Alison’s so proud of her smiley little fighter
 Mum and daughter were welcomed into the hospice with the same warmth as every other family, but it was the last place Alison wanted to be. Staff told her they’d bought a cradle for Jade as they’d never had to take in a child so young before.
Ironically, it was the very same model of cradle Jade had waiting for her in her Airdrie home and it just made Alison think she’d never be in it.
As the evening wore on and the hours ticked towards midnight, Alison decided she simply couldn’t stay. “I thought if the worst was going to happen then I wanted to be with my family. I wanted both of us to be at home and we left.”
Thankfully Jade did see her first Christmas and the days, weeks and months slowly passed.
“Every night I went to bed and prayed she would be alive when I woke in the morning,” Alison remembers.
Seizures
Not that it became any easier for the wee mite. She suffered frequent seizures, every one life-threatening. She had no vocal or mobility skills and her doctors — while still not knowing what was wrong with her — said her brain would slowly degenerate.
For more than two years Alison was full-time carer and mum, spending 24 hours a day looking after her daughter without making use of the respite she and Jade desperately needed at Rachel House. She simply couldn’t bring herself to go back there.
“I know it was silly, but I was scared.
“In my mind Rachel House was a place where Jade would go to die, not a place she could go to and have fun.
“She had ‘survived’ going there once and I didn’t want to tempt fate by going back. I thought a bolt of lightning would strike us.
“Gillian, Jade’s carer from our first visit, kept asking me to go back and have another look. Eventually she wore me down and talked me into going up for a cup of tea.
“But even then I sat out in the grounds chatting and couldn’t bring myself to cross the front door.
“Gillian then persuaded me to go for one overnight stay, even though I was terrified.
“My mind was still scarred by that Christmas Eve.
“Once I was back, I realised how silly I’d been. I wish I’d gone back the next day rather than waiting two years.
“I now enjoy it there so much and really look forward to going.
“And, of course, Jade loves it.
Lots of friends
“She gets so much attention and has lots of friends — it’s so good for her rather than being stuck with me all the time. And I get to read a book, soak in a bath and get a good night’s sleep.
“Mind you, for the first few visits I followed the carers around, still not keen to let Jade out of my sight. It’s such a big thing entrusting total strangers with the most important thing in your life. But the staff are fantastic and I couldn’t have asked any more of them.”
Alison’s commitment to Jade is total. The few hours when she isn’t with her daughter — Jade attends the “excellent” Mavisbank School in Airdrie a couple of hours a day — is spent on finding ways to improve her quality of life.
She successfully argued with doctors to reduce the levels of drugs which were keeping Jade’s seizures at bay, but which were also keeping her doped up and drowsy.
The result is that Jade is now much more alert and responsive to people and sounds around her. A familiar voice or a cuddle brings a huge grin to her face.
Refused to accept
Alison also refused to accept a diagnosis made when Jade was one that she would never see properly. She read everything she could on ways of stimulating impaired vision and built a sensory corner in Jade’s bedroom, complete with UV lighting and sparkly objects to catch her eye.
Now, while her sight is still very poor, Jade can follow objects around the room.
Alison also took every course she could on being a carer so she could look after Jade to the best of her ability. It was one recent course that proved just how far she had come in her relationship of trust with Rachel House.
“I’d signed up for a one-day course with the Prince’s Trust but later realised it was on the same day Jade and I were to be at the hospice. I said I’d have to cancel the course, but the staff managed to convince me she would be just fine with them while I was away.
“I left Kinross first thing in the morning, drove back to Airdrie for the course and was back at Rachel House in time for tea. I could hardly believe I had done it, but the little besom hardly missed me,” she laughs.
“In fact I got a look from her that said ‘Oh, it’s you. I’m fine here, having fun’. It cut me to the bone, but it showed me how far we had both come.”
Jade was five last month and serious problems remain. Alison still recoils in horror at a blood vomiting attack in which Jade lost 50 per cent of her body fluids and went into kidney failure.
Doctors baffled
Doctors were examining her and telling her mum how it would be at least six months before her kidneys could operate properly again — and as they did so, Jade wet her nappy. Her kidneys had somehow repaired themselves.
Not surprisingly, her doctors are baffled by Jade and they still don’t know what’s wrong with her. That frustrates Alison, but she knows they are doing everything they can for her.
She’s proud of her smiley little fighter and so relieved that her last major seizure was two years ago. She is even daring to look ahead.
“It’s always in the back of my mind that I could lose her any day, but I now allow myself to look ahead a year, even two and make plans.
“I’m not kidding myself but I can see progress in her and that’s what keeps us both going. If I get a smile from Jade every day then I know she’s all right.”
Jade is full of smiles and Alison is full of hope. Let’s hope there’s plenty more of both. |
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If Alison gets a smile from Jade, 
