seventh spin around the sun

We celebrate our son Calvin's birthday a week from today. It is not in any way remarkable that he is already nearly seven—the years drawn out and somewhat wearisome—noting little change in his development. These long years have often been difficult, though sprinkled too, with joyfulness for the small advances he has made and for his apparent happiness. With each additional spin he makes around the sun, however, we focus and rejoice primarily for the fact that he is still alive.

Lately, I’ve been dreaming about losing Calvin. In a dream last week we were in a large, crowded shopping mall and Calvin simply disappeared. In my panic I worried that we wouldn’t find him amongst the throng of shoppers in time to give him his antiepileptic drugs. This image I feared the most. Then, early this morning Calvin awoke—as usual of late—at 3:30 and did not go back to sleep. In the meantime I catnapped and dreamed, occasionally waking to the dull thump of purposeful head-banging on his crib-side, then I'd temporarily drift off to sleep again. In my dream were three young neighbor boys—though strangers to me. They had come upstairs to visit Calvin in his crib while I was in the adjoining room. After I’d heard the boys leave I entered Calvin’s room. His crib was empty and he was nowhere to be found. The boys denied having seen him. Frantically, I looked everywhere in the house—under the crib, behind the couch, under blankets on a high-back chair—but Calvin had vanished. Then, thankfully, Calvin called to me from his crib and woke me from my anxious nightmare.

This fear of losing Calvin, that follows me into sleep, is difficult to restrain. I know too much about what epilepsy is capable of doing to a child like mine whose seizures are not under control, in spite of the powerful medications he takes to thwart them. I find that writing about it helps channel my adrenaline in a positive direction while at the same time raising awareness about this misunderstood disorder. Many who have read my posts have kindly and lovingly told me that it has enlightened them about epilepsy, that they are more appreciative of what they have and are better parents as a result of living vicariously through my words and photographs. I hope this to be true for many more.

If Calvin’s Story has touched you, and if you are able, please donate to epilepsy research in honor of his seventh spin around the sun. Go to:

http://www.calvinscure.com

Please continue to share Calvin’s story, whether by link or by word of mouth, and help bring us one step closer to a cure. It’s not hard. Just do it one story at a time.

morning madness

We set out this morning to do one of the few “fun” things that we can do with Calvin, which is to visit our favorite coffee shop in the next town over. There was a quiet, early snow adding a dusting on top of several feet already covering the ground in drifts and swaths.

In the car Calvin screamed so loudly that Michael and I couldn’t hold a conversation in the front seats. I am trying to teach Calvin that it is “not nice” to scream and to “settle down.” Perhaps one day it will sink in, but like everything else, it will take months, if not years, to learn.

In the coffee shop, standing between Michael’s supporting knees, Calvin’s shrieking morphed into ceaseless farcical laughter, reducing him to a flaccid noodle, wilting and dropping in a heap on the floor between Michael’s feet. Today, unlike most days, the cafe was fairly empty which only served to accentuate Calvin’s cackling. Sippy- cup, plate, knife and half-eaten toasted onion bagel with cream cheese flipped onto the carpet. We had barely just arrived yet it was already time to go home. I wondered if the antiepileptic drugs were causing Calvin’s crazy behavior. Probably.

Back in the car I swiped Calvin’s shod feet out of his mouth no less than twenty times. I was able to prevent him from yanking his delicate glasses off of his face sideways about half of his dozen attempts, and I dislodged his finger from his eye socket more times than I care to remember.

On the ride home, as Calvin’s screams echoed in my brain, I imagined happy families eating waffles and omelets in red vinyl booths at their favorite diners, sledding down snowy hills in bright plastic saucers, crafting snowmen with stick arms and rock eyes and skating on milky rinks, their reflections beautifully etched by sharp silver blades creating a frosty patina in the ice. I wondered if we would ever get to do these kinds of things with Calvin. Probably not.

something in the water

Sometimes I think there must have been something noxious in the water where I grew up. I came from a family of swimmers and all of my very closest friends and their siblings were swimmers. We passed our long luxurious summer days practicing in, competing in and lounging around a few small outdoor community pools. Our dreary winters were spent waking at 4:30 a.m. and driving in the cold morning darkness to swim a couple of miles in the chilly pool before classes began. The handful of us, all dear to each other, was a tight-knit group of girls who not only swam together but camped and hiked, went to the movies, the mall, the pizza parlor and partied together.

Maybe it’s just a matter of statistics, however, I find it odd how many of these dear friends of mine have had children of their own with significant health issues. One friend’s beloved firstborn daughter had a very severe form of epilepsy and died when she was about fourteen. Another companion had fraternal twins on the day my dad died and the girl was born with a syndrome that prevents her body from manufacturing cholesterol, a key component to development. A third friend in our circle had a beautiful daughter who was stillborn with no apparent problem to point to. My friend and neighbor growing up has two boys with heart defects and still another, a couple of years younger than I, has a seven-year-old daughter with epilepsy. One friend’s older sister had a daughter who died from Leukemia at the age of seven or eight then her son was diagnosed with two brain tumors when he was just five.

So it really seems that there must have been something in the water, like drinking tainted cool-aid. Or perhaps it's true that bad things simply happen to good people—most regrettably—to some very good people indeed.

photo by Michael Kolster

happy camper

So perhaps I bitch a lot and publicly grieve about the struggles I face in raising Calvin. But all in all I’m a pretty happy camper. It’s not clear to me, however, if that sense comes through in my writing, and so I have begun to ponder the question daily when I sit down at my computer to compose, edit and reread my blog posts. 

I am acutely aware that my entries deal with difficult, sad and often painful subject matter. And it’s because of that that I take measures to avoid a monotony of utter blackness while still deeply exploring and describing my memories and emotions, many of which are quite grim.

But besides being happy, I am—and have been since childhood—an eternal optimist and idealist. These characteristics may contribute, at least partly, to the fact that I have survived, and my marriage has thrived, in the face of the less-than-ideal circumstance of having a severely disabled child—despite the fact that I love Calvin to pieces.

As I write this I realize, too, that a few essential elements instrumental to my present happiness, which seems to bob like a buoy atop a violent, dark and unpredictable sea, is my sense of humor and love of a good joke or clever witticism. And, to be completely honest, as many of my closest friends will attest, when it comes to bawdy one-liners, I think I usually take the cake.

So I guess my secret to being a happy camper—which I am glad to share here—is to bitch, grieve, struggle, ponder, write, read, explore, dream, survive, thrive, love, realize, bob, joke and eat plenty of cake.

fetal mri

Calvin’s first MRI was in utero. We were about thirty-three weeks along.

Michael and I had learned the previous week, from an insensitive witch (doctor), that the lateral ventricles in our baby’s brain were enlarged. We ignored the docs advice to come back in two weeks by opting never to see her again. By good fortune, we came across a study of the diagnosed condition—ventriculomegaly—underway at a Boston hospital.

The events in the hospital were a blur, shuffling between obstetricians, neonatologists, neurologists and radiologists while running blood tests, genetic screenings, and sonograms. Near the end of the day, exhausted and fraught with worry, the only test left was a fetal MRI. Michael and I sat holding hands on teal fabric chairs amongst fake plants, and painfully awaited our turn. I felt alone and frightened, trying to hold back my tears of trepidation. I knew Michael felt the same.

Finally, I was lead to a changing-room to disrobe for the procedure. The stark space had bare plywood walls, a single hook on which to hang clothes and a cheap mirror fastened slightly askew on the back of the door. Against one wall were stacks of clean folded “johnnies”. I stripped down, shivering, not so much from cold as from fear and fatigue. Standing naked in front of the mirror I regarded my taut round belly and wondered how and when it all went so wrong. I was so afraid—afraid of what I knew about my precious child’s brain, and afraid of the unknown. Slumped in sorrow, my unwashed hair hanging in strings before my face, I feebly chose a pale printed johnny. Surprised and dispirited by it’s weightlessness, I found each gaping one-size-fits-all armhole and positioned the opening in front as I had been advised. The flimsy gown could have wrapped around me nearly twice if not for Calvin.  For a moment I stood trembling beneath the thin garment, which fell at my shins revealing shoeless feet. I had never felt so vulnerable in all my life, and in the mirror’s reflection I watched my screwed-up face start to sob uncontrollably.

Michael appeared and I gave him my wedding band—metal cannot be worn inside the powerful magnet. He escorted me to the imaging room, kissed me and returned to the waiting area. The technician laid me down on the conveyor and strapped me in good, feet first, on my back. With a push of a button I was slowly inserted into the massive, white hollow tube. It was a much narrower opening than I had imagined and I felt as if my pregnant belly might graze the cylinder as I passed through. The technician exited the room and left me alone, except for Calvin. A voice spoke to me over an intercom from the darkened side of a large window giving me instructions as to when to hold my breath for the making of the images. Deep, guttural sounds and jolting buzzes, like no other sounds I had heard before, bellowed from the machine's bowels. The noises were freakish, futuristic and jarring, contributing to the whole surreal experience. But somehow, knowing that Calvin was with me—inside me—and we were going through it together, gave me a sense of calm. I kept telling him that everything was going to be okay and not to be afraid and he seemed to be doing the same for me.

After an hour or so I emerged from the white monstrosity that had swallowed me whole. Now all we had to do—which was no easy job—was to wait for the results and find out what needed to happen next.

ventriculomegaly

aftershocks

As I left the house with my girlfriend last night I sighted brilliant Orion in the stark sable sky. He loomed low and large, his powerful legs grazing the tops of the giant pitch-black pines. I shrugged my shoulders against the near-zero cutting darkness, and I wondered if tonight Orion would watch over and protect my son.

I had spent the day with melancholy. It comes over me sometimes, and when it does I ponder what went wrong during my healthy pregnancy that caused my sweet boy to be so severely disabled. I grieve over the loss of moments that I still dream about such as chasing Calvin barefoot in the backyard, frolicking amongst warm ocean waves, messing our faces with dripping ice cream off of sweet sugar cones, skating hand-in-hand on a makeshift rink—our scarves sailing at our backs—or drawing sunny pastel pictures for each other that say “I love you.”

Later I came home, crawled into bed and drifted off, my melancholy dulled by chatter with old friends over crimson pomegranate margaritas and then dissolving into the nothingness of sleep. But at three-thirty I was bluntly awoken by the familiar sound of Calvin’s seizure cry.

I cannot adequately describe the helpless feeling of watching my innocent child endure a three or four minute seizure during which I can only stand by and wait. Any words of consolation I can utter are as much for myself as for my Calvin—who is deaf to them—lost in the seizure’s oblivion.

In bed with me after the seizure, Calvin’s aftershocks—the shudders, jerks and trembling—cause him to writhe. I startle as choking sounds come forth from his little throat. I hold stone still and alert in the dark for fear he’ll roll into another seizure. But he doesn’t, and finally his soft body calms and surrenders to sleep, with his thumb in his mouth, my hand on his hip and the other clutching his delicate, cool feet. 

Lying there in the warm bed next to Calvin I experience my own aftershocks. My day’s companion— melancholy—returns to visit bringing despair and emptiness, a reminder of the infinite losses I endure, and a hopeless question of ever being released from this sad, mundane, crippled existence.

Please donate to epilepsy research at:

http://www.calvinscure.com

day sixteen

Today is day sixteen, meaning it has been sixteen days since Calvin’s last observed seizure. I say “observed” because I wonder if perhaps I sleep through them once in a while, even though I have the baby monitor on high, blasting out its nasty hissing white noise. Michael assures me that I have not missed any.

The last time Calvin went sixteen days between seizures was in August of 2009, so we are hoping that we might have found a second drug, after six that essentially failed, that could help prevent his seizures. It looks promising since he’s had a cold for the last week and he has never, in my memory, had a cold without also having at least one seizure. We still have a long way to go before we can be certain and, like everything in life, there are no guarantees.

I spoke with another mother the other day about her child’s seizures. Her son, who is probably around three years old, has had some luck with the same drug—in addition to a special diet and one or two other drugs. She seemed pleased to tell me that he was only having twenty seizures a day instead of forty. I, too, was happy for them, because I know that any improvement is a welcome one.

I remember, when I was first researching epilepsy, speaking with my friend, whose child was cured by using the Ketogenic diet. Prior to the diet his son had been having hundreds of seizures every day, even though he was on several debilitating drugs.

So, day sixteen feels pretty good in the scheme of things, but, to be honest, I’d prefer not to be counting at all.

To donate to epilepsy research go to:

http://www.calvinscure.com/