As I have dedicated more time to working on “Journey to Healing”, I experienced the pain that Jeff Goins, goinswriter.com intuited when I asked for feedback on my approach to writing the book. He thanked me for sharing, and said that it “sounded challenging and painful” referring to writing about caring for our youngest with a rare disease diagnosis.
I sat in an AROHO (A Room of Her Own) writing group three hours yesterday with my attention focused on drafting a timeline from Zach’s birth, diagnosis, three hospitalizations and my loss of fear of his death and dying. That is the trajectory of this first memoir.
Later in the day I felt sad and drained. I realized that thinking about and approaching the story from a perspective of diagnosis and prognosis in combination with horrible hospitalization experiences was depressing. This should not have come as a surprise. Duh.
This morning, I set a task of revising the timelines and filling in the gaps to include photos over the first four years of his life. I set an intention of shielding myself and my emotions from a draining downward spiral this time. I have to get through a first draft of this book!
As I scrolled through images and video footage, different impressions filled my thoughts and feelings. Zach has led a joyful and adventurous life. Yes there have been difficult moments and periods, anxiety, frustrations and fears along the way, primarily for us. But most of the time, we have risen to the challenge of making adjustments to accommodate the boundaries of Zach’s ability across multiple dimensions. We were making adjustments at home or I was pushing back against systems that were encountering a young person like our child, with a mom like me, for the very first time.
The process has been iterative. I researched and asked questions. I read every test result and researched more. Some providers were fired from the team. Some left on their own. Others were pushed, nudged to find solutions. Along the way I met people with helpful pieces of the puzzle and found insights when and where I wasn’t looking. Therapists and extended family built devices. Some remembered us when attending conferences and returned to advocate for Zach receiving a new to the market intervention. Fortune has smiled on us and pushing through barriers I must believe that our strong advocacy for our child has resulted in some benefit to other families.
How do I best advocate? One issue at a time as time allows, that’s how.
