Penguin Press (HC)|March 12, 2013|Hardcover|ISBN:: 978-1-59420-512-5
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 had to learn to live with their child in the moment; to find happiness in the midst of sorrow; to parent without a future.
The Still Point of the Turning World is the story of a mother’s journey through grief and beyond it. Rapp’s response to her son’s diagnosis was a belief that she needed to “make my world big” – to make sense of her family’s situation through art, literature, philosophy, theology and myth. Drawing on a broad range of thinkers and writers, from C.S. Lewis to Sylvia Plath, Hegel to Mary Shelley’s Frankenstein, Rapp learns what wisdom there is to be gained from parenting a terminally ill child. In luminous, exquisitely moving prose she re-examines our most fundamental assumptions about what it means to be a good parent, to be a success, and to live a meaningful life.
Ronan was diagnosed with Tay-Sachs disease at the age of nine-months. Tay-Sachs is a rare and always fatal degenerative disorder, and precious little Ronan wasn’t expected to live beyond the age of three, and would be permanently stalled, developmentally at the age of six-months.
Emily and Rick Rapp had taken their little bundle of joy to see a pediatric ophthalmologist on January 10, 2011 at the urging of their family pediatrician. They drove from their home in Santa Fe to Albuquerque. Ronan had been missing important milestones for a baby of his age and this worried Emily a great deal. The doctor thought Ronan had great “fixation” but was more interested at looking at his “retinas.” Upon looking, the doctor immediately said: “Oh, boy.” Emily’s heart dropped and she asked: “What is it?” She knew by the look on his face that it wasn’t going to be good news. The doctor replied: “He has cherry-red spots on the backs of his retinas…I’ve only seen this one other time in fifteen years of practice. It’s Tay-Sachs, I’m so sorry.” Rick was confused and had no idea what the doctor was talking about but Emily did. Rick wanted to know how they could “fix it”, but Emily stuttered out: “They die.” In that one moment, Emily and Rick’s entire life was about to drastically change and they faced a sad road ahead of them – their child had just been handed a death sentence before his life had even begun.
As the disease progresses it takes a lot to care for a child with Tay-Sachs: head supports, bath chairs, seizure medications, suction machines and other medical equipment. Emily questioned how you parent a child without a future, knowing that you are going to lose your child little by little. Could she even call the role she now found herself in as “parenting?”
One quote from the book hit me especially hard in regard to terminally ill children that said:
“For parents of terminally children, parenting strategies incorporate the grim reality that we will not be launching our children into a bright and promising future, but into early graves. The goals for OUR children are simple and terrible and absolutely grounded in the everyday: dignity and minimal discomfort.”
After speaking with other mothers, Emily was made well aware of the horror of what was yet to come for her and Rick. The other Moms had been blatantly honest with her about what to expect. In their case now, their parenting goal wasn’t to celebrate the awesome milestones that Ronan wouldn’t meet but instead to “do your best to keep your baby alive.” They were about to face health issues such as: paralysis, blindness, deafness, spasticity, seizures and death. And one thing Emily learned is that parents of terminally ill children are rarely asked for parenting advice. I ponder to myself why that would be so? Just because your child happens to by dying doesn’t mean that you don’t have great parenting ideas to share. I wonder if people do this out of fear?
Emily and Rick often acknowledge that while holding a sick baby, especially when that baby is yours, you accept that this bundle of joy is going to die. Emily compared it to attempting to escape from jail everyday even though you know your efforts will be for naught. However, regardless of Ronan’s impending fate, Rick and Emily marched forward as a normal family as much as possible going on road trips, to parties, coffee shops and restaurants. Ronan was their: “companion, our child, our beloved.”
Emily and Rick decided part of their job as Ronan’s parents was to: “not be responsible for managing other people’s rude reactions or misconceptions.” They were unable to mitigate other people’s fears, but they could certainly love Ronan. THAT was their only job. Babies with disorders like Tay-Sachs don’t care about perception, or in measuring up, or looking a certain way. Rick and Emily tried to remember this when people stared at Ronan.
Emily mentioned the morning after Ronan’s diagnosis as they both awoke and snuggled with Ronan between them in bed she said they both cried. First Rick, then her, then Rick, then her again. They didn’t know what to do, how to be with each other or how to be with themselves. They were completely bereft and didn’t know how to fill in all the blanks they could think of. I myself could not imagine being in their shoes, how do you empathize in this type of situation? Emily’s struggle to accept Ronan’s diagnosis was difficult. She said she sometimes “tried to literally kick out her grief; scratch my way out of it, rock away from it, scream it away, cry it out…”
The Still Point of the Turning World is a beautiful story that is a true testament to Rick and Emily’s son. It stirred up so many emotions in me and I longed to befriend the couple. Not to be nosey or seek information, but just to be an extra ‘someone’ for them to count on who didn’t judge, prod, or ask questions. Just to “be” in silence or conversation, whatever they needed at any given time. I will admit that I had a few sniffling moments while reading this gorgeously, bravely, written memoir. This definitely gets a huge thumbs-up from me!