Staying Steady in Stage 1: Mindfulness and Nervous System Care for Raregivers

The focus of our Women's Empowerment Circle this week was on nervous system regulation, and how to stay calm especially when you are noticing changes (Stage 1 on the Emotional Journey Map) in your Rare child. As a Raregiver, you may often be in a state of hypervigilance which is very taxing for the nervous system. The question is how can you set yourself up to be resourced even when you are sitting with your Rare child as they undergo their fiftieth surgery?

One of the foundational ways you can be resourced is by having a regular mindfulness or meditation practice–consistency is key. It can be tempting to let it fall by the wayside, especially when you are feeling good. Keep it up even when you don't feel like you need it because you will, and because each moment of sitting quietly is like putting drops of water into a bucket. Each drop adds up and when your bucket is full, you are resourced and more resilient.

One of our participants told a story of holding her son's hand during a procedure he needed, one that would greatly benefit him, and the whole time he held her hand and sobbed. Because she has been consistently practicing mindfulness for the past five years, she was able to be present with her son as he received what for him was a traumatic procedure as he didn't understand why he was having it. Being present in these kinds of situations takes practice and as the saying goes, “you default to your level of practice.” Regular daily practice is how you expand your capacity to show up in the particularly hard moments.

As a Raregiver, you will more easily be able to regulate and stay calm rather than focus on the what if or the doomsday scenarios if you practice regular self-care. This includes getting enough sleep, eating healthy food, and doing some form of exercise. Self-care may also mean you spend time in community with other Raregivers–we are here for you every Tuesday). The more you do these things the more you'll be able to handle the challenges that appear because you will more readily notice the early warning signs of going down into a negative spiral.

Mindful embodiment is very helpful to cultivate this noticing. You might pause and notice the sensations that arise when you are getting stressed out or into a state of arousal. During these moments, pause and come back to yourself. These micro moments of meditation are worth it because they add up and, if you are in the United States, and someone who likes to be highly productive, take the time to slow down, recharge, and reset. You will be more productive after you've taken a micro moment to care for yourself.

Coming up next week: Acknowledging “The New Normal”: Adjusting to the Diagnosis  (Stage 2 on the Emotional Journey Map)

Becoming a raregiver begins with receiving a diagnosis and a range of feelings will arise as your life shifts and you become the resident expert on your child’s Rare disease. How do you address complex care and which skills are needed to navigate the healthcare system? Come and share the essential skills that empower you to advocate for your Rare child’s needs and your own. Join us for a potent conversation.

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.