In this first of a three-part series, The CJN is profiling mothers in the community who are thriving despite facing difficult challenges. These women provide inspiration, hope and support as they raise children with special needs.
That moment when you receive the news of a life-threatening diagnosis, your life as you once knew it will never be the same, and yet your new life – although sometimes seemingly impossible – is overflowing with hope, joy and merit.
Meet Ellen Schwartz, a community matriarch, mother, teacher and author of two books: A Disabled Son Teaches His Mother About Courage; Hope and the Joy of Living Each Day to the Fullest; and Without One Word Spoken: 18 Life Lessons from Jacob.
She is also co-founder of Jacob’s Ladder, the Canadian Foundation for Control of Neurodegenerative Disease; founder of Project Give Back, a program designed to inspire elementary students to be community-minded young adults, develop empathy and build character; she’s been honoured as a “Woman of Action” by the Israel Cancer Research Fund; commended by both Ve’ahavta and Aish Toronto; and awarded a Queen’s Jubilee Medal. In June 2016, Schwartz was presented with a Meritorious Service Decoration by Gov.-Gen. David Johnston.
Notwithstanding all these accolades, she insists her monumental achievement is her family: Jeff, her husband of 22 years; 19-year-old son Jacob; 17-year-old daughter Bevvy; and 14-year-old son Ben.
As Ellen wrote in the introduction of her most recent book, launched last autumn, Without One Word Spoken, “My dream was to be somebody’s mom. I couldn’t wait for the day when I could hold and cuddle that newborn child of mine. When we met Jacob William Schwartz, our first child, his strapping, healthy nine pounds meant I had arrived, too.”
Then everything changed.
Why wasn’t Jacob meeting the simplest of milestones? What was wrong with Jacob?
Jacob has Canavan disease, a rare, fatal neurodegenerative illness that attacks the central nervous system. There is no known treatment or cure. Children with Canavan disease cannot crawl, walk, sit or talk. Over time, they may suffer seizures, become paralyzed or blind, and have trouble swallowing. Death usually occurs before the age of four, although some children may survive into their teens.
Ellen believes in miracles. Jacob will be celebrating his 20th birthday in May.
After Jacob’s initial diagnosis, Ellen and Jeff couldn’t bear the thought of other families going through the same heartache.
“We stood up and told our story, and our family, friends and community rallied together. That’s how our grassroots charity, Jacob’s Ladder, was born,” Ellen said.
Jacob’s Ladder has raised more than $2.5 million and has saved countless lives. Prospective parents across Canada can now be screened for Canavan disease and determine with more than 95 per cent certainty whether they are carriers of the disease.
“Since Jakey was born, he kind of establishes what kind of day we are going to have. When he’s having a difficult day and puts a smile on his face it just brings perspective to our lives that, ‘If he can smile, then what’s my excuse?’” Ellen said.
She’s also not alone in caring for Jake.
“I have two great kids who pitch in. Their eyes are wide open to receiving Jake’s life lessons,” she said.
“I have Jeff. No matter what, he is there and will do his share of anything and everything, whenever,” Ellen said of her husband.
Jacob can’t walk, talk, move or see, and needs one-on-one attention at all times. Jacob enjoys swimming and being around people, understanding emotions and feelings. His bright, wide smile lets everyone know he’s happy.
Jacob’s most comfortable position is lying down on his side, but he spends a lot of his time in a reclining wheelchair.
“One of the lessons that I teach through Project Give Back is to see past the wheelchair and to know there is an amazing person who is locked inside of that body that can’t move,” Ellen said.
Most days Jacob attends school with his nurse, which his mother says gives him a sense of community.
Jacob lights up and is happiest when he hears music, so date nights at the Schwartz home are every Monday and Tuesday evenings, when the family sits together and watches the musical reality TV competition The Voice.
The disease is progressing, however.
“Up until now if you asked who’s winning, Jake or the disease, I would always say Jake. Now I would say the disease is winning,” Ellen said.
“Jake’s spirit remains the same but I am watching his body. His scoliosis is very severe. He is having a lot of trouble breathing now, and the seizures – he’s having a lot of seizures.
“There are some really tough days. Like the Jewish expression proclaims, ‘this too shall pass.’
“Jakey is the most inspirational person I’ve ever met and I celebrate him every single day,” Ellen said, with her endearing smile and enormous heart.