Finding & Building Resilience
While our son convalesced for several weeks in the Pediatric Intensive Care Unit (PICU) and then in the Rehabilitation Center, we kept a blog. The hospital offered a blogging platform called Care Pages for families who had children in the hospital. It was an easy way to keep friends and relatives informed of a patient's progress as well as a way to connect with other patients and families in similar situations. I also learned that the nurses and other hospital personnel would follow the stories of their patients as well.
At first we did what the site seemingly intended its participants to do, we updated everyone about our son's daily progress. But as we continued to write the entries and get feedback, the blog became something different entirely. It not only became a tool for us to find inner resilience and strength as a family unit, but it became a conduit through which we forged our new normal. The process of crafting the entries helped us redefine who we were as a unit and how we would return to our home as this unit.
My goals for each entry were to:
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Find the moments in the day that gave us hope
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Keep humor in the story
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Honor the people and the love present in our lives
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As we move throughout the course of our lives, we find ourselves in various roles. Spouse, parent, daughter, son, sister, brother, professional, artist, friend, aunt, uncle, etc. When the unexpected happens, such as a life-changing medical event or diagnosis of a child, roles we hadn't considered before, are now thrust upon us. Roles such as patient, caretaker, advocate, nurse, case manager, must now be assumed and incorporated into a family’s identity. An illness or disability can become an active entity altering roles and relationships.
This can be devastating to some who are not prepared to play a different role in their loved one's lives. How we see ourselves functioning in our world is crucial to maintaining our existence. If one doesn't feel they have some control or power over their role in a relationship, they will most likely not be able to sustain their place in that relationship. Embracing the changing roles in a family is crucial not only to the patient at the center whose life depends on the people in his "village," but also to the members of his village.
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In Veena Das’ recent book, Affliction, she explores illness as a function serving a purpose that is intrinsically woven into the very fabric of personal relationships and communities. Das, an anthropologist, demonstrates how healing and cure is actually determined by the relationships of those involved by their reaction and response to the function of affliction. The afflicted become an orbital point by which the people in their lives find their function and definition. Her case studies of illness and healing reveal the different trajectories possible that are complicated not only by available resources but by these changing relationships and how this impacts illness narratives within families and communities. Illness functions in our relationships that are co-created by the ones identified as afflicted and the ones identified as healthy.
Chronic illness, disease and disability are powerful entities that change the course of lives and families. It's important to recognize that the foundation of the relationship remains the same and is not affected by affliction. A mother is still a mother, a father is still a father, and their roles do not change, only the circumstances. Mothers and fathers of all children, whether healthy or not, want their children to be safe and live meaningful lives.
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Remembering this while experiencing a significant event in a family, such as a recent diagnosis can be helpful. You will still be their mother, father, sister, brother, etc., but how you express this may be different from what you expected, and this is okay. A person living with a chronic illness or disability will most likely need some form of assistance throughout their lifetime, and will most likely need family members to facilitate this assistance. Finding your meaningful place in their lives will not only help them live better, it will help you live better.
Writing poetry about our experience is one of ways I found my personal resilience. It helped me to process what was happening, and it helped me to express how I was feeling. Here are some of the poems I wrote during our son's medical crisis.
