lose one's life

One must lose one's own life in order to find it.

—Anne Morrow Lindbergh

photo by Michael Kolster

tsunamis and tears

I see it coming for days. The inappropriate laughter. The poor balance. The extreme hyperactivity. The hair pulling, teeth grinding and head bonking. Three days before it arrives, in large caps I write my suspicions in the journal.

I feel his heart like a little fist pounding in his chest so hard it’s as if it’s strapped on the outside. I make a mental note (one of many). One moment his hands are icy cold, the next, hot and dry. I scoop him into his high chair and buckle him in ... then I see the fiend approaching like a monstrous tsunami just offshore—the calm before the storm.

His gaze drifts upward and to the right as if pulled by some impossible gravity, his mouth agape in an expression I can only describe as fear or dread. As the words, “here it comes,” spill over my lips it’s as if I’ve cast a spell on my boy, and he launches into the seizure. We go to the green couch, always the green couch with the tan pillow—the seizure couch—its pile of clean laundry swept onto the floor to clear a space for my boy. He is stiff and arched and pale and dusky and for a brief, stolen moment he desperately reaches for me as if to say, Mama, make it stop, but I cannot.

I lovingly coach my boy through the abyss, uncertain if he can hear me under the weight of the surf. Eventually, the color bleeds back into his face and he’s able to chirp, “Uh-uh”—Mama. When I cradle his head in my palm to receive his seizure meds I spot something I’ve never before seen: a tear. “We all have tears,” Michael says to me later. And I know that I have not shed my last one.

friday faves - adaptation

A good friend who I haven’t spoken with for a long time wrote to me recently. I think of him often and wonder what life is bringing his way. He mentioned how he wanted to talk with me but that, in reading my blog, he felt as if his problems were petty compared to what I was facing on a daily basis. I'm not sure.

If I’ve learned one thing since Calvin’s birth—and more so since his seizures began—it’s that we, as humans, are incredibly adaptive creatures. I remember, before Calvin was born, driving with Michael along a winding road on the Bolinas Ridge just north of San Francisco. The narrow road snaked through densely wooded glens broken by pristine, wide open seascapes and rolling, golden hills punctuated occasionally by gnarled oak trees. While listening to the radio, we were not only captivated by the scenic beauty, but by a story about happiness. The story described a study that had revealed findings about human adaptation. It explained how—even in grave circumstances such as incarceration or physical debilitation—after an initial adjustment phase, individuals ranked their level of happiness on par with a control group. It seems it’s well within our ability to adapt and be happy amidst less than ideal circumstances.

I will say that life with Calvin has been grave at times. It is true that grief has choked me, frustration has frazzled my nerves, nights are often sleepless and worry abrades my spirit. But, so has raising Calvin been the most uplifting and rewarding adventure of my life. To love this child—who rarely looks me in the face, who cannot express his feelings in words, whose dreams I’ll never know—and to have this child love me back, unconditionally, is to feel an emotion impossible to adequately describe, but one that brings me joy and happiness beyond measure. I believe that my life, especially since Calvin, is a reflection of nature in its ability to adapt and find ultimate balance—a path not unlike the meandering road with its dark, obscure hollows juxtaposed with bright expansive heights.

So, too, has the strain of raising Calvin heightened my sensitivity to the burden of others. I imagine that floating down a raging river through coarse, magnificent rapids might feel treacherous to some, while for others, the tempered water rippling at the eddy’s edge might prove terrifying. Both realities are true. Equally, no malady is petty or shameful—none to be belittled by another—and no accomplishment is unworthy of praise. As humans, we all suffer hardships and we all celebrate triumphs, both large and small alike, and through this constant ebb and flow between despair and rapture—and because of the compassion and empathy of others—we adapt, we find balance, we persevere.

Originally published 12.05.2010.

eclipse

Often, I am humbled by stories that friends and strangers share with me of their own struggles in life, of their sick children, their grief, their despair and their catharsis. Some stories are so touching that I feel I must share them, to squeeze every last drop of their sweet juice for my readers to taste.

This was something I received a few weeks ago by a woman I went to school with, a woman I hardly know and yet someone who I feel deep fondness and affinity:

I am in tears reading your post, as I often am. I cannot pretend to comprehend the difficulties you have faced and will continue to face minute by minute, day by day. But I have some understanding of being lost in the sea of despair and at least in that regard you are not alone.
 
She shared with me some dour news about her child and went on to say:

The grief has been overwhelming and consuming. It's like a sinkhole that opens up and swallows you whole when you least expect it ... I am hopeful she will continue to improve and will find the right medication that will allow her to resume her life and find some peace.
 
In the meantime I have decided to view this as an eclipse. The sun is still out there shining, what we are experiencing is a temporary loss of light. I try so very hard to hold onto that thought until the sinkhole opens up again and I descend into grief.  

Then she signed off with the most loving words—words that I want to tell everyone out there who is struggling:

Sending you love and much light.

photo by Todd Olmstead

seti and me

I see my face
in hers and sink into
her familiar form
How many years gone by
I can’t say

She naps on
warm terracotta tiles
The slim bend of her elbow
shading closed
brown eyes

Mom seems
to recall her face
even after all these years
Then, smiling, reaches up to 

pull her in

Like a dream
the hours pass
We hold hands, walk arm in arm
laugh until we cry
Embrace

Cool drinks
chase spicy wings
the sun dissolving behind
clouds and masts in a
glass pool

A steel horn
silk voices, strings and drums
feed our hungry souls
move lithe bodies
sweat and burn

Bellies up
to a granite bar
like in olden days
Hot espresso, bitter chocolate, comedy
Reminiscence

She asks
after my boy
Was she the one who told me tenderly
that he is a

gift?

In bed
our toes touch
We talk and jest about forgotten boys
then fall asleep saying
I love you

my dear friend Seti and my mom

be aware and share (video)

Sitting on the plane home from San Diego today—next to a woman with epilepsy—I am reminded that it is international epilepsy awareness day. Awareness is the first step towards funding for critical research. Epilepsy is not a benign condition where you take a pill and everything is okay. Three million Americans—many of them children like Calvin—and their families suffer from epilepsy. One in twenty-six Americans will be diagnosed with epilepsy within their lifetime. Statistics for the rest of the world vary with the most numerous and often severe cases existing in developing nations where treatment is difficult and costly to obtain.

This video may be difficult for some to watch, though important for understanding the true nature of this heinous, pervasive, misunderstood, neglected disorder.

Ask yourself, what if this were my child?

Please share.

farewell san diego

        Farewell San Diego. It's been fun. Until next time. xoxo

more beautiful things

california. star jasmine and mock orange bouquets. mom. eucalyptus trees. chocolates on a bed stand. succulents. heart-shaped foam on a latte. big sky. hills. beaches. holding hands. shake smiles. salty breeze. birds, birds, birds. city lights. camellias. river stones. wine-stained corks. orchids. my husband’s voice. fluffy pillows. palm trees. thoughts of calvin. crab sandwiches with louis sauce. big fat juicy parking spaces. girlfriends.

the shake gals

crossings

Yesterday, I took mom to lunch at one of our favorite places in San Diego, Point Loma Seafood. We sat outside in the wind with our backs to the sun eating crab sandwiches. At neighboring tables sat young and old, black and white, Latino and Asian, a delight to which I took a deep breath and satisfyingly sighed. When we finished eating we lingered, my arm around her shoulder, our foreheads tipping in to touch as I secretly ached for my dad. 

I glanced up at a woman seated facing us with her young son, a woman who earlier I'd seen taking video of the sights. She asked me, politely pointing, if I was with my mother. I said yes and held up my fingers gesturing Mom's age of eighty-three. She smiled warmly and I could tell that she was touched by our image.

A few moments later she approached and asked if she could take our photograph. I happily obliged. She took some video, too, so Mom and I waved into her camera. When she told us to smile a warmth washed over me and my eyes began to tear. As she stood at our table I asked if she was visiting and from where. "China," she said, and she wondered if I'd ever been there. "Hong Kong, for work," I replied, then explained that I lived in San Francisco for ten years where I joined my Chinese friends and colleagues for dim sum every week. I lamented missing that.

She told us that they'd been up to San Francisco where her son had had surgery and that they'd be returning for some follow-up visits. "Maybe we will meet here again," she said, to which I mentioned living in Maine where there is still snow on the ground. I asked her name and in a mild voice she said, "Call me Susan," then I gave her a business card and told her a little about Calvin, a little about epilepsy and a little about the blog. Her handsome husband emerged to take more photographs. Susan jumped in between us and, with her arms draped on our shoulders, I held her hand and began to cry. When she noticed she tenderly said, "oh," and leaned in to give me a hug. These brief crossings, (and I've had many throughout my life), fill my heart and soul, often at times when I feel somewhat empty.

As we parted I encouraged Susan to contact me, and as she walked away with her family, we wished each other good luck with compassionate gazes. I hope to hear from her. And even though our encounter was no more than about fifteen minutes, I know that she is my friend and I hope, one day, to learn her Chinese name.

my new friend, Susan

friday faves - sweet delights

As a little kid, when I wasn’t doing chores, I spent a lot of time just hanging at home, alone in my room drawing, or loitering in the kitchen with my mom while she cooked. My five older siblings were either swimming their brains out, cavorting with friends or at jobs while my dad was at work.

On rainy days I’d sit at the bar in our kitchen and eye my mother beneath glass-enclosed cabinets as she flitted around the space, her plump form draped in a cotton apron tied over a patchwork-printed blouse. Endless muzak streamed from a faux wood box radio perched on top of the refrigerator. I half liked listening to it.

Mom showed me how to bake—cakes, cookies, bread, pies—you name it. Flour and sugar lived side by side in a deep divided drawer, beat up aluminum measuring cups half buried in the white mounds. She used a wooden spoon to stir batters and doughs in shiny wide-mouthed mixing bowls. I loved the dull din of moistened wood on metal and its gritty, sugary scrape against rounded sides.

With no exception my mom let me lick the bowl. She was sweet, always leaving ample chunks of sticky, buttery clumps of dough or wide silky swaths of batter. She seemed to enjoy seeing me delight in the goodies, though she was less happy with the eight cavities I soon developed.

Savory-sweet aromas filled my nostrils as she plucked the confections from the oven into thick quilted mitts. My mother wrapped her arms around my elfin frame, mine around her soft middle as raindrops pattered on the shingles of our cozy ranch style home. We lingered.

It’d be fun to show Calvin how to bake, to reserve a gooey treasure for him to lick clean, to see his eyes, large as moons, and his impish grin as he buries his face deep into a bowl emerging with a chocolaty smudge on the tip of his nose.

Perhaps in another lifetime.

on a jet plane

Curbside, I kissed Michael goodbye. I’d be back in a week and my nose stung thinking of how much I’d miss my boys—Calvin, Michael, Rudy the dog.

At the Jetport a woman’s habitual hacking cough unnerved me. A tiny baby in his mother’s arms cried, “Mama,” and I thought of how Calvin only said that once. I flew Portland to DC where I made sure to thank the man in dreads and an orange and silver vest for unloading the bags. He thanked me with a big, broad smile while other, serious passengers filed on past grabbing their gear and rushing on. 

On the flight to San Diego I sat in a window seat too cramped to open my laptop completely. I ate a dry Thai Chicken wrap that cost me nine dollars and I dripped Asian aioli on my lap from a little, shiny black plastic pouch. For five hours I read a bit, wrote a bit, snoozed a bit, watched bits of films without sound and tried not to think of the movie Flight that we’d seen over the weekend.

Once in San Diego I rented a car using new technology—a kiosk with a live agent assisting me on the other end of a phone line. I scanned and swiped my credit card and license and within minutes I was driving away in a blue Jetta. They must have given me an upgrade.

When I pulled into my brother’s drive I smelled the sweet scent of mock orange. It reminded me of the star jasmine that blooms seemingly forever in San Francisco. The air was slightly damp and on it I could taste sea salt from the harbor down the hill. This is enough to want to move back to California, I thought, the seduction of California’s early spring fragrances so very hard to resist. And to think some hours before I’d left behind eight inches of heavy snow on sagging branches.

I woke again to barking seals, as I did in September, a sound I seem to always mistake for Calvin’s seizure cries, confused as to where I am. Later, a flock of green parakeets soared past and woke me again, then realizing I am three thousand miles away from what is now my home, away from my wonderful boys.

But, in a few hours when she wakes up, I’ll be seeing my mother. We'll hug and kiss and take long walks in the warm California sun.

photo by Michael Kolster

never give up

Never give up on something that you can't go a day without thinking about.

—Winston Churchill

Calvin at two months, photo by Michael Kolster

suspicious

Raking makes my arms and shoulders ache. I drag flat oak leaves through copper needles, comb the frosty grass over little pools of ice and scant clumps of frozen dung. I dream of spring. But we’re getting another foot of snow.

Inside, Calvin kicks and flails in the bath. He’s been napping with eyes half-mast—never a good sign. For the fourth day in a row I pen in the journal my suspicions of an impending seizure:

HYPER IN BATH—SUSPICIOUS
staring at sun. stubborn. SUSPICIOUS OF IMPENDING SEIZURE
more suspicious craziness. GRINDING TEETH. slight runny nose.
VERY GOOD DAY (SUSPICIOUSLY GOOD) slight runny nose.

From the second floor the nurse’s voice tumbles down the stairs, “Christy!” I drop the bowls of Calvin’s dinner onto the counter and run. He’s on his side atop the changing table, pajama pants around his thighs. Cool evening light floods the window, spills onto the walls and onto Calvin's shivering form. It’s clear to see his blue ear, his blue hand, his flushed cheeks and blue lips. As he convulses his gut squeaks and gurgles. He clicks and croaks and rasps. We kiss him. We coax him to breathe, to come back.

The nurse calls off the minutes as they pass. She reaches four. He’s still not out—not completely. Daddy kisses Calvin's cheek and rubs his palms. At the other end I shield his trembling shins and feet from knocking on the table's steel bar. “When it’s over he usually tries to sit up,” I say, and then he does, and we watch the world come back into his eyes, into the little chirps of his voice.

From oblivion he opens his mouth for nine and a half pills with yogurt. He closes his eyes for a good part of the night. I wonder if he dreams.

sick kids

Not too long ago, a friend lovingly and candidly confided in me about dealing with some "snarly emotions and the strong desire to just get away" from her sick kid. As I read her words it was as if they were streaming from my own lips, and I cried with the knowledge that I wasn't the only mother—parent—who had had such feelings. Her words have allowed me to forgive myself. I imagine her message to be helpful to any parent, and so I asked her if I could share her insights. She agreed, and this is what she wrote:

Although my little guy was sick for only a few years, it wore on me in ways I did not really appreciate or acknowledge at the time. I didn't know he was sick (duh! it's so obvious now!), but even after I did, I simply was not always my best self. A euphemism for "I was sometimes a horribly scary person."

It's been [some] years. I haven't really thought back on all of the expectations I had for myself as a parent, and the ways I disappointed and even shocked myself, repeatedly. I can now see myself with some compassion, if not quite forgiveness, but the fact that I judged myself so harshly then made everything harder. I lost my temper, sometimes I threw things, sometimes I walked away virtually screaming in frustration. I said things I did not mean. I hardened my hands and handled him and me and the world unkindly out of sheer frustration. That became part of an unending cycle some days. I can't explain it, but I naturally judged my behavior, and then hating myself sort of tied into behaving in ways I hated even more. It didn't have to be abuse to be bad.

Maybe this was just my thing. I don't know, and I hope you will forgive me if I've assumed that you have ever felt these things, or behaved in anger, but it was and sort of still is my own secret shame. I simply could not always be loving. Sometimes, I could not even be nice.

I had no partner who either understood or cared to see what it did to me, but I know that that would not have been some magic balm. I was exhausted at all times, I hated my life sometimes. I hated the choices I was having to make in deference to a child whose needs I could not meet or even comprehend, then I hated myself for being selfish, and wanting something different. I hated that I could not change things that I wanted to change, including, or maybe mostly, myself.

My stuff with [my child] was different and quite finite compared to yours with Calvin. I know that. People would sometimes try to be understanding and give advice about what they thought was going on with [my child], and I'd want to scream "YOU DON'T GET THIS! IT IS NOT LIKE YOUR PERSONAL HISTORY!"

I—obviously—don't get your life, because it's not mine. Maybe you cope better, or differently, with the stress of demands you can't quite meet. For me, the part I remember, all too well, is what it felt like to lose it in the presence of my beloved child, whose needs could consume ALL OF ME when I had nothing in there to give, and desperately needing just a weenie teeny bit for myself every now and then, and then beating myself up for not being the saintly super mama, and repeating...

From my perch here ... I salute you, and however you cope. I'd do it with a margarita, but don't have them around nearly enough. And it's early.

I guess I just hope you do not hate yourself the way I did for being human. I hope you are finding compassion for yourself that I just couldn't, and get and take and wrestle the time every now and then to recover a bit from the unceasing demands of a needy child. And I hope you will let me know if there is anything I can do that helps in the day to day. I never asked for help, and I didn't take it when it was offered, and in retrospect that was falsely noble and horribly stupid of me ... I'm offering and you should ask if you ever need a hand. Or a margarita.

my sick kid

mindfulness

When mindfulness is there you are attentive to yourself, you are attentive to other people around you and understanding becomes possible, compassion becomes possible.

- Buddhist Monk Thich Nhat Hanh

photo by Michael Kolster

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.

friday faves - pain and inspiration

My brother Scott is a world-class Master’s swimmer. He’s in his early fifties still swimming times nearly as good—if not better in some cases—as he did in College. Scott has competed in countless Master’s Nationals and over the years he’s broken a few world records in his age group.

Our dad was an athlete in his own right, running a 4:28 mile at the Naval Academy back in 1948. He was adept at hurling a javelin with the innate grace of his lithe animal self—a six foot four inch, one hundred and seventy pound gazelle. As a family man my dad continued to run for exercise and the sheer joy of it. Along the way he’d stash roadside aluminum cans in plastic bags and donate the proceeds to my swim team. He lifted weights and repeated hundreds of crunches, sit-ups and push-ups—the only bald-headed old dude I’ve ever seen with a washboard stomach.

Tragically, my dad developed cancer at the age of sixty-five. I don't recall him ever being sick until then. Several courses of toxic chemotherapy for multiple myeloma, a type of blood cancer, took its toll on him. I remember my mom describing the time he had to give a bone marrow sample. My dad denied anesthesia when the doctor bore a hole deep into his hipbone to extract a core. My mother said his clothes were completely drenched in sweat from the immense pain, but that he had remained silent and stoic throughout the procedure.

At one Master’s Nationals, when my father was still alive, my brother won his best event, the two-hundred backstroke. He received a gold medal, dangling from a wide red white and blue satin ribbon. He sent it to my father in a velvet-lined case along with a hand written letter on ruled yellow paper. I remember reading it and weeping. Scott described the event, my father not having been able to attend the swim meet. He spoke of slightly trailing his opponent, his muscles and lungs burning. He wrote how he worked through the pain thinking of the unimaginable agony my dad was suffering from the cancer, the chemo. He focused on that image and nothing else, just being one with the blazing pain, but for my dad. My brother poured it on in the last lap, his adrenaline taking him hard to the finish, muscles on fire, shredding, fatiguing. He won the race.

My brother has always been a great inspiration to me. He’s helped me win races, swim my fastest times, break plateaus. I often think of that letter he wrote to my dad, and of my dad’s suffering. Both of these men, through example rather than advice, have inspired me to work through the pain and suffering in my own life, and now in my life with Calvin. I only wish I could share that same magnificent influence with my own son ... and with others.

Originally published 05.02.11.

caged animals

Some days I feel like a caged animal. You know, the crazed ones who pace back and forth for what seems like hours at a time, retracing the steps they've only just made, getting nowhere. They're just like Calvin and I at home in winter and on rainy days, or perhaps we're like them, but no matter.

We begin at the top of the stairs, which he tries to bite then he drools his drug drool all the way down them, little hands tightly grasping the banister as I grasp his harness in mine. At the landing he regards the stairs he's just come down, admiring the stripes made by the contrasting white risers and tan wooden steps. We round the corner and he leans forward to look at them from a different angle, then steps down into the entryway and stomps pigeon-toed into the sitting room where he bangs three boxes of greeting cards that sit precariously atop a small green table. After toppling at least one of the boxes he makes a beeline toward Michael's guitar. There, he rubs his palms over the strings while trying to bite the guitar stand before turning to bang the hell out of a painted metal table on which everything rattles like the eyeballs in my head. Then we move on to the next bookcase, which is in decent shape except for some milky splotches where Calvin's drool has ruined the finish. I quickly usher him along. He bangs the wall below Michael's photo of Calvin's striped urine test strips, a relic from the Ketogenic diet days, then, as he swipes his hands down the length of another bookcase I secure the candles, the fruit bowl and any other objects that might easily be dislodged. With some caution, Calvin descends into the sunken living room, relying on his sense of touch by gingerly dipping his foot over the first step as if testing water. He lacks any depth perception and thus has likely developed a bionic sense of touch. In the living room he crouches to study the pattern on the wool rug, sometimes hovering there, sometimes going down on all fours with a squeal. From there he heads to the library chair, with which he has banged a black mark into the wall behind its back. After a few pats on the French doors, perhaps a little drool on the glass, we retrace our steps before veering off into the kitchen. He comes dangerously close to the corner of the butcher block then teeters into the mudroom bathroom where he bangs the shit out of the shutters, which are scarred and whittled from years of abuse by the little beaver. Shutters done, it's back into the kitchen then around the corner into the entryway banging walls now adorned with little handprints yea high. We mount the stairs then dawdle up them as if we've got all the time in the world (sometimes with dread I think we do.) Calvin's head tilts left with each step up, then to the right in a passionate effort to bite the banister.

And within the next few minutes, after a tickle-fest in the bedroom, a diaper change and several attempts by Calvin to take a bath hours before it's time, we begin at the top of the stairs where we start the vicious cycle all over, like the demented caged animals we've most certainly become—Calvin a beaver, and me? I think I must be an ass.

to survive

I’ve recently gotten in touch with an old friend of the family. She had read Calvin’s story and reached out and told me about her own extraordinary son who has autism. She wrote:

“When he was first diagnosed at 3 years old, after he lost all of his language and stopped responding to his name, I cried every day for at least a year.”

I’ve been there, in some parallel universe, drowning in my own grief over my child’s messed up brain, his compromised health. Why him? Why me? But then again, why not me?

For three years, one day every week I’d walk across the tree-lined college campus, or drive through slush and ice to a big old pumpkin-colored house. At the top of a steep carpeted staircase I entered a cozy office and closed the door behind me. For fifty-minute sessions I sunk deep into a soft chair, my therapist’s kind face looking quietly and intently into mine.

Like all days, I surrendered to my despair as sheets of tears salted my cheeks, my voice trembling, sometimes words refusing to obey my mouth, halting all together in the tightening of my throat. Sometimes I thought I saw her leash her own motherly tears. Just by listening, and somehow understanding, she totally validated my sorrow—every day. She helped me so.

To survive I took things, not day by day like now, but hour by hour, minute by minute. Sometimes it’s all I can do, the immensity and weight of this colossal vertical precipice casting an infinite shadow over me from which I cannot escape. Everything is a reminder—Calvin’s screwed up brain but perfect body, his constant escape from my gaze, his screams, his poor balance, the mountains of medicines we must pour into his little body, his relentless seizures, his wordlessness.

But, I am not alone. I am only one of millions who have lost some part of themselves in a sea of despair over their children. But we buoy each other, we link arms and carry each other on the breeze. We understand each other.

Our children become what they will be, and in part because of us. Our children validate our sorrow and bring us immense joy all at the same time. Our children—they are extraordinary—and it is for them that we survive.

Originally published 05.09.11.

photo by Michael Kolster

simplicity

Manifest plainness,
Embrace simplicity,
Reduce selfishness,
Have few desires.

―Lao Tzu

photo by Michael Kolster

if it's not one thing it's another

now he has rashes. are drugs the culprit? the banzel, the keppra, the nystatin? is he burning or itching or in pain? they’re on his face and his groin and i look at internet images of hives and steven’s johnson syndrome (nystatin can cause them both) and am horrified. he coughs and gags and whines and writhes and kicks. is it the rashes? is it the pdd-nos? is it nausea or indigestion or reflux? can it be a looming seizure? or the reduction in his banzel? or his growth spurt requiring a bigger fix of clobazam? is he suffering some sort of withdrawal? is he hungry or thirsty or full or constipated or crampy or bored or frustrated or all of the above? he’s back at poking his eye and grinding his teeth. in the bath last night he was a raving lunatic. flapping and flailing in a frenzy of bony knees and ankles and elbows knocking porcelain until his joints were marked and red. thankfully the padded helmet protects his head ... so far. his hyper coughing sends me through the roof. i don’t like what i’ve become. i am wretched, and—of late—regrettably more familiar with this miserable countenance. michael is so patient and understanding, helps me feel myself again, helps me smile, helps me live in the moment and get through the next, of which i most surely dread.

still shot

more things i love and not so much

things i love:

husband. sunshine. bourbon on the rocks. grass. dove chocolate. gettin’ down with my bad self. long walks. matinees. beaches. fires in the stove. mom. uninterrupted sleep. the pres. thrift store shopping. friendships. government investments in education and infrastructure. dinner out. michael’s cooking. ann’s cake. 7:00 pm. diversity. daylight savings time. birdie sounds. altruism. california. bowdoin chapel bells. marriage equality. quiet house. good coffee. students. homemade granola. the diegos. calvin’s bus driver, teachers, therapists and aide. gardening. michael’s photography. spring on the way. lobster rolls. good books. people who want to help others. rudy the dog. my sweet boy calvin.

not so much:

snow in march. calvin’s incessant coughing. bullies. broken glasses ... again. tax loop holes. greed. hyper kid. bitter wind. myopia. conservativism. seizures. robocalls. toeing in. right-wing radicalism. hair pulling. capital punishment. sexism. teeth grinding. drooling. icy sidewalks. cold days. apathy. sand everywhere. austerity. the ever expanding gap between the haves and the have-nots. dusting. fear mongering. lies. these extra five pounds. bigotry. taking advantage. airlines. sequestration. antiepileptic drug side effects. worry. cabin fever. four-thirty wake up cries. war. most guns and some of their owners. ignorance. self-righteousness. endless grey skies.

photo by Michael Kolster

lydia's mom

I found myself deeply moved by a friend's comment to my blog post, my small town america. She wrote:

the contrast to my city "neighborhood" where all the children on the block go to different private schools—chauffeured each morning in (too many) cars.

barely a wave as we pass headed to our educational philosophy of choice. the homework piled on the kids who don't go to our school keeps them indoors after school. it's either that or video games, neither of which mine had until high school.

I write a note to each new family that moves in—three this year—all with kids. I introduce myself, my kids, their ages and extend and invitation to tea. I have gotten NO response. 0 for 3.

it's monday. i had the same feeling of relief this morning dropping Lydia off as you did when you saw the school bus.

but instead of a walk to exchange greetings and friendship with neighbors, I am back in my house, hunched over this computer where true friends seem to live, most of whom i have never met, face to face.

I have 3 real life friends post epilepsy apocalypse.

i used to have so many friends that my husband called it my hobby.

it turned out that it was just that, MY hobby. As soon as I no longer had the time to tend to my hobby, I realized that I was the only person in the friendship doing any work.

I might shower today. Might not.

I should go for a walk—listening to music for lack of company...but I am too depressed today.

this isolation crushes my will and need for fresh air.

i day dream about getting stoned. probably good that i stopped long ago

i even think about smoking cigarettes form time to time.

loneliness is something I never would have imagined would plague me in my late 40's. i imagined myself surrounded by friends and family.

EFF-YOU, EPILEPSY. eff-you.

—Lydia's mom

photo by Michael Kolster

friday faves - mockingbird

This is the time of year when, again, birds start gracing our presence. I’ve spied yellow and gray goldfinches drinking from the birdbath and large black crows chipping ice out if it in the early morning or dipping crusty bread into the melted water. Within the lattice of our naked burning bush I’ve spotted a male cardinal perched like some ripe crimson apple waiting to be plucked. A black and white speckled flicker taps staccato on a scaly branch just outside the window from my desk.

Yesterday, while walking Rudy on a wooded path we found ourselves surrounded by chirping sparrows and warbling catbirds—the exotic sounds of spring in Maine. These sweet songs reminded me of a favorite movie I recently watched with my sister, To Kill a Mockingbird. The classic 1962 black-and-white film stars Gregory Peck as small town attorney Atticus Finch, and is based on the novel of the same name by Harper Lee written a few years before I was born and that I’d enjoyed reading in junior high.

Gazing down at the bark trail I regarded my untucked plaid shirt and dirty jeans. I thought how, in many ways, the film’s wiry six-year-old tomboy, Scout, reminded me of myself at that age, even sharing the same pug nose, mine turned up with a permanent crease from habitually wiping it upwards with the heal of my palm. While watching Scout scamper around in her pixie haircut, denim overalls and canvas sneakers I had quietly relived my childhood days of exploring nearby woods with my brothers, climbing into their homemade tree forts, digging up old bottles and rusty treasures and playing hide-and-seek. I remembered the time my brother Scott got shot in the leg with a BB gun at close range and how I thought the silver bead looked odd embedded in his muscular thigh like a pit in peach flesh.

Partway through the film Atticus tells Scout and Jem about owning his first gun as a boy:

I remember when my daddy gave me that gun. He told me that I should never point at anything in the house and that he'd rather I shoot at tin cans in the backyard. But he said that sooner or later he supposed the temptation to go after birds would be too much and that I could shoot all the blue jays I wanted, if I could hit 'em; but to remember it was a sin to kill a mockingbird. Why? Well, I reckon because mockingbirds don't do anything but make music for us to enjoy. Don't eat people's gardens. Don't nest in the corn cribs. They don't do one thing but just sing their hearts out for us.

Somehow that scene made me think of my son Calvin. He doesn’t—can’t—get into too much trouble. Doesn’t bother other kids or pets. Doesn’t cause mischief. He just grunts and coos and giggles (and screams at times but that's the drugs) and gives us hugs and kisses and smiles and then some more hugs. Our little Calvin ... he’s like a song.

A few years back I heard part of a story on national public radio. It was about a single mother (my friend prefers the apt term “head of household”) raising a severely disabled child with the help of government funds to aid her arduous and expensive responsibility. A caller remarked on air about how much he resented his tax dollars funding what he coined “a lost cause.” His words stung and made me think about some countries that, perhaps even today, might systematically euthanize kids like Calvin or, at least, choose to let them wither and die. What makes a life valuable? I thought. Surely the caller had never known or valued—or loved—a child like the one he’d have society abandon, a child like Calvin.

In the film a kind soul had been anonymously leaving Jem gifts and trinkets in the knotted hollow of an old tree: a tarnished pocket watch, two carved soap figurines resembling Scout and Jem, a medal. That same kind soul saved the children’s lives from a menacing stalker one dark night while the two kids walked home on a wooded path. Their hero was Boo Radley, the “simple-minded” recluse neighbor who’d been secretly watching over the motherless children all their lives, keeping them safe, keeping them in his heart, secretly bestowing precious gifts upon them. Upon discovering her humble protector shyly cowering behind a door, Scout sweetly likened silent Boo—with his rumpled clothes, pekid complexion, dark sunken eyes and tussled hair—to a mockingbird.

Calvin is our mockingbird, I thought. And I hope he keeps singing for a long, long time to come.

Originally published 04.16.12.

clever and wise

Yesterday I was clever, so I wanted to change the world.
Today I am wise, so I am changing myself.

—Rumi

photo by Michael Kolster

deep inside

While walking Rudy on the path between the pines, I ran into my buddy, Stan, who is always sporting a hat and whose intense brown irises vibrate with the blue rings encircling them. We first became acquainted during his frequent walks past our house, slowly becoming friends after encountering each other here and there around town. He reads the blog and told me that he thinks of us often, thinks of Calvin all the time. He said he believes that—deep inside—Calvin is an intelligent kid.

"Have you seen the movie Superman?" Stan asks.
"Yep, I loved that film."
"This might sound way out," he continued, "but remember the part where Marlon Brandon sends his son to earth in that star capsule thing?"
"Sure," I replied.

Then Stan went on to explain how Marlon, playing the superboy's father, had instilled a bounty of knowledge into his infant son during the long journey to earth. Stan said that he thinks the same kind of thing happened to Calvin while I was pregnant with him and, indeed, thinks it continues to happen. His story sparked an image of our boy as a silent sponge, sopping up what morsels of life's wisdom Michael and I might have to offer him along the way.

I continued thinking about Stan's story throughout the day, so I ended up renting Superman. Then I went home, popped the movie into my laptop and quickly located the scene that Stan had referred to where Marlon Brando says to his infant son:

You will travel far, my little Kal-El. But I will never leave you. Even in the face of my death the richness of my life shall be yours. All that I have learned, everything I feel, all of this and more I have bequeathed to you my son. You shall carry me inside you all your days. You will make my strength your own, see my life through your eyes, as your life will be seen through mine. The son becomes the father the father becomes the son. This is all that I can send with you , Kal-El. And not near so rich a gift as that your mother sends along. Her love.

I bawled like a baby at the scene, at the kindness of Stan's shared sentiments. But mostly, I cried because I mourn the fact—daily—that, even if it were true, I am fairly certain that Calvin will never be able to tell us all that he knows of the world or the way he feels about it deep inside, behind his clear blue eyes.

little trooper

All of my favorite jeans have worn through in the knees. The tattered holes are not intentional, but rather the product of countless months teaching my son Calvin to crawl since he couldn’t do it on his own. The lesson was arduous, both of us down on all fours as I supported his torso with one hand and with the other moved each limb in sequence—right arm, left leg, left arm, right leg, and so on. We practiced hours each day from the moment when most kids learn to walk until he was just over two, at which time he was able to creep a few feet on his own.

Calvin was born six weeks prematurely with significant neurological deficits of unknown origin. Since before birth he has suffered the absence of a large portion of the white matter in his brain and, as a result, cerebral palsy, serious ocular and cerebral visual impairments, global hypotonia, hypothyroidism, slow gastric emptying and pervasive developmental delays.

Shortly after Calvin turned two he was diagnosed with epilepsy, which at the time I believed was a benign disorder for which you take a pill and everything is okay. I had no idea that it would eclipse all other adversity we had yet encountered. Calvin's first seizure was a four-minute grand mal seizure. He choked and stiffened, his face turned ashen-grey then blue and, with eyes bulging, he began to convulse. In a panic I called 911 and he was taken by ambulance to the emergency room. That was the first of innumerable visits there and to the NICU, the first of hundreds of seizures, the first of several intubations, of scores of drugs, dietary therapies, nauseating side effects and countless missed milestones.

Even with powerful medication, Calvin continued to suffer seizures that came in large clusters and at times developed into status epilepticus, a prolonged seizure that can often lead to death. During one forty-five minute seizure when he did not respond to a bevy of emergency medication, we were left helpless at his side, terrified for his life and powerless to do anything to help him.

The medicines cause horrible side effects, many of which Calvin already suffers as a result of his neurological condition. The drugs can also have lethal side effects leaving us to wonder if the treatment might be causing as much damage and risk as the epilepsy itself. None of this he understands. Sadly, Calvin cannot tell us what is hurting. Though he is nine, he cannot speak, cannot walk without assistance and remains in diapers. I have no doubt that things would be different if it were not for the epilepsy.

But Calvin is a little trooper. After each attack he has bounced back, at least part way. His tenacity is formidable. Despite this battle we wage, Calvin has enriched our lives beyond measure. He has taught us to delight in simple things, to have patience and to take nothing for granted. It is because of Calvin that we persevere.

Epilepsy affects 3 million Americans and their families, about 1 in 100 people. One in 26 Americans will be diagnosed with epilepsy at some point in their lifetimes.

Epilepsy kills 50,000 American’s annually—more than die from breast cancer—including children. Even so, it remains a most obscure, stigmatized, underestimated, misunderstood and grossly under-funded disorder.

Epilepsy is the second most common neurological condition affecting more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined.

Over a third of people with epilepsy do not have their seizures fully controlled with medication.

Epilepsy afflicts up to three times the number of Americans compared with Parkinson’s disease, yet Parkinson’s disease enjoys more than four times the amount of funding from Pharma, nearly three times the government funding and at least ten times the funding from private entities as compared with epilepsy.

People with epilepsy suffer debilitating, sometimes lethal, seizures and/or heinous side effects from medication and most must remain on these drugs for years, if not for their entire lives.

Only one quarter of epilepsy funding targets finding a cure. The lion’s share goes toward developing treatments, such as medications, from which the pharmaceutical industry stands to gain billions.

The only hope to end this suffering is a cure. http://www.calvinscure.com

Calvin at 18 months, 6 months before actively crawling

my small town america

Glumly, I clip Rudy on the leash and we slog down the street through inches of dirty slush and ice that, sadly, show few signs of melting into spring. At twelve—an octogenarian in people years—Rudy creeps along like a slug. When we pass by Woody's house three doors down Rudy perks his ears up hoping for a treat. Woody is outside and tosses Rudy two or three crunchy pigs in a blanket. Sometimes Woody joins us, others he asks us inside where I pilfer his chocolate jar and work on befriending his cats. He's an octogenarian, too, a few years younger than my dad would've been, and I rib him just the same.

Next door, Mike, who's in his nineties, takes a break from snow-blowing his driveway to say hello. A former college athletic trainer, he's six foot four or so, just like my dad was. He often asks how our boy is doing and almost always shakes his head expressing his sympathy for the difficulties Calvin and I face. Mike is equally fun to tease as Woody, so we chat for a while before I tell him to quit slacking off, get back to work and that he's welcome to do my driveway when he's done with his.

At the corner I wave to Allyson, who I see in her kitchen with Ingrid and their baby Miles, and from there I can begin to smell the rich sweetness of Bob's pipe, which drifts on the breeze from down the block. As we approach, Bob welcomes us in a pair of cut-off hunting boots that pass for all-weather slippers. He gives Rudy a pat, after which, Rudy—if I don't catch him in time—returns the favor by peeing on Bob and Nan's fence post. Bob is a couple of years older than Rudy. Once, he turned a beautiful bowl for me out of a hunk of Bowdoin maple, which his wife Nan wrapped in paper printed with mauve flowers. Nan herself has given me scores of perennials from her garden that now thrive in mine: feverfew, forget-me-nots, iris, grape hyacinth, geraniums. You should see her garden in all of its glory. From springtime into late fall, Nan and Bob invite me into their oasis nearly every time I pass by, always an abundance in bloom for me to savor.

Nan and Bob's daughter-in-law, Georgette, who lives next door, waves at us as she slowly drives past in her truck. She often stops to ask after Calvin.

At the grocer I see Caitlin who I've known since she was pregnant. We talk about how her five-year-old boy, Ashby, is bigger than Calvin, who's nine. She gives me a hug and tells me that she loves me and to give sweet Calvin a kiss. I tell her that love her too.

Then I shoot the shit with my buddies Bart and Kent, leaning over the counter at Bart's best ever video store, getting the scoop on films galore and returning the one we just watched.

On the path through the grove of pines that stand soaking in a pool of melting ice, I stop and visit with Stan, who is out in all kinds of weather getting his exercise walking. Stan asks how Calvin is doing, tells me a nice story, of which I'll relate to you later, then gives his regards to Michael and tells me to hug Calvin for him. We embrace hands then clap each other on the shoulder saying, "so long."

Upon my return home, our neighbor, Brian, helps me shovel the heavy slush from our driveway in preparation for the next snow to come. I often see him helping out his neighbors with their chores.

Later, to escape a bit of frustration and despair brought on by my rabid son, I take a rare outing to an evening lecture at the college while Michael stays home with Calvin. I sit off to the side in my relative gloom, watching the crowd pour in. I see Carmen in the back, but she doesn't see me. I wave at Bill, then the entire English department files into the front rows. I see Mark and Jill and Fabian and Tricia and David and there's Elizabeth across the aisle. Aviva and Marilyn come and give me a hug, and Pete, on the fringe, gets one too. And then there's Barry, the college pres, who offers an ever delightful and heartfelt introduction to the speaker, the esteemed author, Colm Tóibín. For the next hour Colm talks about silence in writing, focusing on James Joyce's The Dead, one of my very favorite stories. After the talk, Tricia buys me one of the author's books since I didn't bring my wallet, and the author signs it for me. Then, under falling snow and a sky aglow with the town's lights, I walk home, the book safely concealed within my coat, my despair at bay, for now.

Once home, I step into golden warmth and greet Michael who sits reading in front of the fire. I pour myself a bourbon on the rocks and it burns as it goes down, warms my gut. I'm warm all over, now, mostly holding the thought of the immense kindness of folks in my small town America, where hearts and souls expand into mine like the universe, where smiles and love prop me up just when I feel I'm about to go down.

photo by Michael Kolster

empathy

Empathy is the only human superpower – it can shrink distance, cut through social and power hierarchies, transcend differences, and provoke social change.

—Elizabeth Thomas

Calvin and his friend, Ellis

guilt

No matter what people say, when your child is born with some kind of serious disability, syndrome, birth defect—or perhaps doesn’t survive at all—you become awash with guilt. Serious guilt. No, I haven’t spoken with all of the women in the world who have suffered this kind of hardship. I’m just making an educated guess.

Two weeks before Calvin was born my husband Michael and I learned, during a sonogram, that he had significant neurological complications. He was missing some of his white matter—a lot. White matter is the brain’s superhighway, as it’s been explained to me, the way the brain communicates with its various parts and with the body. We need it ... bad.

Before Calvin was born the doctors initially thought they saw evidence of hemorrhaging that might have caused further trauma to his brain. After Calvin was born that theory was debunked, though I always wondered if the doctors were just playing nice to make me feel better, you know, assuage my guilt over somehow causing a hemorrhage.

Since then I’ve racked my own brain for what might have gone so terribly wrong. Did I swim too hard too fast too long? Did I rest enough eat enough drink enough sleep enough walk enough?

Maybe I shouldn’t have dived into that pool drank that bit of wine ate that cheese pet that dog taken that flight worn those pants gotten that cold had that sex slept on my back gotten pregnant so late had that amniocentesis.

My friend had a son with some very serious complications. I'm not sure the doctors ever completely figured it out and therefore were never able to fully relieve his intermittent misery. Having never met my friend in person—only commiserating over the phone or in emails—she told me she thought, at one point, perhaps her son was afflicted as the result of her poor posture, being a woman of tall stature and wanting to appear shorter. While assuring her that couldn't possibly be the case I also validated her concern, which I knew came to her naturally. There’s no getting around it. Guilt. It’s just what we moms do.

Originally published 04.24.11

photo by Michael Kolster

yesterday: day nine

Despondent, though no longer terrified: that’s how I feel, now, during and after Calvin has a seizure. I used to regularly fear for his life. I used to always cry. Tonight my face is drawn and sullen as my boy sleeps under a net upstairs, as my husband wears the baby monitor around his head like a bandanna, as the nurse meticulously completes her notes describing the seizure, its duration, the blueness of Calvin’s lips and fingers, the severity of his tremors. I hear water boiling. Michael is making a souffle, cracking eggs and scrambling them like Humpty Dumpty after his fall, like Calvin’s brain in seizure. I’m in the dark, writing again about a seizure that steals my soul, wrecks my hope, renders my child limp and lifeless even as we have to—within minutes after his seizure ends—spoon nine anticonvulsant pills with yogurt into his dutiful mouth and hope that he can swallow.