Tuesday, December 9, 2014

'You go to places you never thought you could'

By Louise Kinross

Life with children with disabilities and chronic health problems is complicated. It can be traumatic and a source of heartache.

But it can also be life-changing in a positive way, says Laura Kerr Meffen, mom to Emily, 16, who has a rare metabolic disorder and multiple disabilities.

“With Emily it was kind of a tragedy and a grief, but I’ve had so many positives with having her in my life,” Laura says. “Sometimes you feel guilty that you’re using your child’s disability or a trauma to have positive experiences. Or people think you should be grieving and sometimes you aren’t.”

She better understood her experience after attending a workshop last month at the 2014 conference of the Ontario Association of Children’s Rehabilitation Services.

“They talked about something called posttraumatic growth and it validated the feelings that I had and gave them a name and a positive spin,” Laura says.

Posttraumatic growth in parents and pediatric patients is a review of 26 journal papers on positive psychological change that results in parents or children after a child's traumatic medical event (including cancer, prematurity and acquired and congenital disability).

“Posttraumatic growth is the positive psychological change that results from a struggle through a life-altering experience,” write the authors of the Journal of Palliative Medicine study. It may include “greater appreciation of life, improved relationships, greater personal strength, recognition of new possibilities in one's life course, spiritual or religious growth, and reconstruction of a positive body image.”

The authors conclude that posttraumatic growth is an important, little studied and poorly understood phenomenon affecting children with serious pediatric illness and their families. They suggest research is needed on how professionals can positively intervene “to facilitate families' movement away from dysfunction or deterioration and toward growth.”

Laura says the concept of posttraumatic growth helps to explain her experience parenting Emily.

“I guess the biggest positive is that I’ve changed my life to recognize the small things, the little things that other people take for granted. I know now that life is not about money or career. It’s about doing things that make me and my family happy. It’s about being with friends and family who make you feel good and surrounding yourself with those people.”

Laura says that her decision to leave work to care for Emily full-time was initially hard, “but then I made myself a life as a professional special-needs mom. I think it’s okay to have positive feelings about that and to feel like my child is unique and special, and so am I.”

Laura says she’s grown in ways she never would have without Emily. “You become an advocate, and you go to places you never thought you could, meeting people you never would have otherwise.”

An example is her participation last year in the
Easter Seals Drop Zone fundraiser where she rappelled down an 18-storey office building (see photo above of Emily and Laura dressed as a “Super Mom Hero”).

Laura advocates for and develops recreation programs for people with disabilities by sitting on a Markham Parks & Recreation committee and on the Markham Sports & Recreation Accessibility Committee.

She’s also played a key role in fundraising and writing grants to support the first universally accessible schoolyard in Markham at James Robinson Public School. This is a community school her children attended. “The playground will be accessible to all,” Laura says. "It will have an accessible outdoor classroom, an accessible stage, sensory and community gardens, loose play with pine cones, rocks and pots and pans, and play equipment that is connected by a paved serpentine trail with ‘calming bumps’ for wheelchair users,” Laura says. The group has raised over $100,000 to date for the project and needs another $100,000 to cover the play equipment, Laura says.

She hopes the study of posttraumatic growth helps parents understand that all of their emotions raising children with disabilities are valid. “It’s okay to have positive feelings and it’s also okay to grieve. I’ve grown, and it’s important for parents to know that we can be empowered and have positive outcomes raising our children.”


I've never heard our lives described in such a way. Very interesting, and I'd love to hear more.

YOO HOO. IT is great to read how they are doing research into post-traumatic growth.

Post-traumatic growth is one of our most powerful tools and allies on this planet.

And it is not just as parents of/ or as a child with disabilities. It is for all of us.

Others refer to this as moving through the dark night of the soul.

It is the alchemical process for everyone.

Some of us embrace dancing with our shadows, and others will avoid at all costs,
missing out on true personal empowerment.

As a 57 year old person with multiple disabilities, I've GROWN in so many ways
emotionally and spiritually. and am most grateful.

I came to the point in my twenties, where I said to myself,
"WEll, since my body is what it is, I'll focus on my emotional and spiritual healing,
since these are what truly carry us on our journeys."
Life is about co-creating inside, what works for us as an individual.

Even though I've been disabled my whole life, "I LOOKED GOOD."
I stumbled through life thought by others to be a "lost soul"
who has been chronically homeless, unemployed or underemployed.

A mostly solitary human because as most of us know,
other folks tend to not want to be around someone
who is 'too different' from them.

So, being mostly solitary creates great opportunities for other activity.

all of my diagnoses have come after age 40. They are Invisible Disabilities.

And it is interesting how many folks will say something such as, "but you're so happy,
you can't possibly be in that much pain, or unable to take care of yourself."

YES! I can be happy, live with multiple disabilities
and be in immense physical pain. This is part of the process of life.