Shannon Lell's Reviews > Devotion: A Memoir

Devotion by Dani Shapiro
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Jul 19, 12

Read from May 29 to June 19, 2012

Dani Shapiro grew up as an only child in an orthodox Jewish home in New Jersey. Her reserved, devout father died in a tragic car accident when she was 23 leaving behind more questions than there would ever be answers. Her relationship with her mother was complicated and tragic right up until her death of brain cancer when Shapiro was in her early 40's. Early on, Dani splintered off from her Jewish upbringing, finding refuge, sanctuary and community in various places including her yoga mat and church basements attending AA meetings (although not an alcoholic).

She became a New York Times best-selling author, a wife, and like so many of us, got busy numbing herself stacking up accomplishments and material accoutrement.

Then she had a son, and also like so many of us, was changed forever. When her son, Jacob, was only months old, he was diagnosed with an extremely rare and likely debilitating condition called Infantile Spasms. Strangely, it is a rare condition of which I am partially familiar.

When Brooke was eight months old she developed a strange tick on her right side. It looked like she was bringing her right shoulder and her right ear together in a sudden, involuntary movement. Within hours of showing her pediatrician a video, I was at the hospital distracting my daughter with a dusty, leftover stash of rickety toys while they pasted a rainbow of electrodes to her baby-fine hair. Between the two appointments, I frantically Googled "Infant Seizures." That is when I became familiar Infantile Spasms, which was the most tragic of all possible outcomes.

There is no definitive cure for IS although experimental treatments do exist. If IS is not treated immediately and effectively, it can erase your child from their own mind leaving irreversible brain-damaged. The probability of surviving Infantile Spasms without severe neurological impairment is 15%.

Our Pediatric Neurologist said he would call us as soon as he got the results, "no matter what time." In our case, it was 7pm on a Friday night. To say I was afraid, feels wholly inadequate. I don't think I took in, or let out a full breath that day. I busied myself. I chewed my lips and watched her and the clock like only a mother sensing trouble can.

We got the call and it was good, not IS.

But Shapiro and her husband received the opposite diagnosis. Through more than a year of intense monitoring and precise administration of an experimental medication, Jacob survived IS with a few developmental delays that he would eventually overcome.

Of all the tragedy and uncertainty Shapiro endured up until that point, it was this experience that felt like the locus of the book-- the principal reason for the deliberate search for what she believes. Against such infinitesimal odds, why had this happened? Furthermore, why did Jacob survive? What would she tell her son when he was older? How could she tell him anything if she didn't know herself?

Not one of us is immune these switchback moments of life. The moment when the horizon comes into view, but suddenly you are forced to take the path leading in the opposite direction. This disorientation leaves us looking behind us, yet forced to keep moving forward.

Ultimately, it is a reality we all face, the recognition that life is fragile, potentially tragic, and definitely out of our control. If we're lucky, it is faith that shores us up against the storms. Belief becomes our safety net; religion our life-line, and for many, finding a community of like-minded people to help weather the worst of it. When you are a renounced orthodox Jew, a itinerate yogi and a non-alcoholic member of AA, where do go? What do you do? How do you define your beliefs?

Shapiro finds the closest thing to answers in the small spaces between all these things--in the moments of awareness brought on by daily rituals, mindfulness and setting intentions.

She is Jewish, but reads Buddha's teachings to her son. She finds refuge in the practice of daily meditation, but also at synagogue on Friday evenings. She finds solace on her yoga mat and also in the mezuzah hanging to the right of her front door. She finds community in reading the Torah with a Rabbi, or in watching the leaves turn colors outside her window.

In the end, it is always a practice, a never-ending journey in finding peace in a world full of split second sorrows-- creating meaning in a fraction of a second of breath and the seemingly inconsequential gestures of ritual and repetition, because they are reminders of the only thing that is... our intricate connection to each other in this solitary moment in time.

Life will always be switching back on us, each corner producing a new set of questions and rarely will there one answer for them all, more often than not, there are no answers. It is on this precipice of uncertainty and fear that we all must learn to find solace, refuge and community without closing our eyes to the view.

Because even when you're afraid, especially when you're afraid, if you keep your eyes open, it is still beautiful sight to behold.
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