6.25.2016

a glimpse of my son

He can’t always walk well by himself; he's never out of earshot and if he's not in our hands, he's within our reach. His balance is poor, his vision, perhaps, is worse, his bones are thin and he’s prone to careen. He can’t be left on his own for a spell or he’s liable to fall and get hurt, and his fits, though mostly foreseen, can strike any time at all. He can’t push a toy truck or stack wooden blocks, can’t scribble or scrawl or catch a ball or kick one with his feet. He can’t ride a bike or mount a trike, can’t eat with a spoon or drink independently from an open cup. He tosses his sippy on the floor like a tot, and drops like a stone when he’s had enough. He can’t put on clothes or soap up in the bath, can’t brush his teeth, tie his shoes or button his shirt. He can't play games or sports or whistle a tune, he can't run down the street, hop or jump rope. He can’t speak a word or point to what hurts, can't wave goodbye or greet new folks. He can’t wade in a pond, swim in a pool or climb in the trees, can’t read a book or sit and just watch t.v. He can’t open most doors or climb stairs alone, make any friends, or ride safe in a boat. He can't peel fruit, open bags, pour milk, pick flowers, tell time, write his name, dance a jig, play a flute. He can’t pull up his covers at night, can’t tell us his dreams, can’t wish on a star or play make believe. He lives in the moment, and for all I know, he doesn't know hope. And though he hasn't a clue about most of this world, I just wish he felt better more of the time, wish we could know some of his thoughts.

Photo by Michael Kolster

6.24.2016

gross

i was about to publish a post i've been working on all week. i just now deleted it by accident. such is life. suffice to say i was writing about the ridiculous amount of attention calvin requires and how i can't keep him out of earshot or beyond arm's reach. i guess i have to start over.

on a related note, while taking calvin to the grocer today, he was squealing and squirming and drooling a bit, and walking his wonky walk. a little girl of about seven strolled by and gawked at him. she raised her arms and flicked her fingers as if she were holding something rotten and said, "ew, gross." she was talking about calvin. i turned to her and said loudly, "ew, you're gross," and went on my merry way.

she reminded me of donald trump, in her mocking of my sweet, defenseless, disabled boy, spewing the shit that was on her mind, not caring if she offended, thinking she was without fault.

talk about gross.

6.15.2016

the apathy of god

When I see my son suffer a seizure, like yesterday morning, I am reminded of the apathy of god, at least of the anthropomorphized One who in some people's minds peers down from the ether. The One who decides that kids like mine ought to be born missing part of their brain and endure miseries of all kinds. The One whom some like to say doles out hardships just shy of what might be too much for us to bear. The One who, it would seem, brushes aside infinite pleas for an end to pain, disease, famine, drought and war.

Before Calvin’s seizure, which was more violent than most, I laid awake lamenting the death and misery caused by the Orlando nightclub shooter. How many of those loving, happy men and women, and their families receiving panicked texts, prayed to be delivered from that hell? Despite their appeals, the bullets rained down on them like acid, the hot metal rifling into innocent flesh and bone.

God was nowhere on the scene.

Some pious people have told me that Calvin is the way he is—suffering—to serve some higher purpose, to satisfy some grand design. Those same folks might like to claim that the carnage in Orlando was punishment for homosexuality which, they might argue, is forbidden in their Good Books. But God did not author the Scriptures. They were all penned by man. And in each one—the Bible, the Quran, the Tora—certain things are condemned such as eating shellfish, rodents, fat and certain birds, blending fibers, wearing torn clothes, planting more than one kind of seed in a field—and edicts for when to worship, when to fast, how to wear your hair and for homemaking anointing oils. There are laws that indict and subjugate women, tenets to punish various “sins” and statutes on who to stone. These were mans’ creations, mans’ fascinations, mans’ depravity. This was mans’ way to best exert control.

If there is a god—some divine, interconnected force of living and inanimate things—it does not judge or punish. It does not hold in contempt, root for sides, cause anguish and pain, or help to win a war. If this force exists, it must be like water, wind or sun, touching us all, quenching our thirsts, stroking our skin, quickening our hearts. Perhaps sometimes it rises in tides and floods and wicked storms, lays waste the parching plains, quakes the earth which swallows souls. But never does the cosmos rule with some unjust slant or cause, nor with scorn, nor with resolve.

No. The universe is very simply divine, perhaps on its own, and the world sublimely spins, but by no deft hand, nor man, nor bias god who, upon waking, decides that it is so.

Photo by Michael Kolster

6.13.2016

compliments

Sometimes people do things that restore one's faith in a loving, accepting world at a time when others seem bent on hatred, selfishness, fear and division.

Calvin has had the good fortune of being mainstreamed in Mr. Steven Shea's fifth grade class. On several occasions last year, Mr. Shea called me at home to invite Calvin to join the class on summer field trips. We were able to go on one of them, a hike to Morse Mountain. For most of the way, I pushed Calvin in the stroller while the other children walked. That morning, I witnessed the openness, kindness and compassion that Steven had instilled in his students. It meant so much to me that he had included Calvin, even though he wasn't sure the trips would be easy or possible for us to negotiate.

Last Friday, Calvin came home with several strips of paper and a note from his aide explaining that Mr. Shea's students had written each other compliments. Several of the children had chosen to write some for Calvin:

To Calvin, You are a rock star. I loved coming into Ms. Andersons room to volenteer and see you and Sammy and Alden. Your mom was right you have no mean bone in your body. From Jack

Kalven, you are really nice. I"m glad to be in your class.

Calvin: Even though you don't come to class much we think of you a lot. —Morgan

to: Calvin you are extremlly nice to everyone and its amazing what you have accomplished.

Calvin, your very nice and always wave to me in the halls. Luke

Calvin—you seem really nice and I"m glad you dropped in our class to meet you.—Zoe

Calvin you are always happy and smiling. —Elly

Mr. Shea has recently resigned his post. The school is no doubt losing a wonderful teacher who taught his students the valuable lessons of empathy, acceptance and love, all of which are paramount considering the state of things in this crazy nation of ours.

Thank you, Steven. Best of luck in all you endeavor. Please give my best to your group of remarkable kids.

Calvin with Mr. Shea's other fifth graders on top of Morse Mountain, summer 2015

6.07.2016

drowning

dumbstruck by prose on drowning. my face awash with tears—my son’s and mine. rain batters a red metal roof. an unbelievable green turns neon amid an electric sky. electric sky. perhaps sparking my son’s fits. five of them. one grand mal. like clockwork the morning of day nine. the clock stops. the fits march on. i drown my son with potions of various kinds. cannabidiol. benzodiazepine. extra keppra. tetrahydrocannabinolic acid. more benzodiazepine.

he clasps his hands around my neck. beats his head into mine and cries. mama will make it better, i vow. my head pressed into his i glimpse my fist. in it a syringe awaiting to touch his lips. i wonder what is hurting him. i think of mothers and fathers who have taken away the pain. i read of others who bring it on. who've drowned their most beloved ones.

the sky glows. the rain slows. the catbird has been calling since two a.m. i shouldn’t, but i know.

precious boy in so much pain. migraine? sweet boy on the mend will feel this way again. i can take none of it away. i kiss and rub his neck. palm on his chest. no beating. what to do? wait. it's merely calm. not thumping too, too strong.

in my youth i used to catch frogs. see their beady eyes floating in the mire. feel their hearts through cellophane skin. yesterday I waded ankle deep into a pond. looked inside. spied no frogs. heard them yawn and croak and call. thought of the tot who slipped on a rock a lifetime ago. the crown of her head barely cleared the drink. her blond curls drifting like milfoil whorls. she didn't move. i stood and froze.

my boy emerges from the deep. still weeping. times like these he takes me down. the both of us drown by degrees. sorrow is mine. his is hurt. we wade, we slip, we work like hell to breathe in waters that may never recede.

Photo by Michael Kolster

6.03.2016

in the same boat

A brown-haired boy in the back of the room raised his hand and said to me, “It must be hard.”

I asked him if he meant hard for me or for Calvin. He answered, “Both.”

“Yes, it is hard,” I replied, trying not to lose my composure.

I mentioned my sleep deprivation and the difficulties we face because Calvin can’t speak. I explained that it was hard seeing my son suffer so many ills and have seizures and have to deal with so many drug side effects. Then I thanked the boy for his thoughtful sentiments.

The group of students was the third to attend my presentation at the junior high school down the road from our home. I’d been invited back a second year to talk about Calvin and epilepsy and disability on their annual Civil Rights day. This last of three classes had just come from a presentation about the Holocaust given by an eighty-three year old survivor.

For forty minutes each, I projected photos of Calvin on good days and on bad ones, on the day he was born, nestled in his plexiglass isolette and hooked up to C-PAP tubes (continuous positive airway pressure). I flashed shots of my son swinging and smiling and signing for “hug” amidst too many photos of various drugs.

They asked me things like:

What is Calvin’s favorite food? How does he communicate? Is he coming to school here next year? How do you know when he is going to have a seizure? Does Calvin have friends? What does he like to do? Is Calvin your only child? How did you choose his name?


Surprisingly, none of them asked me questions akin to the ones gradeschoolers have, such as:

Do seizures hurt? Can you die from a seizure? Can you have seizures before you are born? Will Calvin ever outgrow his seizures? Will Calvin ever be able to stop taking medicine? What happens if a seizure doesn't stop?

At the end of my presentation, two students, a sixth-grade boy and girl, told me quietly that they have epilepsy. The boy, in appreciation of my talk, gave me a fist bump and a thumbs up.

At one point, someone asked if people make fun of Calvin. I told them that I didn’t think Calvin was teased at school, but that at the grocery store I often see strangers gawk at Calvin and, in the past, I've had to endure scornful comments about my clamorous boy.

At various times during my presentations I spoke of the difference between tolerating people who are seen as different—like my boy—and embracing them. I went on to emphasize how we are all born as equals, how we all come into this world loving, and that only later do we learn to hate and disparage. I encouraged the students to be kind to others who are different from themselves, who might have different hair, different colored skin, an unusual accent, come from another country, live in a different kind of house, wear different clothes, practice different religions or have a disability like Calvin. Regrettably, I failed to include LGBT people and people with different gender identities. Then, I read a favorite quote by Martin Luther King, Jr.:

We may have all come on different ships, but we're in the same boat now.
Read more at: http://www.brainyquote.com/quotes/quotes/m/martinluth132359.html
We may have all come on different ships, but we're in the same boat now.

I went on to talk about advocacy. I urged them to not be afraid to challenge authority, but to understand, for instance, that they or their parents might know as much or more about themselves as their doctors do. I urged them to stand up for themselves and for others, to confront bullies on underdogs’ behalves.

It was at that point when one of the teachers recalled the earlier presentation by the Holocaust survivor. She explained to the kids that if it had not been for all of the wonderful people who had come to his aid before, during and after his torment in the concentration camps, that he might not have survived to tell his story.

I took her comment further, explaining that if enough people had rejected the rumors and lies about their good Jewish neighbors and citizens, had they not feared or had contempt for them, if enough folks had, instead, stood up for them early on, then perhaps there would have been no Holocaust.

Delving deeper, I appealed to the children, telling them that I hoped they would never judge someone simply because they were different. I hoped they would step out of their comfort zone and get to know and embrace people who are different from themselves and that, as a result, they might realize they share more in common than at first glance, and that they’d learn new things and grow and live a much richer life as a result.

Lastly, I told them that if someone complains of being bullied or mistreated, they should listen and believe. I said I hoped that if they heard someone—anyone—talking trash about someone because of their race or religion or disability, for instance, that they should speak up to call out the wrong, and go to that person's aid.

After three hours at the junior high school, I left thinking about the importance of our civil rights and the debates I’d had recently about the Black Lives Matter crusade. I became disheartened recalling the cascade of intolerant and misinformed comments about the BLM movement, which I believe is absolutely righteous and most vital to the health of our nation and our citizenry; if only more white people would get past their self interests, embrace their Black American brothers' and sisters' cause, and jump on board.

I began thinking of the Republican presidential nominee again, and his penchant for for hateful, divisive, fearmongering, accusatory, inflammatory rhetoric. I wondered if Trump has any close Muslim, Mexican or African American friends. I have a hard time believing so.

And then I smiled at the thought of the students and their malleable brains, and the compassion on their faces when I spoke of Calvin and the hardship he endures. I hoped I'd made a difference in how they see unfamiliar others who love and share their remarkable world, and who travel on the very same seas.

Banksy

5.30.2016

vigil strange I kept on the field one night

Every Memorial Day, I post this passage by Walt Whitman for its beauty and poignancy. While my mind is focused on veterans of war who have died on the battlefields, the images this writing provokes give me pause to remember and honor all of the children my friends and loved ones have lost. This goes out to their parents, as well as those lost in war:


Vigil strange I kept on the field one night;
When you my son and my comrade dropt at my side that day,
One look I but gave which your dear eyes return'd with a look I shall never forget,
One touch of your hand to mine O boy, reach'd up as you lay on the ground,
Then onward I sped in the battle, the even-contested battle,
Till late in the night reliev'd to the place at last again I made my way,
Found you in death so cold dear comrade, found your body son of responding kisses,
(never again on earth responding,)
Bared your face in the starlight, curious the scene, cool blew the moderate night-wind,
Long there and then in vigil I stood, dimly around me the battle-field spreading,
Vigil wondrous and vigil sweet there in the fragrant silent night,
But not a tear fell, not even a long-drawn sigh, long, long I gazed,
Then on the earth partially reclining sat by your side leaning my chin in my hands,
Passing sweet hours, immortal and mystic hours with you dearest comrade—not a tear,
not a word,
Vigil of silence, love and death, vigil for you my son and my soldier,
As onward silently stars aloft, eastward new ones upward stole,
Vigil final for you brave boy, (I could not save you, swift was your death,
I faithfully loved you and cared for you living, I think we shall surely meet again,)
Till at latest lingering of the night, indeed just as the dawn appear'd,
My comrade I wrapt in his blanket, envelop'd well his form,
Folded the blanket well, tucking it carefully over head and carefully under feet,
And there and then and bathed by the rising sun, my son in his grave, in his rude-dug
grave I deposited,
Ending my vigil strange with that, vigil of night and battle-field dim,
Vigil for boy of responding kisses, (never again on earth responding,)
Vigil for comrade swiftly slain, vigil I never forget, how as day brighten'd,
I rose from the chill ground and folded my soldier well in his blanket,
And buried him where he fell. 

—Walt Whitman

Confederate dead, Chancellorsville