Zak’s mum had just finished taping up a fresh diaper for him when the doorbell rang. She smoothed down the last tab against the crinkly material and left the room for a moment. Zak lay on his back, listening to the sound of the front door opening and then the muffle of voices as his mum spoke to the visitor.
‘Andrew. It’s so nice to see you again. How’s Jacob doing?’
‘He’s okay thanks. Look, I’m sorry to just turn up like this but I was wondering if I could come in for a moment to have a word?’
‘Of course, come in.’
The front door swung shut and Zak listened to the pair of footsteps approaching his room. He remembered meeting Jacob’s dad briefly at the hospital. He was one of those people who seemed to be perpetually exhausted. His hair was greying and needed a good brush and he had bags under his eyes as if he hadn’t had a proper sleep in years.
‘I’m sorry to barge in like this but I can’t think of anyone else to turn to,’ he said, hovering in the doorway while Zak’s mum pulled up his trousers over his bulky diaper and hooked the loops of his sling onto a hoist.
‘It’s no problem. What can we do for you?’
Andrew watched as Zak’s limp body was raised off the bed, his feet swinging as his mum positioned him over his wheelchair. ‘It must be hard work, caring for Zak on your own,’ he said.
'It’s not so bad. We keep each other company,’ said Zak’s mum, lifting his hands and placing them on the armrests of his chair. She clipped the harness over his chest and, instead of sliding the sling out from beneath him, tucked the sling down the sides of his chair.
Andrew watched the process with interest and more than a touch of apprehension. ‘I’m having some problems with Jacob,’ he said.
‘Complications from his surgery?’ asked Zak’s mum.
Andrew shook his head. ‘I don’t even know where to start. He says... he says he likes being in a wheelchair all the time and that once he gets his cast off he doesn’t want to start walking again.’
Zak’s mum looking thoughtful for a moment. ‘I think we should get you a cup of tea,’ she said finally. Taking hold of Zak’s wheelchair she carefully navigated her way through to the kitchen. Parking him at the table she gestured for Andrew to sit and flicked on the kettle. ‘Tell me more,’ she said.
Andrew stared down at the grain if the table as if embarrassed by what he was about to say. ‘I took Jake to the hospital the other day for a check up. They said he could get his cast off in a few weeks. I thought he’d be happy so I took him out for lunch at MacDonalds afterwards. While we were there he said that he didn’t want to walk again. He told me he wished he’d been paralysed, just like Zak.’
Zak’s mum poured out two cups of tea. ‘You told me that Jacob had been in a car accident, is that right?’
'What happened exactly?’
‘Jake says he was walking to school and he decided to cross the road. He says he looked one way and started to walk and he didn’t see the car coming the other way.’
'And is that what you think happened?’
Andrew shook his head. ‘From what the police told me I knew something didn’t add up. They said witnesses saw Jake waiting at the side of the road and then dashing into the path of the car.’
'So this was a deliberate attempt to hurt himself?’
Andrew buried his face in his hands. ‘I can’t see it any other way. I’m so afraid. He could have been killed. What if he tries to do it again? I want to help him but I don’t now how.’
'It sounds like this is something Jacob has been thinking about for a while.’
‘He’s always been fascinated with medical stuff. He loves watching casualty and his favourite movie is one about a kid in wheelchair. He always seems to be getting into bumps and scrapes and asking to go to the doctor but... I never thought he’d do anything like this.’
Zak’s mum set down her cup on the table. ‘And what do you think about him wanting to be paralysed.’
‘I think about all the kids, kids like Zak, who don’t have a choice. I don’t want to seem offensive, but I don’t know why someone would choose to live their life in a wheelchair.’
‘So you’re completely against the idea?’
Andrew hesitated. Zak’s mum slid her hand across the table and touched his arm reassuringly. ‘It’s okay,’ she said gently.
‘There... there’s been a part of me that’s enjoyed taking care of Jake. Helping him get dressed, feeding him, changing his diaper. It’s almost like he’s a baby again.’
‘I often feel the same way about Zak. It’s not easy raising a child with special needs but it can be very rewarding. You were right, it is hard sometimes to see Zak in his wheelchair, but I enjoy taking care of him,’ she said, looking at her son. Zak smiled back. The weird thing about being in a wheelchair was that people often had conversations around him that they would never have around another boy his age. He and his mum had never talked about why she was supportive of his choice to live as a quadriplegic, but he had always known it was something they both enjoyed. This was the first time he had heard her out her feelings into words. His mum held his gaze for a moment before turning back to Andrew.
‘Maybe it’s okay to explore Jacob’s needs for a while. This could just be a phase he moves on from but if not there are plenty of resources out there for parents of children who want to live a slightly different life.’
'I've been on a couple of forums and had a look around,’ said Andrew, nodding. ‘I just want to do what’s best for Jacob.’
Zak let out a low moan, and the two grown-ups turned towards him. ‘What is it honey?’ asked his mum. ‘Do you need something?’
Zak blinked yes, and looked down at the letter board taped to his tray. J-A-K-E-S-T-A-Y-H-E-R-E.
His mum smiled and rubbed his shoulder. ‘That’s a great idea. How about if you and Jacob come to stay here for a few days? We’ve got plenty of room and Jacob could see what it’s really like to live the way Zak does.’
For a moment Andrew looked taken aback by the offer. Then his haggard face broke into a smile. ‘That sounds wonderful. I’m sure he would love that.’
Zak grinned at them both. It looked like they were going to have guests to stay.
‘There’s a couple of things I should probably say,’ said his mum. ‘It’s about Zak and his own alternative lifestyle...’