Emma Hill would like to be alone.
Not forever. Just once in a while. Between the nurses, doctors, bus drivers, personal support workers, family members, and round-the-clock care, the 17-year-old doesn’t have a minute to herself.
“It’s really tough,” Emma told HuffPost Canada, and her mother, Christine Hill, couldn’t agree more. It’s just one of many issues the pair from Newmarket, Ont. navigate as a Canadian family dealing with complex health needs.
Emma and her three siblings have Leigh Syndrome, a mitochondrial disease which involves multi-systemic failure. Before they were diagnosed, Emma became gravely ill and went into a coma in 2011.
Since then, Emma and Christine’s relationship has changed. As Emma grows up, the teen is figuring out who she is in the world, while managing her health and standing up for youth with rare conditions as a disability ambassador.
Christine has learned to juggle the roles of caregiver, health-care navigator, and accessibility advocate, all aside from being a single mom raising teenagers and working a full-time job.
Here’s how this Canadian family thrives, as well as keeps their mental and financial worries in check:
Scheduling takes master juggling
Kids who need chronic care often get it in fragments, a report by the Canadian Association of Paediatric Health Centres (CAPHC) finds, with multiple points of contact in the health care system. That means the onus is usually on families to track all the specialists kids see and enlist them in the right programs, as well as knowing where people are at all times.
Hard decisions often need to be made. Christine notes that often there’s only so much parents can plan; unexpected situations like a bad health day might mean Emma misses school or can’t attend something she’s looking forward to. And because the family needs to prioritize health-related tasks, social obligations tend to take a backseat. This makes it hard for Emma to stay in touch with friends and to form deeper bonds with her peers.
“I’m not as available and my priorities really shifted when my kids became sick,” Christine said.
It can be easy to feel overwhelmed. Christine recommends parents find systems that work for them. For some, this might look like streamlining. Writing for the Washington Post, mother of four Jamie Davis Smith says she stores her kids’ medical records on her phone. This ease of access helps in emergency situations, and avoid slow communication hurdles.
Advocacy is part of being independent
“You poor thing” and similar statements can be frustrating for the Hill family to hear.
“There’s no question our circumstances are unfortunate and we want something more typical, but we don’t want that kind of saccharine [reaction],” Christine said.
They also don’t appreciate it when people talk over Emma, belittle her, or decide Christine should be addressed instead.
Watch: Disability rights advocates point out problem with banning plastic straws. Story continues below.
That’s why it’s been important for Christine to impart self-advocacy skills to her daughter and emphasize Emma’s authority over her own health.
“Your opinion matters more than mine. I have the most experience with supporting disabilities, not living with disabilities. The real professional on living with your condition is you,” Christine told Emma.
For Emma, this lesson really sinks in when her mom turns to her to take charge when they’re in encounters when Emma should voice her likes and dislikes.
“That gives me a chance to make up my mind and say what I’m feeling,” she said.
It’s really expensive
It costs around $13,300 annually to raise an able-bodied Canadian child, according to MoneySense in 2015; calculated for different lifestyles and adjusted for inflation, a post by MapleMoney blogger Tom Drake roughly estimates that the yearly cost might be as little as $8,100 or as much as around $12,500.
It’s far more expensive to raise kids with medical issues. Medication, equipment, travel, and staff wages are just a few expenses a family may shoulder. Much of family caregiving is unpaid, but time off work adds up, too.
Financial assistance is often essential for families to get by. When Emma first got sick, she couldn’t open and close her eyes without assistance. Speaking was a no-go, too. She wasn’t well enough to live at home. Her classmates sold buttons to financially support the Hill family as they made their home accessible for her wheelchair and a crowdfunding campaign raised money to help with the 24-hour care she requires.
Another source of support for the Hills has been Holland Bloorview Kids Rehabilitation Hospital, where Emma is a regular. For Christine, awareness fundraisers like the hospital’s annual Capes for Kids campaign are important because they help raise money for programs and services her family accesses constantly.
She hopes that awareness goes in two directions: towards Canadians who don’t know how much of a difference they can make by helping the hospital, as well as towards families like hers that haven’t heard about resources like the hospital’s Family Support Fund that can alleviate their financial strain.
“People just don’t know and it concerns me. There’s so much offered and I’m not sure all families are aware of that,” Christine said.
Everyone’s mental health needs to be cared for
Constant exhaustion and anxiety can take a toll on a parent’s mental health. Those experiencing caregiver stress may develop depression, anxiety, or PTSD symptoms. A government-funded project on Canadian caregivers notes that medical crises can lead to a parent experiencing nightmares and flashbacks.
Recognizing that she was at a breaking point with her stress and anxiety, Christine made the decision to take two years of mental health leave from work.
“It was too much for me to bear,” Christine said. “It was really upsetting to discover my kids were diagnosed and there’s no effective treatments. It was a really hard pill to swallow.”
For Emma, finding time to herself remains a problem. However, she relishes the social connections she does have. While she doesn’t have a clique at school, Emma says she’s found a sense of belonging as a “floater” who is accepted by everyone.
“It’s super fun, I’ve got friends in different places. It’s good because I’ve got people everywhere and it really helps,” Emma said.
For Christine and Emma, open communication is key to making sure everyone feels heard and kept updated on the signs of stress.
“You deal with what’s in front of you. Sometimes you do well and sometimes you don’t … just never in isolation,” Christine said.
Looking for caregiver support? Ontario parents seeking support and resources can call a 24/7 helpline, run by the Ontario Caregiver Organization.
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