2.07.2024

twenty

I have heard parents say that one of the happiest days of their life was when their child was born. Not so for me and my husband, Michael.

The day Calvin was born and the two weeks leading up to his birth were filled with much fear, anxiety and sorrow, the twisted emotions of both hope and a sense of peril which we still sometimes feel.

At thirty-two weeks gestation, a fetal sonogram had revealed a significant absence of the white matter in Calvin's brain. In the wake of that finding was a trip to Boston hospitals for back-to-back appointments with radiologists, obstetricians and neonatologists, more sonograms, blood draws, a fetal MRI, and a midnight IVIG (intravenous immunoglobulin) for me.

A plan was made to deliver Calvin at Boston's Children's Hospital via cesarean section at thirty-five weeks to increase his chances of being able to breath on his own. A neurosurgeon and donor platelets would be available in case Calvin suffered hemorrhages in his brain and needed a shunt.

But Calvin began making his way into the world on his own a week earlier during an ice storm in Maine. Medevac helicopters had been grounded so we had no way of getting to Boston where specialists knew every detail of his case and were ready for him to come.

From our town's Midcoast Hospital I was transferred to Maine Medical Center, and since there were no matching donor platelets available, I underwent a forty-five minute pheresis—while having mild contractions—to extract my platelets in case Calvin needed them to stop a brain bleed. The pheresis left me with too few platelets to get an epidural without the risk of bleeding into my spine, so I had to go under general anesthesia. Since I would be unconscious, the surgeon would not allow Michael into the operating room, so, most regrettably, neither of us saw Calvin being born.

Calvin spent a week in the neonatal intensive care unit, the first sixteen hours of which he was on a respirator before being put on a C-PAP. He spent another two and a half weeks in the Maine Med continuing care nursery while I stayed restless nights at the nearby Ronald McDonald house and Michael commuted daily to and from work since at the time the college offered no parental leave for fathers. When Calvin was stable enough, we transferred to Midcoast Hospital where Calvin and I boarded in the labor and delivery ward for another three and a half weeks before bringing Calvin home for the first time.

The last twenty years have been a roller coaster which has only recently felt as if it might be slowing down and leveling out a bit. It has been a stream of doctors and nurses and phlebotomists and surgeons and therapists and needles and intubations and bruises and broken bones and surgeries and pneumonias and seizures on top of seizures on top of seizures and drugs after drug after drug and side effects ad nauseam. It has been full of grief and loss and worry and shrieks and tears and laughter and some joy.

And though Calvin has been ridiculously difficult to raise for all the reasons I've stated, and though we suffer daily the loss of what we thought parenthood might promise, it is in great part because of Calvin that we live an intensely rich life; we feel the myriad of human emotions—the joys, the sorrows, the regrets, the hopes—more profoundly than we might have, we believe. Because of Calvin, we have met hundreds of extraordinary people—doctors, nurses, therapists, educators, aides, mothers, fathers, strangers. Calvin has helped me to understand that this mundane thing I do, which is to feed him, bathe him, clothe him, change his diapers, wipe his butt, nurse him, is the most important thing in the world: to take care of another human being. And though I regularly fail, he inspires me to try to do it with grace and patience. He allows me to forgive myself when I falter. He loves me unconditionally. He is pure of heart without a mean or resentful bone in his body. And although I don't believe for a nanosecond that everything happens for a reason (I cannot believe in any divine or universal design or being that would make or allow a child like him to suffer so badly) he has given me great purpose and I hope he inspires empathy in others.

And so, although I would always wish for Calvin to be healthy, to be free from suffering, free from seizures, drugs and their heinous side-effects, be able to speak, read, write, sing, run, play, I can wholeheartedly say that my Calvin is the best person I know, and that I am deeply grateful to be his mother and to celebrate his birth even though it was so hard on me and Michael.

Happy birthday, baby. What a crazy twenty-year roller coaster ride it has been.

1.22.2024

love at the grocery store

Most days I take Calvin to the grocery store. It's one of the few places he seems to tolerate and perhaps even enjoy. He smiles on the way in and on the way out and a little in-between. He stares at the florescent bulbs above the produce case. He pats any crinkly plastic wrapping. Though he can't steer it, he pushes the cart but sometimes lets go and stands in place for no apparent reason. Despite my attempts to thwart his efforts, he too often licks the glass doors in the dairy section. He tries to bite the metal shelving. Then he gives me copious hugs in the checkout aisle.

On most trips to the grocer we have some lovely encounters with friends, employees, and strangers. Sometimes, children will stare at Calvin in wonder. Often, adults will avert their gaze when they see us coming. Usually, elderly people smile as we amble by. On more than one occasion people have tried to give us cash, probably because they feel it's the only way they can help a mother with such a severely disabled child.

Today was an extra-special day at the grocery store. After I pulled into the handicap parking space, grabbed a couple of reusable bags and a small cart, I saw an acquaintance. We said our hellos and our nice-to-see-yous as I wrangled Calvin out of the back seat. My friend and I caught up on various goings-on. I told him that we go grocery shopping almost every day, and how pushing the cart seems to make it easier for Calvin to walk, mentioning that the spring before last Calvin broke the femoral head off of his femur—in essence broke his hip—at school. I described how Calvin's one-on-one aides neglected to assist him as he walked around the room and attempted to sit in a chair, which he ultimately missed, causing him to fall and break his hip. My friend was clearly alarmed and upset to hear this and to understand that it's possible and even likely that Calvin suffers chronic subclinical pain from the injury and the three screws in his hip. Then, I asked my friend how his business is doing, knowing the hardship he faces keeping it afloat amid staff shortages and other stresses. There seemed to be a tacit understanding of each other's struggles, a feeling which, at least for me, felt good to share.

Once in the store, as my friend and I parted ways, he said, "You are beautiful." I replied, "You are too!" as my eyes began to brim with tears of gratitude.

Calvin and I continued on and made our way through the produce department as he pushed the cart while I steered from beside the front end. As we rounded the corner from the bakery to the cold cuts, I looked over my shoulder to make sure he was still holding on. Lo and behold, he was still walking but his pants had fallen down around his ankles! Just then a man perhaps a bit older than I approached from behind. Slightly embarrassed though still amused, I said, "Oops!" as I pulled Calvin's pants back up and tied them as quickly as I could.

The man then said to me with a very slight slur, "I had a stroke three months ago and I still have double vision sometimes."

I asked, then, if he had seen Calvin's pants down. He said he had, adding with a grin as if to lessen my embarrassment, "It's America!" I laughed good and replied smiling, "Yes, it sure is!" We exchanged some niceties then went about our business.

Soon after, I saw the man in the dairy section. As we stood near the yogurt, Calvin licking the glass door, he told me more about the stroke he had had. He described how his beagle had saved his life by alerting him in the middle of the night that something was wrong, though the man had felt no pain. He said something to the effect that we all have our battles. He mentioned God and how everything happens for a reason, and I told him I didn't believe that, but that I do believe we can find purpose and meaning in life's unfortunate dealings, adding, "that is just as magical!"

The nice man asked if I was married, saying with a blush that grocery stores are about the only good places to meet women. I said I was, but assured him it was okay that he had asked, adding that none of us gets anything we want in life unless we ask for it. I gave him my card with a photo of me and Calvin on one side and my blog address and email on the back. He gave us blessings, and I asked that he say hello to us the next time he sees us in the grocery store. I hope he will.

And as Calvin and I left the store, random folks smiling at us as they walked by, I turned to look at Calvin, and there he was, still holding onto the cart with one of his cute goofy smiles for all to see. And it was beautiful, and magical, and I fell in love again.

1.02.2024

precious notes from friends

I'm writing from Italy, today the sky was crystalline blue, the sun was warm, autumn leaves astonishing. I can’t do anything to avoid your suffering but I'm sharing today's sky with you.

—Near Milano, Italy


This feeling of paralysis comes over me every time I read your blog. I first came across it after my sister met you somewhere. I'd been curious about Calvin for a long time; I often look in on your husband's photo blog and had seen the photos taken at some big city medical facility and then I got to see Calvin in real life at his school.

Reading it overwhelms me and grinds my thoughts to a halt. The only thing that penetrates my stupor is a sort of vague feeling that I need to be less impatient with my own kids, or that I'm not doing something right with them ... or wasting my opportunity with them. It's very unsettling. I make it worse by reading several posts in a row.

I mean this as a reflection on me, not as a criticism of your writing.

I recall watching Calvin's bus driver kiss him on the top of the head after she'd turned him over to one of the school aids at drop-off time. It made me feel good that that particular woman had the job.
 

—Brunswick, ME


I've become increasingly amazed by whatever it is that goes on between a mom and her child—an instinct, a bond.  I was totally unaware of it when I was a kid.  As a matter of fact,  in recent years whenever I talk to my mom (now 95) I begin by apologizing for all the crap I pulled as a kid.  I didn't really start to notice until my son got sick and I saw it in my wife.

—Santa Monica, CA


Living every day as if it were your last or the last day of someone you love is a completely exhausting way to move through the world. And yet it is, it seems, the only way.

—Santa Fe, NM


The condition of imagining the place and perspective of the one who is seemingly just beyond the place of ordinary understanding... just beyond the reach of my love and spiritual communion, the one who knows that she loves me but hasn't the foggiest clue who I am... is perhaps the greatest of all existential challenges. Spinoza and Camus have nothing to offer us here by way of wisdom. I have less than nothing to offer by way of wisdom... nothing that I would offer as advice but to tell you that the soul of the one afflicted is never afflicted. The thing that is true about any of us is true of all of us. From the most gifted to the most challenged: we are here...

—New York, NY


And there is a kind of arrogance, a very particular kind, that comes with the possession of good health...a superstitious arrogance...that regular types can only see and appreciate when they exit, for a spell, that lucky realm.

—Roswell, NM
 
 

Christy, Christy, Christy, I wish I could put my arms around you and give you a big long hug.

—Sammamish, WA

 

I realized that some children are born sick and some die - there's no way around it, it's part of life. Even more than healthy kids, sick kids need very special caring and love—and why shouldn't we be parents of one of them?? Why should we be exempt? Why should another family have to bear the burden and not mine?

—Darien, CT


Happy New Year back to you....
from an errant friend....
from one caught in the web of limited time....
from one who selfishly gives to his kids & family....
who then gives to those intertwined therein in an expanding circle...
who takes his time when he can, too oft on the edges, which are becoming too thin....

but a glimpse of wonder,
a moment of peace,
the taste of calm,
too passing & transient to hold--
but lasting & strengthening for those edges
which I hope will hold,
for my family's sake,
or my friends.

You pass my mind more oft than my fingers linger here,
and with the passing, a smile & a blessing sent....
for you, and Calvin, and the family you hold dear.


—Silverdale, WA

12.19.2023

hurricane force

When running I almost never think about Calvin. It's my worry-free, angst-free, stress-free, un-calvin-centric time, and it's good and healthy and fun for me.
 
But on yesterday's 8.5-miler, as it rained like hell, and gusts up to 50 mph lifted and pushed and tossed me, I thought of Calvin and of how he does the very same thing to me. And I thought of this gorgeous poem written by a mother of a child not unlike mine, and of this time in Florida thirteen and a half years ago when Calvin was six and a half and when we could more easily take him places because he was not impossibly restless. And I thought about how the beachwind and the surfsounds and the sea and the heat and/or some unknowable suffering—and most likely an oncoming seizure—was upsetting him and, as always, it killed me to see it, to feel it, while simultaneously experiencing the luxuriousness, power and love of this particular kind of messy motherhood.
 
If nothing else, Calvin has, does, and will change me. He makes me feel alive, and feel joy and sorrow and so many other human emotions deeply, and that is some kind of amazing gift to be grateful for.


Gentle Spirit
by Jan King 
 
A gentle spirit has come into my life
To make me see things I did not want to see,
To make me feel things I did not want to feel,
To teach me things I did not want to learn.
This gentle spirit has hurricane force
That picks me up, turns me this way and that,
And puts me down softly in a new place,
Always a new place.
 
I cannot return to the safe warmth I once knew,
It is gone forever.
Because of this fragile, gentle spirit,
Joy and sorrow have become intertwined
In a fiber of life that few can comprehend.
Because of this sweet, gentle spirit,
I can appreciate what is often assumed.
 

11.16.2023

on running

A little less than two years ago I began running in earnest for the first time in my life. My dear friend, Olympic gold-medalist and world-class marathoner, Joanie Benoit Samuelson, knowing that I had once been a division I swimmer, had been asking me for years, "When are you going to get back into the pool?" and, "You know, swimmers make good runners." 

I had long lost interest in swimming for fitness, in doing lap after boring lap despite how good my body felt moving swiftly through the water. But I was desperate to feel like my former athletic self. More so, I pined for an escape, a respite—even if only fleetingly—from the responsibilities of taking care of my autistic, disabled, chronically ill child, Calvin. I yearned for something to occupy my mind besides the worry, anxiety, frustration and disappointment that loom too large caring for someone like him. I needed something that was wholly mine. 

For the first fifteen months of the pandemic—before Covid vaccines were developed—we didn't send Calvin to school, didn't take our usual outings to the grocery store, and had given up our in-home nursing help. To pass the time, Calvin and I went for daily drives on the nearby backroads taking in the beautiful scenery and listening to music. On our drives I often imagined pulling over, getting out of the car and running into the vast meadows just to lose myself. It was during our drives that I spotted an ambitious and wicked-quick runner who glided for miles and miles even in the harshest weather. I wondered what compelled him to run so far, wondered if he, like me, felt driven to run from some sadness, burden or worry, toward some kind of reward, or perhaps a little of both.

A year later, Joanie gave me a pair of fancy running shoes in exchange for an ice cream cake I had made for her husband's birthday. That was the moment I knew I had to commit to training for her world-renowned Beach to Beacon 10k, which she founded in 1998 and in which she had urged me to participate. It would be my first road race ever, and one that would get me hooked on the sport and on competing again.

Since that first race in August of last year, I've competed in four 10ks, three 5ks, one ten-miler, and a half marathon, which was in early October. I've enjoyed some small successes. Mostly, though, running has done for me what I hoped it would. I feel like my old self again in many ways—more light and lithe and spry. I'm healthier and happier. My capacity to endure my son's troubles has, perhaps, expanded. I think—hope—I'm a better person, friend, wife, mom. I've befriended some sweet and amazing people whose generosity, expert advice and encouragement has been essential to my accomplishments.

Getting out on the trails and roads, especially at my beloved Pennellville with its big sky, open fields, and expansive views across the water has been cathartic. I love to feel the sun and rain and wind—and sometimes snowflakes—on my face.

The one downside, however, is that I've been writing a lot less. Notably, though, when running, I almost never think of Calvin (and therefore I don't feel at all stressed or anxious.) I hear only the sound of my breathing and my feet striking the ground, the swish of my jacket, the song and chirp of birds and crickets, the babbling of brooks. I smell the sweetness of fresh-cut grass, clover, rose rugosa, smoke from a wood stove. I smile and wave at passing runners, bicyclists, truckers. I drink in whatever Maine has to offer on any given day throughout the year. I lose myself. In short, I finally have a time and place where I feel free.

Last week I signed up for the New York City Half Marathon in March with the hope of running with 24,000 other athletes over the Brooklyn Bridge, up Seventh Avenue and into Central Park (thanks to John Blood for that recommendation). I qualified for the event, but I missed the cutoff date for the guaranteed timed entry, so I'm hoping to be chosen in the random lottery which is at the end of this month. Cross your fingers, knock on wood.

I'll be forever grateful to the many lovely people who have brought me to this sublime place called running: my father, our family's original athlete who ran a 4:28 mile at the Naval Academy in 1948; my husband, Michael, who has been running four or five fast 5ks every week for nearly a decade; Joanie Benoit Samuelson, for urging me on for so many years; Rob Ashby, marathoner extraordinaire, who unwittingly inspired me to go the distance, and so many others since who have inspired, supported and encouraged me to keep on trucking. Thank you.

11.03.2023

recent dealings

a sick child. a string of painful restless nights for him. rude awakenings. too much missed school. the surgery to remove our dog smellie's melanoma. too many tiffs requiring apologies and forgiveness. a mass shooting in a nearby tight-knit community—eighteen people dead. the shooter's car and body found a mere mile from michael's studio. conversations about gun violence and gun safety measures. conversations about suicide and its reasons. softly schooling myopic, well-meaning people who think suicide is somehow a selfish act rather than from unimaginable suffering. steadfastly countering other people's ignorant comments on the topic. too many sleepless nights. another uncomfortable, contentious IEP. smugness. the feeling that others are disingenuous. mistrust. calvin's grand mal after five and a half weeks of seizure-freedom.

and then, this poem reappears:

The Peace of Wild Things
When despair for the world grows in me
and I wake in the night at the least sound
in fear of what my life and my children’s lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting with their light. For a time
I rest in the grace of the world, and am free.
 
Wendell Berry
 

10.16.2023

dear friend

now i will be strong for you. i can. you will stay in my thoughts and you will shine. i know. focus on the little things. the smell of your coffee, the feeling of the sun on your face. the wind in your hair. the quiet of a back road. the taste of clover and salt in the air. the warmth of a loved one's hand. the feeling and sound of the ground under your feet ... tarmac ... carpet ... tile ... wood ... rubber ... linoleum ... sand .... grass. the happy din of knives and forks on a plate. the rich taste of dark chocolate. the sound of bees and birds and brooks—even the memory of them. the color of the sky at dawn. at noon. at dusk. in the middle of the night. the patter of rain on a metal roof. the beauty of wilting flowers. the happy creases in the corners of smiling eyes. the long embrace of a friend. the light caress of shower water as it trickles down your back. the smoothness of soap in your hand. the buzz of a crowd. linger on these little things and let them move you. let them make you weep. they can be a joy in and of themselves. let the other big stuff take a backseat, if only for a moment. know you will remain in my thoughts. know i will listen and be there for you. as you have been for me. because, despite my own burdens (everyone has them) i have an infinite reserve of strength for you.