In June I had the enormous privilege of attending the General Assembly of the Unitarian Universalist Association, in person in Portland, Oregon. It was inspiring and uplifting to be with 2,000 Unitarian Universalists in person and hundreds more participating online. I reunited with longtime friends and made new connections. The highlight of my General Assembly was one I never would have predicted.
In one of the workshops I attended, I saw a woman wearing a t-shirt that said “Phelan Lucky” and had a picture of a four-leaf clover. I was overjoyed to see this t-shirt. As you probably know, my son has the rare genetic condition Phelan McDermid Syndrome (PMS). There are only approximately 3,000 individuals in the world who have a diagnosis of PMS. I was incredibly surprised to see this shirt at a gathering of Unitarian Universalists.
When the workshop ended I approached the woman and told her my son also has PMS. The woman is named Maureen, and her daughter has PMS. Her daughter is 39 years old, and they just found out that she has PMS last year through genetic testing. Maureen and I were so excited to meet each other and share our stories of parenting our children. We discussed all the joys and challenges of raising children with unique disabilities. Maureen raised her daughter for 38 years without knowing the reason for her child’s disability. She is celebrating having this new information and connecting with a community of parents who understand her journey. It was wonderful to talk about these issues with another Unitarian Universalist.
This past year is one that has been full of challenges and losses, both in our personal lives and in the country. Many of us, myself included, are feeling tired and worn down due to these challenges and the injustices happening in our country. Meeting Maureen was a joyful, unexpected surprise that lifted my spirits. This new friendship is sustaining me as I return to Seattle, in mourning and grief due to the recent Supreme Court ruling overturning Roe v. Wade. It is so important to find moments of joy and celebration in the midst of hardship. It is so important to practice gratitude for the blessings of our lives. I hope you encounter unexpected moments of joy and connection in your life, large and small. When we experience joyful connections, let us savor these moments. May they bolster us and sustain us through the ups and downs of our lives.
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