Simon's Choice (13 page)

He wheeled Sarah towards the building, Melissa walking a few paces behind. The atmosphere between them was taut, but both were doing everything in their power to hide the friction from Sarah.

The threesome made their way from the small car park, past well kept flowerbeds, towards the entrance. A modern fountain on their left gurgled over a bed of smooth pebbles. Simon paused, as fond of water features as he knew his daughter was.

“Daddy, all the stones have writing on.”

Simon felt his heart thud downwards into his stomach, like an elevator plummeting down a lift shaft. Each pebble was named.

“Oh. Right let’s get going shall we?”

“No, Daddy, I want to see what they say – they’re names. And numbers.”

“Yes, they must be the names of all the people who live here.”

Melissa caught up, visibly blanching at the water feature.

“I think they might be the boys and girls who have died, Daddy. Look, they have dates on.”

Silence. What could they say?

“I’d like one of those pinkish ones when you do mine. The grey ones are boring. Ooh look, a cat.”

Simon and Melissa caught each other’s eyes, relief mixing with concern. Despite the friction, twelve years of marriage brings an ability to communicate without words. Sarah had always been an optimist. She was always bright and determined, but her attitude toward her impending demise seemed too casual, even for the indomitable Sarah Bailey.

“Are you okay?” Melissa asked Simon as she pressed the buzzer.

“Yup. You?”

“Yup.”

A woman with an astonishing shock of frazzled ginger hair, quite the most orange Simon had ever seen, opened the door with a grin. “Hello!” She greeted them enthusiastically, her positive energy infectious. “You must be the Baileys. We’ve been looking forward to meeting you. Come in, come in.” She ushered them into the building, beaming at Sarah as she was wheeled in.

The entrance hall was large and bright, carpeted in royal blue. In one corner an arrangement of beanbags surrounded a sunken fishpond covered with a mesh. This too had a small fountain in the middle, the gurgling water creating a soothing sound. Against this, a sound system played quiet music.
Enya
, thought Simon.

A couple of women, both wearing colorful flowing skirts, stood laughing and nursing big mugs of tea by a large pine desk. A baby, around 10 months old, speed crawled through the area, chased by a laughing girl of about nineteen and another older lady.

“Oscar’s off again, is he?” the ginger woman called. The women by the desk put down her tea and ran, laughing, after the baby. The ginger-haired lady turned back to the Baileys, grinning broadly. “That’s Oscar. He’s a little rascal. He corners at about thirty miles per hour. Lucky his mum’s so young; she’s about the only one that can catch him. I’m Rhonda, by the way. I’m the Administrations Director and Palliative Care Consultant, but you don’t need to know any of those boring bits. Rhonda will do fine.”

“Hi, Rhonda,” Melissa and Simon replied obediently, almost in union. There was something about Rhonda. One of those women you wouldn’t want to cross, but who made you feel entirely safe when she was being nice to you. Simon felt like a schoolboy for the second time that week. He felt relief mixed with only mild irritation. Someone else was in charge.

“I see you’ve discovered our fish pond, Sarah.” Rhonda followed Sarah’s gaze. Why don’t we go and have a look? Would you like that?”

“Sure,” Sarah replied. “How come it’s inside?”

“Because we all like to look at fish. There’s something very relaxing about them. But we don’t always want to be outside in the horrid rain, do we? So we decided to have a fishpond indoors. Why not? We can do anything we like, can’t we, Sarah?”

“Yes.” Sarah responded with gusto. The proposal of a life without rules instantly appealing to the sharp seven year old.

Rhonda smiled at Simon and took over guiding Sarah’s wheelchair. The action added to the impression that Rhonda was firmly in charge. “As you know, Madron House, or the Mad House as we like to call it …”

“That’s what I call it!” Sarah butted in.

“You are going to fit right in here, aren’t you? The Mad House was purpose built when the lease ended on our scruffy old place. So we got to build exactly what we wanted. All the kids gave their ideas, the mums and dads chipped in with their thoughts and this is what we got. Everything is designed to be fun and stimulating, but homely. We try to keep away from anything remotely ‘hospitally’. Most of our guests have had quite enough of hospitals, so we like to make this more comfortable. But with more fun stuff. Hey, Sarah, if you decide you’d like to be one of our family, we'll get you your own fish, which you can name. How about that?”

“Coool ...”

“Thought you’d like that.” Rhonda grinned conspiratorially at Simon. “Do you want to do the grand tour?

They set off down a wide corridor, following the same royal blue carpet. Rhonda continued to push Sarah, pointing things out as they went. “None of our staff wear uniforms. We encourage everyone to wear what they are comfortable in, even if that happens to be a rabbit costume! Believe me, it happens. Our staff are chosen not only for their clinical skills, but also for their irrepressible sense of fun. We like grown-ups who haven’t quite grown up yet.”

They turned left into another spacious room, domed by a glass roof that ensured the room was flooded with light. It appeared to be a large art studio, the walls lined with racks of plastic boxes, with labels such as ‘Play dough’, ‘Paper clips,’ and ‘Shredded paper’. “This is our messy room.” Rhonda waved at a family in one corner. “It’s kind of our art studio, but sometimes, when you just want to get down and dirty, this is where you come.”

The family in the corner waved back at Rhonda. A little girl, aged about two, Simon guessed, was seated in just a nappy on a large plastic mat on the floor. She squealed and giggled as her parents, apparently enjoying themselves just as much, squirted shaving foam all over her, great peaks forming a hat on her head. The tube leading from her nose to a gas tank nearby didn't seem to bother her at all. Simon could imagine the sensation of the mountains of shaving foam on bare skin and found himself chuckling along with the rest of the people in the room.

“That’s Kayleigh. Kayleigh has been with us since February. Her mum and dad are staying in one of our family flats at the moment, so they can be with her as much of the time as possible. They live over an hour away, so it’s a bit of a long trek for them.”

“What’s she got?” Sarah asked, characteristically loudly.

“Sarah!” Melissa shushed her.

“No, no – there is no stigma here in The Mad House. We respect each other’s privacy but we don’t shy away from the facts. Kayleigh has medullary thyroid cancer, Sarah. Like your illness, it’s very complicated. Kayleigh loves getting messy.” Rhonda turned to Kayleigh's mother. “We should make her up some jelly, Debbie. Does she have a favourite flavour? I’ll get some in at Cash and Carry. That’s one we haven’t done before isn’t it?”

Debbie, Kayleigh’s mother nodded. “Tastes better when she gets it in her mouth,” she said, laughing.

“Sensory stimulation is very important for our children. And we don’t care about having to get a mop and bucket or a hoover out here. The children can do all the things that they could have never done at their family home. We say ‘family home’ because this is a home too. Shall we see what else there is, Sarah?”

The group said goodbye to the ecstatic Kayleigh and her parents, and followed Rhonda back into the corridor.

They ducked their heads into another generous-sized room, the drums, keyboards and xylophones scattered around, immediately denoting its purpose.

“This is the Noisy Room – or music room if you like. Sometimes you just get the urge to bash a drum, don’t you? This is the place for that. It’s sound-proofed and we have a great Hi-Fi system, so the children can play any music they fancy as well. Shall we go on?”

Simon took over pushing Sarah down the corridor, taking her silence for approval. They turned a corner, and admired a charming garden on their left side. “Our garden. Not very nice weather today of course, but lovely in summer. We quite often have picnics. The pool you see there is a heated outdoor paddling pool. It actually goes up to an adults mid-thigh, so we have some great times splashing about when it’s sunny.”

“What about if you can’t walk?” Sarah sounded slightly down. “My legs are all wobbly at the moment.”

“You don’t need to walk to splash about, do you, Mum?” Rhonda had a knack, Simon noticed, of drawing people into conversations, including everyone.

“Ah, well, I suppose not.”

“No. You don’t.” Rhonda was brisk. “You can sit at the edge and splash, you can go in with one of our physios helping you, or better still, your parents can get in. You’d like that wouldn’t you, Mum and Dad?” Rhonda twinkled. “I’m sure we can get dad in his Speedos. Alternatively he might like to do the BBQ. We rely on the dads to do our BBQs in summer. Very popular, they are. Right. I think you might like this room, Sarah, from what I hear…”

They walked into another room, which stuck out into the garden area. A range of comfy chairs and beanbags ran along one side of the room, the other housed a number of large cages and hutches.

“Rabbits!” exclaimed Sarah.

“And guinea pigs, chinchillas … We’ve even got a pole-cat, but I wouldn’t stroke him.”

“Wow!”

“Just like sometimes we fancy making a mess or a noise, sometimes we want to be quiet and we find it’s even nicer being quiet when you have something to stroke. Actually, we have a lot of animals here. A couple of the nurses have dogs who are normally here when they are on shift and Fur-ball is our family cat. I haven’t seen her this morning actually, she may be on shift underneath the bird table. I’d better check on that. We also allow animals to visit.I believe you have a dog, Sarah.”

“Yeah – Podge. He’s called Porridge really. He can come and stay with me?”

“Well, not stay. But he can certainly come and visit you. Porridge is part of your family; it’s only fair that he knows where you are spending your time, isn’t it?”

Simon was impressed. Seriously impressed. His immediate thoughts had been on grounds of hygiene – how can you have cats and dogs in a hospice for crying out loud? But, as Rhonda said, this was more like a family home. What did it matter? The place looked impeccably clean. Simon understood the therapeutic qualities of animals. And for Sarah to be able to see Porridge? It was the most comforting thing he had heard in months. Porridge would be able to say goodbye.

Another lady put her head around the door. Simon recognised her as one of the women who had chased the baby. “Hi Rhonda. Is this Sarah by any chance?”

Sarah nodded and grinned at her. Totally relaxed, Simon noticed.

“I’m Fiona – I’m one of the nurses. I heard you were coming. Do you like animals?”

“Does she?” Melissa laughed, the sound startling Simon. It had been sometime since she had laughed. “She practically has fur.”

“Except on my head.” Sarah reminded everyone with a grin, though she had chosen a butchered Ben 10 pillowcase as a headscarf that day.

“Pah! We don’t set much store by hair here. We had a head painting competition the other month. Would you like to stay and play with some of the animals with me, Sarah? We can get the bunnies out and let them have a good run around on the floor. You can join me down here on the beanbags if you like.” Fiona opened a cage, pulling a beautiful soft brown, lop-eared bunny out. “Then we might find some chocolate ice-cream in the kitchen if you fancy it.”

“Okay!”

Rhonda stepped in then, as if on cue. “Mum and Dad, we can go and have a boring old cup of tea. Would that be alright, Sarah?”

“Yup!”

Fiona gently placed the bunny in Sarah’s lap. Simon and Melissa followed Ronda out of the room, leaving Sarah cooing in delight and admiration.

* * *

“I understand, from our telephone conversation last week, Simon, that Sarah does not know the entire truth about what is happening to her?”

Rhonda fiddled with a pencil, a clipboard on her knee, holding her notes. They had moved to her office. Like every other room, it was informal, though it had the requisite desk and filing cabinets. The tea was served in huge mugs, and Rhonda explained that all the family members with children in the hospice received their own cups with their name on.

“That’s changed.” Melissa interjected, her tone sharpening. “Sarah has now been told that she is going to die. Rather clumsily, I’m afraid. She asked my husband. She’s been told that …er, she’s been told that she’s going to heaven.” Simon received a look.

“Actually, we prefer the children to know. Most of them work it out on their own. We forget how perceptive young people are, even the very tiny ones. Many of them have lived with illness all their lives. They understand a lot of medical terminology and they pick up on the difference in conversation when treatment ceases. You’d be surprised how many actually ask. How is Sarah taking it?”

“Incredibly. Strangely. It’s unreal. She doesn’t seem worried at all, she’s so matter of fact.” Melissa glanced at Simon again.

“She did cry initially. But I gave her something to help her sleep and by the next morning she was just carrying on as usual. The only difference is that she’s keyed into the fact that it doesn’t matter if her teeth rot. Surely that’s not healthy?”

Rhonda laughed. “I think Sarah is a character. You can tell her she should brush her teeth because she doesn’t want to be smelly. But yes and no, to answer your question. Children have amazing self-preserving methods at their subconscious disposal. Little minds have an amazing power to shield themselves from situations that could cause them emotional damage. They can file away fear quite efficiently. Like a little filing cabinet in the back of the head. In children who have been abused for instance, they are quite capable of losing short-term memory and forgetting altogether. It allows them to carry on, to grow up. Problems arise when they get older and their filing cabinet is full – the drawers don’t shut properly and the pain from the past catches up with them. With Sarah, of course, there will be no growing up.” Rhonda looked up at the parents, her face kind but authorative. “I will apologize only once for my black and white way of dealing with this. I’m afraid we are here because Sarah is going to die. I appreciate that at this moment you are struggling terribly with this concept, but mincing our words and using fancy language to get around the truth will not help you in the end. We have an excellent counseling support system here for parents, but we will talk about that later.” She tapped the pencil on the edge of the clipboard. “Sarah is not going to grow up. If she is burying any fear then we will watch her very carefully to ensure that that is not doing her any emotional damage but, quite simply, it may be best for her. She probably doesn’t completely understand the concept of death. Children are usually told that they are going to heaven. As the day-to-day illness gets worse, most days are consumed with controlling pain and other symptoms. As you have seen, we spend all the rest of the time keeping the children happy and occupied. Some never mention that they are going to die. Others, like Sarah, are quite blasé.”