2.29.2016

imagine the unimaginable

I’d wager not a day goes by that I don’t worry about my son Calvin’s demise. Just yesterday, after giving him his cannabis oil, he had a coughing fit, at times not breathing for long spells. While he was choking, my mind raced down a time tunnel to images of calling the ambulance, speeding to the ER, and kissing my boy goodbye. It might sound mellow dramatic to some of you, but when you’ve got a kid with a brain malformation, low muscle tone, a tendency to choke, significant developmental delay and a chronic condition such as intractable epilepsy, it’s not a stretch to begin imagining the unimaginable.

At times I fear he’ll trip or fall and crack his head or perhaps he’ll gag on a goose down feather in the middle of the night, or die in his sleep from SUDEP, or suffer organ failure from years of taking antiepileptic medications, or succumb to a seizure that doesn’t stop.

The thought of losing my boy is scary and, though not entirely imaginable, if I let my mind drift, I can get there part way. That feeling of dread and despair which spates of seizures often conjure might be why my heart sinks so deep when I hear of other mothers losing their kids. It’s the miserable feeling I get when I hear of children dying from prolonged seizures while waiting for cannabis to become legal in their state. It's the feeling I get when I hear of innocents being shot by cops because of the color of their skin. It's the feeling I get when I hear of kids who shoot themselves because they were bullied, or children murdered by gunmen storming into their schools, or being accidentally shot by a sibling or a friend. It's the feeling I get when I hear of children in refugee camps who die a miserable death from disease or starvation, or drown on voyages to nations where they hope they'll be safe and free.

It's not just the children's pain that I find difficult to swallow, but their parents' anguish over the void where there once was a dear child. Life without Calvin, who I so dearly love, would be immeasurably painful and it's impossible to know if I would survive. It's a universal truth, not one reserved for white America; mothers and fathers the world over know this dread, and worse.

In my mind, I embrace these children whose lives end so needlessly because of the world's hate and neglect, a world in which wars are fought over drugs and gods and oil, where human suffering is questioned, where walls are built and lives are corraled within fences, bars and wires. A world of too much greed and too many lies, too many loaded guns nearby, where refugees are suspect, and poverty and starvation are ignored.

Make America great again! The flaxen-haired candidate booms, as if summoning a time when Blacks were mobbed and lynched, women couldn't vote, not everyone could marry who they love, when, before labor unions, the hardworking poor were legally exploited and child labor was the norm, when innocent Japanese American citizens were interned, and when women's bodies were worse fodder over which conservative male politicians passed perilous laws.

Make America hate again!

I swear that's the message Trump has been broadcasting under another guise. What I think he and his fans really mean is, make America white again. So many folks revel in his damning and insufferable messages it makes me ill. I grieve for the mothers of the three young Sudanese immigrants killed assassination style in Indiana last Friday. All were black. Two were Muslim. I've no doubt their sons' demise was incited by the kind of anti-Muslim rhetoric Trump peddles. I read about a recent poll which showed that seventy-four percent of Republican voters in South Carolina support a ban on Muslims, with twenty percent of Trump voters also saying they wish America had never freed African American slaves. Even crazier, I've no doubt most of those folks think of themselves as Christian.

I like Hillary's ambition to make our nation whole, emphasizing that we need more love and kindness in America. Yes we do.

But the hate and intolerance of the kind that Mr. Trump sells, and the fires fueled with loathsome tones, will only serve to ensure the demise of more innocent children, from things like guns and bombs and lack of medical care or food. Imagine, if you dare, their little faces blotted from this world, their cold bodies withered and ashen, limp and emaciated or riddled with bullet holes, their pristine souls gone up in smoke.

Imagine the unimaginable. Envision things far worse than they already are, and on our shores. That world you see with your eyes closed is what life could be like if someone as reckless and shameful as Donald Trump is in control.

Hulton Archive/Getty

3 comments:

  1. I've been thinking about you and your blog lately. I'd have emailed if I had your address. I commented a while back about wanting to smile at people like you and your son and husband. I spoke as an outsider. I now wonder if I'll get questions like that. My identical twins were born almost a month ago at 24 weeks. Gabe, the bigger twin, died the next day having lived for 23 hours and 23 minutes. Teddy, our remaining twin in in the NICU. Like you I now picture the ways he might die as he struggles to grow. And I wonder what challenges he'll face in the future. So I think of you, and our brief prior interaction. Thank you for... for shining a light on a good, hard life. -Abigail

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    1. please send me your email in this thread and i will not publish the comment but i will have your email address and can give you mine. i am very sorry for your loss. put me in your pocket. xoxoxo and all my love.

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  2. I totally agree that the intolerance is out of hand. Having had seizures since I was young, the way people look down on you is crazy. Sometimes I wish the world could be more understanding... Then I see national leaders calling each other names and realize maturity is a choice.

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