bittersweet

Halloween, which used to be one of my very favorite holidays, has become bittersweet. Several years ago it became clear to me that it would be a very long time before we would be strolling house-to-house trick-or-treating with our son. Calvin can only walk very short distances holding our hands, that is, when he is willing. He is unable to hold a bag, say “trick or treat”, or eat candy, much less have any awareness or any understanding that there is such a thing as Halloween.

In an effort to enjoy Halloween I indulge myself in a few simple ways. I carve a pumpkin and adorn our stoop with several glow-in-the-dark skeletons. Each year I scour the Salvation Army to see what miscellaneous items I can put together for Calvin’s costume. Past Halloweens we have dressed him as a jack-o-lantern, a girl, a sheriff and a man-witch. This year he went to school as a colorful clown. To be honest, I struggle with whether to dress him up at all. I don’t intend to be mean spirited, but it feels a bit like dressing up our dog. Calvin is so completely oblivious. However, in his various costumes, Calvin brings smiles to his friends, teachers and even his bus driver, so I carry on.

I look forward to tonight when, in my black witch getup, I’ll pass out candy to all of the cute little monsters that come knocking at our door. Inevitably, like every year, I’ll see one or two kids who steal my heart and my eyes will well up with tears of delight and sorrow. All that candy and it’s still bittersweet.

photo by Michael Kolster

listen and learn

When you have a kid like Calvin you hear all sorts of things from family, friends and strangers. Often I hear comments that appear to try and level the playing field such as “welcome to motherhood” or “when he starts talking you’ll wish he hadn’t because they never shut up.” There are those who try to give me unsolicited advice like, “you need to restrain your anger”, or “you need to get over it.”

But then there are those individuals who offer the most honest and thoughtful words that erase all of the others. Recently I heard from my friend Meg, a woman who, as a young girl, was a favorite swimmer on the team I coached when I was eighteen. She wrote:

“I'm sure you realize how bad we are in this culture in knowing what to say when people are suffering. I cannot even begin to imagine what you go through day to day. To be honest, I start to imagine and stop because I have the luxury of doing so.”

She went on to share many other insightful, poignant and beautiful sentiments. Clearly she was speaking from her heart and not second-guessing what she thought I needed to hear. I was deeply moved.

Having said that I do not like to minimize any concern by parents for their children whether it is a bruised knee, a hurt feeling or an illness. As my father-in-law likes to say, “it’s all relative.” While a spilled glass of milk might seem trivial to an adult it can be a tragedy for a toddler. The best we can do is to listen to the struggles and triumphs of other people. To try and walk in another’s shoes is the only way we can truly begin to empathize.

spinning

They say that kids who are blind love vestibular stimulation and rough-housing. Well, that would describe Calvin. He has always delighted in spinning, bouncing and going upside down.

When Calvin was about one our buddy Jim brought over a huge bag of his kids' well-loved goodies. There were rattles and balls and all sorts of music makers, all of which Calvin loved. The best toy of all, however, was a cool johnny-jump-up. This jumper was solid state and built to last with a hard plastic cartoon airplane shell, nylon seat, metal spring and clamp.

In his jumper Calvin quickly learned to master the art of spinning. He transformed into an ice skater doing pirouettes, kicking out one leg to accelerate his spin. Wind up, wind down. It was dizzying to watch. But for Calvin, it was his chance to defy gravity, one of his greatest foes. We were fascinated at his adept coordination as we had not seen it before.

Calvin continued to enjoy this jumper over the next five years during which were forced to retrofit it. I fashioned a larger denim seat, reinforced the nylon strapping and replaced the main spring. Eventually, when Calvin was at least ten pounds over the weight limit, we could barely pry him out of the thing so we retired it for a brand new "special needs" jumper which he spins in every day.

shit happens

Reading another mother's recent Facebook comment made me think of a morning from this past summer. Like most mornings I heard Calvin wake up around 5:00 and romp around in his crib. I tried to roll over and get a little more sleep since I am up half a dozen times or more each night looking in on him; checking to see if he is having a seizure, checking to see if he is breathing or, when he is awake and standing in the crib, laying him back down and covering him. When I finally did wake up I went in to find Calvin completely covered in shit. At some point that morning his diaper had come off and for an hour or more he had been rolling around in it. I called for Michael to help me clean up. Poop was everywhere; it was in Calvin's hair, on is feet and hands, under his fingernails, on his face, legs, arms and spotting his sheet, pillow and comforter. And there he was just sitting sucking his thumb and poking his eye, completely oblivious.

Though I tried to find the humor in the situation, I found myself disturbed—not mad—just feeling despondent over the big picture, as was Michael. Calvin, who is now six, will be wearing diapers for the foreseeable future and likely into adulthood, if he makes it that far. So, we have a lot of years ahead of us dealing with shit.

The Facebook mother's comment, it seemed, portrayed the amusement and hilarity of her child's endearing behavior in taking off a soiled diaper, throwing the crap all around then falling asleep in it. Kids do the darndest things, don't they? Sure.

risk versus benefit

At 5:00 this morning I heard Calvin on the monitor. I ran into his bedroom to find him on his stomach with his face smashed into his pillow having a seizure. It has been twelve days since the last one, so as we say, he was due. For the past several months Calvin has been going between ten and thirteen days between observed seizures. I can remember when he went weeks and weeks between seizures but I can also recall a time when he had them more than every other day. No matter how you slice it having seizures at all isn’t good.

We find ourselves faced yet again with the dreaded drug dilemma. Hypothetically, it seems simple; increase Calvin’s medicine until the seizures completely vanish. But, when dealing with epilepsy it is anything but a perfect world, and there is invariably a downside to any benefit. Finding the right balance between risk and benefit is the real goal.

To understand our quandary, Calvin’s development has always been painfully slow; it seems to us much slower than watching paint dry or grass grow. The constant seizures further impede his development. Add one or more psychoactive drugs to the mix and development is riddled with holes. So while the ultimate goal is to have no seizures the optimum situation is to have no side effects, which is why we so desperately need a cure.

So when we see Calvin making such magnificent gains in his development, strength, balance, coordination, stamina and attention it becomes nearly an impossible decision to increase his medication for fear of disrupting all of those wonderful gains. Because who knows what causes more risk to a six year old kid, a few seizures a month or 25 mg of benzodiazepines each day?

hand in hand

Yesterday Calvin did something he has never done before; something I have been waiting for years to experience but have only seen glimpses of.

We had taken a quick trip to the grocery store. The entire time, while sitting the cart, Calvin screamed his head off. We can't tell if this mania is drug related, sheer excitement, over-stimulation or if he is trying to tell us that he wants out. Exasperated, I took him out and helped him push the cart instead. Barely tall enough to reach the handle, and unable to clench it firmly by himself, I held his hands on tightly beneath mine. He did so well walking behind the cart that it gave me an idea for later.

Up until a month or two ago Calvin would not walk away from our house in any direction. All attempts to do so were met with stubborn refusal. For practice walking in the grass I had to carry him to the edge of the yard just so he would walk back to the house, which he does with great enthusiasm. When walking Calvin wears a harness that has a strap for us to hold on to. We follow him around the house like this all day long. The harness is meant for kids who tend to wander off in places like Grand Central Station, but we use it as a walking assist. It allows Calvin to amble somewhat independently while we prevent him from any bad falls.

Once home from the store I unloaded the groceries and then unloaded Calvin. I took his hand and led him away from the car telling him we were going to try walking down the sidewalk. He did so happily and steadily. And though I had to grip his hand to help his balance Calvin did not pivot and fall, trip or refuse. He did not try to sit or tug me back in the direction of our house. He walked with such skill and enthusiasm -- simply holding my hand -- that we ended up at my friend Woody's, three houses down! Woody met me at the door and I burst into tears telling him of Calvin's accomplishment. Woody cried too.

I have been dreaming for years of the moment that Calvin and I could stroll hand in hand down the street with ease. I was overjoyed and sitting on top of the moon. It was happening right before my eyes; the day had finally come that all of our efforts carrying him, coaxing him, training him, encouraging him and supporting him had finally paid off. It felt akin to the pure, simple freedom and exhilaration of riding a bike the first time without training wheels.

running home

Within the first year or so that Calvin was diagnosed with epilepsy we made scores of calls to 911. Of those, he was taken to the emergency room of our local hospital about a dozen. At least half of those times he was transferred, via ambulance, to the Maine Medical Center which has a pediatric intensive care unit.

Those calls and visits were made because Calvin suffered large clusters of five or more seizures that recurred every 45 minutes to an hour and which often culminated into a prolonged seizure, once as long as 45 minutes. This condition is called status epilepticus and with it comes terrible risks. The longer a seizure goes the harder it is to stop. Status epilepticus can cause brain damage and can ultimately result in the failure of vital organs which in turn can cause death.

Because of the frequency of those episodes I found it difficult to leave the house. Although I had the help of a nurse taking care of Calvin a few days a week I was petrified that the one time I'd leave the house might be the time that Calvin would expire. However, I also knew that I had to live my life, take care of errands, walk Rudy the dog or simply catch a breather.

We live just a few blocks from the college where my husband teaches photography. It is a nice campus with large white pine and maple trees, beautiful brick buildings, a stone chapel and wide open grassy spaces for me to stroll while Rudy chases squirrels.

I can remember, on several of these strolls, hearing the blaring siren of an ambulance careening down the main street flanking the campus and headed in the direction of our home. Instantly my heart began to race. Panic-stricken, I broke into a full sprint and did not stop until I had run several blocks and could see that the ambulance had bi-passed our home. Only then was I assured that Calvin was safe.

And although it has been three years since Calvin's last transport to the emergency room my heart still sinks whenever I hear the sound of an ambulance.

roller coaster

There are a few scenes in one of my favorite movies, Parenthood, that always move me no matter how many times I watch the film.

In one scene Gil, a middle-aged father played by Steve Martin, is complaining about his complicated and stressful life when Grandma enters the room. Seemingly unknowingly she interrupts saying, "You know, when I was nineteen, Grandpa took me on a roller coaster . . . up, down, up, down. Oh, What a ride!" Gil responds indifferently as she continues, "I always wanted to go again. You know, it was just so interesting to me that a ride could make me so frightened, so scared, so sick, so excited, and so thrilled all together! Some didn't like it. They went on the merry-go-round. That just goes around. Nothing. I like the roller coaster. You get more out of it."

This ride we have been on with Calvin sure ain't no merry-go-round. Although our day-to-day routine is now often monotonous we have been through cork-screw turns and vertical climbs only to plunge head first into depths with such force it was hard to know whether we could hold on; all this because of Calvin.

Grandma's story struck a chord with me the very first time I heard it over twenty years ago. I've not expected or hoped for my existence to be mapped out and predictable but rather regard uncertainty as an adventure to relish. And because of Calvin I have been fortunate to experience, and honor, the full depth of my emotions, from utter despair to the kind of sheer joy that I otherwise may never have known if it weren't for him.

I too prefer the roller coaster to the merry-go-round. That ride just makes me sick.

time for meds

I came across this journal entry from January of 2008:

Almost time to give the seizure meds again. Let's hope it goes better. This morning Michael and I had to recline Calvin in his high chair and hold both of his hands, then plug his nose so that he would open his mouth to take the medicine. I put a little sweetened yogurt on a spoon and carefully placed the five tiny pills on the end with a small portion of oatmeal behind the yogurt to prevent the pills, which get very tacky when moistened, from being stuck up against the back of his teeth. So, Calvin opens up and takes the bite, as he has to, and lets the mixture just sit in his mouth. He used to be so good about taking medicine and now it is a battle every time. Then we have to wait there and hope he doesn’t push the mixture out of his mouth. We have to make sure he doesn't suck his thumb. We can’t wash it down with any liquid because he will just let the watery mix dribble down his chin, medicine and all. It's absurd. Then he cries the entire morning, like he does almost every morning. What a farce. F***ing unbelievable.

burps and giggles

Calvin has both ocular and cerebral visual impairments. His eyeballs are elongated making him extremely near-sided. Without glasses his vision is 20/1000 which means that what a person with perfect vision sees clearly at twenty feet, to Calvin looks as blurry as if it were ten football fields away. In other words, without glasses Calvin can only focus a few inches from his face. Calvin got glasses when he was eleven months old and they have improved his acuity to about 20/90. It is less obvious, however, to know how the cerebral impairment affects his vision. We believe that Calvin, like other people with the same impairment, has trouble with facial recognition. So we don't think that he recognizes us by looking at us, but rather by touching us, smelling us and most of all hearing us.

Funny sounds and music have always delighted Calvin. He has a few favorite CDs that we have heard over the years ad nauseam. Joni Mitchell's Court and Spark has been on the player -- at the very least -- three times a day for the past several years. Brazilian music he thoroughly enjoys and I think that it is upbeat melodies and rhythms that he appreciates the most.

Even before his first birthday his favorite funny noise was a burp. We were guaranteed to get giggles out of him whenever Michael or I (though usually Michael) let out some big manufactured belches. Sometimes Calvin would simply crack up, and then turn completely stone-cold sober until hearing the next burp and then crack up again.

By the time Calvin was two we were still getting mileage out of the burp antic. So when it came time to set him up for his first 24 hour EEG I came prepared. For a little over an hour Calvin sat in my lap while I restrained his arms. Two technicians had to part his thick hair, measure and grease-pencil markings on his scalp then paste, gauze and glue 28 leads to his head with collodion, a syrupy solution of pyroxylin in ether and alcohol. The gauze and collodion was dried with frigid-cold air that came screaming out of a rubber hose. Not a fun thing for anyone to endure. The only thing that got us through in decent shape was burps and giggles, burps and giggles.

luck with a hard stick

Four years ago today, when Calvin was just two, he was in the hospital after having been there for several days. He had been admitted to the Pediatric Intensive Care Unit after having had a series of seizures. He stabilized and was moved to the main pediatric wing. The morning of the third day I was lying in the hospital bed with him after having given him his meds. He seemed to be zoning out and I could feel the rapid heartbeat in his tiny chest. I kept calling in the nurse and the young resident physicians telling them that something was wrong, that Calvin wasn't himself and that I was concerned it might be a seizure, although I hadn't seen anything like it before. I pointed out the faint, rhythmic twitching of his lips. The medical experts were flummoxed.

I called them in a second, a third and a fourth time when the waves of rapid heartbeat and twitching returned. Still they were confounded. One doctor performed what is called a sternal rub, grinding his knuckles into Calvin's delicate sternum to see if he would respond, to which Calvin only slightly recoiled and remained semi-responsive. And while I was quite distraught the doc was still uncertain if Calvin was seizeing and thus continued on his rounds.

I pleaded for the on-call neurologist but he never appeared. This dreadful cycle continued for four agonizing hours until it culminated into a full-blown convulsive seizure. The first two doses of rectal Diastat (Valium) and a subsequent dose of Atavan failed to stop it.

Luckily, when Calvin had been admitted to the main wing I had insisted, as a cautionary measure, that they give him an IV even though he seemed stable. I had explained that Calvin was a very "hard stick"; his low muscle tone made it difficult even for the very best technicians to find a vein. I had learned an important lesson once when Calvin suffered a 45 minute seizure due, in part, to the fact that it took the doctor 20 minutes to find his vein and administer the emergency medication.

This time, thankfully, a bolus of Fosphenytoin was easily fed into the IV and Calvin's seizure activity finally stopped after nearly four and a half hours.

the truth about epilepsy

Epilepsy kills. It kills our children, our parents, our grandparents and our siblings. It is not a benign disorder where you take a pill and everything is okay. It's just not.

Epilepsy affects over 3 million Americans of all ages, 300,000 of whom are children under fifteen.
Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.

About 200,000 new cases of seizures and epilepsy occur each year and it is estimated that up to 50,000 people will die each year from epilepsy or seizure related causes. These numbers are nearly identical to breast cancer and yet epilepsy is still an obscure disorder to most people. Epilepsy is stigmatized, misunderstood, feared, overlooked and therefore grossly under-funded.

Those who have epilepsy and are lucky enough to have their seizures controlled by medication suffer drug side effects which can be debilitating in and of themselves; dizziness, poor coordination, visual disturbances, trouble with balance, insomnia, drowsiness, confusion, abnormal thinking, fatigue and depression to name just a fraction.

Those who don't benefit from medication risk brain damage, mental retardation, hospitalizations, exorbitant medical bills and sudden death.

Please share Calvin's story and choose to dispel the myths of epilepsy. Advocate on behalf of all of the children and adults who suffer needlessly and become a champion of epilepsy awareness. Decide to make a difference, it's not hard, just do it one story at a time.

grief

Grief practically strangled me during the first few years after Calvin was born. Though we did not lose our child the way some unfortunate parents do, we suffered a great loss nonetheless. We lost -- albeit never had -- the pure joy of a healthy child. We lost the chance to delight in seeing our child run and play with other children. We lost the hopes and dreams of any parent whose child wakes up in the morning only to scramble into bed with them and beg for what the day might promise.

At first I found it difficult to look at pregnant women. I felt sheer envy of what they were about to experience that had been robbed from me. Every time I visited the grocer I came home sobbing having seen countless bouncing babies sitting upright in their carts, locking gaze with me from afar, rummaging through their mother's purses with supreme dexterity or quite simply not crying, but rather taking in the experience as if it were honey. Life was so carefree and joyous for those mothers.

My child could not support his own head let alone sit in the cart. He could see only inches from his face and his beautiful indigo eyes jerked and roamed in their sockets. He could hold nothing and he cried and cried and cried. I loathed going to the grocery store for I couldn't avoid these images that were looming around every corner.

Once, I received an alumni newsletter from my Alma Mater. On the cover was a photograph of a fellow graduate with her husband, two grade-school children and her healthy nine-month-old quintuplets. To look at it nearly made me ill. I had to throw it immediately in the trash as tears streamed down my face. My friend, at seeing my reaction said something like, "you gotta get over it."

Don't let anyone tell you that there is a time-limit on grief.

goodbye cheetos

Cheetos and graham crackers were two of Calvin's favorite foods when he was littler. He didn't learn to chew well until he was almost two years old. These snacks were recommended to us by his occupational therapist because they were easy to hold and dissolved in his mouth, and therefore he wasn't likely to choke on them. And boy did he love them! Little did we know that was all going to change.

Early on, my research into epilepsy and its treatments had lead me to the Ketogenic diet. Purportedly the diet could in some cases cure epilepsy, though the medical establishment has been slow on the uptake. This high-fat, low-carb dietary treatment, best used by children, was developed in the 1920's to mimic fasting - a measure used since Hippocrates and biblical times known to stop "fits". With the advent of the first anti-epileptic drug, however, the diet fell into relative obscurity in favor of a quick fix - a pill. Staples of the diet include butter, mayonnaise, oils and heavy cream. Protein and carbohydrates are severely limited and patients must be monitored by a physician and specially trained registered dietician.

The diet's use is on the rise and is starting to be recommended after the second failed anti-convulsant drug. Some statistics show a third of children enjoying a 50% reduction in seizures and another third getting a greater than 90% improvement while a percentage of these kids can become seizure free even within days of starting the treatment. The final third who try it either cannot tolerate the diet or do not experience any benefit. Unfortunately, Calvin was in this category.

Most kids who benefit stay on the diet for an average of two years. After being seizure free on the diet for one year the weaning begins. Some kids remain seizure free for the rest of their lives and some must go back on the diet because of a return in their seizures and the process starts over.

For more information on the diet please contact:

http://www.charliefoundation.org/

hoping and wishing

I can remember when Calvin was about to turn three, a year after having been diagnosed with epilepsy. He had just begun his third anti-seizure drug as the first two had failed. His balance and coordination had improved and I was hoping and wishing that he'd be walking on his own by his birthday. Unfortunately, the new drug, like the last one, had to be continually increased in an effort to thwart his seizures. With each subsequent seizure and dose increase he went further into a kind of stupor and he began loosing newly acquired skills. The independent walking has never happened.

From the time he was four until he turned six Calvin's development was, at the very least, stunted. During that period he was taking three seizure drugs and had begun the rigorous, high-fat Ketogenic diet. Calvin's severe regimen caused his smile to fade into oblivion and his bright eyes to become hollow, vacant disks. He was lethargic, weak, often sick, drowsy, uncoordinated and apathetic. We were losing the boy we had come to know, right before our eyes, and I wasn't sure we would ever get him back. Yet despite all of the weapons used to target his seizures their numbers and intensity persisted.

I can't help but continue to wonder if the treatments are as damaging and lethal as the seizures. I continually ponder, if it weren't for the drugs, would Calvin be walking by himself? What kind of boy would he be? What mischief would he be getting into? What words would he be saying? What would he be hoping and wishing?

bumbles bounce

I am often reminded of the quote by Ukon Cornelius, the famous gold and silver prospector from the animated classic Rudolf the Red-nosed Reindeer. Yukon, thought to be dead after having fallen off of a cliff during a scuffle with the Abominable Snowman, arrives with him at the north pole. In response to everyone's astonishment that he survived the ordeal he retorts, "Didn't I ever tell you about Bumbles? Bumbles bounce!"

Well, Calvin is my own precious little Bumble. Every time he gets knocked down he picks himself right back up. Countless seizures relentlessly batter him yet somehow he recovers with amazing resilience. He takes a tumble and bounces back. Along the way he has sustained his share of bumps and bruises, scrapes and scratches, and who can know what his brain suffers. But it all goes to show us that behind his mild features, small stature and impish grin we have a pretty darn tough little kid.

Our good buddy Garzeloni, after hearing about a bad fall down some stairs when Calvin was just two, and learning that he came out of it virtually unscathed, gave Calvin the endearing nickname of, (and please excuse my french here), Mother-F***ing-Badass. I thought that was not only appropriate, but utterly hilarious.

Thank goodness Bumbles bounce.

always trust your gut

When I crawled into bed last night I said to my husband, “I hope Calvin wakes up in the morning.” Something in my gut just didn’t feel right, so I turned up the volume on the baby monitor that sits on my bedside table. Then at 2:30 this morning Calvin had a seizure. At between two and three minutes long it was pretty typical of the kind he has been having for nearly three years. First he lets out a cry and then he starts convulsing. We turn him on his side to prevent aspiration. About 45 seconds pass when he begins a rhythmic, constricted breathing that sounds as if he is choking. After another 45 seconds a terrified expression appears on his face as he stiffens and trembles, and it is at this point that I know the seizure is coming to an end.

As soon as it stops we bring him into bed with us for the rest of the night where he often has what we call aftershocks – intermittent bouts of short tremors – for the next few hours. Just four months ago it was not uncommon for Calvin to have two or three of these grand mal seizures in a night several times each month, but things have improved of late, at least for now.

Paradoxically, the recent improvement coincided with weaning Calvin off of one of his older seizure meds. I had been dubious about the drug for years, noting that as his dose climbed we observed zero improved efficacy coupled with increased apathy and lethargy. Moreover, Calvin did not suffer this kind of frequent grand mal seizure until he reached higher levels of the drug. So I questioned, then campaigned to get him off of it.

Always trust your gut.

holy jeans

Most of my favorite jeans have holes in the knees and I so consider them both holey and holy. Although I don't mind the look, the tattered holes are not intentional. Those ripped knees are the product of countless months of teaching Calvin to crawl. He did not learn to crawl of his own volition. Practice crawling was a daily exercise that he endured with some reluctance, at least at first. Teaching him was both arduous and monotonous and 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.

Learning to crawl was hard work for Calvin. He could not hold his head up well if at all. His little arms were weak and he did not coordinate his movements much less understand why he had to. Down on all fours 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 rehearsed this unremittingly for months on end until we got results.

Calvin has never crawled very far or very well, but he crawls nonetheless. Even now it is sometimes, though rarely, his mode of transport. It is sheer delight to see him with a desired goal in sight and, with great enthusiasm, scramble to reach it.

I have become very fond of all of my holy jeans.

dream-talk

Last night I dreamt of Calvin, which isn't unusual. In most of my dreams of him, however, he is having a bad seizure. I know I dream in color because in these dreams I can see that his hair is auburn and his face is blue. Thankfully I wake up from these dreams as they are as distressing as the real thing.

But last night's dream was different. The three of us were on holiday together, which in reality has happened only once in over four years. In the dream Calvin had fallen and banged his mouth. When I heard him cry out I came running. I asked him what hurt and he pointed to his mouth and tried his best to utter words to me.

I know that to some this dream may seem kind of sad, but to me it is full of hope. Maybe it is some sort of window into the future. You see, if Calvin could learn to point deliberately everything would change. Pointing is a foundation of language. If only he could communicate his needs and desires, or be able to tell us what hurts.

When I was pregnant with him I dreamt that he was born chattering. I still believe in my heart that one day, hopefully soon, I will hear him say "mama".

june 2005

drugs, drugs, drugs

Calvin has never experienced life drug-free. He has had to take drugs since he was born for a myriad of reasons. For seizures: trileptal, keppra, depakote, clonazepam, zonegran, lamictal and clobazam. For gastro-intestinal: lactulose, reglan (caused seizures), erythromycin, zantac, myralax and milk of magnesia. For sleep: neurontin and melatonin. As needed while on the Ketogenic diet: potassium citrate and carnitor. Antibiotics for pneumonia, eye infections and ear infections: cefprozil, azithromycin, erythromycin, amoxicillin and bacitracin. And I know I have forgotten some.

With many of the drugs it has been unclear as to whether they have helped him or not. One thing that is clear to see is the side effects he experiences, particularly with the anti-seizure meds: insomnia, drowsiness, dizziness, headache, somnolence, nystagmus,  diplopia, ataxia, anorexia, hypotonia, respiratory suppression, aphonia, confusion, abnormal thinking, nervousness, fatigue, weight loss, agitation, irritability, nausea, anterograde amnesia, unsteadiness, tremor, impaired attention, hyperactivity, drooling, vertigo, impaired memory, depression, loss of appetite and restlessness just to name a few.

But Calvin is a trooper. His resilience and tenacity are formidable. He just keeps on keepin' on. And it is because of Calvin that we persevere in the same way that he does.

shadowy abyss

My heart shreds into tiny pieces every time I see Calvin have a seizure. It is agony to see his perfect little body stiffen and jerk. His supple lips turn blue, his buttery soft skin becomes morbidly ashen and his limbs convulse and clench and shake. It is my torture to watch his suffering, to see the terrified expression on his face, fearing what he might be seeing or feeling. The emergency Valium is bitter-sweet. Maybe it offers Calvin’s brain an escape; some respite from the waves of electrical activity that surge and spike and burn. It sends him into oblivion. I don’t believe in hell but each seizure sends me into my own shadowy abyss.

washing hands

For several weeks now when Calvin gets off of the school bus from kindergarten we help him out of his hybrid stroller-wheelchair. We assist him up the deck steps and into the house. We proceed into the bathroom where we practice washing hands. Sometimes Calvin is hesitant when asked to do new things and it takes a long time for him to learn new skills (which is an utterly gross understatement.) So at first Calvin would retracted his hands when we held them under the tepid water. But yesterday, after weeks of practice, Calvin put his hands under the faucet all by himself and touched his fingers together as in washing. I was so proud of him. When I stop to think of it, however, I realize I am proud of everything that Calvin accomplishes in any given day. It is his fighting spirit in the face of seemingly insurmountable impediments that he succeeds.

it gets harder

From January 2008

They say it gets easier. They’re wrong. It gets harder. The seizures become more frequent. First every six weeks, then every two weeks, every ten days, every week, twice a week. Anti-seizure drugs continue to go up and up and up. I hate opening these blue-white and orange-white capsules to sprinkle the mysterious white powder into his yogurt. If he takes a breath he’ll inhale the dusty powder and it makes him cough and grimace. He is so dutiful. He doesn’t want to take it. I tell him it is his medicine and it will make him feel better. Maybe it actually makes him feel worse. I don't know. He can't tell me. I say “take one bite for Mama” and he does. All the while I am feeling like it is some sort of evil concoction. Who knows what it does to his brain? The chemists don’t even know exactly how or why they work, if they work.  Then there are the tablets; the small square ones with rounded corners, the ones with GX 52 embossed on one side. He is starting to refuse his yogurt and I can guess why. He knows. We need a way out of this medication nightmare.

friday first day

I woke up the other day, turned 47 and started this blog. I am not completely sure what I am doing or how to do it. All i know is that I have to do it.

For years I have been racking my brain for ways that I can make a difference in the world on behalf of epilepsy awareness, funding, treatment and the quest for a cure. I guess the best way is to start with baby steps. Here is where I can take a lesson from my six year old son Calvin, to whom I dedicate this journal.  He is my hero, my inspiration and the one who makes me want to be a better person every day.

Calvin has had intractable epilepsy since he was two years old. Since then he has suffered hundreds of seizures of all types, including one forty-five minute convulsive 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.

This blog is meant to demystify and destigmatize epilepsy. It is meant to enlighten the public as to the nature and scope of the disorder. It is meant to offer support to other families who are touched by epilepsy.

I hope I can make a difference.