In my mind, my life as a mom is divided into two: before and after. The “before” is prior to Jacob getting sick and spending 236 days in the hospital. The “after” began when he was discharged from the hospital and my life, and that of my family, changed dramatically. In reality, the change began on January 23, 2015, the day I frantically drove my son to the hospital when he struggled to breathe, his face an unnatural shade of blue-grey and the sounds coming out of his throat signalled that he was fighting to keep his airway open.
My “before” was the life I adapted to following Jacob’s birth in 2002 and his diagnosis of Pelizaeus-Merzbacher disease (PMD), the neurodegenerative genetic disorder that affects all aspects of his life.
Despite the challenges that accompanies PMD, Jacob grew into a happy child whose favourite activity was to chill with his friends. He loved to swim and downhill ski. His Halloween costumes were often the most creative in his school and in our neighbourhood. Jacob thrived when he was integrated into mainstream classes and programs and despite his need for constant assistance and nursing care, his health was stable. He was fed by a tube inserted into his stomach when he was six weeks old and required more medication than most of the geriatric population. Despite all that, he was healthy, in his way.
When Jake was discharged from the hospital in August 2015 following a series of prolonged illnesses, his needs were vastly altered. At his core, he was the same kid who loved to laugh and found reasons to smile despite the hell he experienced and the frequent need to have a tube inserted down his throat to suck out the mucous that often blocked his airway. The Jacob who was discharged from the hospital is medically fragile, his health is unpredictable and the only consistency in his care needs is that it is inconsistent.
Life “before” wasn’t terribly easy, but it was manageable.
I had my share of battles on Jake’s behalf, but most of them were to ensure he was treated as a person, with thoughts and feelings, not simply as a body in a wheelchair. It was surprising how many people in positions of responsibility, including medical professionals and educators, would ignore my son and not address him directly, preferring to assume that because he was non-verbal he didn’t understand conversations around him. Or maybe they were so uncomfortable around disability that it was easier to ignore my son than look into his big green eyes and say hello.
Our family of five seldom went to a restaurant together, and we only went to a movie as a five-some once. Most of the time, my family outings were with my husband and my twin daughters, Jake’s younger sisters, or with my husband and Jake. Once in a while we would go to a party or an event as a quintet, but always aware that Jacob’s medication or feeding schedule would necessitate an early departure. We never went on vacation together and Jacob has never been on an airplane or a train.
My “after” life is spent trying to ensure that the nurses we have know how to properly care for my son.
His suction requirements are diametrically different from the textbook procedures so even the most experienced nurse needs to learn how to safely clear Jacob’s airway.
Gone are the days that Jacob is awake and ready to go to school before the bus arrives at 8 am. The Jacob in my “after” life does not get out of bed until 11am on a good day, does not regularly attend school because his immune system is too weak to withstand a simple cold and plans are made with the tacit understanding that they are tentative until the moment of departure. He attended school for one hour over the entire academic year last year, and this was a significant achievement for him.
Gone are the days that we can schedule an activity for Jacob ahead of time and reserve his spot. Gone are the days that my son could come with me to the grocery store or to run an errand. These days Jake’s breathing challenges are almost constant and sitting in his chair is often too taxing for his respiratory system to manage.
Before, our nights were routine – at 11 pm a nurse would arrive and spend the next nine hours in Jake’s room, ensuring his safety, providing medication and tube feedings, and turning him every two hours. The possibility of choking was always present, but we knew how to properly position him to minimize the chance of an accidental aspiration.
My “after” life is dedicated to doing everything humanly possible to help Jacob live a full and meaningful existence. But the roadblocks placed in front of me by the very system that was supposed to help support my son make climbing Mount Everest in a blinding snowstorm trivial in comparison.
Watching my son’s health deteriorate while his cognitive abilities and interests remain intact is heartbreaking at the best of times, torturous much of the time and depressing all of the time. I need to repeatedly summon the fortitude to stand up for my son’s rights as a human being, to fight for nursing care that is competent and consistent. My efforts are dedicated to navigating a health care system that despite the catchy “Patients First” slogan, puts the desires of the administrators ahead of the needs of my son, and allows medical professionals to acknowledge the deficiencies in the system but enables them to shake their heads in sympathy while stating that it is beyond their scope of responsibility to help.
My “before” life was different from most of my friends’ lives but it was mine. I knew our limitations and figured out how to cope with Jacob’s challenges while ensuring all my kids had a variety of experiences. My “before” existence involved a lot of driving – transporting Jake to school, to appointments, to activities.
Instead of using the “after” time to build memories with my son, too much of my time and energy is focused on ensuring Jake gets qualified and dependable nursing care.
Without my diligent oversight, I would not have known that a nurse tried to place food in Jacob’s mouth, I would not have awoken a nurse out of her drug-induced sleep at 3 o’clock in the afternoon, I would not have seen that a nurse did not know how to properly measure a dose of medication and I would not have witnessed incompetent nursing skills that would not have been tolerated in any reputable hospital in the province.
This precious “after” time that should be spent with Jacob and the rest of my family is dedicated to making sure we have a nurse scheduled to arrive for her appointed shift because Jacob is dependent on the care of skilled people to help ensure his airway is clear and his breathing is as comfortable as possible.
It’s been many years since I’ve thought about the concept of fairness – it’s not fair that Jacob has PMD, it’s not fair that my son struggles for air and it’s not fair that all my children have to watch, helplessly, as their mother devotes so much effort to ensuring Jake receives quality care at the expense of creating precious family memories.
It simply isn’t fair.