Somatic Support for Parents with Kids with Chronic Illness
Our Personal Journey with our son into and through living with UC
Until life and reality interrupted, I lived the life of a parent with healthy children. That’s the life of activities, work, meals, errands and the never ending movement that is every given day. The life of our family was busy, full of activities. Of course there were the regular and not so regular childhood and adolescent illnesses (talking pre-covid), but they came and they went. Even with the involvement of competitive athletics, we were very fortunate. Injuries didn’t cross the path of our family’s life often.
The days were days with school, homework, activities . They didn’t include questions of formation or frequency of stool. It certainly didn’t involve questions regarding blood in the stool or toilet.There weren’t weekly or monthly trips to the hospital or doctor’s office. We weren’t learning about medications, procedures and side-effects.
We had a son who loved to run and play his cello. We didn’t have to think that orchestra practices (without breaks) can be complicated for someone with Ulcerative Colitis. There was so much we had taken for granted.
As we approach the Fall of 2022, we are more than a year into the realities of chronic illness. Gratitude fills my being that as of a month or so ago, the word remission was uttered. Now, it will be every 8 weeks that our child has to go into the hospital for an infusion.
Given my profession, I wondered about taking up the spaces and offering the practices that I was leaning so very heavily upon. Except, I was the mom. I was walking alongside my child. I was also cognizant of the fact that this is and was his story. I wanted to honor his and mine relationship. I wanted to honor and protect his journey. Each step was so new, at times so overwhelming. I made the decision that I would be the mom. I have no regrets. There was a bond formed between us all as we gathered around to support son, grandson, nephew, brother, friend.
Hearing the word, “Remission,” brought about a shift for me. I stepped into a reflection mode. Looking back upon the year plus that had been lived. From the moments when symptoms began to appear, to the weeks and months before clarity of diagnosis we lived differently. I lived differently. I watched his body and energy dwindle. I watched his anxiety increase. I didn’t know to push for tests. When symptoms looked like they were getting better, I breathed a sigh of relief. I thought we made it through the woods. Until, the days returned when they came back and not only weren’t going away, they were getting worse.
I remember in those beginning days, I was scouring the internet. I was searching for peers for him as much as I was reading anything I could, trying to wrap my head and heart around what was happening. I joined an incredible Facebook group that brought parents of kids together, I read and read and read their posts. Taking in their stories, learning through their journeys. I created bags of things that would be on the ready for hospital trips. I truly let out a laugh when at a store, I found a game called, “Sh*t happens.” I thought what a fabulous game to bring some lightness to our situation.
When we heard the word, remission, of course there was relief. Not as much as I thought there would be, for just as many questions rummaged through my being. What does remission look like with a chronic illness? He still needs the medications to keep him out of a flare? How do we live with____? When the symptoms were obvious, I knew what we were looking for and watching. Now, if he is tired or lethargic, does that mean his iron is low? Or is he a typical teenager needing more sleep?
Perhaps, it was he and his sisters asked me to teach them yoga a couple times a week, that I began to think more about the parents and caregivers of kids with chronic illness. After the first somatic based yoga class, my son make the comments I hear from clients, he felt calm. He felt a sensation and reality of calm in his body that truly helped him, touched his anxiety, made a difference.
Of course, I know these things about the work I do. I’ve worked alongside kids and adults as they have navigated many obstacles that had interrupted their lives. This felt different. I feel so changed by the journey of walking alongside my son. I feel in awe of the courage and fortitude he has shown, I have grown in compassion for others, I feel gratitude for all of the amazing realities that flowed our way amidst a bad thing happening.
I felt it was time to create a somatic support system for parents / caregivers of kids with chronic illness. How can breath and body support a person and their nervous system as they support another human being going through illness? How can calm be reached when nerves and anxiety are heightened? What actually helps? What doesn’t? What are somethings along the way, that I wished I had learned sooner?
Life gets even busier when a child is ill. There aren’t a lot of free moments, to say the least. What were the support elements that whether I was driving to the hospital (we used a clinic that was 2.5 hrs away), sitting in the hospital (alone or with my child) or laying awake at night while sleep eluded me that helped?
It’s with the realities of what these days and months have held that I created this space of exercises that go from 30 seconds to 45 minute to an hour. They include opportunities to do alone, with your child, to include siblings and/or spouse or partner.
Some of these moments are just for you and some of these times get to be solely about you, your journey as the one walking alongside your child. My hopes and wishes are that you will be given tools to carve out the moments to set your feet back on the ground and replenish your own being as you journey the road of loving a child with chronic illness.
Links and more will be coming the week of August 29th…
