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 💚💙

Get #InTheLOOP with more stories by parents on the ICN blog >>
The ICN PFAC is committed to enhancing the quality of life for the young people and their families who live with IBD. You can get more information and join the PFAC at → improvecarenow.org/connecting-parents
ImproveCareNow exists to transform the health, care and costs for all children and adolescents with Crohn's disease and ulcerative colitis (Inflammatory Bowel Disease or IBD). To do this ICN has created an inclusive, transparent and collaborative community where patients, families, clinicians, researchers, improvers, collaborators and friends are all empowered to learn, share and continuously improve, bringing about more reliable, proactive IBD care and healthier children and youth. We welcome your involvement:
💙 young patients (14+) with IBD can join the Patient Advisory Council - "Being part of the PAC helps me remember that I'm not alone in this journey." - Rhea 
💚 caregivers of young people with IBD can join the Parent/Family Advisory Council "I was astounded by the instant bond established with parents I had never met. Every conversation provided me with strength. It ignited another purpose in my life." - Maria
💙 make a tax-deductible donation to support ImproveCareNow - "As a 501c3 non-profit, ImproveCareNow is proud to use every dollar donated to advance our mission of improving the health and care of children and adolescents with IBD." - Kristin Howe, Executive Director
💚 stay #InTheLOOP with IBD stories on the ICN blog "Sharing stories and experiences is affirming and validating. Our stories reach others and they help, which is the most wonderful part of being involved with ImproveCareNow." - Quint 
💙 download & use free, co-produced IBD resources - "Physical resources provide patients with actions that we can take toward bettering our quality of life, as well as our current and future care." - Quint
💚 join our CIRCLE -"Resources we found in CIRCLE eNews do not just focus on physical health, but also on critical areas like social-emotional needs, nutrition, back-to-school planning and mindfulness. These are valuable tools for my son to remain healthy." - Lisa 

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