Doing the difficult and necessary

I had no idea nor reason to know how old Claude Steward was. And all this time, he was advocating for the needs of “his seniors” while he was a senior himself!

I remember speaking to him while I was in Paris, about the former Semmes Elementary School building that a nonprofit under his direction owned. He said that his wife was pickpocketed on the subway once when they had visited Paris. As our call came to a close, he told me to be careful, referring to both the political unrest and crime he associated with the City. I responded, “I can get shot at home.” He laughed and said, “Yeah I forget where you’re from.”

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Journey to Healing - The Challenges

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.

Day 2 - GiGi D’Or

The point of the exercise was to uncover longstanding beliefs that no longer serve me, to reframe negatives into positives and to support myself in taking massive action moving forward.

As a result, I found today’s two-hour creative intensive session to be far more uplifting than the first night. I set the dial on my energy and focus instead of holding space for concerns that need not be my own. I can show empathy and compassion without taking on the emotional weight of external situations and the concerns of others.

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Happy New Year

Yesterday I admitted to myself that I have had two true loves: writing and music. While I have done technical and grantwriting professionally over the last 20+ years, I have maintained journals and documented my life for twice that long.

I have committed to completing a first draft of my first memoir, Journal to Healing, in 2023. Today I set up this blog and author’s page to hold myself accountable to the focus and discipline to get the thing done, the book written. It’s a big step because I am mother to a seven year old son, Jamie, and my soon to be five year old, Zach. I will be writing while they are asleep, between 3-6AM! The universe will provide the energy that I need to do all the things and the angels will work in shifts to keep me propped up, eyes open in front of pad, paper and computer screen.

I am doing this for myself and for others who need to hear what I have to say about challenging perceived boundaries of possibility while holding steady - to face down fear - and to hear one’s own inner voice separate from popular opinion.

My youngest son received a rare disease diagnosis at eleven months and it has been both curse and blessing. The book is about our journey. I hope you’ll follow my progress and cheer me on from the sidelines.