When I first started working in pediatric palliative care, I was introduced to a simple idea that I have been pondering more regularly in the new year - at any...
When I first started working in pediatric palliative care, I was introduced to a simple idea that I have been pondering more regularly in the new year – at any given time, people hold on to multiple hopes. Parents and caregivers of a child with a complex or life-limiting illness are likely hoping for a miracle or cure while also hoping for well-managed symptoms, a birthday celebration, or just that one specific, obscure brand of candy is stocked in the hospital gift shop. Some hopes come to fruition, others may not, and all are substantive to a family’s journey. There is remarkable wisdom with tempering hopes in adversity. In light of a sort of universal grief brought to us by 2020, I am trying to tap into the lived expertise of these patients and families in 2021. Even if “precedented times” seem like enough, I think we all deserve – and are capable of – hoping for more.
In the spirit of collective wellbeing, I asked nine members of MannMukti about hope. Included below are their eloquent thoughts interwoven with some of my reflections on what hope was, is, and can mean to us all.
First, I asked what they hoped for at the beginning of 2020. Several people mentioned and lamented travel plans. Every single person revealed intentions for accomplishments and growth. Others, like me, were preparing for graduate school, and many were exploring new job opportunities or re-evaluating career trajectories. I was struck by one person who reminisced a bit farther back and shared how they were “devastated” when their professional and academic goals were “shattered” at the end of 2019 leading into 2020. Of course, difficult feelings and slighted expectations existed for all of us before March of 2020. Yet, in my search to rediscover hope, I was struggling to envision anything better than my pre-pandemic world. I carried a misplaced, romanticized nostalgia for our old normal and wanted to return to our 1) maskless, 2) non-social-distanced, and 3) less-Zoom-competent selves. For me, the proverbial “you don’t know what you have until it’s gone” was remixed to “you only hope for what you know.”
Next, I asked what they were hoping for in 2021. I hesitated to ask this question. I can’t say I believe in manifestation, but, of course, the times were unprecedented, and I was subconsciously wary of anyone jinxing anything. Still, collective wellbeing and all, so I asked anyway. One person was excited to raise a puppy with her partner in a new home, several disclosed a personal urgency to make a difference and promote systems-level racial justice, and many shared their relief about the COVID-19 vaccines.
Finally, I asked what hope meant to them. I found truth in every answer. Hope is actually “the bottom, not the top tier in Maslow’s hierarchy”. Hope is “motivation to create a better future” for all. Hope is “fuel for tomorrow”. When one person explained hope in context of ancestral history and wisdom, I recalled an affirmation I once treasured – “I am the hope of past generations”. Perhaps cultivating hope for the future based on progress from the past (or survival despite the past), makes the present more bearable. Possibly, beautiful.
I’ve been told by palliative care providers that understanding the multiple hopes held by patients and families can mean that, even if God withholds the miracle or if medicine offers no cure, there is still something more – comfort, a celebration, obscure candy. As I continue to reflect on how to practice hope, I am encouraged by my resilient community who is hoping alongside me. Whether or not 2021 sets a new precedent, I continue to hope that, at the very least, a couple I know will eat pickles in the restaurant that brought them love.