.faith's foundation

by Jonathan Lane, who is a father, looking forward to having a new role of this sort with the future arrival of grandchildren. He's wrapping up a career as a research engineer at Berkeley Lab (LBNL) in Berkeley, CA, and will begin his next career with the title Chief Enthusiast for Playgrounds and Childhood Adventure

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For a year or more she'd known that something wasn't right, an intuition that arrived before all else. Then one night our son walked the hallway, from the bedroom he shared with this twin, to find us; her intuition and his six year old life had come into convergence. Mid-sentence - graceful in his articulation - he entered a state of suspended animation. The way she said his name, as a calling out to a child at play, out of sight, in the forest, I knew something was very wrong. It was the first seizure of hundreds he would have during the year ahead. A casually unconcerned - but incorrect - pediatrician, a pediatric neurologist with a misdiagnosis and a stew of counterproductive medications, MRI's with concerning findings, consultations with brain surgeons, attending PE class with him twice a week, running along side to catch him if his mind shut down while his body continued to run.

 

And then a chance meeting, both of us on vacation, with a gifted neurologist who set us off on a new course. On the EEG trace - I carried it with me at all times, hoping for such a moment - she saw that the right hemisphere was only mimicking the left - a mirror focus; the seizures were actually starting there. Cancel the brain surgery. A new medication, not approved for use by children, would likely help. It also might cause rejection of his own skin - a death sentence - but that was likely avoidable if the meds were introduced very slowly.

 

My grandmother lived long enough to find herself with four great grandchildren. But this year, her 95th, was her last. After the memorial service, immersed in thoughts of four generations, and what was in store for my son, I sat down to write. Joined by guidance - a settling, an understanding, an acceptance took form: "At the thought of a child falling ill, a loved one's suffering or loss, you say 'God forbid!'. But mine is not the power to forbid, but only to create. Together with your capacity for love comes these places of pain, and sorrow, and grief. There was no way to allow for one without the others."

 

Here was, finally, a faith where I found resonance. Life, the rarest of opportunities, as the deliverance, the divine. From that moment to as far as we can reach, it's all ours, to share, to seek, to struggle - together. All grace, beauty, love, sorrow, loneliness, grief - connection to each other is what we have; it is amazing, it is powerful, it is enough, it is us.

#somethingreal