love and trouble

Most evenings, sometime between five and six, Michael and I head upstairs with our son to listen to the nightly news before putting him to bed. I sit on Calvin's diaper-changing table and Michael gets into bed with him to cuddle while he chews on his toys. Last night we listened to a rebroadcast episode of This American Life, a two-part installment called Unconditional Love. It was one that I vividly remember hearing for the first time when Calvin, now fifteen, was just two-and-a-half years old. That time, Michael and I had been listening to the second half on the kitchen radio, Calvin perhaps already asleep upstairs, and I recall weeping as I heard a couple describe the trouble of raising their autistic boy.

At the time of that initial broadcast, September 2006, Calvin had not yet received his PDDNOS (Pervasive Developmental Disorder Not Otherwise Specified) diagnosis, a condition found within the autism spectrum. Seven months earlier he had been diagnosed with epilepsy. In August of that year, he had suffered the worst seizure of his life—a forty-five minute grand mal which did not initially respond to emergency medications, prompting us to believe he might die.

By that point in Calvin's life, while toddlers his age were running about, talking, playing with toys, using forks and spoons, our boy could barely crawl, was just beginning to take first steps, had failed three antiepileptic drugs, and was still being spoon-fed and drinking from a bottle. The parents in the episode described their very large teenage son who was often violent. His twin brother, who did not suffer from autism, described a household full of loud noises, fear and stress. The couple went on to relate their difficult choice of whether to put their son in a group home, and what happened next.

Listening to this episode again was timely. Recently, Michael and I have been talking a lot about where we might live once he retires in several years. We discuss returning to our beloved San Francisco, but we have so many questions about such an endeavor: Where in the city would we live? How could we afford it? Would Calvin live with us? Are there group homes there for people like him? What kinds of assistance and programs does the state of California offer people as afflicted as Calvin? After years of living in a relatively small, college town in the Maine suburbs, would city life be too stressful?

The thought of living back in the Bay Area is both exciting and troubling. Exciting for its mild year-round weather, its amazing public transportation, its proximity to the beach, the bay, the Marin Headlands, its diversity and openness, and for the cherished friends we left behind eighteen years ago. Troubling for all the reasons I listed earlier. The thought of putting Calvin in a group home is equally thrilling and petrifying. I worry about his seizures getting out of hand. I worry his medicines will be mismanaged. I worry staff won't change his soiled diapers, linens and clothes. I worry about neglect as well as predators who might abuse him. Mostly, I worry about who will hug and love him unconditionally like we do. But I know I can't go on taking care of him forever; at some point—hopefully not for another twenty-five or so years if we make it that far—Michael and I may be too feeble to handle him, and/or we may not want to. Once Calvin graduates high school when he is twenty, perhaps it will be better for him to be in an environment with more activity and stimulation than we can offer him at home.

For now, though, we'll keep on keepin' on. We'll traipse around the house and yard with him in endless circles. We'll get up nightly to lay him back down and cover him. We'll give him extra meds in the wee hours of the morning if we expect a seizure coming on. We'll change mountains of dirty diapers. We'll bathe, dress and feed him. We'll burp him, like a baby, on our laps. We'll brush his teeth and clip his nails and wipe his drool. We'll hold him while he seizes. We'll endure his tantrums, mood swings, screeching, agitation, and perseverations—all of which, by the way, have improved on a higher dose of CBD oil. Whenever possible, we'll continue to bring him out into the world. Most of all, we'll keep loving him unconditionally despite his troubles, caring for him as best we can, and searching for other people and new places that will.

godawful. godsend.

It's godawful to see my child seize, his mouth ghastly and agape, to hear that unmistakable, blood-curdling, strident seizure-shriek. It's godawful to see his muscles and limbs cramp and spasm, to know he has bitten his tongue or cheek again, to see bloody drool stain his pillow. It's godawful to know he'll suffer fits again and again, having already endured thousands of them.

Friday night's—the first of two in as many days—came out of thin air; no omens in the hours before. Afterwards, he whimpered like a pup, and though he cannot speak, it seemed as though he was trying to talk to us. Something papery rattled in his throat, impeding his ability to breathe. I crawled into his bed, gathering him in my arms as if that would somehow save him. Michael covered us and put on the nightlight. My boy's calm body belied his heart pounding feverishly under my palm.

The Palmetto Harmony cannabidiol oil I gave him in the seizure's wake seemed to thwart a second one that morning. He calmed and rested on and off all day. Weary, though unable to sleep, I read something my friend Martha Brockenbrough wrote which resonates with me:

We often are in the midst of stories we did not ask to experience.

But the task for us as human beings, as living beings, is to see what is in front of us. To love each other closely enough that we do not need words to understand the truest things.

Life asks us to look. And it asks us to clean up messes. It asks us to walk each other to the door.

She went on to say:

And we can look at a living being who is vulnerable and in need as a burden. 

But she asks us to do more—feed, clothe, shelter and love everyone.

At times all too often I do feel my son is a burden, one whose weight literally pulls at my joints and tendons, whose agitation chips away at my patience, whose restlessness impairs my sleep, whose seizures abrade my psyche, whose future terrifies me. But he is also a reason for being—a secular godsend—a human worthy of all the attention and love any of us can give him. He reminds me of the immigrant, the refugee, the waif, a being so vulnerable he needs constant protection from the elements, from accidents, from policy, from those who would prey on him.

In the dark, my mind races alongside Calvin's heart. I think of the upcoming election and what's at stake—the environment, human rights, education, justice, entitlements, healthcare, including protections for people like Calvin who have preexisting conditions—and I wonder why anyone would vote against their own or their children's interests (or not vote at all, presenting a similar risk.) A vote for the status quo would be godawful for a majority of women, the disabled, students, People of Color, LGBTQ folks, non-Christians, immigrants. A flip of the current leadership would be a godsend.

Before Michael and I had tried falling back to sleep in different beds, he reached down and pat my head. Cradling Calvin, I looked up at my husband, my eyes tearing, and said what I so often feel, "I'm so sorry you're not the dad of a regular kid."

And as I held my bundle of burdens, his throat rattling with each breath, I wondered what I'd do without him, my little godawful godsend.

             

A typical grand mal for Calvin, 2011.

rule number one: do not obey in advance

I'm away from home having traveled nine hours to attend a wedding. My time is not completely my own, which is why you have not heard from me. I should tell you that Calvin is doing okay and has had some of his best nights of sleep since adding a nighttime dose of Palmetto Harmony CBD oil last week.

When I woke up this morning while the others slept, I read my dear friend Elizabeth Aquino's blog, a moon worn as if it were a shell. She, like I, writes about her disabled child afflicted with severe epilepsy, intermingling her stories of despair, frustration, gratitude, perseverance with more than a smattering of the politics of social justice; she is a kindred spirit.

Her post is so powerful, expedient, and cogent I had to share it here:

Rule Number One: DO NOT OBEY IN ADVANCE
by Elizabeth Aquiino

Sophie got a new wheelchair yesterday, thanks to her private insurance which is governed by the Affordable Care Act's protection of pre-existing conditions and her qualification to receive Medi-Cal which helps to pay for any out-of-pocket expenses. I am filled with gratitude for these things and well aware of my immense privilege, particularly as these things are not afforded to everyone and are now under threat for everyone.

The week after Trump was inaugurated and became the POSPOTUS in 2017, my therapist (I know, LA, and all that stuff) gave me two pieces of paper stapled together, titled Twenty Lessons from the Twentieth Century.* Written by Tim Snyder, an American historian of Central and Eastern Europe and the Holocaust who is a professor at Yale, the list draws on the experience of those who lived before, during and after the rise of Fascism in Germany and Communism in the former Soviet Union. I think we're well past the rise part in Trump's America and into the fascist part, so I'm reviewing the lessons and was struck, especially this morning, by the first one:

Do Not Obey in Advance

Much of the power of authoritarianism is freely given. In times like these, individuals think ahead about what a more repressive government will want, and then start to do it without being asked. You've already done this, haven't you? Stop. Anticipatory obedience teaches authorities what is possible and accelerates unfreedom.

Despite the ease of it (for those who are privileged like myself), caving to despair or cries of how fucked we all are, we just can't. I know that I have "obeyed in advance" many times during my life, have handed power or agency over to not just institutions but to people in my family and even people that I love. Part of that is due to deep cultural influences, to patriarchal systems, to my own apathy or cynicism. It's a slow process toward acknowledgement of that anticipatory obedience, even in my privilege, yet having a child with severe disabilities has pushed me along that path of self-awareness and agency a bit further. 

When I heard yesterday that Justice Kennedy was retiring, handing the POSPOTUS the chance to ensure a draconian legacy of conservatism on the Supreme Court, I did feel despair, particularly about the threat to women's reproductive rights and the Affordable Care Act's protection of those with pre-existing conditions. My despair shows itself in biting humor which isn't funny at all. I imagine Sophie driving a car, proving her "worth" in lieu of getting "free hand-outs" through Medi-Cal, yet unable to get insurance to pay for the drugs and treatment of her life long epilepsy. I imagine her getting raped by some free enterprise private contractor in an institution for the handicapped and not able to have an abortion because it will be illegal. I crack sick jokes because it helps me to cope and perhaps jerks people out of their malaise and into action. 

Here's the thing.  I am thinking that we're entirely not fucked, that we're actually in a fight and that we have to stay in it. We have to stay awake. We can't succumb to despair. We can't obey in advance.

It will be me, maybe, actually driving that car with Sophie in it and any woman or women who needs to go to a state that still guarantees their reproductive freedom.** Sophie is very quiet and capable of holding great secrets. I am very loud.

*  You can easily look up the lessons, but I typed them out on the blog HERE
**Here's a list of things you can do if or when Roe v Wade is overturned.

Photo by Elizabeth Aquino

suffer the little children

While spoon feeding my thirteen-year-old son his lunch on a day he stayed home from school due to seizures, I watched a new documentary called Newtown. I wept through most of it, listening to the harrowing 911 calls from terrified victims hiding in offices and closets during what must have felt like an eternity of bullets spraying the halls. I remember the December day the Sandy Hook elementary school massacre happened a few years ago, remember thinking of those little bodies the size of my own son being shredded by bullets shot from an assault rifle in the hands of a disturbed young man of twenty. 

Had he shot one child for every year he languished on this earth?

Yesterday, I saw more haunting video of dead Syrian children, victims of an Assad chemical weapon attack on his own people. One man lost twenty-five family members, including his wife and infant twins, whom he held in his arms. Rows of lifeless children filled the back of a pickup, their eyes open and blank, their skin ashen, their chests bare from being hosed down in a vain attempt to save them. They didn't stand a chance.

And though I know the saying doesn’t mean what it sounds like, I still think to myself, suffer the little children. And then I wonder, why?

As dawn came, I laid next to my boy and I heard the morning doves coo. All the birds—the chickadees and jays and cardinals and catbirds and sparrows and crows—are beginning to go crazy now that the snow has almost melted and the purple spears of crocuses are beginning to shoot through. Lying there, I wondered whether, if the world’s leaders were replaced with women—no more an absurd idea than a world led by mostly men—there would be so much warring and genocide and rape and guns and bombs and atrocities between neighbors, tribes and nations. I wondered if female leaders would care more about Mother Earth. I wondered if, under female stewardship, the world’s children, rather than be made into child warriors and brides, would be fed and clothed and housed and educated and empowered and cared for. I wondered if, under female rule, we’d be fearing nuclear war and rising sea levels and air and water pollution like we do. I wondered if our children would be deprived life-saving medicines and a chance to live up to their potential in the world. 

Suffer the little children; they’ll be the ones who must live in this crumbling, power-hungry, greedy, misogynistic, patriarchal, intolerant world.

A man carries the body of a dead child, after what rescue workers described as a suspected gas attack in the town of Khan Sheikhoun in rebel-held Idlib, Syria. Reuters/Ammar Abdullah

torn apart

Yesterday tore me apart. Calvin suffered seizures all day long, including two grand mals and as many administrations of rectal Valium. One dose was during a deep partial seizure that lasted long enough for Calvin’s face to begin turning blue, causing me to imagine what it might be like if Calvin died right there on the spot.

His second grand mal came on while Michael and I were changing a poopy diaper. Our boy’s body stiffened, his legs becoming rigid and twisted like drift wood. When he began convulsing I was able to insert the rectal gel and the seizure stopped soon after. We lifted Calvin’s limp body—I thought again about his death—onto the couch with Michael where they slept for the good part of an hour, Calvin’s eyes, at times, half mast. At their feet, perched on the arm of the couch, I cried, weary and fearful of what so many seizures and drugs might do to my child.

Last night I slept with Calvin, woke when he did, changed a wet diaper, gave him the water which he had refused most of the day, gave him an extra Keppra at midnight and extra cannabis oil at ten and two. At times I felt feverish and dizzy, a case of mild and temporary vertigo still vexing me some nights. 

My life must be out of balance, I thought, remembering what a doctor had told me the first time I experienced vertigo after having moved from San Francisco to Maine.

As I dozed off to sleep with Calvin’s arms around my neck, I wondered how my life might be out of balance (save raising a legally blind, non-verbal, incontinent, severely disabled child with intractable epilepsy who is the source of great angst and loss of sleep). After all, I’m grateful to have an amazing husband, a cozy home, a beautiful garden, an incredible group of friends, a supportive community and a boy who is brimming with love and affection. And, except for the challenges of being a woman living in a patriarchy, as a white person I am not oppressed. Lying there, I finally realized that a good part of the reason I feel so out of balance is political in nature, fearing the people in this country will lose many of the civil rights and liberties they have worked so hard to get.

Many of you may not know that the first of Hitler's victims were the infirm and the disabled. Yep, before rounding up and exterminating the Jews, Hitler and his band of merry sadofascists came for the disabled because they were thought a stain on his notion of a perfect race. The knowledge of this history is partly why I fear and loathe the current president, one who just put a White nationalist in one of the most powerful executive branch positions in this nation and one who has just barred good people because of their religion. 

I’ve heard people insist that not all Trump supporters are racists or bigots. But, perhaps not all Hitler supporters were anti-Semites, and yet their naiveté and silence enabled an entire people's demise. I’ve heard Trump voters, in their support of a Muslim ban, claim that ours is, and must remain, a Christian nation, and yet the first invaders of this Native land were refugees fleeing religious persecution. I've heard scores of folks grouse about immigrants, and yet we are a nation of immigrants. I’ve heard Christians complain about God being missing in our public schools and government, and yet our founders felt the separation of church and state compelling. I’ve heard Christians’ contempt for diverse lifestyles, other religions and social programs to serve the needy, ones that Jesus would no doubt champion.

Perhaps in an attempt to bring balance back to a world with a fear-mongering despot at the helm, I say to those who deny his blatant bigotry, who, like him, pit one religion against another, who've succumbed to his charlatanry, that when it comes to justice—not only for my disabled son but for everyone who is marginalized, discriminated against and oppressed—I can never agree to disagree.

And so when I tuck Calvin in tonight, knowing he'll be safe and sound in this (regrettably) mostly straight White Christian hamlet, I'll hold in my heart those who have been, or will be—by a man who now has as much privilege and power and perhaps as little compassion as anyone in the world—torn apart.

august in tennessee valley

This weekend my friend Chris held a memorial service for his son, August, at the Tennessee Valley Beach in Marin County, just north of San Francisco across the Golden Gate Bridge. It's a favorite place my husband Michael and I have visited many times, making the four-mile trek from parking lot to beach and back along a narrow dirt trail which passes by fenced-in horses and grassy culverts. Wildflowers dot the mountainsides and the valley floor as the trail slowly descends to the Pacific, almost always under cloudless blue skies.

It has probably been fifteen years since I've been there, the last time being long before I got married though perhaps around the time I began seriously hoping to start a family with Michael. I think of our hikes in Marin often—Bootjack, Pantol, Steep Ravine, the Dipsea Trail which snakes up through Muir Woods to an open crest on Mt. Tamalpais before descending through a wooded glen into Stintson Beach—how the only thing I might've been burdened by on those excursions was my water bottle. I never liked carrying a backpack, preferred traveling as light as possible in sneakers, shorts and tank top with a camera slung over one shoulder.

Years later, to a fair degree, I find myself boxed in here in the Northeast with a severely disabled son who is difficult to travel with and, now that he is taking cannabis oil for his epilepsy, impossible to take out of the state legally. Sometimes I pine for the West, its big skies, breathtaking vistas, warm dry air, its vast public beach access that stretches for hundreds of miles, its carefree vibe.

I remember Chris, a professor of English whom I met through Facebook, once writing about how he and his family were pretty much incapable of traveling because of the difficulties of managing their disabled son, August, who died last year at the age of fourteen. Sadly, I'm not sure August was ever able to enjoy seeing Tennessee Valley, breathing its fresh air, dipping his toes into its waters, but now his ashes will forever mingle with its sands and sea.

This weekend I thought of Chris, August and family often as we spent three days, without a nurse to aid us, following Calvin around the house and yard, righting him when he tripped or stubbornly balked, shielding him from staring at the sun, chopping his food, spoon-feeding him his meals and meds, changing his diapers, attempting to comprehend what he was trying to express through his annoying, worrisome whining and coughing. I wondered if we'll ever take Calvin to Tennessee Valley, if one day he'll be able to walk even part of that distance with us, wondered if we'll ever be able to get on a plane with him and his cannabis oil without being arrested for possessing it, even though it is his essential medicine.

Though it is absolutely gorgeous here in Maine, and we have a beautiful house and garden and a wonderful community, the land is mostly flat, significantly limiting the sight lines, and in the summer the air is often humid and close. So, for now, I will muse on the image of the California Coast, its openness and its magnificent views to the rest of the world, hoping that someday soon, if just briefly, I'll pass August in Tennessee Valley.

Tennessee Valley Beach photo by Justin Vandever

the joy of giving

Never look down on anybody unless you're helping them up.

—Jesse Jackson

If you cannot view the video below click here.

the questionable journalism of gregg doyel or gettin' cheeky

After Minnesota's college football coach, Jerry Kill, suffered a seizure on the sideline during last Saturday's game, several journalists wrote about it. None of the authors of the articles that I have read seem to understand much about epilepsy. Sadly—and though I am angry—I am not surprised.

The article that this excerpt was taken from, asking whether (suggesting that) coach Kill should resign—ostensibly so that fans won't have to risk seeing a seizure or death from a seizure on the sidelines—was written, under what I see as the guise of sympathy, by Gregg Doyel of CBS Sports. He says:

But make no mistake about this, too: Jerry Kill's epilepsy is a major concern—and not just for Jerry Kill.

There will be people, maybe even most people who read this story, who will fall back on the default position that Kill is a grown man; if he wants to risk dying on the sideline—doing what he loves—that's his choice.

And you know what? In a vacuum, that's 100 percent correct. If Jerry Kill is OK with the risk to himself, who are any of us to tell him he's wrong? That's not our business.

But this issue, and these seizures, aren't happening in a vacuum. They're happening on game day, often right there on the sideline. This is an issue that's bigger than Jerry Kill and the personal risks he's willing to assume. What about the risks everyone else assumes? What if he has a fatal seizure during a game, in full view of the stadium?

That's our business.

I was so angered by what Doyel wrote and by his uninformed, discriminatory and back-assward opinion about epilepsy's impact on society, that I posted an impassioned comment that may perhaps have been better tempered by pausing before hitting the send button:

Mr. Doyel, What risks are you talking about, you ignoramus? Your journalism is so irresponsible it is shameful. And your readers are fairly uninformed about epilepsy, too. The fact that epilepsy affects nearly 3 million Americans (1 in 100), that 1 in 26 will be diagnosed with the disorder at some point in their lifetime, that 50,000 people die each year from epilepsy and related causes such as drowning and head injuries—which is more than die of breast cancer each year—the fact that at least 30% of people with epilepsy do not have their seizures controlled despite managing their condition by taking medications, that those who are lucky enough to have seizure control live a life tethered to anticonvulsant drugs and their heinous side effects, has nothing to do with whether Kill should resign, and has has everything to do with educating the public about epilepsy. The risk to the public having to see a seizure on the sidelines, even a fatal one, is nothing more than ZERO. NO RISK. And until people start to understand the disorder, its stigma, its pervasiveness, its paltry lack of funding, the rest of us will have to risk reading reckless journalism such as yours.

And though I am not proud for having called him an ignoramus, I feel as though I had to set the record straight with regard to his absurd notion of what he calls risk.

Revisiting the article today, I was pleased to see a flood of other comments by like-minded folks chastising Mr. Doyel for the offensive, small-mindedness of his commentary. But Doyel, in what appears as either cowardice, humiliation or pure and simply apathy, chose to reply to but a few comments, in one of which he says:

People have the right to work, absolutely. But to work ANY job? I don't know. Some jobs require, I don't know ... sensitivity?

To which I remarked:

yes, some jobs require sensitivity, of which you CLEARLY have none, nor do you have your facts straight. come on, dude.

I don't expect to hear back from Mr. Doyel, nor am I interested in listening to him stand his ground on a subject about which he is clearly, and comfortably, in the dark. Really. I'm thinkin' Neanderthal.

Gregg Doyel wielding small and primitive tools

zombies

Yesterday I walked around like a zombie, my eyes heavy and red, the burden of events both recent and persistent weighing on my soul like sagging flesh and soiled clothing. I spoke with my husband while trudging down the street with Rudy, tears in my eyes for a boy who for years it seems has been hyper and coughing and irritable and whose seizures are occurring with greater frequency, tears for never knowing why or how to make it all better.

I'd listened to all the talk on the radio of the young bombing suspect whose brother had been shot. Everyone—his friends, the journalists, the experts—were all speaking of him with such certainty of his guilt. Is the evidence that irrefutable? I wondered as a queasy feeling of disgust and shame churned in my stomach. Am I the only one who thought it strange that, after public officials had lauded Boston for being a tough, resilient city bent on preserving its freedom, they shut down the entire place because of a single man? What does that say to would-be terrorists whose actions can produce that kind of psychological impact?

At home my boy dropped to the ground, whined, coughed, poked his eye, stared at the sun and dropped some more, my frustration growing with each stubborn collapse. I sensed a seizure coming on at the same time knowing that there was absolutely nothing I could do, no controlling it. In a cloud of self pity I cussed and grumbled about my inability to go places with him, truly enjoy myself and feel free. I lamented my relative inability to take family vacations with him or with Michael alone. I dreaded my continued incarceration and thought:

Will I be caring for Calvin until I'm old and grey ? Be steadying him as he walks until I die? Be guessing at his chronic ailments and woes until the end of time (my time or his?) Be spoonfeeding him his seizure drugs and meals and changing his diapers for the rest of my life? Be watching his seizures forever? Be hemmed into this sorry existence for the rest of my dying days?

While meditating on my own captivity, I looked at countless shared snapshots of smiling friends and families traveling the world and enjoying the great outdoors. Then I thought of all of the families in Boston sequestered to their homes during the lockdown. Perhaps they, too, were experiencing cabin fever as I often do. Perhaps they were bemoaning their lack of freedom, their miserable mix of anxiety and boredom and worry and claustrophobia. Perhaps they were trudging around with desperate black stares and an insatiable hunger for life like we zombies are known to do.

Zombie mom at Massachusetts General Hospital, Boston

a better place

Last week I spoke to my therapist about some posts I'd seen on Facebook and of my subsequent negative reaction to them. The first was a photograph of a shirtless man—one I'd seen circulating before—taken from the back, his saggy jeans revealing plaid boxers. The caption said something like, did you know that sagging pants originated in jail as a sign to other inmates that they were "available" for sex? The man in the photo is black.

The other photo was of a terribly obese woman sitting on a park bench, her belly with its button sagging below the hem of her dress in what seemed obvious to me had been doctored in Photoshop. The comments to both photos turned my stomach with their biggoted, racist, small-minded and hateful ways.

I asked my therapist why (other than the fact that the first photo's supposition is totally false) their publication bothered me so much—so much that they made my heart race. We agreed one reason might be because I want to somehow make the world a better, kinder, more inclusive place.

Truly, I look around and see so much that is wrong with the world in which we live. I see vile racism seething out from under rocks or slapping me square across the face. I see a world where women are abused, insidiously and blatantly, at home, in society, in the workplace, in the military, and where misogyny and sexism wreaks from the pages of magazines, from tv serials, from movies, at the office and in schools. I see greed and corruption and selfishness and hoarding. I see those who mock people who have seizures. I see folks who claim to believe in the sanctity of life turn around and lobby for the death penalty. I see people of faith who scorn the less fortunate, despise, judge, limit freedoms and discriminate against others who are different from themselves. I see hateful images and messages like the ones on Facebook and wonder why people must be so destructive, wonder what their motivation is in spreading such toxic memos that often incite waves of loathsome, insensitive, smug comments. Then, I look deeply inside myself, sure to find regrettable thoughts and behaviors that I can work to improve.

Somewhat timidly, I commented on the photo of the obese woman in which the sharer had admitted vacillating on whether to post it. "When in doubt, don't," I wrote. To my delight, she "liked" my comment and, in doing so, I think she made the world a slightly better place.

gone

In the seven years since Calvin was diagnosed with epilepsy I have corresponded with four parents whose children died in their teens from seizures, two who drowned as a result. Regrettably, some of those parents, it seems, did not understand the severity, risk and mortality rate of epilepsy, likely because their neurologist didn't broach the subject. Then, in a blink, their child is gone. One parent recently wrote to me anonymously:

My 16 year old son died Jan 9th from seizures. He was on life support for 5 days. I found him unconscious on his bedroom floor. No one told me he could die from a seizure. I think they put him on life support hoping for organ transplant which I did let them do. I am thankful I had those five days to touch him and talk to him.

It is simply inexcusable for neurologists to avoid confronting the topics of SUDEP: Sudden Unexplained Death in Epilepsy, the fatal outcome of some prolonged seizures and the risks of fatal bodily injuries and drowning due to seizures. The failure to do so is partly to blame for society's ignorance of the devastating effects of this disorder and, thus, its lackluster funding for research.

The mortality rate of people with epilepsy is three times greater than that of the general population and the risk of accidental death is twenty-four times greater. If more parents knew this perhaps some of these deaths could be avoided. Grow some spines, neurologists, and buck up to the tough talk. You know who you are. What if he or she were your child? How would you feel?

Join us in our fight to cure epilepsy now. Go to http://www.calvinscure.com

One of many who have died, Kevin Andrew Mateczun, December 6, 1984 - August 8, 2001

peas in a pod

Figuring out how I can leave Calvin and Michael behind when I fly out to visit my mom in San Diego is no easy task, and it'd be akin to masochism to take Calvin on such a long flight to a place where we wouldn't be able to use his johnny-jump-up, or have an enclosed bed or a high chair that would fit him, all of which are our saving grace. So instead, I've got to coordinate their spring breaks so that Calvin is in school while Michael is not. Then I've got to get nursing coverage to help Michael out while he works his long hours in the studio. Plus, he's got to make Calvin's meals, grocery shop, do the laundry, walk the dog, prepare Calvin's meds, change his diapers, repeatedly get up in the middle of the night to reposition and cover Calvin, and get him dressed, fed and ready for the bus, most of which cannot be done easily because of the necessity of hands-on assist to Calvin.  But I need to see Mom, and I always plan the trip thinking it might be the last time I'll set my eyes upon her, or any semblance of her.

On the phone the other day she wasn't as peppy and upbeat as usual. I wonder why one day is different than another, but then I realize that is the way of the world and why should Alzheimer's be any different. She asked me where I was and when I'd be coming to visit. I told her—again—that I lived in Maine with my husband and child and that I'd be coming to visit her in the spring. Then she piped up a bit.

"Oh, that'd be superduper!" she exclaimed, "I can hardly hope to meet you!"
"Me too, mom, we'll do a lot of fun things together. How does that sound?"
"That sounds grrreat!" she replied.
"What kind of things would you like to do when I'm there, Mom?"
"Oh, I haven't even thought about it."
"Would you like to go out to lunch?"
"You betcha!" she exclaimed (her most favorite reply) then added, "Get here quick, Hon."
"Why?" I asked, with some concern, maybe reading too much into her request.
"Because I love you," she said, and my heart skipped a beat.

And so, in the face of loosing one of Calvin's best nurses ever to a better paying job, I'll have to wrangle up another one somehow so I can leave my boys behind without risk of driving Michael into the ground, without breaking his back or his spirit or his great sense of calm caring for our crazy nine-year-old kid who can't do anything for himself. Then I'll sail away to California to help take care of my mom to some extent, to hold her hand on long walks, manage a few of her meals so she doesn't eat to fast or devour the salt and sugar packets on the table, help her in the bathroom, sleep in her bedroom a couple of nights to give my brother a break, and get up with her several times when she wakes and needs to go to the bathroom. So much like caring for Calvin, I think.

And though it likely won't happen again, I think to myself and smile, if I could just get Calvin and Mom together, I know they'd be two lovely, silly peas in a pod.

March 2012

the wisdom i see in 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

Read the entire preface here.

photo by Michael Kolster

shit happens part deux

Often I wonder what difficulties parents of ordinary kids Calvin’s age grapple with on any given day. Perhaps they wrestle with lying, or bullying, or stubbornness, greed, mischievousness, sloth, argumentativeness, apathy. I started thinking about it when Michael and I were struggling with Calvin while changing his dirty diaper.

He’d had what we call a blowout ... and it was massive. We were headed home from a Sunday drive when the shit hit the fan, so to speak. It wasn’t hard to tell from the thick aroma filling the car—along with Calvin’s writhing mania—that we were in for some trouble. It soon became clear that the lava had flowed up and out the back of his diaper and onto the car seat. Somehow Michael managed to get him upstairs unscathed. But changing the diaper of a wiry, shrieking, three-and-a-half foot imp who is spazzing and flapping and tensing and trying to grab his poop-covered wienerschnitzel all at the same time is not easy. So Michael took the helm, held his arms fast and lifted his legs while I began swabbing the poop deck. But there was so much crap everywhere that we realized we’d have to hose him down in the shower.

After the water draining off of Calvin’s body ran clear we dressed him and tossed his soiled clothing into the laundry. When the cycle finished I transferred it to the dryer and found a few soaking turd-stained peanut halves in the bottom of the basin. I fished out the nasty nuts with a plastic bag and tossed them into the garbage. When I told Michael what I’d found he asked me, “Did you eat them?” to which I replied, “No, but Rudy might’ve,” knowing that one of Rudy’s favorite treats is cat dung.

And though we might not have to battle a naughty or misbehaved kid I imagine we are going to have to struggle with Calvin’s dirty diapers for a number of more years—perhaps forever—if he doesn’t begin to make more progress, learn faster, develop further. And a lot of that depends upon how many seizures he has and how many drugs he must continue to take in an effort to keep them at bay. Needless to say, that shit sure stinks.

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Just so you know, that's a chocolate donut

you've been served

Written by Tracy Dixon Salazar, Savannah's mom

When your child turns 18, most people think about things like "hey, you're an adult now," and "have you registered to vote?" and "why don't you get a job?" But not us. That would be way too conventional. No, we get to think about something called conservatorship. If you're not familiar with this loaded little word, let me acquaint you.

A conservatorship is the process where you either get to pay a lawyer lots-o-money to draft exactly fifty-six legal documents for you (or if you don't have lots-o-money, you get to figure out how to fill out these documents yourself in a painstaking process that involves at least five pounds of weight gain due to stress eating.) The purpose of these exactly fifty-six legal documents is—without sugar-coating it at all—to take away Savannah's rights and give them to someone of "normal" IQ (namely us, her parents, although the IQ thing might be debatable) in an effort to protect her from being taken advantage of by the slimeballs of the world. The seven rights being taken from her include the right to sign a contract, to consent to marry, to choose her residence, to keep her private records private, to consent to sex (betcha didn't know that was a right that could be taken away from you, huh?) and stuff like that. If that doesn't say happy 18th birthday, you're an adult now, then I don't know what does!

So as you can imagine, having to file for conservatorship is about as much fun as dental work or IRS audits. And all kidding aside, it represents just one more blow delivered to us by the scourge that is epilepsy. Your daughter lived to be 18, yay. Now you get to take away her rights. I feel like one of those inflatable punching bags they sell for kids that get punched and pop back upright. Epilepsy throws the punches, and we pop back upright . . . eventually. Thank goodness we have Savannah in all of this or we'd be insane.

In the process of filing for conservatorship, Savannah had to be served with the court paperwork in case she wanted to protest. So we had our good friend Nancy serve Savannah the paperwork. And in true, beautiful, loving Savannah form, she smiled, hugged Nancy, said "thank you," never opened the letter at all, and proceeded to sleep with the letter hugged tightly in her arms that night. So as always, I have this great memory of my sweet, sweet daughter that will always overshadow anything sad about the whole conservatorship process. She keeps me smiling. Thanks Savannah. Now go get a job.  :)

Please share this story to help bring us one step closer to a cure for epilepsy.
Savannah Smiles (despite epilepsy)
Give: http://www.calvinscure.com

Savannah is now 18 and has had over 25,000 seizures since she was two. Her mother got a PHd in neurobiology and is trying to find a cure for epilepsy.

two big babies

On the end of the phone a man’s stern voice asks, “who’s this?” I reply, knowing it’s my brother Matt, “who’s THIS?” Then he tells me that I should identify myself, so I say that I’m his worst nightmare. “Nope, my worst nightmare is a dirty diaper,” he quips, meaning our mother’s.

He went on to tell me, with a half-pathetic chuckle in his voice, that he found shit in Mom’s bathroom sink the other night, that she’d tried to stuff it down the drain. After the initial amusement, all I could say was a pitiful, “Oh, Matt.”

It seems that Mom had a bit of a setback—if you can call it that considering Alzheimer’s is a progressive disease—since returning home from a holiday trip with my sister to visit my brother Scott and his family in Tucson. “Day after she came back she couldn’t get out of the bed,” he added. My heart sunk and I could feel soft furrows gathering in my brow. He suggested I come for a visit within the next several months while she still has traces of decent cognitive and physical function.

I spoke with my mom on the phone the next day. With some coaxing she remembered my name. Her voice was lower—slower than usual—when I asked her how she was feeling, to which she said fine. “What’s the weather like, Mom?” Stumbling over her words, she said something like, “I can’t tell because they aren’t there.” I figured she must have meant the windows. “What’s not there, Mom?” to which she answered, “The lions.” I’d noticed recently that she’s been having more difficulty describing things, but now it appears as though real confusion is setting in.

Matt and I had compared caregiver notes. I told him that Calvin could walk, by himself, up the stairs holding the banister, though slowly, not consistently and not without a spotter since he falls so frequently. Matt seemed impressed. He described how he and his wife Stacey had installed some railings in their home for Mom’s safety, but that within a year she might be in a wheelchair. “Calvin’s goin’ up while Mom’s goin’ down,” he said. They’re like two big babies, I thought. We feed and clothe them, help them walk around to keep them fit, help them into their jammies, tuck them in and kiss them goodnight. I told Matt I loved him and thanked him for taking care of mom, and that I wished there was something I could do to help. He offered that he couldn’t help me with Calvin either, then added something like, “You should thank Stacey because she’s a goddamn saint for what she does and has to put up with,” and, because of Calvin, I know what he means. At least I think I do.

I thought about the novel Times Arrow by Martin Amis in which life’s trajectory is backwards, the main character getting younger with each passing year—not unlike Benjamin Button—and eventually dying when he enters his mother’s womb. Yep, Mom’s on her way back to the womb of the earth, I think. I hope, at a certain point, she goes there fast.

Mom used to talk a lot about how she didn’t want to live once she started forgetting things, people. I hope to hell she doesn’t have to suffer a prolonged period of confusion and unhappiness. I thought about the autumn of 2010 when my sister and I took her on an Alaskan cruise. She’d snuck to the bathroom in the middle of the night, somehow avoiding the booby-trapped scarf and umbrella we’d rigged to wake us up in this event. She had clogged the toilet requiring the plumber to visit our room at two in the morning. Mom, in utter shame, whispered to Caron, “I just want to die,” then luckily proceeded to forget all about it.

Just after I got off the phone with my mom, Calvin’s bus pulled up. Cindie, his driver, asked how I was doing, noting my sorrowful face. I mentioned my mom and how she’s deteriorating. Idling the big empty bus at the curb, Cindie told me that her mom suffers from Alzheimer’s, too. I shouted over the diesel engine that I hope my mom goes quickly, just like she’d always wished, and that (gesturing) maybe I’d need to give her a swift kick in the butt off of some cliff one day to save her from the misery she has always dreaded. Cindie said something like, “Let me know when, I’ll bring my mom and we’ll do a twofer.” “Yeah,” I said, “like Thelma and Lousie,” and we both laughed miserably, blew each other kisses and she sailed off down the street.

get busy living

I was reminded of a saying the other day that I like a lot: “Get busy living or get busy dying.” Hearing it made me think about my parents and how they taught me, through their actions as much as through their words, to be productive, keep busy, make the most of my time, of this life.

When we were kids and were old enough to work my father gave us a choice, “you can get a job, do a sport or work in the yard.” Somehow we got roped into all three. I have to say that, though I pretty much detested weeding and gathering fir cones off the gravel driveway and hand clipping the grass around the swing set posts and trees, and though I loathed going to swim practice knowing the pain and suffering I faced, and though I might have preferred hanging out with my buddies instead of going to work, I followed the example that my parents set for me because I knew they were right, they made sense—they were no slackers, and I didn't want to be one either.

The six of us kids didn’t get an allowance, we were just expected to pitch in and earn our keep, which, once my father explained it to me, made a lot of sense. At a young age I learned that hard work paid off and when I turned eleven I bought my first bike, a sleek sparkly blue Peugeot ten-speed. It cost me $118, way back in 1974, purchased with money I had scraped together from babysitting for a wage less than a dollar an hour. When I was fifteen I got my lifeguard certification and completed a course to teach swimming lessons. I put myself through college, with minimal help from my dad, by lifeguarding, teaching and coaching swimming. I’m very proud of that. I know my parents were, too.

So now I am the parent, and as Calvin’s mom my job has become physical therapist, occupational therapist, speech therapist, nurse, epilepsy advocate and blogger. And though these jobs are all-consuming, and though I have the help of my husband and a part-time nurse, I still find myself yearning for more hours in the day to do all the things I want to like gardening, walking Rudy the dog on the beach, being with my husband, writing more, reading, hanging out with friends and talking with my long-distance loved ones on the phone. But I do as good a job as any at packing in as much of it all as I can. And it goes almost without saying that Calvin is a workhorse just like his mom, his dad and his grandparents.

I remember once, when I must have been in junior high school, asking my mom if she was mature. She told me that as long as you live—and if you want to—you keep growing and maturing and learning new things. So I want to do it right, make the most of this life—not sit on my butt like some couch potato—improve myself. Otherwise I may just as well get busy dying.

eye on the ball

If you’ve ever tried running a three-legged race you might have a bit of insight into what it’s like going about my day with Calvin. He and I are like a Siamese twins. Although we are not joined at the hip, we might as well be, tethered to each other the way we are all throughout the day.

Since Calvin, who is seven, cannot walk by himself without the risk of tripping and knocking his teeth out, running into corners and walls with his forehead or falling down stairs, I’ve got to keep my hands on him, or his harness reins, at all times. If I try to do two things at once, like pour myself a glass of water or hang up my coat, I risk dropping him if he tips off balance when I'm not ready. I’ve got to keep my eye on the ball, so to speak, like my dad used to tell me when teaching me how to catch a ball or how to swing a racket or bat.

I remember when a close friend came to our home for a visit. He arrived out of sorts. He went on to explain that the neighbor’s child, while holding his infant son in her arms, had accidentally dropped him onto the paved driveway. The baby had been squirming and simply got away. At the time, even though I could see his grave concern over the incident—his sickly expression at recounting the event—I couldn’t quite imagine what was so upsetting, because I had no children of my own. The fall was only a couple feet, after all.

Now, I know all too well what a tumble like that can mean, especially for Calvin since he's getting bigger. Taking my eyes off of him for one second can result in a bad fall. Years ago, when he was much smaller, while two of his nurses were chatting together, Calvin between them just at their feet trying to stand up, he suffered a bloody, swollen nose when he unexpectedly pitched forward, neither of them holding him, and slammed his face into the floor.

Luckily, Calvin’s bad falls are few and far between and it is because we—Michael, the nurse and I, and his one-on-one at school—are on constant alert, our focus being on Calvin's safety, and little to nothing else, as he motors around the house like a little drunken sailor sporting a bobblehead. And all the while my dad's voice is ringing through my brain, "keep your eye on the ball."

monotony

My sister-in-law called me a couple of weeks ago, as she does on occasion, just to check in and see how we’re doing. She asked after Calvin and I told her he seemed to be having only slightly fewer seizures but, all in all, was doing pretty well. I went on to say that, although Calvin is generally happy—easily brought to euphoric giggles and grins when we nuzzle our faces into his neck, press our lips to his cheeks, wrap our arms tightly around him—that once in a great while when I'm running low on steam—and I know this might sound crass—I feel raising him is in ways like raising a farm animal or a dog: you feed them, you tend to them when they are sick, you clean up after their messes, you make sure they get regular exercise—you know, take them out for walks—and, although they might understand a few simple commands, you can’t bring them anywhere.

She listened intently. I continued, adding that although I have long since given up any grave concern over his missed milestones—Calvin’s developmental gap ever widening with each passing year as he continues to engage in the same activities with nearly the identical skill as he did when he was two or three—that I experience limited joy in the daily life of raising Calvin. Our days are monotony punctuated with a sprinkle of warm cozy snuggles for which I am incredibly thankful.

The only thing that came out of my sister-in-law’s mouth was, “I’m sorry.” I couldn’t have asked for a better gift from her. She didn’t try to tell me things would get better. She didn’t persuade me to look at the bright side. She didn’t try to say it wasn’t so. She didn’t exclaim, “everything happens for a reason.” She simply listened and said she was sorry. In doing so she totally validated my regret, and I am completely grateful, for I knew she understood that my love for Calvin runs deep and solid as an aquifer—that the two feelings of mine could rightfully, naturally coexist.

We finished our conversation with I love yous. I hung up the phone and went back to preparing Calvin’s dinner, drew up his pink liquid medicine in a syringe, cut his pills and began feeding him. I cleaned him up, brushed his teeth then Michael took over the nightly routine of walking Calvin’s burps out before changing his diaper and putting him to bed. I poured myself a glass of wine and with it I retreated to my garden sanctuary hoping to bring back some semblance of self, while waiting anxiously for Michael to join me.

Tomorrow will likely be another day just like today, just like yesterday ... and the day before that ... and the day before that. But as I reread what I have written, I realize that perhaps, in the same way I push Calvin to step outside of his comfort zone in order to make strides, I need to do more of the same myself in an effort to put an end to the monotony. Or just dive into a few more tickle-fests than usual.

wearing robes

Though my boy usually wakes between five and five-thirty, some days Calvin and I unabashedly stay in our robes until nine or ten o’clock, like today.

Mornings Calvin usually enjoys spinning in his industrial strength johnny-jump-up and so I try to take advantage of this time to get some things done while my hands are free from their otherwise constant tether to him.

I finish my coffee. I write. I read and answer emails. I do things that allow me to keep an eye on him like rinse dishes, empty the dishwasher, and eat breakfast. Today I began recalculating his meals, called for refills on a few of his six medications and special ordered his special yogurt. Often I research new epilepsy treatments, call his dietitian, his doctors, his nurse, and fold laundry. Sometimes, though not often enough, I vacuum or sweep. Rarely, I read the news.

So when the rest of the world is off to work or to the farmer's market or perhaps embarking on the day's fishing expedition, we're still handsomely clad in our fleece.

Who has time to get dressed?

photo by Michael Kolster