He looked at me quickly from across the small white room with his big eyes, and I immediately knew what he was thinking. He didn’t have to say a word or make a sound, I assessed how serious he was this time, and his intense eyes immediately fed the words that would leave my mouth next. I looked to the figure in the doorway, and said, “I’m so sorry, but he only trusts Nurse Heather to access his port.”
I have cataloged in my mind thousands of times when I was fully my son’s voice during treatment, when I protected him from what could be seen and could not be seen, by just a simple meeting of our eyes. This role translated to every aspect of his delicate life at the time: medical appointments, pills, pokes, infusions, school and friends. At the best of times, I would know if it would be a good day or a sad day by watching how he moved out of bed, by looking at the pallor of his skin, or gently stroking the back of his head to quickly count how many hairs would be left on my hand while casually discarding the evidence before he could notice.
Although I was assessing my son, little did I know that I was also assessing myself. His daily physical and emotional health directly affected my health. It is commonly said that a parent is only ever as happy as their most unhappy child. When your child has cancer, this statement is not only truth, but is the backbone of cataclysmic attachment trauma.
A cataclysm is defined as a momentous and violent event marked by overwhelming upheaval or an event that brings great changes. Clearly a childhood cancer diagnoses and all it encompasses, tightly fits into this definition. It is important to understand for both the patient and the caregiver in the pediatric population, cancer is a lifelong diagnosis. I believe this is not something to fear, but rather something to acknowledge and accept. With acceptance, we can begin the process to open our minds to the potential for healing.
Understandably, far too many families wear their protective armor from treatment for far too long. This act can unknowingly become an obstacle to the opportunity for vulnerability, self-awareness and healing. These same protective measures, unfortunately, can sometimes become the catalyst for adding another level of sickness to the family after diagnosis through the ongoing internalization and manifestation of stress and trauma.
Based on the results of a recent study between Momcology, a network of primary caregivers and parents of children diagnosed with cancer, and the Yale School of Nursing, Joan Kearney PhD APRN, Associate Professor at the Yale School of Nursing and Yale Child Study Center coins and defines Cataclysmic Attachment Trauma as, “occurring within the attachment and caregiving relationship as the parental caregiving system experiences the ultimate threat-the possible death of a child.”
How does one function, process and make decisions while living with the possibility of the death of a child?
As much as we, as parents, try to stuff that thought down, it is always there, just below the surface, and easily accessed during times of stress. There have been thousands of books, movies and television shows around this gut-wrenching topic with the purpose of igniting an intense sense of tension, fear and anguish to the viewer. When the reality of the threat is in front of you, and is not from an outsider, but rather the sneaky villain that lives within your child’s own body, it leaves little to no control for parental protection from the impending intruder. Without a doubt, the diagnosis of cancer in a child is a life changing, life-defining, irreversible and traumatic event (Kearney, 2019) for a parent.
The collaborative study results between Momcology and Yale research shows that not only is there a severe rate of parental post-traumatic stress symptoms, but also acute physiological and psychological manifestations of stress developing into ongoing physical health symptoms requiring all levels of care up to and including surgery and ongoing treatment. In fact, from the sample of caregivers interviewed for the study, they mapped on average 9-10 diagnosable symptoms per caregiver post diagnosis and up to 10 years following end of treatment (Kearney, 2019).
Through qualitative interviews with nine mothers of childhood cancer survivors, participants reported an extremely high number of ongoing symptoms across psychological, physical and other symptom categories. Examples of reported systems included; anxiety, depression, post-traumatic stress, panic, cognitive impairments, mood, sleep disorders, cardiac events, gastrointestinal and endocrine disorders just to name a few.
These astonishing results should be considered a call-to-action on the need for greater caregiver interventions not only during treatment, but specifically and perhaps more importantly after treatment ends. Caregiver well-being can have a direct impact on the well-being of the entire family ecosystem.
With more children thankfully entering into survivorship care, we must now consider caregiver health an important piece in overall and long-term supportive care.
Having been in the cancer world for over a decade, and in the front-lines with families spanning that entire timeframe, I have had the opportunity to directly witness both personally and through association, the ongoing impacts of cataclysmic attachment.
Signs can often include a hyper-arousal by the parent at any child’s symptom that could resemble an out-of-ordinary event sending the caregiver emotional well-being and stability into rapid decline. Even as caregivers manage to get through each of these hurdles with another notch of wisdom and experience in our belts, it seems to momentarily and immediately disintegrate when once again presented with a new symptom of a potentially life-altering event post treatment. It seems that cataclysmic attachment can provide the space to be overwhelmed with fear and anxiety at any moment when the child may once again be put at risk.
Through my own experiences and the stressor of treatment as a primary caregiver of a child with cancer, I myself was diagnosed with a sleep disorder, thyroid disease, endometriosis, ulcerative colitis and had a partial hysterectomy all before the age of 40 years old. To be very transparent, my son had standard risk leukemia with a good overall outcome. I can only imagine the potential impact on parents with far more complicated diagnosis’s and less favorable outcomes with greater long-term effects.
Most of these parents are suffering in silence and pain.
Based on Dr. Kearney’s research, if we can begin to consider cataclysmic attachment trauma as a potential norm for parents as their children grow to be adolescent and young adult (AYA) survivors of childhood cancer, there must be strategies developed to help both the parent and child begin to safety find an environment to separate and grow from each other…together.
Although not qualified to say what these steps may be, I am happy to share our personal experiences that continue to benefit my relationship with my son, and have helped to alleviate my own stress in the process.
As we began our own process, that thankfully was complemented by rituals of high school and the teenage years, yet certainly still punctuated with times of sickness and obstacles, we purposefully began our conversations about the future.
Although there were many moments of pure sadness that those quick and intense looks in my direction rarely happened anymore, and that I was less needed or wanted as a protector, there were also late-night conversations about his past, our beliefs as a family and how although we can’t always control what happens to us, we can do our best to limit risk and build trust with those around us. I made it clear to my son that growing apart wasn’t going to be easy for me, but I understood that he needed to become independent and responsible for his health. I promised him that I would respond versus react when I felt the internal pull to protect him. He promised to not hide things from me and make self-awareness about his health a priority.
All I ever wanted during the darkest days was the opportunity to watch him grow up. I never took a moment of it for granted, yet when it came to actually letting go, it did not make that piece any easier. The bond we shared while saving his life is not something I will ever let go of. It is part of who I am, and it is part of what continues to heal me in the aftermath of our cataclysm. We had that moment together as parent and child, and it was equally painful and beautiful.
However, for him, that same bond was a restriction to his future. It is his evolutionary right to be free, and it is my duty to let him go.
Once again, I found myself sitting in a room. This time, I was only surrounded by other nervous parents who were also experiencing the internal shift of change from protector and guardian to standby witness and adviser at best.
This was the final threshold before letting go.
The college Dean at the podium encouraged us to not call too much, to let our children have their independence, to trust the process and that they WILL be okay. I spent years preparing for this moment of where nervousness and relief intersected and I hoped that at the moment my mind would afford me the gracefulness of surrendering the control I built to sustain balance in what I ultimately could not control since our world was abruptly interrupted nine years before.
I heard sniffles and tears, but my seasoned coping mechanisms just turned me numb to what was happening around me. Internally, I wondered if anyone else in the room could relate to the struggles and pain we experienced during his childhood, did anyone else in this room spend years with adrenaline-filled veins at each sign of distress, fever, bruise or body ache?
Did anyone else know the effort behind the years of mending a broken heart every time they watched their child fail or succeed at something that is important to them during a childhood milestone?
The answer was probably yes, but even in the crowded room, I once again felt isolated and alone. Cancer always has a way of doing that in the least expected moments. Now, I had to let go both of him, and my ritual and routine in keeping him safe from harm. This was yet another unexpected hurdle in pediatric cancer that was now placed in front of me.
Like so many of the other hurdles we experienced before, the only choice was to move forward, see what happens next, take a deep breath and step once again into the unknown.
Maternal Health Symptoms in Pediatric Cancer Survivorship: When the maternal caregiving system experiences a mortal threat
Joan Kearney, PhD APRN
Yale School of Nursing
Special Research Acknowledgement:
The mothers of Momcology for participating in this community engaged work.