little celebration

Today marks eleven weeks of seizure freedom for my sweet son Calvin. It isn't his longest stint ever; that record was nineteen weeks long—or nearly four and a half months—in the late summer of 2022. But I think this is one of his top three or four longest stretches without any seizures since he first began having them when he was just eighteen months old, shortly after he said "mama" for the first and only time in his life.

Long seizure-free stints usually mean Calvin misses very little school, which means I have more time for myself to do what I want and need to do. Moreover, I'm not racked with anxiety and tension looking over my shoulder all day long just waiting for the next frightening seizure to strike. To be mostly rid of that feeling is liberating to say the least.

It's also notable that Calvin has seemed very content and happy for several months. He is still uber restless due to the akathisia he suffers because of other epilepsy drugs, namely benzodiazepines, which I believe permanently harmed his developing brain.

But that Calvin smiles—when he gets on and off of his school bus, when he enters, makes his way through, and exits the grocery store, when we put him to bed and smother him with kisses—is not something that I take for granted. I remember years when I rarely saw Calvin smile, back when he was reduced to a little zombie, his brain awash with heavily-sedating drugs. I feared he might never smile again.

Calvin is also sleeping better these past several months, sometimes as long as twelve hours. He does still sometimes wake in the middle of the night and might have trouble getting back to sleep, but more often than not it is my impression that his sleep is fairly sound compared with in the past.

So, with all this in mind, I am having my own little celebration today—of Calvin's seizure-free stint, of spring, more daylight, and Calvin being easier and more enjoyable to take care of in a myriad of ways.

Calvin wearing his cool hand-me-downs

realized dreams

A week ago last Sunday I ran the New York City Half Marathon, which starts in Brooklyn's Prospect Park, goes across the Brooklyn Bridge, along the East River, up 42nd Street, through Times Square and finishes in Central Park. It was a challenging course with long hills, and though I missed my goal time by several minutes I was satisfied with the outcome. I placed 18th of 370 in my division (F60-64) with a time of 1:51:43 (8:32 average pace), placed in the top 15% of all women and the top 27% percent of the entire field of American runners. I could not have done it without the love, coaching, advice and support from so many of my athletic and non-athletic friends and loved ones.

More importantly, with the help of scores of generous donors, I raised nearly $15,000 for the American Cancer Society for research, patient support and outreach!

As I raced with 27,000 other runners from all over the world, my mind wandered little as I focused on my stride, breathing, and the scenery and people around me. I didn't think about Calvin except perhaps once as I glided smiling through Times Square thinking I was in ways running for him—something he has never been able to do nor will ever do.

And though Calvin wasn't on my mind during my race—nor is he much if at all when I go on my daily runs—I realized after I crossed the finish line that if it weren't for Calvin, perhaps I'd never have taken up running in the first place. When I was pregnant with him I had swum at least a mile every day until week thirty-two when Michael and I got the harrowing news that our unborn offspring was missing much if not most of the white matter in his brain. I had to give up swimming and walking our dog until after Calvin was born. When I eventually got back into the pool, the heartache, guilt and uncertainty proved to be too much for me. I feared my workouts might have hurt Calvin's brain somehow, and I couldn't help but cry into my goggles and hope no one noticed.

Then in stepped my friend, world-class marathoner and Olympian, Joan Benoit Samuelson. Upon first meeting, she quickly disabused me of any notion that my swimming might have harmed Calvin's brain in utero. Still, I was no longer interested in doing lap after lap indoors. Years later, after prodding me to take up running, Joanie gave me my first pair of running shoes—Day-Glo yellow Nike Zoom Fly 4s. Her gift came on the heels of having spent the first fifteen months of the pandemic watching another elite marathoner run the same back roads on which Calvin and I took daily drives, all the time wishing I could do the same. It was then, just over two years ago, that I began running in earnest and training for my first-ever race—Joanie's Beach to Beacon 10K—after years of mere dreaming of having the time and freedom to run.

And though I am no fan of the saying "everything happens for a reason," I'm a staunch believer that, if we so choose, we can find great purpose and deep meaning from life's challenges, tragedies and accidents. For that knowledge and capacity, I am forever grateful.

Running through Times Square

sunday update

Sorry it has been so long since I've written, but in this case no news is (mostly) good news. Calvin is still up to his usual antics—drooling, biting every surface possible, putting his hands in my face, grabbing me, at times dropping down in stubborn refusal. Good news is he has gone almost eight weeks without any seizures. Since starting a drug called Xcopri over two years ago, Calvin has had several long seizure-free stints, one of which approached four months. In that time we've been able to reduce his only other epilepsy medication. He is still very restless during the day, and I am weighing whether to put him on an ADHD drug called Intuniv, which his neurologist recommended. But, despite his restlessness, for months he has been super sweet, loving, compliant and smiley, and it is hella fun to bring him to the grocery store every day and to take him on long relaxing car rides which we both relish.

Sadly, I accidentally shut Calvin's pinkie finger in the car door and broke it at the very tip a couple of weeks ago. We got his hand x-rayed and saw the orthopedic surgeon who told me that my instinct not to splint Calvin's finger to the adjacent finger was a good one since Calvin clenches his fists constantly. Hearing that relieved me. When he gets hurt I feel physically sick, like when he got his hip (femur) broken at school two years ago because of a couple of complacent and neglectful aides, and when he suffered ungodly pain from gallstones. Poor Calvin has to endure so much.

But going longer between seizures is something huge to celebrate. It's not only good for Calvin's brain but it means that he doesn't miss nearly as much school, which is good for him and for me (he's got a new teacher and new aides.) I've been spending my time when he's in school running, a sport I began in earnest just over two years ago. I've enjoyed some small and fun successes—5k, 10k, 10-mile, half marathon—and met some lovely people most of whom have become friends. For the past several months I've been training for the New York City Half Marathon, which is a week from today! I am running as a fundraiser for the American Cancer Society in honor of my father and so many others, and my goal is to raise $15,000 by next Sunday. I am very close to achieving that goal. If you'd like to donate to my campaign, now is the time and here is the link:

https://secure.acsevents.org/site/STR?fr_id=107942&pg=personal&px=59415756&fbclid=IwAR290O6lgFUYarnIuf8e2imKq1Ae1mMiGgJfn_s4OfpChy3P-SDZ-6P3uVg

Right now, Michael is on a two-break from teaching. In late May he begins a year's sabbatical, during which he will be attending a couple of artist residencies and working toward publishing his fourth photo book. We continue to enjoy his amazing dinners, most all of them recipes from the New York Times. I'm still making my famous salad every single night. We've hosted a few small dinner parties and have been guests at a few, too. Gathering with friends is a good distraction from caring so hypervigilantly for Calvin. And, Mary, Calvin's former school aide and buddy, has been helping us take care of him a little, as well as Caroline who is another good aide we recently found.

Suffice to say I feel very grateful these days that some things have figuratively calmed down with Calvin, who has just under two years left at the high school. In the meantime we have to figure out what the hell we are going to do with him after he "graduates" since most programs do not fund one-on-one care, which is essential to Calvin's safety.

So that's it in a nutshell. Thank you all for your love, interest, concern. I'd love to hear from you.

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.

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.

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

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.