Opening To Feelings
Our first Women’s Empowerment Circle of 2006 was incredibly powerful. We began by greeting one another and settling in, and I introduced the theme of gratitude. Gratitude is not a way to bypass reality, but rather is a practice of presence. Early on, someone shared that a child in their Rare community had died suddenly. Sudden deaths are especially destabilizing; there is no time to prepare, no gradual acclimation to the unthinkable. For raregivers, when a Rare child dies, it brings the fears that often live quietly in the background straight into the foreground.
Reflecting on death invites us into Stage 5 on the Raregivers Emotional Journey map, because we may find ourselves experiencing anticipatory grief. Even during periods of relative stability, the awareness of fragility hums beneath daily life. When death comes this close into your orbit, it underscores how precious and how precarious life can be for your Rare child. We spoke about how moments like this can trigger catastrophic thinking, pulling us into imagined futures, hypothetical scenarious filled with loss. Together, we explored another option: slowing down and allowing ourselves to feel the fear rather than bypass it. Practices like sensation tracking where we gently notice physical sensations as they arise brings us back into the present, where vulnerability can be felt without overwhelming us.
It is courageous to be willing to look at the reality of death rather than squash your feelings or turn away. At the same time, we honored that squashing feelings is a coping strategy, one that has helped many raregivers survive. Rather than discarding it, we can thank it for the role it played and gently let it know that we now have other options. We also talked about the importance of noticing where your attention is at any given moment; this awareness alone can interrupt a negative spiral. And we named the need to check in and see whether we are resourced, especially after exhausting periods like winter break, when being underslept and under-resourced makes spirals more likely and self-compassion even more essential.
Our journaling prompt was simple and profound: What do you observe when you slow way down? Many noticed their nervous systems settling as breath softened and the body relaxed, creating more space to be with vulnerability and welcome it with tenderness. Slowing down creates room for presence, and presence allows us to live in this moment rather than in imagined futures that may terrify us. One resource we shared was the free Insight Timer app, a gentle support for cultivating stillness. Ultimately, the invitation of our circle was to learn how to be with what is, moment by moment, as you continue navigating life as a raregiver.
Here is a closing reflection question for you: When you slow down, what do you notice about your body, your breath, and where your attention naturally wants to go?
Coming Up Next Week: Stage 1 - Noticing Changes: Nervous System Regulation - Staying grounded and present as things change
This week our theme will be Noticing Changes. In the early stages of becoming a caregiver for your Rare child, you are asked to embrace many changes as you move from a full or part-time professional to full-time caregiver. Many feelings may arise including fear, guilt and possibly shame as you step into being an expert on your child’s Rare disease which can be overwhelming. In this meeting, we will explore ways of staying calm and grounded as you navigate your ever changing life as a raregiver. Learn simple ways to regulate your nervous system. Join us for a potent and practically supportive session.
Please Join Us for the Women's Empowerment Circle every Tuesday at 10am PST.
You may not realize how much you need the Raregivers community until you find it.
Zoom Link: https://us02web.zoom.us/j/84782918881
We look forward to being with you soon.
