Rachel House is for brothers and sisters too
 Olivia is a five-year-old whirlwind with a mop of fair hair and a Snow White dress. Mum Ruth says she spins between “being lovely and a spoilt brat” at the flick of a switch — not unusual in five-year-olds, but Olivia has more reason than most.
Since she was three, circumstances have meant she’s had to take second place in the attention stakes to her wee brother — a smiling, contented bundle named Edward.
The two-year-old has Pallister Killian Syndrome, a devastating condition which has robbed him of the ability to communicate and which means he won’t survive into adulthood.
Brain damaged
Edward is almost blind and has only recently been able to hear a little after being fitted with a hearing aid. He can’t sit up by himself — although Ruth is hopeful he soon will — and is brain damaged. He needs 24-hour care and every bit of attention Ruth can give. Inevitably, that can sometimes leave Olivia missing out on her share of Mum’s time.
“It is really difficult for her,” says Ruth. “She’s had to put up with a lot for a child so young. She’s great with Edward although she switches between either ignoring him or smothering him in kisses.
“Usually it’s a case of ‘Oh, it’s just Edward’.
“She’s aware of all the attention he gets and it has made her more demanding. She probably thinks she’s in second place because I have to give so much time to Edward. It does make her attention-seeking but I understand why. Although sometimes that doesn’t make it any easier!
“I have to make the effort to let her know she’s just as important.
“After school, between three and seven, is Olivia’s time. That said, she’s very independent and quite capable of entertaining herself.”
I was chatting to Ruth in the quiet room at Rachel House when the door burst open and in flew Olivia. She needed a certain dress out of the car and she needed it NOW.
Compromise
Ruth calmly told her she’d have to wait because Mum was talking, but she could have the car keys if another adult would get the bag.
The compromise was agreed — a regular necessity.
When we think of children like Edward it’s easy to forget just how hard it is, not just for them, but for those around them. Everyone in the family of a child with a life-limiting condition has to compromise. It becomes their way of life.
Sleep is a luxury in the McMahons’ Bo’ness home. “Edward doesn’t sleep much and the monitor he’s attached to never does. Sometimes he forgets to breathe and it wakes me up. If I get a couple of hours at a time then I’m lucky, some nights I get none.
“It’s very tiring. Some mornings Olivia just has to say something and I go off at her. Then I have to remember it’s not her fault.”
The solution to the sleep problem and Olivia’s need for attention is one and the same — Rachel House.
“As soon as I turn into the drive, my shoulders relax and I know things are okay.
“It’s him sleeping downstairs and me sleeping upstairs. It’s knowing I can tiptoe into his room at three in the morning and it’s knowing I don’t have to.
Biscuits
“It’s the difference between waking up when you want, not when you are woken. It’s knowing he’s being looked after better than you could do yourself.
“For Olivia it means she can stay up late, it’s biscuits, it’s time for her. I never see her when we’re at Rachel House — she just loves it. It’s ‘Bye Mum, off to see so-and-so’. Even knowing Rachel House is just a few weeks away means so much to all of us.”
Neither Ruth nor Edward’s doctors know how long he will live. Ruth has stopped asking. The nature of his condition means it’s different in every child and although Ruth was told he might not survive his first week, now he might live to be 12 or 15.
“I’m aiming for 15 and I’m not going to worry again till he’s 11,” she says.
The milestones of Edward’s progress are further apart than a healthy child’s, but all the more precious because of that. He was well over a year before he first smiled, but now he’s got the hang of it there’s no stopping him.
“Olivia can’t understand why Edward smiles but doesn’t laugh,” Ruth tells me. “I explain it’s because he hasn’t been able to hear us laugh and doesn’t know what to do. Now he has his hearing aid, I’m hopeful that will follow. He has such a good nature though and seems to accept things. He very rarely cries and when he does, a cuddle sets him right every time.”
Smiles without laughter, suffering without tears, nights without sleep. It isn’t easy for wee brothers, big sisters or mums.
But Rachel House makes it a bit easier — and that’s what matters.
Next
|
You can e-mail us at:
hospice@sundaypost.com
|
The love between Ruth, Olivia and Edward 
