Negotiating the fraught space between hope and reality is one of the most wrenching parts of being a complex caregiver. I have written before about how palliative care allowed me to balance action and acceptance early in my son Colson’s life. However, my husband Jacob and I didn’t begin working with palliative care until Colson was seven months old. Colson experienced complications from mitochondrial disease since birth. By the time of our referral to palliative care, our margin of hope was so severely shrunken by the diagnostic odyssey that it was almost invisible.
We chalked Colson’s post-birth hypothermia and low-blood sugar up to his early-term delivery. “Nothing an overnight in the NICU won’t fix!” we chirped. When his abnormal infant blood screening indicated glutaric acidemia type 1, we pepped each other up. “Okay, it’s a challenging but treatable condition. We can do that!” After that was ruled out and we began working with a broad differential of metabolic illnesses, we steadied ourselves with thoughts like, “We won’t worry about the scary end of the spectrum until we have to.” By the time we zeroed in on primary mitochondrial disease (which sits squarely at the scary end of the spectrum), we held out hope that the proportion of defective mitochondria in Colson’s cells would be low. “There’s always a possibility!” It wasn’t until Colson’s genetic testing results came back with a 100% mitochondrial mutation load that we had to redefine the parameters of our hope. Hope for a mild disease trajectory turned, overnight, into hope for time together. Hope for an abundant life mutated into hope for a delayed decline and a good death.
Shortly after this brutal perspective shift, I took Colson to visit my mentor Barbara. Barbara is emotional intelligence personified. She hired me to work with her in the nonprofit field when I was 23. She taught me volumes about humility, vulnerability, empathy and presence during our six years of working together. Her wisdom enriched all of my relationships, including my relationship with myself. She built my emotional bandwidth by paying attention to my strengths, my weaknesses, and my coping strategies in tight spaces.
As she held Colson on the day of our visit, while I wrung out my broken heart, she gave me the advice that carried me through Colson’s life. With all the tenderness the moment required, she said “Liz, you can’t out-think it. You can’t out-good it. You can’t out-stubborn it.” “It” being Colson’s diagnosis. “It” being whatever meeting his illness head-on might demand of me. “It” being the walking woundedness of being broken wide open.
Barbara named my coping strategies to me at this moment. In doing so, she achieved two miracles.
She nudged me towards unmitigated acceptance. Barbara knew my solution to most problems was a combination of research, planning, and pure will. Give me an internet connection, a spreadsheet, and some coffee and I could figure out the best small business insurance policy, get a grant application in on a tight timeline, or develop a project plan for a new client. Barbara also knew how highly I value integrity. She humored my hubristic belief that the key to happiness was to be good and do better – even when the standard by which I measured my goodness or others’ was often unrealistic. But biology doesn’t care about the contortions us humans will bend ourselves into to get what we want. Biology doesn’t care about our virtue. Biology is indifferent. That’s why it works.
She shined a light on my strengths. My nudge towards acceptance was by no means a defeat. It was a strategy shift. Up until the full reality of Colson’s diagnosis, I had wondered “How can I fix this? How can I minimize this? How can I make this go away?” Once I accepted the lack of control I had over the course of his disease, I began to think more holistically about my options to manage it. My brain, my grit, and my goodness all still had a role to play, but that role would not be curative. It would not solve the puzzle of my son’s deadly disease. My coping strategies helped me achieve a sense of influence and insight, rather than resolution. I still researched the efficacy of various seizure medications. I still forced myself to bear witness to Colson’s discomfort. I still tried to be a cheerful and gentle mama, even when I wanted to scream in frustration. I put in the level of effort that felt right to me, without berating myself for the limits of that effort. The seizure medications never worked; Colson still experienced discomfort; and I occasionally screamed. But I knew that I was doing my best. And I accepted that my best would not translate into longevity for my sweet boy.
One of the things I love about being in the rare disease community is the rapid-fire relationship building – with other parents and caregivers, as well as providers. There’s not much room for small talk when time is the enemy. Palliative care providers can observe, reflect, and probe caregivers on their unique coping strategies. Questions like, “What do you do when things feel stressful? How does that help you? How might that hinder you? Are there other ways you’d like to learn to cope?” can go a long way in surfacing desired supports for the entire family impacted by a child’s complex illness. I am sure there is a body of evidence-based literature about this, and I am fighting the urge to do a deep dive in it for the next several hours! But I don’t need to know it all to know this: the mirror that palliative care providers hold for parents and caregivers works wonders in the journey towards acceptance. I was lucky enough to get a head start on that reflection with Barbara, and Colson’s palliative care team kept it going for his four fulfilling years.
Liz Morris loves exploring complex questions. Her professional experiences in project management, librarianship, and community development prepared her well for her favorite role as mom to Colson. Colson, impacted by mitochondrial disease since birth, inspired Liz to face the complicated aspects of his life through writing and advocacy. Liz serves as a family advisor at Seattle Children’s Hospital, and is a volunteer ambassador for the United Mitochondrial Disease Foundation. She is committed to helping families find the information they need to help them live well in the face of life-limiting illness. You can find Liz on Instagram @mrsliz.morris