Posted by Cheryl Herbsman on May 22, 2023
Diagnosed at age 15 with severe IBD, my daughter’s journey with illness was bumpy, but manageable, until the summer after her sophomore year of college. Her colonic health had been on a slow decline for some months, and that’s when cDiff took advantage. Though her health worsened over the summer, she was able to convince her doctor to let her go back to college in the fall. There, cDiff continued to recur and stopped responding to all medications. An oral fecal microbiota transplant finally shut down the cDiff but sent her into her worst flare ever. She was hospitalized on the opposite coast from where we live. I flew out to be with her, thinking it would be for a few days and ended up staying a couple of months until she was stable enough to get her home to California, where she was admitted to a hospital there. Of all the challenges we’ve faced over the course of her illness (she’s now 27), the time we spent on the East Coast, far from all our supports was the most difficult. She was on an adult ward there, and they didn’t seem to understand why I insisted on staying with her.
It was the first time my stoic child became depressed. And I found myself overwhelmed, afraid, and alone.
I know so many of you understand these hardships. It took me some time to recover from it all. Aside from therapy and love and my daughter’s health improving, what really helped me was finding my way to mindfulness meditation practices that resonated. I’d tried meditation before, but it didn’t seem to work for me. I couldn’t still my mind, and I was restless and impatient. Then I discovered a practice that saw mindfulness and meditation differently.
With these mindfulness and meditation practices I have learned...
💚 to not fight with my busy mind, yet to step outside of its busyness;
💙 how to take care of myself when times are tough, so that I have more to give;
💚 how to stay present in the face of fear or anger or overwhelm in a way that allows me to honor my feelings, while at the same time, not letting them get the best of me;
💙 that I can remain centered and calm and available to the people and situations around me
Mindfulness and meditation have helped me so much that I became passionate about sharing these practices with other parents dealing with their children’s chronic illnesses. Under the auspices of the Greater Good Science Center at UC Berkeley, I trained for two years to become a teacher of mindfulness meditation. Now I’m offering classes for parents of kids with chronic medical and/or mental health illnesses. My current offering is a thirty minute drop-in class, which is offered free of charge (donations are accepted, but never expected.) Later in the summer, I plan to offer a longer class — a 90-minute session that combines mindfulness meditation and personal writing. Telling our stories can be such a benefit, as I’m sure you in the ICN community know!
If you would like to experience a taste of mindfulness for caregivers and learn more about how this practice can help ease the path we’ve found ourselves on I hope you will join me at the ImproveCareNow Parent/Family Advisory Council (PFAC) "All Call" on June 12 at 7 PM ET (you can register here.) Hope to see you there 💚💙
