Resilience is an odd term. Its meaning varies so wildly. It’s typically used to describe some inherent personal quality, i.e. “look how resilient they are!” I know better. While there are aspects that are personal, there are many more layers that have nothing to do with one person alone.
In the research literature, being resilient is linked to experiences and context over time. Likewise, describing resilience as something an individual can hone or control alone misses the collective opportunities for resilience at the family, community, state, and federal level. These are opportunities separate from individual resilience – and importantly could prevent the traumas that require it in the first place.
In different ways, most NICU families demonstrate resilience. However, resilience can look very different from person-to-person and family-to-family. Likewise, expressions of personal or community resilience are not always valued in the same ways. In the U.S., many societal characteristics help define who or what is resilient, including individualism, perfectionism, a sense of urgency, quantity over quality, paternalism, and either/or thinking, among others. These ingrained notions pervade expected responses from families, communities, and institutions in the NICU and elsewhere.
When I think about our resilience in relationship to the births of our micro preemie twins, I tend to think less of those blurred initial months in two NICUs than I do about the post-NICU time. Perhaps this was because we were on pure auto pilot, or perhaps, since then, I have been able to widen my frame as to what resilience may look like for us.
The need to shape and re-shape resilience continues. For us, the task of developing and honing resilience has largely felt like a personal endeavor, since we’ve only encountered a handful of people or programs focused on resilience at all, never mind with a focus beyond the individual.
Two experiences keep rising up.
Recommended Testing
The first occurred when my kiddos were 12-18 months old. It was the first time I can remember that we said “no” to a test recommended specifically for them. We had said yes or no to this, that or the other thing previously, but the “no” was typically to things like parent support groups or a research study, both of which felt like unnecessary strain.
I remember feeling immense relief at that first definitive “no,” knowing deeply that we were being resilient in a way that we hadn’t previously.
We had originally said yes to the “food study,” but when the packet of at-home instructions arrived in the mail, I balked. This is true even as we were laser-focused on learning as much as we could about their ongoing medical and developmental challenges. One of the things we investigated for years was “failure to thrive,” which by the way, is one of the worst names of a diagnosis I’ve encountered thus far. They were underweight, yes, and not growing as expected, yes, but they were thriving in so many ways!
The packet instructed that I essentially needed to do a “plate waste study” to determine how much of the food they were actually eating. However, being that they were toddlers, this wasn’t simple. The expectation was that I would weigh their food before I gave it to them – and weigh it afterward. But, this meant I’d have to weigh the food on their face, highchair trays, floor and ceiling. I stood looking at them in the kitchen as they ate a snack and I thought, absolutely not. In my gut, I just didn’t think this was the key to understanding what we didn’t know. And right then, it felt like it might be the thing that sent me dangling further off the edge. So, for me, resilience was rebuffing a piece of the system that didn’t think collaboratively and comprehensively, and certainly didn’t consider what we were up against daily.
COVID-19
The other experience I keep going to is happening now. While COVID-19 is certainly something we’re all dealing with, the old narratives abound about personal vs. community-focused and community-derived resilience – and very little is said about equitable access to supports or environments that foster resilience. And, for so many families of former preemies, resilience is being especially tested, in ways seen and many more that are unseen. We had worked so hard over the years to weave our risks and risk-reduction practices into daily life. Yet even so, it all came roaring back to occupy an even more primary space in my brain as the threat loomed, and still looms, large. The unknown lurks considerably prompting isolation, decision fatigue and more. Given what we’re doing now, I will never again call our first-year interactions with the world “quarantine.” But that is indeed what everyone called it then. Every day is a challenge to, and a negotiation with, resilience. At the same time, it is a journey full of resilience on many levels as we make constant decisions about the unknown that work for us.
What’s clear to me is that resilience means different things to different people. And while resilience is a hallmark of having preemies, it shouldn’t be relegated to families alone. We must demand that communities, institutions, and policy build in the structures and supports to collaborate, and reduce the need for, such vast shores of resiliency at every level. We can demand it in our own lives and journeys. We can also help build it in more broadly by participating in our communities and with relevant organizations so that it’s baked in for everyone.
Virtual support groups allow families to access support at all stages of the NICU journey, from the comfort of your own home.