cold april day

As I walked into the open field with Rudy I began to cry. The diamond was flanked by fans dressed as I was in their long down coats, hats and scarves that belied the sunny April day. Behind the outfield barrier two boys no more than five or six tossed a ball and ran around an imaginary diamond of their own. I thought about my brothers' baseball games when I was a kid. I never watched them with my mother. Instead, I scampered around under the bleachers with friends making jokes about Seymour Butts and eating frozen MilkShake candy bars purchased for ten cents at the concession stand window. I could roam where I wanted. I was free. I was healthy.

As the two boys played tag, the littlest outpacing the older one in a burst of energy, I thought of how I'd been small and quick and how Calvin might've been too. And with that thought my throat thickened and ached watching the boys do little boy things with confidence, agility and freedom. Not my Calvin, I thought, never my Calvin, and I cried into the scruff of my jacket thinking of what a good mother, good coach, I'd have been for such a boy if he were mine.

My tears were as much for me as for Calvin who was at home spinning like a top at the fingertips of a new nurse who I'd spent the day training. I felt guilty leaving the house since, because of Calvin's increased mania, I'd been expecting a seizure for over a day.

At home I got Calvin into his high chair for dinner. As I chopped some chicken and Brussels sprouts I replayed the day in my mind—Calvin's quiet morning, his odd shriek at the end of a frenzied bath, his low-grade temperature, his raving, his pale face and flushed cheeks and space-outs in the car—all repeats of the day before. But after a decent dinner, a poop and a diaper change, I escorted a much calmer Calvin downstairs, walking down backwards in front of him holding his harness to prevent a fall. I praised him for his enterprise and was rewarded by his gleaming smile that dissolved orange-pink into my heart. But then something snapped. His eyes blinked and froze into an upward gaze as if he'd seen a ghost. Calvin stood paralyzed on the steps like a statue. I knew that what I'd been dreading had arrived, so I picked him up and carried him to the couch. He squirmed in vain to free himself from the seizure's grip as it took hold sending tremors from his head down to his little white socks.

No matter that I've seen my boy have hundreds and hundreds of seizures, I'm always surprised and distressed by the kind of violet that stains his fingers, hands, toes, ears and lips. It's beautiful and horrible. The shade of bloom and death. The color one fears will never fade to blush. The color no mother of a beautiful child should be reminded of when the tips of purple crocuses come up on a cold sunny day in April.

sacredness in tears

There is a sacredness in tears.
They are not a mark of weakness,
but of power.
They speak more eloquently
than ten thousand tongues.
They are the messengers of
overwhelming grief,
of deep contrition and of
unspeakable love.

—Washington Irving

AEDs

Recently, I spent part of a day reading through Calvin's journal—day by day—where I record things about his behavior in an effort to see if I might notice a pattern due to his various AEDs (anticonvulsant drugs). This is what I found:

On Clobazam alone:

eye poking

lots of inappropriate laughter

hands on ears

screaming in car & grocer

happy bath

sleeping well

decent seizure control

good walking

HUNGRY

space outs

flushing

fingering

crazy @ lunch and dinner at higher doses

On Clobazam with the addition of Banzel:

good appetite

manic after meals lunch and dinner

flushing

poor sleep

active baths

efficacy unclear. increased seizures at higher dose?

space outs

eye poking

fingering increased

SCREAMING

irregular sleep and hard going down

non-stop moving

gassy (burps)

poor gait

When the seizures slowly increased we added a third drug, Keppra:

poor appetite

HYPER

extreme weight loss

fewer seizures

irritable

no eye poking

improved sleep

WIRED

lots of seizures in March 2011

prickly rash on butt for weeks

HYPER

hands to ears

poor balance 

And, every morning and every night when I have to give Calvin six to nine anticonvulsant pills, I become sick to my stomach, too.

friday faves - life just is

Recently, in a conversation seemingly about spirituality, a man told me that my son's afflictions exist so that he and I can learn something for our next reincarnation. I took it to mean that Calvin's suffering is intended to teach us both some lesson. I debated with him and, as nicely as possible, told him that I thought his theory was bunk and that no child should have to suffer simply to teach someone a lesson. I went on to suggest that if he had a child like Calvin, or a child with a chronic or terminal illness, he might feel differently. He had no reply.

It’s not uncommon for people who meet me and learn of Calvin’s hardships to say, “everything happens for a reason.” I usually try hard to suppress my disdain for what I believe to be an erroneous, though well-intentioned, theory. My response is simply to tell them that I don’t regard the premise to be true, but rather, that I to choose to construct meaningful outcomes from life’s experiences, much like choosing to see the glass half full instead of half empty.

Another phrase I have heard often over the years is, “life’s not fair.” I never really cared for this assumption either. It has always seemed to me—even when I was a child—that life is neither fair nor unfair. Life just is, or as some might say, “shit happens.”

Some may hold fast to these beliefs perhaps to find solace in the presence of suffering, to somehow understand why suffering occurs at all, and to make sense of something so utterly senseless as a profoundly ill and debilitated child. And although I myself have wondered at times why Calvin is so afflicted—at the same time wishing he were not—I find no comfort or faith in the idea that some greater purpose has been designed that requires it of him. Rather, the knowledge and conveyance of this belief, especially by those who do not know what it is like to love and care for a child who suffers such extensive disorders, honestly turns my stomach.

I have no want for that kind of solace, in fact it's not solace at all. I need only to be there for Calvin and to put all of my effort into finding a way to lessen or stop his suffering. I could choose to wallow in self-pity over my sick child while trying to console myself with some feeble, perverse notion in an attempt to put it all into some sort of neat context that explains it away and makes it all okay. Instead, I choose to seek out and underscore all of the incredible things that I experience because of Calvin, and simply be content to know that he is who he is, not owing to some deliberate plan or design nor because he exists in this condition to teach others a lesson. And since life just is—which resonates deep within my bones—and while I am here, I will make the most of it as it keeps coming my way.

Version originally published 11.26.10.

photo by Michael Kolster

thank you dr. king

An individual has not started living until he can rise above the narrow confines of his individualistic concerns to the broader concerns of all humanity.

I believe that unarmed truth and unconditional love will have the final word in reality. This is why right temporarily defeated is stronger than evil triumphant.

—Reverend Dr. Martin Luther King, Jr. 

Forty-five years ago today civil rights leader Dr. Martin Luther King, Jr. was killed by an assassin’s bullet in Memphis. His message continues to resonate for all, but particularly for those who continue to be discriminated against, maligned, neglected, hated and/or suppressed: women, people of color, gay men, lesbians, bisexual people, transgender individuals, immigrants, veterans, homeless people, the poor and the disabled. Thank you Dr. King for your ongoing contribution to the betterment of society.

Image from the Library of Congress

seven weeks

 

photos by Michal Kolster

ask for what you want

Yes, I have hope. And I guess I'm some sort of an eternal optimist, sometimes seeing only small points of light but ones that vibrate and grow and warm my despair.

Michael warns me that there is no silver bullet when it comes to Calvin, but I have to keep looking for it because it just might exist.

There are some people who drive to an event in a busy city and park six blocks away because they think that’s the best they can do. I always look right out in front first and inevitably there’s a big fat juicy watermelon—you know, a primo parking spot—just waiting for me. In San Francisco my friends told me I had amazing parking karma. I always figured that—besides driving a sweet 1967 mustang 289—it was simply because I looked for exactly what I wanted instead of settling for second best without even trying.

The same might not be true with Calvin's health—with his epilepsy—but if I don't look for that silver bullet, I most assuredly won’t find it.

photo by Michael Kolster