We met at Mozart’s on the muggy, breezy morning of Nov. 17, and I wanted him to tell me — on the record — his story about loss, grief and acceptance because I thought it might assuage the fury a few of my friends were feeling about the election.
But as our conversation leaned in that direction, I realized his story is too profound and too painful to serve as an allegory for anything as frivolous as a presidential election, or even the implosion of a favorite football team.
His identity shall remain as anonymous as I can keep it. If you know him, you may perhaps know what he and his family are going through, and you may wonder, “How do you do it?”
How do you sleep? And if you sleep, what do you dream? And when you wake, how do you get to your feet and out the door and through the day? How do you know what you know without wallowing in pity or bursting into flames?
You see, my friend’s 2-year-old grand-daughter is dying. I’m calling her Alex. At the time of our meeting at Mozart’s, Alex was in ICU, where she’d been rushed from hospice. I’m writing this three days later. She may still be in ICU. She may have returned to hospice. She may have passed. I don’t know. I don’t want to know. Not now, anyway.
Alex was born with microcephaly. It was genetic, not Zika.
“Early on, we noticed that her head was small,” my friend told me. “My daughter and her husband kept taking her in for check-ups, and a few months into it, it was diagnosed.”
There’s no treatment, no cure. In some cases, doctors will remove the skull cap to allow the brain space to develop, but there was no reason to do that with Alex.
“The brain wasn't there to grow,” my friend says.
So it was just a question of how far and how long. Alex developed slightly and briefly, then declined into hypotonia — totally limp except when she suffers seizures, and she does so constantly.
Her condition is so rare, she’s not even a candidate for research. Doctors are unlikely to see another child like her.
“They can’t fix it,” my friend says. “We ask the doctors,, and they say, ‘We don’t know.’ So what we do is deal with Alex.”
They make certain she’s comfortable, and they enjoy the little girl and try not to think of what might have been. When the moment arrives, they want her to go quickly and painlessly.
“One of the things we’ve enjoyed about Alex is that she’s been able to vocalize,” my friend says. “She has no speech, but she will coo or laugh, and sometimes you can feel some joy in it.”
So, nothing will be done to disrupt that. Alex has been through so much already. Tubes and pills and shots. Extreme isolation and miserable high-this, low-that diets, and none of it worked.
In the meantime, my friend’s daughter and her husband have battled insurance bureaucrats and byzantine health care regulations and on and on and on. It’s been grueling, but my friend wants me to know that they’re at peace with the situation. He quotes Gertrude Stein: “There ain’t no answer. There ain’t gonna be no answer. There never has been an answer. That’s the answer.”
He says they don’t waste energy asking questions that’ll never be answered, and they don't’ pray for or expect miracles. It is what it is.
“Let it be,” my friend says. “And that’s where we are. Let it be.”
He half-sings McCartney’s verse. “When I find myself in times of trouble, Mother Mary comes to me, speaking words of wisdom. Let it be. That has to be the mantra. You can say, ‘Thy kingdom come. Thy will be done.’ That’s where we are. What is, is. Look at it. Embrace it. Don’t turn away.”
That’s tough for people to do, I respond.
“Yes,” he agrees. “But it’s essential. It is for us, anyway. I’m not going to make judgments about how other people deal with it. People find different ways to cope. Denial. Be angry. Be the victim. There are all kinds of ways to approach it.”
This journey is not yet over, and he concedes he’s not certain how it will play out, but he says he and his family feel good about where they are. He says he thinks they’re lucky.
“Alex is a teacher,” he says. “These are lessons we don’t want to learn. The Greek tragedian, Aeschylus, says, ‘He who learns must suffer. And even in our sleep pain that cannot forget falls drop by drop upon the heart, and in our own despair, against our will, comes wisdom to us by the awful grace of God.”
He transposes, then repeats that line: Wisdom comes. By the awful grace of God. Against our will.
“It’s true,” he says. “And it’s everywhere, all the time. We just don’t see it — at least, not until we’re forced to.”
And each of us will be. And in these inevitable spasms of loss and grief and pain, he says, what you must do is keep your hearts open.
“Don’t spin a cocoon to defend yourself because then, you lose all of that experience and you turn away from everything else,” he said. “Life is pain. Alex is teaching us that. But you don't turn away from it. You embrace it. You look at it, and you face it with a full heart.”