Book - The Still Point of the Turning World

The Still Point of  the Turning World by Emily Rapp

"Like all mothers, Emily Rapp had ambitious plans for her first and only child, Ronan.  He would be smart, loyal, physically fearless, and level-headed, but fun.  He would be good at crossword puzzles like his father.  He would be an avid skier like his mother.  Rapp would speak to him in foreign languages and give him the best education.

But all of these plans changed when Ronan was diagnosed at nine months old with Tay-Sachs disease, a rare and always-fatal degenerative disorder.  Ronan was not expected to live beyond the age of three; he would be permanently stalled at a developmental level of six months.  Rapp and her husband were forced to re-evaluate everything they thought they knew about parenting.  They would have to learn to live with their child in the moment; to find happiness in the midst of sorrow; to parent without a future."        image & summary from goodreads.com

***********

Celia enjoys listening to
Big Mouth Billy Bass
September 2010

I was drawn to this book because two children in our family had very brief times here on earth. When she was about 18 months old, Celia was diagnosed with Batten Disease. This enzyme deficiency causes neurodegeneration. Most children with Batten die before their 10th birthday. Celia passed to the other side a few months before her fourth birthday.

With the OK of Celia's mother, I share Celia's picture as well as some thoughts I had as I read about the author's journey with her son Ronan. 

“My plan was simple and yet impossible: to go with him as far as I could along this journey that we call life, to be with him as deeply as I could from moment to moment, and then to let him go.” (115)

Celia taught us that our journeys are sometimes short and we need to love well and completely and do the best we can with the time we have with each other.

The author wrote the following observation as she participated in a support group - ‘More than anything else, however, each face in that circle, infant or adult or otherwise, taught me that learning how to live with death ... - was also about learning how to live.” (135)

Time and time again, family talked about how Celia helped us more fully appreciate life. 

“Healing, for Ronan, would not mean the radical healing of his physical form. It might mean instead his full acceptance into community, into family, not the fixing of his physical body. Healing might mean no prayers for a miracle but prayers for his peaceful, albeit short, life. … Healing for Ronan might simply mean people meeting him and experiencing his uniqueness without thinking He’s blind, he’s paralyzed, he’s deaf, ... another mom pointed out to me [that] our minds are littered with these classifications that block us from seeing the beauty of individual souls housed in particular bodies.”  (149)

Being with Celia, it was very easy to see the beauty of her entire being. She radiated light and love. 

 “Ronan lived in the world held by people who loved him and fed him and talked with him and met him on his own terms. When he died, he will have been fully loved from his first breath to his last and then after.“ (151)

Celia is fully loved - from her first breath to her last - and beyond. 

Read more about Celia here and here