Seeking a good read for inspiration at the start of a new year? If so, I highly recommend, More of Everything: How I became a better parent to my child with extreme special needs by lifting my emotional burdens.

Written by a scientist who is also a mom of three, Janie Reade (a pen name to protect her family’s identity) describes her experiences parenting a son with a rare, severe genetic disorder. It’s a concise and compelling 20-year journey. Beginning with the frustrating bafflement when her son was young as he continued to miss early developmental milestones to fighting obstacles such as his aggression and no common language to communicate with him, to the scary uncertainty of best choices after the diagnosis of the Syngap1 disorder. And finally, to resolution, triumph and transformation—for both son and mother.

The book is divided into three parts—each with its own special focus. In Part I Janie, tenderly and thoughtfully shares her personal experiences at key points as her son grows. Through short vignettes the reader gets a close-up look at the challenges she faced—both at home and with health professionals—as she searched relentlessly for answers. I couldn’t help but be awed by her amazing endurance and resilience, clearly propelled by her love for her son. Part II covers her growth from frustration to acceptance as she puts her remarkable strengths into action on behalf of her son, as well as for herself. In Part III, Janie discusses how being coached supported her own growth, helping her to examine her thoughts, re-frame her self-talk, and learn to appreciate the generative, life-giving moments in the midst of all the challenges. In fact, the coaching was so transformational for her that she decided to become a parent coach to help other parents going through similar experiences. 

In all three parts, after each anecdote or story there is a reflective summary, along with lessons learned. These “takeaways” are reflections of clarity and deep humility. Reading them, I was struck with how familiar they are. What parent couldn’t relate to second-guessing ourselves or regretting a quick retort or a spur-of-the-moment decision?  What parent hasn’t felt like a failure at some low point? What parent hasn’t questioned the expectations we have for our kids? More of Everything speaks to all parents, not only parents of children with extreme special needs. Like all parents, the author had to make difficult decisions and come to peace and acceptance about those decisions.

Here we have Janie, a developmental geneticist by career. Yet uncertain, puzzled, frustrated as a mom. Candid in her vulnerability, Janie draws the reader into her own thinking processes. We come to ponder her concerns and choices along with her. And as she adroitly describes her own self-care passage, we are right there with her, understanding the continual constraints, and sometimes ineptness, associated with nurturing ourselves while giving so much of ourselves to our kids. Janie invites us into her mind and shares her heart with us in that process.

In fact, that’s what I loved most about the book: the connection I felt with Janie thanks to her honesty and candid vulnerability. I cried with her; cheered her on; and rejoiced in her victories—small and large. I saw in her story slices of my own struggles. And by the end of the book, I came to appreciate myself in new ways, just as Janie did.

Copyright, 2023, Gloria DeGaetano. All rights reserved.