We always try to watch for new resources for families that can help them on their journey, and we were excited to see a new book (January 2022) written by Cheryl Wood, mother of a child with Phelan-McDermid Syndrome. The book is entitled Tao of Davis: A story of developmental disability in a mountain town.
Having someone put into words the experiences we feel as parents make us feel seen. It certainly helps us to know we are not alone.
From the author:
"When I hear from others that my life appears to be a challenging one, I smile for I have yet to witness a life without a challenge.The follow-up comment, which never fails to turn my lips downward with discernment is that “they” could not do it, be in my shoes and tend to a family member with special needs. Nonsense. Any of us can. At some point most of us do. Accidents happen, diseases loom in the corners, loss occurs (intellectual or physical), parents and spouses age, and children are born who are different and will require more assistance. What I know is that each of us with the responsibility of caretaking can be flawed enough to be embarrassed when we stand out, and strong enough to create a home filled with laughter alongside the tears. We can learn to be flexible when our days go sideways, and to regain our balance when we stumble on ever-shifting terrain. Living with or without challenges is a physically and mentally fragile process.To do it well requires practice, and this starts with today, not tomorrow. I have learned to forget about happily ever after and fight hard for happily ever now."
You can find the book on Amazon.
You can learn more about Phelan-McDermid Syndrome by visiting the Foundation's website, pmsf.org
Visit Chromosome 22 Central's website at c22c.org.
Do you have a story or resource we should know about? Email us at email@example.com.