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.