freedom to me

freedom to me is to dance with reckless abandon. freedom to me is a good night's sleep. it's a stroll by myself down the street. it's the time and space to think and read and write and dream.

freedom to me is to be understood. to get to know and embrace different people. freedom to me is a place to call my own, knowing it isn't really mine at all—the beach, a wooded trail, a back road, a nation.

freedom to me is a stint without my son having seizures. it's a walk down the block without him balking. it's a day when he's unencumbered by the miseries which tend to stalk him. it's a week without him moaning and shrieking.

freedom to me is sipping from a mug of coffee or glass of wine in the garden. it's listening to music as loud as i want. it's having a spouse who loves deeply my crazy notions, jokes and idiosyncrasies.

freedom to me is to offer a big table. it's the ability to give. freedom means everyone has healthcare, can afford to pay their bills, live in safe neighborhoods. freedom to me is a place where people can love who they love, worship how they please—or not worship at all—live under a roof, have plenty of food, clean water to drink, a good education, body autonomy, safe streets. freedom to me is easy access to voting. it's living in a system void of all religious dogma, and a world without its extremism, bloodshed and sanctimony (people don't need religion to be good and do the right thing.) freedom is the right to peacefully protest inequality, bigotry, oppression and autocracy. freedom to me means democracy.

freedom to me is a big sky stretching over an expanse of sea. a vista. a view to the horizon. clean air to breathe. the feel of wind in my hair, rain and mist on my cheeks. 

gift givers in a pandemic

In the months since the pandemic began, we've received all sorts of gifts from friends, neighbors, Michael's former students, childhood buddies and perhaps even strangers: a framed painting of Smellie, a pot of paperwhites, bags of homegrown tomatoes, green beans and white cucumbers, tiny raspberries and strawberries, garden bouquets, a photographer's self-published book, fancy beers, black trumpet mushrooms, kerchiefs and clothes for Calvin, dozens of oysters, fragrant eucalyptus fronds which remind me of San Francisco, jars of peanut butter and honey, bottles of rye, bourbon, wine and bubbly, homemade liver pate, artisanal loaves of bread and cheese, orchard apples, apple pies, dog treats, carrot cake, caramel chocolates, coffee, homemade granola, soup and spice cake. Have I forgotten anything?

No doubt these lovely gifts and their givers have lifted my spirits in the midst of hard times taking care of a teen who can do absolutely nothing by, or for, himself. Sometimes, I get a glimpse of the gift givers, but can't always catch them before they disappear. Other times, I visit with them for awhile from the porch as they stand at least eight feet away, often wearing a mask. No doubt for years, the love, affection and caring from friends and neighbors has sustained us. We are part of an amazing community. I've heard it said that it takes a village to raise a child. The fact that we are still here and in relatively good condition, despite the clusterfuck (sorry Gma) that is epilepsy, is a testament to that adage.

In the midst of this rampant pandemic, I feel doubly grateful to live in a state that is doing a good job of controlling Covid-19 levels. In my town and in nearby ones, I see most folks wearing masks in public. The first-year college students at Bowdoin are probably setting the best example, wearing their masks outdoors in groups or putting one on when they pass me on the sidewalk, fields or trails in the woods.

Nearly ten months into this pandemic, cases of coronavirus are rising in almost every state of the nation. Yet weekly, I still hear interviews with people who balk at the notion of wearing masks in public, despite the overwhelming epidemiological evidence that masks are one of the best methods to stop the spread of the virus. Don't they understand that by not wearing a mask—whether they feel healthy or safe or somehow immune—they may be endangering the well-being and lives of others?

Like gift givers, we wear our masks for others more so than for our own protection. That's how it works. Regrettably, mask skeptics cling to the selfish narrative that we all have to take personal responsibility for staying safe from the virus. But, as Americans, isn't our responsibility to be accountable for each other? Isn't that what community means—having each other's backs, watching out and taking care of one another? That was what New Yorkers did when the Twin Towers were attacked on 9/11. It's what people did in the wake of hurricane Katrina. It's what demonstrators of every color, class and creed are doing to protest police violence against Black people. It's what folks are doing during the Western wildfires. We are at our best when we help each other. Why should a threatening, runaway and lethal pandemic that has killed over 220,000 Americans be any different?

Some in this nation still stubbornly subscribe to the myth of rugged individualism and its regrettable mantras such as Every man for himself and Don't tread on me. They insist that the simple act of wearing a mask infringes on their personal freedoms or think that it's somehow a sign of weakness. Whatever happened to the notion of personal sacrifice for the sake of others? How did it come to pass that some well-off Americans value their 401Ks more than their fellow Americans' hunger, homelessness, poverty, illness, injustice, everyday struggle? How did a chunk of our nation's people become so hardened, thoughtless and reckless at the expense of their neighbors?

I like to imagine an America in which we are all gift givers: where we unconditionally help the vulnerable and those less fortunate than ourselves; where we help those who find themselves in a bind, unemployed, on the streets, needing a second chance; where we wear masks so that we don't unwittingly infect other people. Just imagine an America where compassion, support and understanding for others reigns over selfishness and petty indignation. We should help each other get through these hard times.

weekend update

At noon, it's fourteen degrees out. Last night it got down to two. We're sick as dogs inside this lonely house. Sidewalks are icy. While walking Smellie yesterday the windchill factor was well below zero. I feared my jeans would freeze to my kneecaps. The dog has become a little bit gimpy and we don't know exactly where in her leg it hurts, or why. We think it's arthritis as the result of Lyme. Can't get outside today to walk her since I don't have a nurse to watch Calvin.

Michael is on his way home from being gone for nearly twelve days. I hope he brings Hawaii's sun and warmth along. The other night a friend asked if I resented my husband's travel. I told her only sometimes. It's his work, and it makes him happy and he misses home and wishes I were with him, with or without our boy. Alas, because of Calvin, it can't be so.

While Michael has been gone, his parents have been regularly checking in on me by phone. Several friends have walked Smellie when I can't, braving the wind and cold. A dear friend and his daughter shoveled my snowy driveway. One lovely dropped by some homemade spaghetti and cookies. Another brought me tulips, English muffin bread, tea, honey, Meyer lemons and Honeybell oranges. Still another showed up with a warm loaf of lemon poppyseed cake. I'm so lucky to be taken care of by friends in this small town.

Last night Calvin had a grand mal seizure. Strangely, I didn't see it coming. It was early enough in the night that I feared he'd have a second one like he did the past two times. So, I gave him a little extra homemade THCA oil and spooned with him. He didn't have another one.

I hope to get some sleep tonight. I feel wrecked, with achy eyes and a voice which is nearly gone. Thankfully, Calvin is in a mellow mood, thus has been pretty easy to take care of. Of late, I've seen his behavior trending toward more calm. From his room next door I hear him yawn. Time to try a nap of my own while Smellie is out walking with friends. Soon she'll be on her way home.

From the field behind our home.

north star

Last night, while much of the world lit candles on their menorahs, celebrated the birth of the baby Jesus and prepared for the coming of Kwanzaa, I watched my son seize. He had fallen asleep about an hour prior, and just as Michael and I were readying for bed, I heard Calvin screech. When I got to him, he was reclined with all fours in the air, crooked, stiff, and trembling. There on his back, he couldn't breath. Quickly as I could, I unlatched his bed's safety netting and panel then, reaching in, yanked his right arm to turn him onto his side. Soon, oxygen began passing his lips again, which had turned a ghostly shade of grey-blue, his airway having been blocked by flesh or fluid.

Holding him close to me as he drifted back to sleep, I thought about the tens—perhaps hundreds—of thousands of others whose sons and daughters were also seizing, disrupting special gatherings and gift-giving, candle-lighting and festivities. I thought about refugees who had traveled miles, many to be separated from their parents, to be kept in cold cages, slumped on hard floors without their medications. I lamented the cruel way they've been forsaken.

Earlier, Michael and I had been moved to tears upon reading a message that one of Calvin's nurses, Rita, wrote to us in response to my recent post, hard conversations. Within her loving sentiments, she included this prescient quote:

"I want to know if you can get up, after the night of grief and despair, weary and bruised to the bone, and do what needs to be done to feed the children." —Oriah Mountain Dreamer

She went on to say:

I have the rare privilege of witnessing you and Michael do that day after exhausting day for years and years and years, perhaps for the rest of your lives.

You chose to share your beautiful, so severely limited son, a child who teaches us great lessons in compassion and loving more. In this gifting season, you all are one of the most profound gifts of my life.

Last night as I tucked him into bed, for the third or fourth time, he curled and cuddled into the covers, in his sweet peaceful way. As I kissed him goodnight, again, he gifted me with his sweet smile. He blesses me with his love. I am so grateful for Calvin.

I'm no believer in the folklore which teaches that Jesus is our savior and lord. But, because I have a child who inspires love, acceptance, compassion and empathy, I thought about Jesus, wishing others were so. And in pondering the stories of Christmas—the wise men, the refugees, the innkeepers—I realized Calvin is most like the North Star, bright and constant, shining on everyone no matter who they are.

Photographer unknown

empathy and betterment

Though the grass is green, this dry spell has the shrubs curled up and thirsty. In their withering, I see myself, stressed and brittle. This journey as the mother of a child like Calvin—a teen who is legally blind, incontinent, nonverbal, physically and cognitively impaired, beaten by seizures and the drugs meant to thwart them—is a hard one both physically and emotionally. I'm chronically sleep deprived, burdened with worry, at times gripped by fear, anxiety and the shadow of devastation and despair. I wish I could somehow flee this reality. My mind is constantly buzzing with dour, unanswerable questions:

when will Calvin's next seizure be? will he choke on a piece of food? will he trip over a chair, run into a wall, fall down the stairs? do his bones ache from growing so fast? will he ever be able to tell us yes and no? will his various caregivers love him, keep him safe from harm? will he get good therapy at school? will he suffer another pain episode? will he ever be calm again? will he outgrow his seizures? will he die from one?

It appears that these burdens and worries most people don't fully understand. I see evidence in the scowls and puzzlement of strangers, in the way some folks avert their eyes when passing us, in the ways we have been dismissed or patronized by smug doctors, hospital nurses, and a handful of school employees over the years. I've little doubt that in my assertive, hypervigilant, helicopter mama-ness, I have haters and eye-rollers. There are those who don't take me seriously, think I'm oversensitive, inflexible, overbearing, unhinged. There are those who run when they see me coming, or who regularly assume the conspicuous and irksome cover-your-ass posture and pose. I wish all of them could walk in my shoes.

As is true with most of this nation's disenfranchised, misunderstood communities—the Disabled, People of Color, LGBTQI people, Muslims, asylum seekers, immigrants—Calvin and I are sometimes regarded with caution, mistrust and fearfulness, even perhaps contempt. I attribute this mistreatment to ignorance and a resulting empathy gap, an inability by some to more fully understand the struggles those on the margins of majority straight-White-Christian-able-bodied society endure, though all it really takes is openness and humility, to listen well and put oneself in other's shoes. But perhaps it's easier to avoid doing that, to stop short of admitting privilege, and less upsetting to avoid acknowledging ugly truths. But denial and indifference to the hardships of others gets us nowhere—as individuals, as communities, as a nation—on the path to betterment.

Wednesday morning, over coffee and a tasty blueberry scone at our favorite Dog Bar Jim cafe, a friend and I discussed the wave of asylum seekers from Angola and The Democratic Republic of the Congo whom our town has recently aided and absorbed. She recounted a conversation she'd had about the African soccer players who have joined the high school team, some who are quite good. Apparently, some parents are bemoaning the amount of playtime the asylum-seekers are getting (I can't help but wonder if their reaction would be different if the students were from Italy or England). When my friend's own soccer-playing son questioned it, she offered him an analogy: if he were to transfer to a new school with weaker players, he might get lots of playtime, too. A thoughtful kid, he understood.

My friend and I went on to discuss how helping asylum seekers is not the zero-sum game some purport is true. For example, we can also help our homeless neighbors and veterans, and we do. Furthermore, asylum seekers, once they're cleared to work, often fill the grueling, dangerous, tedious jobs many Americans don't want—harvesting crops, packing meat, caring for the elderly in nursing homes. My friend told me of a refugee physician who is driving a taxi just to make ends meet.

After our coffee date, I imagined the asylum seekers playing soccer with my friends' kids—one of a million things my son will never be able to do. Some of them speak four or five languages, having picked up Spanish and English on their journey north from Brazil. Many, if not most, traveled thousands of miles through South and Central America having escaped life-threatening circumstances back home. On their trek they survived beatings, muggings, hunger, thirst, and five months of travel on foot, at times through dense forests dark as night, stepping over the dead bodies of other refugees who would not make it to the USA. The ones who made it here are strong, tenacious survivors who likely have what it takes to make the best Americans. And yet, because of fearmongering and ignorance, they are sometimes met with animus and contempt, perhaps even envy and hatred. With this thought I imagine Calvin and the folks who seem to see him—without understanding his purity, love and struggle—as a freak, aversion or contagion.

I wonder what would happen if asylum seekers had the chance to tell their stories. Who would listen? Who would understand? Will these refugees, like Calvin, inspire some of us to become better people, better members of society? Will some of them give rise to other, better soccer players? Who, upon hearing their stories, would feel empathy and embrace them? And who would stand their ground, unmoved?

Carolyn Cole / Los Angeles Times

landon's gift

Again, our day began at three a.m. with the arrival of another focal seizure, the first of two, this one several minutes long. With the help of some extra homemade THCA cannabis oil, however, Calvin had improved by eleven, and so we set out for the Windsor Fair, a town or two away from the fair we went to a week ago.

Calvin did far better this time, even holding our hands and walking, though wonkily, willingly at times. Throughout the day we zigzagged our way between sheds of lounging cows and goats, cages of enormous sows with their week-old suckling piglets, and a raucous avian barn. All the while Calvin seemed to take it in, gnawing happily on his rubber chew toy and nibbling on snacks I'd cut up for him.

Several times I watched children and adults gawk at Calvin as if he were some freak in a carnival sideshow. When this occurs, as it does anytime we're in public, I feel a mix of sadness and anger. Sometimes I'm moved to act spitefully. I'd like to think they don't mean any harm; maybe it's human nature to rubberneck at a spectacle. Still, I often feel like an alien with my sweet little peculiar Martian, orbiting on the margins of things rather than feeling an integral part of the larger world. 

When we had seen enough of the sights, we stood in line to get an ice cream cone. A handsome, dark-haired boy approached us and asked if Calvin might like to have the stuffed animal he'd won in a midway game. I fumbled to answer, fairly certain that Calvin wouldn't respond to such a toy, his go-to playthings being hard plastic and rubber ones. But I was compelled to accept the boy's kind gesture because I remember well what it was like to be his age.

The boy introduced himself as Landon. I suggested we try handing the stuffed animal to Calvin to see how he'd respond. Landon crouched down closer to Calvin offering him the toy, speaking to him directly and asking if he would like to have it. Immediately, Calvin hugged the larger-than-life emoji and began mouthing it with fervor. We were all amazed and happy when Calvin received the gift so emphatically. 

Landon, who is as sweet a boy as you'll ever meet, and worldly beyond his years, told us he'll soon be thirteen. We greeted his dad and grandfather who were at his side, and as I spoke with Landon, his father told Michael that he had no idea Landon had planned on giving away his prize.

I took a quick picture of our newfound friends before shaking their hands and saying goodbye. After they turned to leave us, I looked up at Michael and noticed that he'd gotten quite choked up. Seeing his emotion, I began to weep openly at Landon's selfless gesture.

Random acts of kindness like these make our world go round. No doubt I'll rest my head on my pillow tonight thinking of Landon and how, if things had turned out differently, maybe Calvin would have become as extraordinarily thoughtful, fearless and empathetic as he.

If you are reading this, Landon, I hope you know how deeply you touched us and how much you made us feel welcome, important, and included, while so many others look at us as if we don't belong. You yourself are the gift you gave to us, one far larger than the sideshow prize that left your arms. How very lucky we are.

on jesus, walls, alms and calvin

At four-twenty this morning, only three days after his last one, Calvin suffered a grand mal seizure. It was a typical one for him, self-limiting with full-body convulsions lasting ninety seconds. After it was over I wiped the blood trickling out of the corner of his mouth from having bitten his cheek or tongue. Watching my son seize is never easy, and would no doubt be terrifying, perhaps even repulsive, for most onlookers to witness, or for any parent to see their own child suddenly suffer. I think about other children who have their seizures at school. I wonder if they're made fun of behind their backs by other kids. I wonder if they are stigmatized and shunned. I wonder if they are thought of as alien in some ways. I wonder if they're walled-off from other kids; no doubt their epilepsy and its impact grossly misunderstood and feared.

On seizure days if Calvin rests, I often read the news and pop in and out of social media. The headlines lately seem to be all about the government shutdown over funding for a border wall. Apparently, Trump supporters are crowd-sourcing its funding, having raised in recent days seventeen-million dollars for the project. The notion sickens me, especially in this season of charity celebrating the birth of Jesus. I'm disheartened by the fearmongering and demonization of good and innocent people desperate in their attempts to find and make a better life here. If not descendants of slaves or indigenous peoples, we Americans came from immigrants. We mustn't be fooled by politicians eager to divide us for personal or political gain. Humans are the same the world over; if not for the accident of birth, we might be fleeing wrecked homelands, too. What claim have we to this land anyway?

In the days between Calvin's seizures, I came across two short pieces most worthy of reading this holiday season, one by a Muslim who attended Catholic high school in California, and another by the author of the outstanding book, The New Jim Crow: Mass Incarceration in the Age of Colorblindness. The first work expresses its author's love and reverence for Jesus. The second explores citizenship and immigration. The two pieces, which make for a lovely pairing, offer compelling arguments for welcoming immigrants and refugees.

Though raised in a Catholic family, I'm not Christian. Nonetheless, I embrace what the Bible says Jesus preached: unconditional love, compassion, acceptance, charity for the needy, the poor, the afflicted. It upsets me to see and hear so-called Christians maligning other decent human beings. It's hard to see folks hell-bent on erecting a wall to divide us from those who need and bleed the same as we. Like us, migrants are laborers. Like us, they love their children. They want to live a good life, free from poverty, exploitation, oppression, violence. And, yes, they pay billions in taxes. Like immigrants are to some Americans, my boy Calvin is misunderstood and derided by the ignorant for his alleged burden on society. But like Jesus, Calvin embodies the best of humanity, teaching us unconditional love, kindness, charity, acceptance, humility. I ponder the infirm in search of treatment, imagine the migrant seeking refuge. I ask myself and others, what would Jesus do? I doubt he'd champion a fund to build a wall between his people.

In this season of getting and giving, I'm keenly aware of and most grateful for the accident of birth in a nation of plenty to parents who were not poor, disenfranchised or oppressed. I'm thankful for our health, our home, our community, for my husband's gainful employment, for generosity, safety, love, brotherhood and sisterhood. Despite Calvin's suffering and burden, I'm grateful for his purity and affection, and for what his being stirs in me to be and do—to give alms to the poor, the hungry, the homeless, and to welcome those who need safe haven, building bridges, not walls, between the world's good people.

i have a dream

On this, Martin Luther King, Jr. Day, I have a dream—a dream of leaders who espouse decency, humanity, reason, love, kindness, honesty, integrity, compassion, wisdom, inclusiveness, justice and equality. I know plenty of these good people exist, and so I will meditate on them. With folks like Martin Luther King Jr. in mind, I will continue to champion the causes of equality, fraternity and charity. I will go down on one knee for justice. I will support those who personify the very best in us.

I, too, have a dream, and with legions of others, I'll work to make it come true in two-thousand eighteen.

in good hands

Despite my penchant for kvetching, I want you to know that I do get out to celebrate with friends more than just once in a while. Here I am a last month with my homies Luke and Sarah, belly up to the bar, drinking a fabulous margarita at our local cantina while my husband was in Europe for three weeks taking photos, giving talks and putting up a solo show. During Michael's stint away, my buddies kept me (relatively) sane, entertained, and well stocked with flowers, firewater and food galore.

No matter how you slice it, I always seem to land in the good hands of neighbors and friends.

no merciful god

A zillion tiny white flakes fall from the sky, some form swirling clouds while others drive with apparent purpose to the ground. Each, I think to myself, stands for one of us, each a unique example of a precious life that will come and go on this earth.

Today I watched several videos of grieving victims in Aleppo—mothers, daughters, brothers, fathers, sons—survivors of attacks by Russian and Syrian barrel bombs and guns. As I rested under my down cover and watched the flakes fall, I pondered my fortune to have been born in a time and place that is—at least for now and for me—free from tyranny and war.

I see the images, and others filmed in Venezuela, South Sudan, the Philippines, and marvel at the world’s misery wondering if someday—perhaps soon, and because of the troubling incoming administration—it will be our own.

Today is one of those days when I keenly feel the weight of what it is to be a caregiver of an afflicted infant-toddler-tween these past twelve years—the monotony, the restriction, the sleep deprivation, the worry, the dread, the frustration. And then I page through hundreds of photos of Syrian civilians—their skin stretched tightly across hollow faces, their dirty hair and garb tousled with blood, boys holding dead baby brothers, parents grieving the loss of every one of their children, some of them burned or buried alive, motherless toddlers bloody and in shock over the shelling of their homes—and I know I have no reason to complain. I know without a shred of doubt that there can be no merciful god.

During the night the flakes turned to rain. A glossy crust now cakes a snowy plain and a mist has replaced the wind. Branches sheathed in ice melt revealing their winter hues—rust, deep emerald, cardinal red. On the other side of the world, Aleppo appears in shades of gray with black holes gaping where windows used to be, like so many mouths’ silent screams.

We have a child who wants for nothing but to be warm and fed and loved, which is partly why we don't participate in giving gifts this time of year. Instead, we give to those in need of food and shelter and clothes, those who find themselves, for no good reason and in glaring absence of a merciful god, homeless and starving amidst swirling clouds of smoke, bits of shrapnel and rubble from fires and bombs and guns.

@picture-alliance/abaca/M. Sultan/

home invasions and innervisions

We managed to suffer another home invasion Saturday night. The culprits came to our door armed with coq au vin, Caesar salad with homemade dressing and croutons, and melt-in-your-mouth lemon curd cheesecake. You see, we’ve been nurse-challenged more of late and therefore unable to get out much, so some of our favorite lovelies, known for home invasions whenever we’re housebound, brought the dinner party to us again.

It had been a long day for me, feeling a bit queasy from, I figure, too little sleep in general and perhaps one-too-many bourbons the night before, which is rare for me. Irritating my circumstance was an agitated son who shrieked and coughed much of the day, seemingly in prelude to a seizure.

By day’s end, I was feeling frail and found myself in tears an hour or so before the invasion just listening to Stevie Wonder’s Innervisions, specifically, Living for the City, about a young black man from Mississippi who heads to New York in search of work. The vinyl recording includes an excerpt of the man being falsely accused of dealing drugs, being arrested and put in prison for ten years, plus extra verses of his life after prison. Whenever I listen to the song I visualize the young man and his family: good, kind, honest, hardworking people who are poor, though well-kept, well-raised and strong. Then I imagined the millions like him who’ve been snagged in our nation’s racial caste system, swept up in an epidemic mass incarceration of black men. I stood there watching Calvin crawl on the floor and wept for the disruption of so many black lives, the loss and abuse of these precious sons and daughters, brothers and sisters, and the ignorant notion that they are to blame for everything White that is thrust upon them. Then I thought of San Francisco and, after that, my mom, and cried that much harder having missed them both for so long, and having just lost Mom to Alzheimer’s in autumn.

Thankfully, the home invasion lifted my spirits, simply sitting around a table with my smart, humorous, progressive friends. We mused about some of the conservative candidates running for president, their hateful rhetoric and blatant attacks on women, Muslims, Mexicans, Syrian refugees and the disabled. We talked about our deplorable governor and his brazenly racist comments about black men and poor white women, including his lame defense, and the equally bigoted backing from a statehouse rep. We went on to lament the wacko, jingoistic vigilantes claiming native lands as their own. And just so we didn’t let the bastards get us down, we laughed a lot and touched on photography and writing and sons in college before the conversation digressed to swapping the letters of our first and last names, which made us laugh even harder. Our friends asked about Calvin and I gave them the update on his cannabis oil treatment. I told them Calvin has had only one daytime grand mal seizure in nearly 500 days despite being in active benzodiazepine withdrawal and taking a fraction of the antiepileptic pharmaceuticals compared to two years ago. Knowing that I suspected an imminent seizure, one friend looked sad, perhaps even worried, when I got up to check on Calvin because I heard him whimper in his sleep.

Still feeling fatigued, and knowing that our friends understood, I said my goodbyes early and went upstairs to bed. As I laid there, gazing out the window to a slate-gray sky, I heard the murmur of happy voices in the room below, and I smiled. But before I dozed off, I worried about Calvin some more, thought of Stevie's profound innervisions, and fell asleep wishing there were less fear, hate, oppression and greed in the world.

If you cannot view the video below you can watch it here on You Tube. You can read the full lyrics, plus annotations here.

leaves of grass

This is what you shall do; Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people, take off your hat to nothing known or unknown or to any man or number of men, go freely with powerful uneducated persons and with the young and with the mothers of families, read these leaves in the open air every season of every year of your life, re-examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem and have the richest fluency not only in its words but in the silent lines of its lips and face and between the lashes of your eyes and in every motion and joint of your body.

—Walt Whitman, from the preface of Leaves of Grass

Photo by Michael Kolster

harvest

She's eleven. The same age as Calvin. She's also one of the cutest little girls I know with one of the sweetest brothers, Sol, I've ever met, with the most caring and compassionate parents in the world. Her name is Harvest.

Harvest and her family lived just down the street for a couple of years and joined us at a table for sixteen one Thanksgiving. We'd see them come and go and I'd sometimes run into her mom, Brandi, at Calvin's school where she worked as a behaviorist. Nestor, her dad, was Michael's colleague in the college art department. He liked to make things with his hands, a creator of much including provocative ideas and bread, the latter of which he'd bring to us in small loaves still warm from the oven.

Sadly, the family moved away several years ago to Pennsylvania. I keep track of them on Facebook, watch the kids grow up in photos, see Nestor's creations and his students' work. The other day I got this message from Brandi:

Hi Christy,

A little while ago you posted a video of Calvin having a seizure. As I was reading your blog and watching the video, Harvest came from behind and watched too.  She was so upset and moved that she wanted to do something about it.  After waiting for good weather and lots of planning, Harvest and her friend Stella set up a lemonade stand and raised $125 for Calvin.  We just made the donation from one of your links on your blog.  Harvest thinks the world of Calvin and only wants him to get better! 

As always, we are thinking of you!

Have a lovely day,
Brandi

Reading Brandi's message and seeing the photos of the girls made me weep. I think back to when I was eleven, when I first began feeling a sense of independence. Then, I had no concept of others' needs. She's so evolved, I think, and I know why Harvest and her brother have always seemed like old souls to me: because they are and because their lovely parents show them how.

I remember the first time I met Nestor. I was upstairs in our bedroom with Calvin getting him dressed after a bath. Michael walked in with this tall man in an overcoat, long, dark curls with a twinge of gray circling his face, thick black frames accentuating the kind of hooded eyes I like so much. He smiled warmly and said, "Hi Calvin," coming in close enough for me to see the handsome gap between his teeth. He was so gentle and loving, as if he'd known Calvin—known us—for a million years, acting as though he hadn't even registered Calvin's disability, not dismissively, but in a good way. I'll never forget that moment, the best kind of first meeting there could be. I hugged him immediately.

Thinking back to Harvest and her lemonade stand, I honor all the people who donated their hard earned cash for this year's CURE epilepsy benefit, folks who helped us raise over $25,000 toward a grand total of over $120K. I recall folks who gave to the cause who barely scrape by, of family and friends who have given every single year. I think of strangers who care about our boy's precious life enough to go out of their way and set something aside. And then I think of Harvest, who has lived away for all these years, and her friend Stella who has never met Calvin. My heart melts knowing—at eleven—they decided to make a difference in our son's life, and it almost kills me with the kind of ache I think I'd have if she were my child.

Thank you, Harvest. Thank you, Stella. Thank you so much for all the love you bring into the world.

Harvest (right) and her friend Stella

out with a bang

Saturday night we went out with a bang. With over one-hundred guests plus some wonderful folks from all over the country joining us in spirit, we managed to raise nearly $25K to find a cure for epilepsy.

The food was from the gods: melt-in-your-mouth cakes, hand-crafted chocolates, sushi, dim sum, pizza, wraps, sticky rice with kimchi, fried rice with bacon, crostini with goat cheese, antipasta, chicken salad, Greek spreads with pita, donut holes, pastries, artisinal breads and a craggy mountain range of cheese. We imbibed wine and beer while devouring some live bluegrassy music from a band of wholesome blokes.

And then we had us some FUNK.

We shared love and tears and laughter and raffled off some gift cards. Elbow to elbow we sported stinky armpits (at least I did) and sweaty foreheads and by the end of the night my dogs were barkin' even in flat boots.

My deepest gratitude goes out to everyone who has given their time, energy, money and love. If you haven't yet had the chance to donate, please give what you can to Calvin's Cure.

I did my best to capture everyone on film. Alas, I missed some of you. My apologies for not getting you in. And many are blurry and grainy because I don't like using a flash, even in low light.

Click on photos to enlarge.