Living with Miracles introduces three unforgettable kids dealing with complex medical needs while living at home. Through their insights into disability, autonomy and quality of life, the children create a powerful tool for promoting public awareness and battling discrimination. They, along with their siblings and parents - speak candidly about their lived knowledge of the systemic obstacles they face, and provide ideas about how communities and health care professionals can help to accommodate their needs.
Our 1984 film To Hurt and to Heal, we explored the issues of caring for very premature and critically ill children. Living with Miracles returns to the lives of children who began their lives with difficult medical conditions, bringing their voices and experiences to our base of understanding. Living with Miracles highlights the strength and resilience exemplified by these incredible kids and the people who love them.
"I know that people know that I'm in a wheelchair because it's visible and I'm used to people watching me and wherever I go, but I don't really care because this is what makes me, me. Maybe on the outside maybe we look different, but on the inside we are all just the same. We all have feelings." -Emily Chan
Emily was born in Toronto and spent much of her early life in hospital. From the age of one month to six years, she lived at the Bloorview Macmillan Rehab Centre for Kids. We meet her and her parents when she is 12, now living at home. She is in a motorized wheelchair and breathes with the assistance of a ventilator. She talks about her experience, her strengths and her awareness of discrimination at school and in the community.
"I've been very sick for a very, very long time, and the role of parents, it's to protect and love, and they don't want anything to happen, and no pain. Of course they are really good intentions when they do that, but sometimes, it's that I need my independence, you know, to explore myself because if I stay always in the house, in four walls, it's not going to be good for me. I will not be prepared for the real world."
Catherine is in her late teens and lives at home with her parents and 3 brothers after many long stays at the Montreal Children's Hospital. She is very intelligent, articulate and thoughtful, provoking important discussion with her family. She struggles with the limitations of a special school setting and is adamant about finding schooling that is challenging and rewarding, in her search for independence and autonomy.
|THE CAYA FAMILY
"It's kind of hard, having a sister like her because she has to go to the hospital so much. And it's usually Mum that goes with her‚ I miss them when they're in the hospital and stuff and, like, whenever she has a surgery or something". -Alexander Caya
Gabriella Caya was born with a complex medical condition that resulted in 13 surgeries, many emergency interventions and required daily medical monitoring. Her twin Madison, her brother Alexander and their parents each talk frankly about their experiences of Gabriella‚Äôs medical needs.
|A CONVERSATION WITH GABRIELLE'S PARENTS
"As a parent and adult you understand what they are doing to her and it's hard to let them do that‚ you know, it's bringing harm, you know, the procedures hurt....And you couldn't hear her because she had a tracheotomy tube so when she cried you could see her tears but‚ you couldn't hear her". -Mario and Heather Caya
Heather and Mario Caya discuss their experiences of Gabriella's birth and their family lives built around the needs of all 3 children.
"Very little is known about the children's lives; about the hardships they encounter and the pleasures that they experience. We were concerned that the children are too often viewed simplistically as 'burdens', without regard for the important contributions that they make. We were also concerned that so little was known about the families' experiences, that ongoing decisions about the development of services for children with complex continuing care needs were based on little or mistaken understandings of their needs.
We found it particularly remarkable that although the medical needs of these children can entail significant demands on the lives of their families, families reported that their biggest difficulties related to the physical and social barriers that they faced daily in their communities. Improving our collective understanding of their lives can help us better understand how their needs can be better accommodated.
This is a valuable work for individual viewing and personal reflection or for use as a teaching tool with providers of health, social, or schooling services for children with complex continuing care needs and their families. I am grateful to the children and families that participated in this production and to SkyWorks for this valuable contribution!"
Franco A. Carnevale, R.N., Ph.D.
Nurse, Psychologist, Clinical Ethicist
Professor, School of Nursing
Associate Member, Department of Pediatrics
Affiliate Member, Biomedical Ethics Unit
Adjunct Professor, Counseling Psychology
McGill University, Montreal, Canada
Clinical Ethicist; Chair, Pediatric Ethics Committee
Associate Member, Pediatric Critical Care
Montreal Children's Hospital - McGill University Health Centre
Clinical Ethics Consultant
Le Phare, Enfants et Familles (pediatric hospice & respite care), Montreal, Canada