One by one she wheels them into her living room. Three children, home from school. She lines them up in their wheelchairs, precisely, exactly side by side on the carpet facing the fireplace strung with Christmas stockings and a TV on the wall of their Niagara Falls home.
She does it this way, every day. Routine is important for everyone.
“Hello,” she calls out.
There is no obvious audible response but Amy Schaubel, 43, continues talking. “How was your day? Did you have a good day?” she asks the 11-year-old girl with a personality as fiery as her curly red hair.
She unzips and pulls off her coat and stuffs her winter hat into a sleeve.
The girl, born with a congenital brain malformation, used to scream at Amy to voice her needs. She has since learned to “vocalize in a nice tone.”
Soon she is asleep in her wheelchair, her head limp against a shoulder. Amy is good at reading the slightest of cues and she had already suspected something is awry. One by one, in a production line of clothing removal and equipment delivery, she greets each of them. An iPad goes to the first girl just in case she wakes up. The second girl likes watching TV. And a seven-year-old boy, the most agreeable and easy-going but with the most complex medical challenges, gets an iPad.
“I’m coming mister,” she says to him.
His jet black hair springs from beneath his winter toque and cascades freely in a carefree, I-need-a-haircut style. The boy likes swiping his hands over the screen, resulting in a cause-an-effect torrent of colourful pictures that scroll endlessly in a blur.
An oxygen tank and saturation monitor are attached to the back of his wheelchair. He lives with a neuromuscular disease and his breathing issues can be life-and-death.
“He crashes suddenly and quickly,” explains Amy. “You have about an hour before you lose him.”
Amy’s kids are non-verbal. They are all tube fed a liquid diet while they sleep at night and during the day at school. They are all incontinent. And they all have complex medical needs.
She calls them her children and in her heart, they are.
But to be accurate, they are not legally hers.
Amy is their foster mom.
Foster care is a temporary measure to give kids a safe, caring place to live until a more permanent solution is found, says Michelle Bernard, who oversees foster homes with Family and Children’s Services Niagara. That could include returning to their family — parents or extended family — or being adopted.
Amy is committed to caring for the children in her home, until there’s a permanent plan or they turn 18 and are eligible for adult services. She will miss them greatly when they leave, but like any children they deserve to move out and embrace independence, she says.
In Niagara, of the nearly 400 children in care, just seven have complex medical needs. Two live outside of Niagara because, simply put, there are not enough Amys, says Bernard.
There are two foster families in Niagara — and Amy is one of them — who care for medically fragile children.
In fact, the region is short on foster families overall and 72 children are living in communities outside of Niagara, typically in a group home. There are 138 foster families in Niagara, but some are occasional for respite only, and many others are getting older and retiring, she said.
Ideally, FACS would like another 40 families.
Amy started fostering in 2001, when her own two biological children were aged one and three. She took in a baby and a two-year-old brother.
“I always knew I wanted to be a foster parent,” she says. “I feel made for this.”
Her own parents fostered since before she was born. Amy remembers fighting with her two siblings over who would have the privilege of feeding the babies or pushing them in their strollers.
At first, Amy fostered mostly babies and some preschoolers. Then one day, FACS Niagara called. They had a baby girl, 10 weeks old with complex medical needs. She already had survived one open heart surgery and an operation on her lungs. She was being tube fed and couldn’t move her arms or legs. No one knew if she would progress, or even survive.
Amy had an empty bed. Would she consider taking the baby?
“I’ll go see her,” said Amy.
“She was all hooked up to equipment,” she says. “I walked in and she just looked at me and had this big smile on her face and I thought, ‘Well, I guess you’re coming home.’”
The baby spent six months of its first year in the hospital. “She died in my arms more than once,” says Amy. And yet as always, she opened her heart fully, with a vulnerable acceptance that eventually she’d endure the pain of letting go.
“I learned to love fiercely and to let go,” she says.
“I absolutely fall in love with them. I’m willing to hurt. I’m willing to give everything I have and hurt when they go.
“But I hurt knowing they were loved and cared for.”
Only, this particular baby never left. Amy adopted her just before her third birthday. She’s in Grade 7, severely developmentally disabled and the love of her life.
Since then, Amy has taken in more medically fragile babies, one by one until she had three.
They have given her life a calm focus. An appreciation of small accomplishments with big meaning. A refreshing definition of love and commitment. A good day happens when her children do not vomit. When they are comfortable in their wheelchairs. When they breathe well and are not sick.
Her night sleep is routinely disrupted to clean up vomit, massage legs, suction mucus and check on medical equipment monitoring important things like breathing and oxygen levels, sounding alarms in respective bedrooms.
Two summers back, she spent 58 consecutive days with them in hospital, returning home on occasion to see her own three children — ages 12, 17 and 19 — and attend a best friend’s birthday party. When friends invite her on a trip, she advises them: “Plan it and I’ll come last minute.” If someone is sick, she doesn’t go. FACS makes sure she has adequate respite and help at home from health experts such as nurses and personal support workers.
Indeed, it’s not for everyone, she says.
“You give up your time and your sleep and your friends,” she says. “You give up a lot.”
“This becomes what you do. You’re the piece that holds it together and you’re needed and you have to be OK with that.”
She holds no resentment. No grudge for the constraints placed on her life. This is her choice. She is a single mom, twice divorced. She is upfront about her life, an unwavering advocate for her children. In theory, she could walk away from the kids at any time. Quit fostering and let them go. And maybe, she muses, it’s that freedom of choice — even though she would never, ever contemplate leaving — that affords her a freedom of spirit to care for them deeply.
Amy turns her attention to the 10-year-old girl with the white knitted pom-pom hat. “I’m getting to you,” she assures her.
“Is it almost your birthday?” she continues, pulling off her hat and coat in similar fashion. She was born premature and lives with a damaged brain. He face is enveloped in a wide, easy smile as she watches Amy closely.
“She’s smart as a whip,” says Amy. “She misses nothing and understands everything.”
Attached to the left side of her wheelchair is a device that looks like an upside down white plastic cup. It’s a switch that attaches to a computer when the girl is at school. She presses her cheek against it to scroll and select words on a screen, and one by one, creates an audible sentence.
At home, she turns her head right for no, left for yes.
“Are you a princess?” asks Amy.
Head turn left.
“Are you a bum?”
Head turn right.
She relies on Amy to know what to ask.
Every morning and night, Amy gives each child medication by syringe into their feeding tubes. The girl knows precisely how many she gets — two in the morning, three at night. If one is missing — last week Amy started to wean her off a medication — the girl cries hysterically. On the other hand, her robust laughter energizes the house, should Amy bring out the wrong size diaper, or place her clothing in the wrong pile as she sorts laundry.
In a small room off the hallway, Amy prepares their medications. A chart on an inside cupboard door details dosages, but she has it all memorized. Tucked under the cupboard are nine plastic cups in three colours — pink, orange and blue — each hanging on matching silver hooks. Inside each cup, colour-coded for each child, she places syringes filled with medications for morning, afternoon and night.
“It’s never chaos,” she says, smiling. “The more people there are, the more organized I am because it’s demanded of me.
“I was made for this.
“I was made to take care of kids.”
She walks into a large shared bathroom. There’s an adult-sized countertop change table and drawers below that neatly hide the proliferation of medical paraphernalia. Equipment, medication and some other of their needs are paid for by FACS and government programs.
Each bedroom has a hospital bed, adjusted for comfort, protection in case of seizures and with heads raised because they’re prone to vomiting. There are ceiling lifts, but the process of connecting them to harnesses causes them distress, and she’d rather carry them from bed to counter to shower to wheelchair herself.
Strung along the top of the 10-year-old girl’s bed is a line of flashing Santa-faced ornaments that trumpet Christmas songs when a motion sensor is activated. Her body does not willingly do what her brain asks, so whenever she can co-ordinate her knee to hit the side of the bed hard enough to trigger the music (often in the middle of the night) her laughter is genuinely deserved.
In the boy’s bedroom, medals from school dangle from an IV pole, a blue Mario and Luigi comforter covers his bed and posters of superheroes decorate his walls.
Rewards are often serendipitous and profound, says Amy.
About a year ago, the boy was on Amy’s knee when she made a passing remark about his belly.
He promptly lifted up his shirt and displayed his bare tummy.
Amy was speechless. “I suddenly realized he understood what I was saying,” she says.
She wondered just how much he comprehended.
“Where are your eyes?” she asked.
His hand brushed against his eye.
“Where are your feet?” she continued.
He lifted up a foot.
“That day, I thought, you get it,” she says. “It was so exciting.”
And that’s her passion. The challenge. The learning. The love. The rewards.
“With normal kids, you just expect they’re going to walk and talk and eat and do all of those things,” she says.
“But with these guys, you’re rewarded every time the tiniest thing happens.
“When you work at something for months and months and they finally grasp it, you’re very, very rewarded.
“And I love that.”
Interested in being a foster parent?
Visit www.facsniagara.on.ca/foster or call 905-937-7731 or 1-888-937-7731.
