Being A Super Mom Means Regulating Your Nervous System
By Padma Gordon
Navigating a child’s Rare disease is uniquely challenging. There is so little information. You receive genetic counseling in the hospital, and then, for many raregivers, there is nothing. Until fairly recently, meaningful support was largely unavailable, that’s where we come in. Living in this prolonged uncertainty places the nervous system under constant strain. One of the most important skills a raregiver can develop is learning how to regulate their nervous system. Self-care is not indulgent; it is a form of self-empowerment. The more grounded you are within yourself, the more capacity you have to meet the realities of Rare disease as they unfold.
In our Tuesday support group, participants shared what helps them regulate their nervous systems on a daily basis. Meditation, especially grounding meditation, was a favorite. One participant shared that after practicing meditation, when she gets triggered, she sits with her sensations for five minutes and is able to watch them pass. She also spoke about the importance of having “buckets of self-compassion.” Raregivers are not super moms. One participant reflected on a time when she was taking her Rare son to twelve to fifteen practitioner appointments each month. Eventually, she realized it was too much for her, and for her sake, and her family’s, they stopped. Pausing to assess what is actually sustainable for you is itself a powerful form of nervous system regulation.
Prayer is also a deeply supportive practice. Connection to the divine can bring comfort, steadiness, and a sense of being held. Simple somatic practices can also help settle the nervous system in moments of overwhelm. Gently holding the thumb of one hand with the other stimulates the vagus nerve and invites the body to soften. A gentle face hold where you place both hands on the sides of your face and take a few slow breaths can help you come back into the present moment. Presence is key. When you pause and be present with yourself, you are also tending to your inner child.
Ultimately, how you are with yourself is a choice. Let go of the hero’s cloak. Drop the superwoman costume. Be patient and honest as you assess your capacity: how much can you give while staying in integrity with yourself? What is good for you is also good for your Rare family. When you choose self-compassion and presence, your nervous system begins to relax, and over time, you may find yourself resting in a deeper pool of calm from which to meet this journey.
Coming Up Next Week: THEME: Acknowledging “The New Normal”: Adjusting to the Diagnosis (Stage 2)
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, develop the skills needed to navigate the healthcare system and take care of yourself as you navigate your new medicalized reality. Come and share the essential skills that empower you to advocate for your Rare child’s needs and your own. Please 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.
𓆩♡𓆪 𓆩♡𓆪 𓆩♡𓆪
