PICTOU LANDING – Two days after Jeremy Meawasige was born his mother picked him up into her arms and gently kissed him on the forehead.
“It’s me and you against the world,” she whispered to him.
He was still in hospital and she watched as the medical workers wheeled him in to the operating room.
At two days old they faced life’s first challenge. Hydrocephalus was causing extra fluid to build up in his brain and a shunt would need to be inserted by a surgeon to relieve the condition.
As Maurina Beadle, a single mother, watched her youngest of two sons taken into surgery, she didn’t realize how true her words would be 16 years later as she fights to keep her son with her, in their home.
As Jeremy grew Beadle learned that, not only would he have a permanent shunt in the lumbar area of his spine, she would have to cope with Jeremy’s cerebral palsy, autism and spinal curvature.
Beadle has to do everything for Jeremy: bathe him, dress him, spoon-feed him and change his diaper. She is on call 24 hours a day.
“I never considered putting him in any kind of home,” she said. “I thought my life was simpler just being with him.”
Since Jeremy was a toddler, the beach has been his favourite place. Beadle used the sunny days by the sea to strengthen Jeremy’s body, her own version of physio and occupational therapy.
Beadle would extend her index fingers for Jeremy to grab onto and push himself up. Beadle repeated the process and soon his legs were strong enough for him to stand on his own.
She said would get down on the sand with Jeremy and commando crawl with him to build is upper body strength. Beadle also learned massage technique to relax Jeremy’s muscles.
This type of care would continue for years.
“Some people would find it difficult but for me I find it easy because I’ve been doing it for so many years,” said Beadle. “It’s nothing for me.”
Then things changed for Beadle last spring when she suffered a stroke. She returned home from the hospital in a wheelchair and the Pictou Landing First Nations band council sent workers to assist in Jeremy’s care.
“If I didn’t have a stroke right now we wouldn’t be at home,” said Beadle. “We would be doing anything and everything.”
Since her stroke, care workers, paid for by the Pictou Landing band, have been assisting with Jeremy. Beadle’s own recovery is progressing. She is out of the wheelchair but still walks with a cane and still requires help.
The band’s programs Home Community Care and Assisted Living, which serve the entire communities needs, is strapped for cash and providing Jeremy care in the future is becoming more and more less secure, said Pictou Landing Health Director, Phillippa Pictou.
Pictou and Beadle are currently seeking government funding to keep Jeremy with Beadle. It is estimated it will cost $5,000 to $6,000 a month to have the proper care for Jeremy. Both federal and provincial government have determined, off the reserve, they would provide $2,200 a month for care, above that, a child would be institutionalized.
“It is never going to come to that,” said Beadle. “The only time that anyone can touch Jeremy is over my dead body.”
Beadle’s house is typical, but there is no sign of the wheelchair, or the walker or cane she would use later. She sits on her back porch, on a swing, smoking a cigarette telling her story while care workers wash and feed him before his photo was taken.
“Jeremy is my number-one guy,” she said. “He may not talk, he may not walk, but once you get to know him he’s a normal child.”