie, 15, home from her special school.
As it trundles up the gravel drive, she leaps up, her own discomfort instantly forgotten.
Katie’s wheelchair is manoeuvred into the kitchen and Alison prepares her ‘tea’ – a thick, ready-made formula pumped directly into her stomach via a tube. Katie stares into space, showing no response to Alison’s affectionate chatter.
“Have you been swimming today?” asks Alison, ruffling Katie’s hair before wiping some dribble from her chin. “Your hair’s all flat.”
Katie’s breathing sounds a bit raspy and Alison frets that she is coming down with a cold.
Alison frets a lot about Katie. Always has done. A cold could kill her and Alison doesn’t like to think of life without her – no matter how hard and unrewarding it may be.
There are times when I feel I can’t cope any more.
“The lack of sleep is the worst thing. Katie needs 24-hour care and sometimes we are up 20 times in one night to tend to her. We are always on edge, because it would be so easy for Katie to choke on her own vomit or saliva in the night. But the love I feel for Katie is unconditional and I just couldn’t imagine life without her. I wouldn’t know what to do with myself. She is the centre of this family. We all revolve around her. Her needs always come first.”
She sits quietly in her wheelchair, which, her family says, means she happy and comfortable. Often when she isn’t, her body jerks in spasms and she emits high-pitched screams or constant low moaning – a sign of some distress or pain which she cannot communicate to Alison.
She can’t walk, can’t talk, can’t eat normally and is doubly incontinent. She doesn’t like to be cuddled or comforted and goes rigid if held. She isn’t even aware Alison is her ‘mummy’.
Alison sometimes gets up 20 times a night to tend to her beloved daughter. Caring for a special child can be an humbling experience.
Piles of unironed laundry cover almost every surface because trying to keep up with it is as futile as holding back the sea.
Katie often has to be changed twice in the night and the bed stripped because ‘accidents’ are a fact of life.
Her special bed, designed to stop her thrashing around or falling out, is surrounded by mobiles, wind-chimes and twinkling coloured lights, because sights and sounds are among her few pleasures
Alison knew instinctively from the start there was something seriously wrong, but doctors were unable to tell her how bad the brain damage was.
“That was when I shed all my tears. When I brought Katie home she screamed for 22 hours out of 24.
“She wouldn’t feed and refused to be comforted, going rigid in my arms,” says Alison.
“I couldn’t go anywhere with her or mix with other mothers. I felt depressed and isolated, I became almost suicidal. I felt my life was over and nothing would ever be the same.”
“Katie is special,” says Peter, Alison’s partner of 7 years. “Helping to care for her has made me value life so much more. Alison always made it clear Katie came first and it’s the same for me. Katie is the heart and soul of this family.”
Because of the quality of care Alison and Peter have given, with the help of carers, Katie’s life expectancy has now risen to 25-30. She attends a ‘teenage club’ once a week and is regularly taken on outings to stimulate her.