Beacon provides bright spots

Once a week Napier woman Phyllipa Warner is able to take a break and enjoy the care, hospitality and company at Rowan@thebeacon. Her life was turned upside down in January last year and has been tough, physically and mentally, since.

But places like the Beacon are a spark in life. She spoke with Roger Moroney

More than almost anything, Phyllipa Warner would love to lift her little boy Jakob and give him a big, strong cuddle.

But she can't.

Her husband, James, can place their little man in her lap and she can wrap her arms around him, but that's about it.

Or, as she says, "He's a great little climber," and he climbs up to her. Phyllipa is paralysed from the chest down.

The 28-year Napier mum also suffers a vision impairment, and it would be a major understatement to say life is not easy.

From her wheelchair, "Pip" said there were good days and there were not so good days.

But, as she stoically accepts, the bottom line is that things are as they are and that is the way of it.

Life has to go on, and she and James, and Jakob, have to make the best of things.

And things aren't easy as they await news from Housing New Zealand and ACC that the house they desperately need to move into from their cramped current flat, is ready.

Her life changed forever when she gave birth to Jakob, who is now 20 months old.

She and James were delighted to get the news that they would be starting a family, and her pregnancy went well.

It was during labour that things began to become anything but smooth.

There were signs the baby was in some distress, so it was determined she would undergo a caesarean.

Pip said she wanted to be awake and aware when little Jakob arrived, so decided to have a spinal block rather than a full anaesthetic.

Jakob came into the world, and while he was placed in the special-care baby unit for observation, he was otherwise well.

But over the following days it became clear Pip was not.

She was hammered by severe headaches and her legs felt uncomfortable and sore.

It got worse, and the alarm bells rang big time when she collapsed and went into seizure.

The tests and scans began and the news was not good - there was fluid on the brain and it needed to be drained.

It was during the tests that specialists discovered something Pip had not been aware of - that she had been born with a condition which had caused the lower parts of her brain being displaced to the top of her spinal cord.

"But it's something thousands of people can be born with - they probably wouldn't know it and it wouldn't affect them," she said.

The spinal block injection had caused the spinal cord to swell with fluids. There was a cruel double whammy in that Pip also contracted arachnoiditis - an inflammation of the arachnoid membrane and spinal cord.

There was nerve damage, and Pip's strength in her legs began to dissolve after returning home.

"My legs were getting weaker and I had a walking frame to get around on."

One morning they simply stopped working.

She tried to get out of bed but simply could not stand ... There was no strength left and it was back to hospital.

Over just a matter of four months Pip went through five operations - three of them on her brain and two on her spine. She also spent time in a spinal unit.

The prognosis for the future is not a bright one, although she clings to some hope that the spasms in her left leg, and her ability to slightly twitch it, means there may be a glimmer, the merest of glimmers, that one day things might get better.

But it is the longest of longshots.

"Some signals get through but they're not strong."

Asked if she ever dreamed of running and playing with Jakob, she shook her head.

"I haven't had dreams - not on the drugs I'm on that help with spasms and nerve pain."

The couple said it had been tough trying to do a deal with several agencies, and felt let down at times.

They were still trying to get financial assistance, especially for James who had to quit his job to take on the role as caregiver.

They get care support for several hours a day, but he provides it at all other times.

"Life's not fair," Pip says.

"I'd be lost without James, but it's so hard on him ... and it shouldn't be."

James shrugged and said he'd lost contact with some mates and hadn't been out at night for more than a year, but his thoughts were on his wife and little Jakob.

He gets a break every now and then during the day, as does Pip when she is taken for her weekly visit to Rowen@the beacon on Napier Hill.

"They are good people and it is nice to get out," she said.

It is one of the bright spots of the week.

Another is getting a house with more space, and which can suit Pip's extensive needs, although they expect another struggle when it comes to getting it fitted out.

But Pip smiled and summed things up the best she could.

"You just have to get on with life - best you can."