I’ve met a lot of extreme caregivers during the past sixteen years. Part of my path in life includes raising a son who is completely dependent due to a rare brain disorder. I’m grateful that Daniel was born in 1998 when internet support groups were getting off the ground. What I lacked in face to face companionship was made up for by global access to people walking in the same shoes as me. These relationships sustain me.
A few years ago I made another connection with kindred spirits when I started reading the blog: Healing, Empowering and Thriving. Some of my deepest friendships are with parents whose children were born disabled. In Phil and Sharon’s case, their son was a typical, very active twelve year old boy until an accident changed things.
On July 24, 1998 twelve year old Adam Dzialo woke up ready for one more day at adventure camp. A baseball tournament was scheduled for later that afternoon and hockey camp in just a few days. Adam’s calendar was always booked full with his sporting events. His mother, Sharon, prepared to pick him up as he took part in the final event, a rescue drill in the river.
What began as a drill became a true emergency rescue when Adam’s foot was entrapped and he spent twenty-five minutes underwater. It took a team of people to free his foot and bring him back above water. That much time without oxygen usually means certain death.
It was a catastrophic injury for Adam. For three weeks he was comatose and on life support, his survival unsure. Once he made it through the initial trauma, he was sent to a rehabilitation hospital for six more weeks, and then discharged. Without words, without the ability to eat by mouth, muscles stiff and body rigid from the injury to his brain, Adam came home.
How do you make sense of such devastation, and how do you move forward? In the sixteen years since Adam’s injury, the Dzialos understanding of healing has changed, as well as their approach to therapy. Their core beliefs about life have transformed. Phil, a retired high school principal who once spent eight years in a religious order, and Sharon, a former school counselor, became explorers of both the inner and outer realms of healing.
Miracles
In her book, Ceramic to Clay: A mother’s search for authentic healing for her brain injured son, Sharon wrote that the idea of miracles happening over a long period of time resonated with her at the beginning of their journey. When asked about it, Sharon had a lot to say about the evolution of her understanding.
“In the beginning, after the accident, I desperately wanted a miracle. I wanted someone to petition God or the Universe on behalf of my beloved son. He would miraculously open his eyes, look around, smile and ask, ‘What happened?’ Then he would return to his twelve year old life.”
“When the extent of Adam’s brain injury became apparent, I recognized the raw and blunt truth. Adam was severely injured and no one could tell us the outcome. I switched gears and moved in the direction of therapeutic interventions in the world of rehabilitation.”
“At this point in my life I don’t think that I would even use the word miracle anymore. As I review our life I can see that significant people and therapies appeared when we needed them. I only needed to open my mind and heart and I could see and hear what Adam needed, what we needed, to continue to move in a healing direction. I identify more with the concept of synchronicity now, the perfect working of the Universe.”
Phil adds, “Adam’s ability to survive twenty five minutes without oxygen while entrapped underwater was a miracle. His acceptance of his new life and immersion into it led us to many places and sources of energy. This personal transformation, I now realize, was the miracle we were allowed to experience.”
Recovery
In the beginning they worked with traditional therapists to relieve the pain of muscle spasticity until it was clear that Adam was not benefitting in a significant way from the typical treatments. In fact, they were causing additional pain and injury. During her research, Sharon found Advanced Biomechanical Rehabilitation.
ABR uses an aggressive yet soft approach to normalizing the musculoskeletal structure after a brain injury. This was the chance for a progressive plan of change for Adam. They traveled to Canada for intensive trainings. Rather than splinting, casting and other ways of forcing the body into position, ABR uses gentle pressure to effect slow change. They began to see progress.
In a testimonial video that Phil and Sharon did for other parents interested in the therapy they’ve chosen for Adam, Phil rolls a therapy ball across Adam’s lower leg. There are several sizes and shapes used in ABR, usually rolled over the top of a thin piece of rubber material placed on the area being treated.
Behind Adam’s bed trees sway in a light breeze outside the glass doors. Their dog, Ollie, a bischon poodle hybrid, lies curled at his feet. Phil slowly presses against Adam’s upper thigh while Ollie watches.
In a soft voice, Sharon explains the effects of ABR on her son as Phil demonstrates the technique. In sixteen years Adam has been hospitalized only once after exposure to a virulent bacterial pneumonia. He soon resumed eating by mouth and lost the feeding tube. His breathing is much deeper with an expanded rib cage. Before, the musculoskeletal system was collapsing inward on itself, she explains. He can now better avoid the frequent respiratory issues that usually go hand in hand with traumatic brain injury of this severity.
Phil and Sharon are in their sixties now. She is beautiful and elegant with short cropped salt and pepper colored hair. Beneath a calm exterior is a dogged pioneer whose research saved their son years of fruitless therapeutic approaches. Phil is still the strong, outspoken warrior who fought systems and people in the early day. He says, “I still fight for Adam, but the intensity is much, much less. More energy and much more time for care. Sharon and I have balanced roles. It has taken a toll on our bodies and minds, but without any regret and without any anticipation of reprieve. And that’s ok.”
Acceptance
In Ceramic to Clay, Sharon writes about acknowledging the difficulty of her new life. She shared more with me about this.
“The role of extreme caregiver is very intense. It was not fair to myself or others in the same situation to describe this role as anything but hard. Caregivers, in general, are not given the appropriate validation, attention or recognition. I am Adam’s mother and his caregiver. Most people can identify with the dependency of the infant, toddler or child, but when you have a completely dependent adult, very few can understand this role.” Sharon embraced it and says it has been one of amazing challenge and growth.
Phil cuts to the point. He says, “We have had other options for Adam which would have made life easier such as adult day programs, nursing homes, personal care attendants and residential care. We choose full time shared care giving because any of those options would have been a death sentence. Adam has needs for adjustments to his body that only we understand. Communication is subtle and through body language and facial expression. Even the closest people cannot read these signals and without the ability to read and understand, trips to the ER would be regular occurrences. Home is the safest place and we are the safest people.”
Peace and Purpose
Sharon describes how Adam’s recovery is connected to her own. “Over the years I felt such an intense need to make sense of the events in our life, to find meaning and purpose, to transcend the daily grind and routine. Once I understood that Adam’s healing must encompass body, mind and spirit I also accepted that for myself. I realized that I had to open those parts of myself, heal them, or I could not be present for Adam.”
Phil feelings are nuanced. “Healing doesn’t mean that you are less resentful about those who made promises to be there for you for the long run, or that the ‘chronic sorrow’ of a living loss is more palatable. It’s gaining the strength to see that those issues matter less than the caring in which you are engaged.”
As for Sharon, she says, “We searched for people who would guide us, not only through the maze of therapeutic interventions but into the spiritual world. It felt like home. Whether I am practicing yoga, doing a walking meditation, having readings, finding books and articles and mentors, I am always searching for strength, meaning and purpose in this lifetime. I would like an easier ride next time!”
Their goals for Adam are pared down and focused. They work towards comfort in his body and the ability to enjoy the things that make him happy. I think that unless you’ve cared for someone so completely dependent past infancy you don’t really comprehend the joy of these seemingly small things. It’s about healing, not fixing.
Simple Joy
Sharon describes Adam’s communication. “It’s quite loud. Happy, sad, bratty, uncomfortable, headachy or grumpy.” Adam still loves the movies he enjoyed as a twelve year old. The Mighty Duck series never gets old, and he laughs at Jim Carrey and Adam Sandler movies. He loves the ever irreverent humor of his son.
Sharon says it’s very easy to make him smile. “You merely get in his face, acknowledge his presence, do something silly (or not) and he meets you with his beautiful smile. We take him to movies and we go for walks or sit on our deck. He watches the breeze off the pond move the tree branches and the sun sparkling on the water. He has his moments of feeling uncomfortable and we help him with this. Generally, he is peaceful, calm and happy. Oh, and he also smiles when he sees beautiful women.”
Their days have a rhythm. Along with occasional help from the caregiver that’s been with them for fifteen years, the Dzialos do several hours a day of loving, hands-on ABR work with Adam. At night, a machine gently inflates and deflates to continue the softening of his muscles. Phil and Sharon have quiet dinners out together. She walks the beach and reads avidly. It’s a busy and purposeful life. Phil is active with an online community and many support groups for families impacted by brain injury, particularly near drowning. The two take separate and short vacations. Sharon acknowledges that their life as caregivers is isolating, but both told me they are the other’s best friend.
They are also enriched by the relationship with Adam’s older sister, Aimee. She was fourteen at the time of the accident and immersed in adolescent life. It was tough for her to have life change so drastically. Over the years she met the typical milestones of school, career, marriage and now motherhood. Sharon says that Aimee is their reminder that life goes on, and they celebrate each new phase with her. It helps balance their life of caregiving to have their daughter, son-in-law and beautiful, blue eyed granddaughter, Evie with them for the ride. They are another reason for Adam’s exuberant smile.
Connection
At the top of Phil’s blog is a picture of Adam. A very large photograph of him with a huge smile, and clear, bright eyes. There are also visible wrist contractures. He’s in a wheelchair. It’s sometimes hard for the uninitiated to understand that joy and love are compatible with such drastic bodily changes.
“So few people are comfortable around Adam. Hello and goodbye is what most folks offer. Adam loves people to talk with him, but most can’t move out of their own comfort zone to speak to someone who cannot talk back. He speaks with his eyes, believe me,” Sharon says.
People are often afraid of disability and weakness. If they could just step close enough and engage with Adam and others like him, their fears might evaporate like the morning mist in sunlight. He is not a lesser person because of the effects of his injury. His humanity and divinity are intact. Phil and Sharon work to ensure that his health and dignity are as well.