Miyoko Shida Rigolo is one of six people in the world who perform the Sanddorn Balance – a dance-like performance in which the dancer first balances a feather on her finger, then moves the feather onto a palm rib. With slow, deliberate movement the dancer adds more and more palm ribs to the mix until she is balancing 13 long ribs, each one balanced on the other, the feather at the very end. She moves with poise and grace despite the strength and control it takes to keep the structure in balance. Her gaze is focused yet she appears calm and serene. And at the very end of the dance, she goes back to that feather, knocks it from the structure and the whole thing collapses. It all hinges on the weight of that feather.
In many ways, the dance serves as a metaphor for the life of a parent whose child lives with disabilities; parents like Dorothy and David Gazzola, whose daughter Faith lives with Down syndrome. When one meets with Dorothy, one sees a confident, positive, strong person who is active in the life of her daughter. On the outside, she appears calm and serene but there are times when her outward demeanour belies much more.
“One of the things that I wish people would recognize is that appearances can be deceiving,” Dorothy says. “We learn to work with what we have because that’s our reality. We put on a brave front for the sake of our child but it affects every aspect of your life.”
Statistics show that parents whose children live with a disability have higher rates of physical and mental health symptoms as compared with their peers who do not have children with disabilities.** Trying to balance the daily care for your child with your job, your marriage or your other children can be extraordinarily difficult. Add to that the fact that parents of children with disabilities are often deprived of sleep and one begins to see how fragile that balance can become and the toll it can take.
“I compare it to having a newborn baby. You have a child that is completely dependent on you for everything, who wakes up at regular intervals all night long,” she explains. “But for us, this child will not grow up to sleep through the night let alone be completely independent. It can be really discouraging.”
Having said all of this, Dorothy and David aren’t looking for pity nor do they want to come across as though they do not love and value their daughter. The challenges they experience are balanced by the love they have for Faith and the joy she brings to their lives.
Faith is a keen observer of her world and absorbs knowledge quickly. Although she finds verbal communication a challenges, she communicates well through her actions, physically mimicking what she’s seen. Dorothy and David also love her sense of humour and love listening to her giggle as she watches favourite programs on youtube. All of these joys put things in perspective.
When life gets tough, these moments make me say ‘Wow, I get to experience this, I get to see the beauty she sees.’ That helps me focus on what’s important. Dorothy, mom to Faith
But just as the Sanddorn Balance dance shows how precarious balance can be, it takes an extraordinary amount of effort to maintain that in their family life. Faith’s care needs mean that Dorothy and David have little time for themselves or for each other. Both parents work during the day while Faith is at school. Dorothy’s work is flexible enough that she can pick Faith up from school, take her to appointments or therapy sessions and give Faith her undivided attention. When David comes home from work, he takes over that care so that Dorothy can finish her work. Faith doesn’t sleep through the night so it means their sleep is always interrupted. On top of this is the stress of constantly having to advocate for her daughter, for resources and funding for Faith’s extraordinary needs. All of this takes a toll on their mental health and while Dorothy knows what she should do to maintain that, often the time it takes to do these things just isn’t available.
“I know that if I exercise I will feel better but I rarely have time to do this for myself,” she says.
She’d love to sleep in, to take a long bubble bath, to actually start and finish reading a book but these are luxuries that she rarely experiences.
The Gazzolas do have resources that they rely on. Community is very important. Dorothy has found that Faith’s support team at school has been great resource. Connecting with other families who also have children with disabilities is imperative.
“Sometimes you feel so alone and it’s not that other families don’t care but they just cannot understand the magnitude of the stress that we’re experiencing,” Dorothy explains.
Another important resource is Matthew’s House, which supports families by providing quality care to children who live with complex care needs. Faith visits Matthew’s House often and these visits give Dorothy and David time for themselves and time for each other.
“I look forward to the opportunities that Faith has to visit Matthew’s House, because I know that she will be loved and cared for in a safe environment,” Dorothy says. “It gives me peace of mind and allows me to relax a little.”
There are also things that others can do for families like theirs. Practical things like making a meal, doing some grocery shopping or housekeeping can be a big help. Showing that you’re not afraid to sacrifice your time or step out of your comfort zone makes a big difference. Understand that this is an investment in friendship.
“Don’t just do your good deed. Recognize that we’re in this for the long haul,” she says, adding that the most important thing to offer is a listening ear. “Don’t try to solve this for us, just listen. Just be.”
And perhaps when parents like Dorothy and David find support like this, then their lives will find a greater balance.
**US National Library of Medicine, National Institute of Health. Caldwell J. Health and access to health care of female family caregivers of children with developmental disabilities. Journal of Disability Policy Studies. 2008;19(2):68–79