Photography by Sandy Nicholson Image by: Photography by Sandy Nicholson
It's hard to imagine how a teen could muster up the courage to discuss her condition and its stigma before a national broad-cast audience. But when you look to her mother, who raised Ashley and nine other children with severe health challenges, it becomes easy to see where her fearlessness comes from.
"Adversity," Ashley said in her speech, "is not something to sidestep. It's life, and it cannot be overcome. It can only be accepted. When we meet adversity, we are changed. We are marked by a challenge, not stained by it." With that, the 16,000 people in attendance stood up and cheered.
How it all started
Kari didn't set out to be a foster mom. In fact, when she and her husband, Don, were younger, they were what Kari describes as a "yuppie couple" living in Ajax, Ont. They both made good money—she as a dental hygienist and Don, as a teacher—and knew they wanted children. Their first child, Kathryn, was born prematurely at 36 weeks with respiratory issues. Three years later, they welcomed Patrick. Born at 32 weeks, they were told he was legally blind and had a severe brain injury that resulted in quadriplegia.
"It was like, What are we going to do?" recalls Kari, who quit her job the day after a CT scan confirmed Patrick was severely brain damaged. She turned her focus to being a full-time mom, reading everything she could to learn how to best help her son. By the time Patrick was three, Kari and Don were finally beginning to feel that they had regained some sense of normalcy. They wanted more kids, but three miscarriages later, on the advice of their doctor, they decided to stop trying to conceive.
It was a difficult time, but Kari saw an obvious solution: fostering. Her own parents had been foster parents, adopting three of the 184 children they took into their Manitoulin Island, Ont., home over the span of 30 years. Having grown up with foster siblings who benefitted from her parents' loving care, Kari decided she would follow in their footsteps. "I was stuck at home anyway," she says. "We might as well take in kids who need a family."
Kari and Don's first foster child
It started with Noah. In 1996, around the time Kari was thinking about fostering, a young single mom was diagnosed with a brain tumour. The woman, who had come to Canada from Ethiopia, had a toddler and no relatives in the country to raise him after she was gone. Kari and Don took him in when he was three. His mother died shortly after, knowing the couple would raise Noah as their own.
A year later, they received a call from Children's Aid about a twin boy and girl who needed a home. Both were developmentally delayed, nonverbal and in wheelchairs. Chances were that they'd be split up. "You can't separate twins," Kari told Children's Aid. "We'll take them both." Her house was already wheelchair accessible, so the couple took Tiffany and Dylan in and began physiotherapy, teaching them how to read and walk unassisted.
Meanwhile, not too far away in Toronto, a woman had given birth to a girl, Ashley, who was born addicted to crack. Under the care of her birth mother, the infant had already suffered a fractured skull and broken jaw. Children's Aid placed Ashley in foster care and took her to The Hospital for Sick Children, where she was diagnosed with severe pneumonia. Weighing less than four pounds and in respiratory distress, Ashley struggled for each breath. Doctors decided to induce a coma, allowing her body to relax while the machines breathed for her. They discovered that Ashley was not only HIV-positive, but had AIDS.
On Oct. 2, 1998, Kari got the call. The Children's Aid worker told her that there was a six-month-old baby with AIDS who had recently come out of a coma. She had a month to live, and Children's Aid was looking for someone to offer palliative care. Kari's heart went out to the child, but she didn't think her husband would be on board. "I knew he was going to say no, because she was going to die in a month and that was going to hurt all of us. So I snuck down there and brought her home before he found out," recalls Kari with a laugh.
When she arrived at the hospital, she was shocked to find that Ashley weighed just eight pounds, three ounces. Her veins were visible through her translucent skin. The disease had pushed her viral load—the level of HIV in her blood—up to one million copies per millilitre. Kari felt terrible for this baby who was clearly dying. When she walked through the front door of her home with Ashley in her arms, something unusual happened. "I don't know what it was," says Kari. "I don't know if it was a voice or a feeling, but I felt a sense of peace. It said, ‘She's here. This is your baby. She's not going anywhere.'"
Though Don was skeptical about taking in a dying child, he says he fell in love with Ashley the first time he fed her. ("She is still very much a daddy's girl," says Don.) Every day they gave her bottles of formula with ritonavir, an anti-HIV drug that caused a burning sensation in her body. Tears streamed down her tiny face, and her little mouth gasped for air. But slowly, her viral load declined, her weight climbed and her health improved. The couple formally adopted Ashley at age three, when a judge terminated her birth parents' parental rights.
A growing family
Kari and Don continued to welcome more kids into their home. In 2000, they took in Carly, a 16-year-old girl with a beautiful smile and cerebral palsy, who uses a power wheelchair to get around. Too old to be considered a foster child and too young for adult services, the teen had nowhere to go. The couple didn't have any empty bedrooms in their house, but when they got the call, they emptied the furniture out of the living room to make a bedroom for her that day.
By then, Kari and Don had seven kids living with them in their modest 1,700-square-foot house. "We never planned on that," says Kari. "It just sort of happened. Then, all of a sudden, we had 10." There was Kay (name has been changed), the medically fragile girl who had been bounced around five foster homes by the age of five. Then 13-year-old Angel, a former foster child of Kari's parents, moved in because she wanted to stay in the family when they retired. Finally, Raven (now five), Kari's adoptive brother's son, joined the family as a newborn when neither of his birth parents could look after him.
To say they're a big family is an understatement, but the couple wouldn't want it any other way. "I think everybody was meant to be here and found their way here," Kari says of her kids, many of whom have stayed past 18, the upper age of foster care. Kari doesn't differentiate between her biological, adopted and foster kids, either. "I don't like labelling people," she says. "We're all a family, and no one in the family has any less of a role."
Kari's attitude has trickled down to her children, who all have a special love for their siblings. She recalls overhearing someone ask Patrick, who experiences excruciating pain as a result of his cerebral palsy, whether he would change his life if he could. "He said, ‘All of my brothers and sisters are here because I was born with cerebral palsy. And I wouldn't trade anything for them.'" When asked to explain, he says, "You learn from the stuff you go through, the amount of crap that you put up with. It makes you stronger as a person."
Over the years, there has been a lot to deal with. Family deaths, teenage tempers and medical crises have made them stronger, not just as individuals, but as a family. When Ashley was five and just 23 pounds, some of her siblings would help change her feeding tube. And in 2010, when Ashley learned that her birth mother, whom she had kept in contact with, had died in a fire, Noah, who lost his own birth mother, helped her get through it.
Living with AIDS
Today, Ashley is a typical 16-year-old. The smiling girl with long brown hair and berry lipstick likes to sing and watch funny YouTube videos. Her aqua-coloured bedroom is peppered with posters of One Direction, pictures of the Eiffel Tower (she's obsessed with Paris, where most of the family vacationed this past August) and certificates in honour of the money she's raised by singing and speaking at various children's hospital fundraisers.
But unlike other 16-year-olds, Ashley is well educated about viral loads and her CD4 counts (a measure of the cells targeted and destroyed by HIV), and she takes medication daily. Fortunately, she has had an undetectable viral load for a few years, which means she can fight off infection almost as well as someone without HIV. But even a simple health hurdle like her recent dental surgery can compromise her immune system. Overall, she counts herself lucky. "From an early age, my family said, ‘Don't be afraid to be yourself.' And I'm not," she says. That's why Ashley is comfortable enough to tell people she has AIDS. In fact, she has been open with friends about it since she was in third grade and has had mostly positive experiences speaking about it.
But not everyone has been so lucky. Ashley has met kids who have faced horrible discrimination for being HIV-positive or having AIDS—kids who have never been to a sleepover, kids who have had to change schools due to bullying, and kids who have been too afraid to tell anyone. Ashley says her friends often correct people who express concerns about how her health might affect them. She hopes that, by speaking out, she can help change people's attitudes and misconceptions.
A positive outlook
Growing up with parents who gave so much, Ashley and her siblings have learned the importance of giving back. In addition to speaking about her life, she is currently raising $10,000 to build a school in Kenya through Me to We. Her brothers and sisters volunteer and are becoming remarkable people in their own right. Kathryn, the firstborn, is studying to be a lawyer. Patrick has graduated high school and writes short stories in his spare time. Noah just graduated university with a degree in commerce. Ashley dreams of being a performer—she loves singing and acting. But she may have stumbled upon something more incredible than entertaining.
Ashley's We Day speech was posted on YouTube and received a couple thousand hits. It was a huge relief for her and her mom, since Ashley had only talked about the disease with her circle of friends up until that point. But the most special feedback she received was from HIV-positive people who felt emboldened to tell their own friends after hearing Ashley speak. "It was one of my best experiences when one of my close friends from Camp Moomba, a camp for children impacted by HIV-AIDS, messaged me on Facebook and said, ‘I told someone,'" says Ashley. "I realized that I had unknowingly helped him with that."
For Kari, the best part of being a mom is seeing her children progress and come into their own. "You start to see yourself in them, you see the results of your hard work and you just fall in love with them," she says. She felt it when watching Ashley speak that day. "It was like everything came together, and I thought, This is what she's here to do."
Being a parent of a special needs child comes with a unique set of ups and downs. One parent shares her journey.
|This story was originally titled "Her Mother's Daughter" in the November 2014 issue. |
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