Latest Updates
Tampilkan postingan dengan label hospitalization. Tampilkan semua postingan
Tampilkan postingan dengan label hospitalization. Tampilkan semua postingan

This mom is a lifeline for inpatient parents

In 2006, Lies Ferriman’s 15-year-old son Sasha sustained a severe brain injury while snowboarding. He was in a coma for 10 days and spent seven months at Holland Bloorview in intensive rehab as both an inpatient and outpatient.

Five years later, Lies (above) became a family mentor at the hospital, sharing her firsthand experience with other parents of children who are inpatients.


“Holland Bloorview was like a lifeline when we were here,” Lies says. “So I wanted to give back to other families who are experiencing similar things. I want to impart the fact that you’re in this horrible situation at the moment, but it will get better. It will become a new normal.”

Once a week Lies and a family support specialist invite parents of children who are inpatients to meet in the Family Resource Centre. “We go onto the unit and knock on doors and introduce ourselves and invite them downstairs,” Lies says.

Each meeting is an opportunity to share practical information—like resources and funding available in the community—but also to talk about how families are coping with their child’s rehab and “to listen to any burning issues the parents have,” Lies says.

“There’s a sense of community and a sense that you don’t feel so alone. We try to have the topics very broad so that they address a variety of disabilities and there are nuggets parents can glean that are useful for their child. I’m also amazed with the different cultures and religions we get around the table—it’s like a cross-section of the world. And it’s useful to have all of these different perspectives.”

Lies says parents often feel comfortable confiding their concerns and experiences with a parent who’s walked in similar shoes. “They tend to be completely open with us.”

She says she needed a few years’ distance from her son’s injury before she was ready to support families. “You need to be emotionally ready,” she says. “You need to have some distance where you can look back, and your feelings aren’t still raw.”

Lies says the qualities she brings are an ability to listen to family stories and to share part of her story when it relates to a situation which a parent may bring up. “I’m very passionate about my role. And it’s a reciprocal experience. I get so much out of it.”

Lies has logged over 700 volunteer hours in her work as a Holland Bloorview family leader. In this video she talks about what it's like to cope with a child's acquired disability.

To find out more about our family leadership program, call 416-425-6220, ext. 6420.

A refuge for parents caring for kids in hospital

Once a week Claire Stoten sits on a meditation cushion and focuses on her breathing. “It forces me to stop doing all of the jobs—the organizing, e-mails, research and care for my son,” she says, sitting in her son Felix’s inpatient room at Holland Bloorview.

Felix, 13, who has a neuromuscular condition, had a 10-hour surgery to fuse his spine at the end of March. Prior to that his spine was so curved he couldn’t sit up, his mother says.

For the second week in a row Claire has participated in a 40-minute mindfulness session for parents of inpatients and daypatients. Without the structure of the hospital program, she says, she'd never set aside that time for herself.

“It comes back to that analogy of when you’re in the airplane, the parent is supposed to put the oxygen mask on first, because if they don’t, they may pass out before being able to help their child,” says Anna Marie Batelaan, social worker in the brain injury rehab unit at Holland Bloorview. Anna Marie has been leading a weekly mindfulness session for parents for four months. “They need to take care of their own needs to have more ability and energy to care for the child.”

Mindfulness involves paying attention to the present moment, Anna Marie says. “It’s giving yourself permission to focus on you and focus on the here and now, without judgment. Our minds are constantly busy and this is one way to pause and catch your breath and refocus.” Anna Marie says our bodies are built to focus on the negative, but we can retrain our brains to notice and appreciate the positive.

“This is new to a lot of families, so we’ve been doing multiple short sitting meditations of three to five minutes,” Anna Marie says. “Parents learn how to focus on their breath or we do a body scan and they send loving energy to different parts of the body. We’ve also done walking and eating meditations.”

Research on mindfulness shows that it reduces worry and stress, boosts working memory and focus, makes you less reactive and more adaptive, and improves relationships. “There’s a lot of evidence that it works with anxiety and depression and posttraumatic stress disorder,” Anna Marie says. “A lot of our parents are dealing with the posttraumatic stress of witnessing a child’s accident or illness that changed their child so dramatically.”

Anna Marie says the greatest challenge is to get parents out for a first visit. “When their child is hospitalized they tend to put their own needs way down on the list.”

She usually starts parents with meditations that focus on the breath because “they’re easy to learn and can be done anywhere and anytime. We talk about how you can fit this into your day. A parent will say ‘I’ve done it on the toilet.’”

Claire says she leaves the mindfulness session “feeling relaxed and peaceful.” Then, as a way of expanding the session, “I go to the cafeteria for 20 minutes and have a coffee. And I don’t let myself start any jobs.”


Here are some tips for beginning meditators. Anna Marie can be reached at 416-425-6220, ext. 6353.

The trove of other mothers

Sandra Stein’s life was upended when her healthy toddler fell ill with an autoimmune encephalitis, a condition in which the immune system attacks the brain, and was hospitalized for 15 months. In this poem, Sandra invokes and honours the many other mothers she has met in hospitals and in cyberspace who every day are caring for children with complex medical needs.


The trove of other mothers
By Sandra Joy Stein

I.
Cradling her son
As his body thrashed
Legs like iron rods.

Try to bend them, honey,
Tell your legs what to do,
They’re your legs.


It will pass,
she said, again.
It always passes.

After minutes or hours—she was never sure,
He calmed. Curled. Gazed into the void.


She gazed too.

A giant tear startled her, when it fell on her arm.

Was that his tear or hers?
She preferred not to cry while holding him.

Then another tear, this time most definitely hers
And another.
And another.

He was limp, motionless, breathing, heavy in her arms.

She surrendered.

More tears. Her arm now wet.

He fell asleep. So peaceful. So beautiful. If you didn’t know, you wouldn’t know, she thought. She loved to stare at him while sleeping.

Rest, she said, her palm to his cheek. You rest.

She called out—no, not to some doctor or deity—she called out to the trove of other mothers who at this very moment were, like her, cradling sick babies, and grown babies, and limp and lifeless but very much alive babies.


II.
From behind shadows and tucked away spaces and homes-made-hospitals and hospitals-made-homes
Their forms emerged
Weathered hands, kinked necks, crooked backs, heavy eyes, furrowed brows.
They looked right at her in a way that no one had since…


We see you.
We feel you.
We know you.
We are you.


Like a somber gospel choir they swayed and sang,

No, sister, you have not failed
No, sister, this is not fair
No, sister, you are not alone
Never alone. Never alone.



III.
She blinked back to her sleeping son.
Her arm, now dry, she dug
deeper, yet again.