Day-Dreamy

Throughout 2020 I worked on a Photovoice research project with 5 other mothers of children with medical complexity. Part of this project included a virtual photo exhibition created by our group of mothers, but I’m pleased to share that the final piece of this project, the research paper, was published this year! You can view and/or share a PDF of the published paper here.

Every parent is different when it comes to navigating serious illness and complex health issues for their family, and we are all unique when it comes to how much information we want to process when under extreme or unimaginable stress, but I would have appreciated reading “What I Would Do to Take Away Your Pain”: A Photovoice Project Conducted by Mothers of Children With Medical Complexity early in my medical motherhood journey. I imagine I would have benefited from the honest perspectives of mothers’ facing similar challenges and it’s possible that it would have helped me 1) feel less alone, 2) better articulate and explain my family’s situation to friends and family (and possibly even my daughter’s care team), and 3) adopt a perspective of grace and self-compassion earlier in my motherhood journey.

The content (data) for this project was created in 2020, but published in 2023. When I read and reflect on it now, I’m struck by how my family and I have grown and evolved. Specifically in the ways Tyler and I partner with one another to care for our (now three) children, how I communicate with and rely on my community on a day-to-day basis, how I continue to “create space” (as the paper describes) in stressful circumstance. And I’m proud of the ways I have grown as an advocate for Nora, myself, and my family.

On the topic of themes from this research project, I think the theme of “creating space” best describes the months between my most recent post (May 2023) and today. I apologize for my long absence in this space and across social media. As many of you know, we went through an incredibly challenging 7 months with Nora’s health (November 2022 – May 2023) which led to what I call cocooning — rest and retreat for me and my family. When day-to-day life is filled to the brim, exiting from the social internet is sometimes one way to create rest. It’s important to note (if only as a reminder to allow myself ongoing grace) the Winter and Spring of 2023 also included navigating the first year of Penelope’s life as well as an adjustment to the first year of a new job at a new company for Tyler (additional stressors, right?!) but, as I’ve mentioned in reflections on challenging times, we endured. I’m happy to share that for Nora and our family, the summer months were restful, healthy (for the most part), life-giving, and what I would describe as healing.

Since the start of fall, life has been busy. The way I explain this to friends is like this, “Instead of being busy trying to survive, we’re busy attempting to engage in ‘the normal’.” Our family has been focusing on general life management. Which, now as a family of five, is a never-ending, creative, balancing act. Tyler and I find ourselves often remarking on how our lives, as we are building and approaching them in this moment, are different — infinitely less overwhelming — than at the start of 2023. We are incredibly grateful and see this as an answer to the prayers of friends, family and community.

Life management means I have been working to cultivate small windows of time to focus on creativity and explore interests. The results have been surprising— the creation of weird collages, a painting that (according to Everett) looks like a brain, the start of a few possible blog posts, and perhaps what I’m the most excited about: signing up with friends for a pottery workshop in the new year.

 I’ve even been day-dreaming about what it might look like to host a backyard community gathering for friends to connect and create, or even organize a Roller Skate (and/or blade) club with girlfriends (let me know if you’re interested in either!) As the start of 2023 clearly demonstrated, I know all of my ambition and drive and the small windows of time to create is subject to change based on Nora’s health, hospitalizations, transitioning to survival or recovery mode, the availability of home nursing support, and managing the stress of what our research paper describes as “the repetitive nature of trauma.”

Perhaps one day this won’t be, maybe eventually there will be predictable opportunities to cultivate creativity and facilitate community— perhaps we’re on a road to a healthier more stable place for Nora, but for now, I’m comfortable in this day-dreamy space. If you have any day- dreamy ideas for me around this blog space (what makes you open this email in your inbox? Click the link in bio? Which posts have you enjoyed reading?) or if you have any questions or comments related to the attached Photovoice project, please feel free to post in comments or reach out directly through the contact tab. Love to all, thank you for reading.