Mastering Balance Beams: Parenting Children with Muscular Dystrophy

By Joan Fleitas

Have you ever walked on a balance beam? Much like a tight rope, the journey is perilous, with one step cautiously leading the other in an effort to remain stable atop the beam. Despite the winds — despite the narrowness of the beam — despite the distractions from below — the skill can be mastered. With persistence, much support, and an understanding that occasional falls might occur, ‘beam-walkers’ can indeed be successful. Parenting children with muscular dystrophy is much like mastering balance beams.

As parents, we all believe that we should be able to protect our children from harm, socialize them to be exemplary citizens, ensure their perfect health, and craft for them lives where they will surely live ‘happily ever after’. It is as if we perch ourselves on parental thrones when we give them birth. We learn eventually that we are not endowed with such power. When children are diagnosed with muscular dystrophy of any kind, we are given a crash course in humility.

Raising children in the best of circumstances requires that we do a lot of catching up. Just when we think we’ve ‘got it’, when we know how to respond to an infant’s cry, a [...] continue the story

I am a caregiver of someone with MS

By Kent Pollard

I think that part and parcel of coming to terms with becoming a caregiver, is acknowledging that there is going to be change, change that will almost always be difficult at the start. Change that we have to accommodate and embrace if we are going to have the best life we are capable of having.

My wife, Victoria was diagnosed with MS on October 5th of 1998, three days after I started a new job. At the time, caregiving didn’t even enter into my experience. We were a couple and there were things that we did for each other, none of them out of the ordinary. For the first 4 or 5 years after the diagnosis, caregiving was a minor, and completely unrecognized, part of my life. Victoria experienced unusual fatigue, and we worked through some initial anger and bitterness toward the world, but she continued to work and our lives were, or at least, my life was, not particularly disrupted. However, the disease state progressed, slowly but inexorably until about four years later when it, and the accompanying symptoms had become much more pronounced and began to creep into our day-to-day lives. Victoria was more tired than ever. [...] continue the story

White Cane and Wheels

Paul Apelgren wanted to make a film about his Aunt Carmen and Uncle Steve. Carmen wanted the film to be called Soul Mates. Steve wanted the film to be called Gimp Love. The film shows they’re not your normal relatives, they’re outspoken, genuine, and hilarious. They also face tremendous hurdles on a daily basis. The simplest of tasks are extremely difficult. Carmen has Retinitis Pigmentosa. She is ninety-five percent blind and what little sight she has left is going fast. Steve has Muscular Dystrophy. Two years ago he could still sit up; now he can barely wind his watch. His illness is terminal. Carmen says, “Hopefully people won’t feel sorry for us and all that crap because it’s so annoying.” They see their life as a movie, a love story. Carmen and Steve met in a disabled acting class after a run of failed marriages and relationships. The film is an intimate look at the power of love and how it sustains two people who by all measures seem like they cannot make it. As the story progresses it becomes clear that things are “not all peaches and roses.” Especially when the biggest obstacle is the floor. Tensions run high. Carmen is the [...] continue the story

Refrigerator Mothers

It is America of the 1950s and 1960s, when a woman’s most important contribution to society is generally considered to be her ability to raise happy, well-adjusted children. But for the mother whose child is diagnosed with autism, her life’s purpose will soon become a twisted nightmare. Looking for help and support, she encounters instead a medical establishment that pins the blame for her child’s bizarre behaviors on her supposedly frigid and detached mothering. Along with a heartbreaking label for her child, she receives a devastating label of her own. She is a “refrigerator mother”.

Refrigerator Mothers paints an intimate portrait of an entire generation of mothers, already laden with the challenge of raising profoundly disordered children, who lived for years under the dehumanizing shadow of professionally promoted “mother blame.”

Once isolated and unheard, these mothers have emerged with strong, resilient voices to share the details of their personal journeys. Through their poignant stories, Refrigerator Mothers puts a human face on what can happen when authority goes unquestioned and humanity is removed from the search for scientific answers.

Upstaging Cancer

A short film on the battle of Daniel Stolfi, a young man with cancer who not only survives, but transforms his horrific experience into a deeply personal, yet highly comedic one-man show “Cancer Can’t Dance Like This”, winner of the 2011 Canadian Comedy Award for Best One Person Show.

Read the story of Daniel’s girlfriend, Jennifer De Lucia, as she tells her emotional companion story for the first time.