For the love of Aimee
Resuscitate
 Nor is the horror of Battens confined to premature death. Within a few months of diagnosis, Aimee lost the ability to see and walk and before long found it difficult to communicate at all. Her breathing could stop at any time and she was prone to seizures.
Things were so bad that Pauline and Tam made the heartbreaking decision to not resuscitate Aimee if the worst came to the worst.
“The first time it happened we were saying, ‘do anything to keep her alive’,” explains Pauline. “But we saw her struggle so much we realised it wasn’t right.
If she is ventilated she might come back worse and it just wouldn’t be fair on her. We’d be keeping her alive for our sake, not hers.”
When we last spoke to the Galloways, Aimee had just come through her fifth Christmas — her mum doubted she’d see another.
Yet Aimee battled on, even picked up and was great for months at a time.
The scares became fewer, her condition settled and Aimee seemed happier. Against the odds, she saw her sixth Christmas. Then her seventh.
Not being able to communicate directly doesn’t mean you can’t let those you love know when you’re happy. Rare smiles are all the more precious and mum, dad, brothers David and Keirron and wee sister Georgia were never in doubt when Aimee was enjoying herself.
Jacuzzi
Top of the list for providing smiles? “Her Jacuzzi,” says Tam. “A real water baby.”
Also, a soft bird toy that sang when squeezed, trips to Disney World, her favourite songs, her swing. Little pleasures and rare treats. “Most of all, she’s happy when you cuddle her and give her attention,” says Pauline. Simple things to make a wee girl smile.
Although going to Rachel House every eight weeks, Aimee was rarely able to join the regular outings from the hospice as she wasn’t quite up to it.
However on a Wednesday late in December, Aimee was well enough to go to the Extra Special Children’s Christmas Party at RAF Leuchars. Everyone was entertained by Santa and his elves, skydivers and the like.
Mountain rescue teams were there too and their dogs were introduced to the children. One friendly collie went round all of them to say hello, but when it got to Aimee it just stayed put. “The Rachel House staff told me the dog stuck like glue to Aimee and refused to budge,” remembers Pauline.
Santa did the rounds too, asking the children what they wanted for Christmas. When he got to Aimee, one of the carers said to Santa, “She can’t tell you herself what she wants but if you concentrate hard enough, I’m sure Aimee will let you know what she really wishes for.”
No warning
When the party was over, they returned to Rachel House where Aimee was greeted by Pauline who had been at the cinema for the afternoon with some of the other mums.
Within hours, Aimee was dead.
In the end there was no warning, no days or weeks of pain and worry. Instead, the end came quickly.
“I noticed there was something wrong with her breathing,” says Pauline. “That wasn’t too unusual but it made me check on her and her stomach was really distended. That required suction to clear fluids, but only blood was coming up.
“Usually when I put the tube down her throat she’d screw her face up but there was nothing.
“Then she suddenly stopped breathing and I just freaked.
“Everything we had agreed went out of the window and I wanted them to resuscitate Aimee. But Doctor Pat calmed me down and told me, ‘Look at her, Pauline. She’s peaceful. It’s what you wanted. Just hold her. Cuddle her and tell her you love her.”
Slipped away
Pauline lifted Aimee to her knee and held her until she slipped away.
“We’d had friends whose children had died and always thought Aimee would be ill for a while before she went and we’d have time to prepare ourselves and have family around.
“But it was so sudden even Tam wasn’t there, as he’d been at home looking after the other kids.”
At 23 minutes after midnight, Aimee died. Tam got there an hour later.
Three years ago, Pauline told me she really hoped that when Aimee’s time came it would be at Rachel House. It was where she knew she and the family would be given time to grieve.
“They gave us as long as we wanted, everything was done in our time. They did so much — without them and our families, we’d never have coped. They made all the phone calls and arrangements and they’ve been in touch since the funeral just making sure we’re okay. Rachel House has meant so much to us and that’s still the case.”
Pauline fiercely rejects any suggestion life might be easier now she doesn’t have to look after Aimee 24 hours a day. That could never be the way she sees it. “Living with Aimee was a privilege, not a burden,” insists Pauline. “She was so special in her own way. She never asked for anything out of life. It’s just so hard because she’s not here.
Happy
“We had such good times. I remember her so happy on our wedding day two years ago. She was so pleased in her dress and was like ‘look at me’. She was a right wee princess and had a great day.
“I ache for a cuddle from her. It’s hell on earth. Everything has changed.”
“I’m trying to look at the positive side,” added Tam, unconvincingly.
“I’m just glad she went peacefully and that she was at Rachel House. I’m glad there’s no more pain for Aimee, no more medicines, no more suction pump.
There’s plenty of pain for us but no more for her.”
Right now, Tam and Pauline are in a bad way. People might think Aimee’s death might be a bit easier to take because they had so long to get used to the idea, but although Tam says he understands why they’d think that, nothing could be further from the truth.
Your children aren’t supposed to die before you. No matter how much warning you may have, no-one can be expected to cope with that.
“I like to think Aimee had said to Santa she just wished for an end to it all, that she wanted to be at peace,” says Pauline. “I do believe she is in a better place.
“We’ll never get over Aimee’s death. We don’t want to get over it. But I suppose we’ll eventually learn to live with it.” |
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hospice@sundaypost.com
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The family’s favourite photo of Aimee.
