4.16.2014

simply splendid

It was a simply splendid evening. Thanks to everyone—to local establishments who donated food, to pro bono musicians and bartenders, to generous friends near and far—who helped us raise over $16,000 at our CURE epilepsy benefit, not including receipts from the event itself. Your compassion warms my heart.
Please Join us by giving only what you can at http://www.calvinscure.com

Click on photos to enlarge.






















if you haven't already, please give to CURE epilepsy at http://www.calvinscure.com

Please join me in thanking the following establishments
for their generous contributions

Aki Sushi & Hibachi
Bath Sweet Shoppe
Big Top Deli
El Camino
Empire
Enoteca Athena
Flipside
Frontier
Frosty's Donuts
Hannaford
Henry and Marty
Little Tokyo
Pastry Chef Patrick Jones
Trattoria Athena
Zu Bakery
Wild Oats Bakery
Solo Bistro Bistro

4.14.2014

day eight

I was going to write about the CURE epilepsy benefit we hosted last Saturday night, about my man-catcher choker, about how I wept seeing all the tasty food our local restaurants donated, about the band, the bartender, the bodacious blondes and brunettes (guys and dolls) shaking their groove things on the dance floor, about friends from near and far, who signed up, picked up, setup and cleaned up and who helped us raise over $15,000, not including the receipts from the benefit itself.

Instead, I’m writing about the seizure Calvin had this morning at 1:30. I heard him coming out of it, heard that unmistakable constricted breathing like a death rattle. Yesterday, all day long I’d been dreading its arrival, had sensed its imminence for three days and had logged it in my journal:

no smile coming off bus. stubborn. dropping down. eye poking like crazy lately. crazy in jumper. seizure coming. crazy in bath. lots of hypercough. stubborn on way to woody’s. INTENSE. pulling hair. seizure coming. whiny. restless night. not hungry or thirsty. no a.m. nap. crazy in car. *hot hands. *red cheeks in store. ABSOLUTELY CRAZY BATH (took him out after one minute). gazing up and to the right w/shifting eyes in car. pounding heart. seizure on the way.

Instead of writing about the benefit and sharing photos, which I will do later, I’m asking each one of you, Readers, to channel your undeniable compassion for Calvin into funding to CURE epilepsy. Give only what you can at http://www.calvinscure.com

4.11.2014

help us CURE epilepsy

In honor of Calvin's tenth spin around the sun, and for the millions like him suffering from epilepsy, please give what you can to help CURE epilepsy now at: http://www.calvinscure.com

click to donate to CURE epilepsy

4.09.2014

my sustenance

Often your post is what I intentionally read last before bed. That way I go to sleep thinking about important things rather than about work or the very minor stuff I worry about during the day. Thank you for that.

—Paul


I just had a moment to catch up on your blog. I hear the hurt that the positive effects of the current therapy are so slow, so tenuous that one begins to disbelieve that things can change. It has some analog in the seasonal despair of mud season. A Maineish slough of despond: there ariseth in [the] soul many fears, and doubts, and discouraging apprehensions, which all of them get together, and settle in this place; and this is the reason of the badness of this ground. Like mud season, I hope to see it clear soon, but I can't promise any time table on which you will be relieved of this heart-wearying struggle. Keep on. None of us can anticipate the best changes, in ourselves or in others, that time will bring. You gave, I think, the best defense of hope some weeks ago. We must embrace it for without it we are lost.  

—Madeleine


I'm so sorry, Christy. With the label on your post "despair" I can feel the weight from your home to mine. If I had posted within these last few difficult months, there would be a label of "resignation." I am in awe of the sadness of epilepsy, of how it drains the life from its sufferers and drains the color from the caretakers' lives. My heart is with you today.

—Amy


I'm listening. Sometimes I cry when I read. I have nothing else to offer.

—Julia


We haven't corresponded much this year, but I've thought of you and your family many, many times over the past 12 months. Calvin's picture remains on my computer desktop and I continue pray for his health, peace and well-being (as well as yours and Michael's) every day I see his picture.

—Timothy

4.07.2014

day five

day four

purple crocuses bore through bark. sun sparks. kid walking blocks and blocks. hand in hand. sidewalks caked in sand. slight breeze. fifty degrees. mercury’s silver pipe reads fair. winter’s glare has scorched the leaves. in its reprieve they curl into frozen spasms. some, still rooted in their icy chasms, may not survive the melt.

his grinding teeth sound like sand beneath boot. i feel it in my marrow. his pair of eyes rove and jerk. he goes berserk. my boy is not himself—whatever that is. fingers frantically snapping. its half-life met, the benzo withdrawal compels. it’s going to be hell.

day five

four thirty. the cardinals chirping. i hear him choke. i quickly unfasten the canopy ropes. his face is pale and he fails to meet my gaze. his hands turn clammy. the seizure makes his gut churn and creak and groan. i slide in beside him. he moans and pulls my hair, claws me like a bear. his head must drum. for an hour he shudders and writhes and whimpers and hums.

he wakes up cackling. something must hurt. he's cracking. his tummy must feel sour. he spends the first hour with his head in his hands, finger in his eye if he can. he coughs and whines and drools. i keep him home from school. he wants out of the jumper. he wants in. he wants out. he wants in. he flails and shrieks and stomps. rudy pants and tromps around the floor. i try to comfort my poor ten-year-old boy who is suffering withdrawal. i’ll try to be his steely pawl.

a cannabis man is coming by soon. i want him to grant calvin the moon, offer some hope. i feel we’re at the end of our rope. but i won't let go. no. no matter what, i won't.

4.04.2014

birds and stars and broken circles

He flops forward in between his crossed legs, face first into the water. His nurse fishes him out, water cascading down his limbs into the bath. She carries him to the bed, starts her timer, covers him with a towel and dabs his wet skin. After two-and-a-half minutes she calls me on the emergency cell. I jump, because I know what she is going to say, but can barely hear her so I tell her we’re coming straight home.

Once home, I tiptoe upstairs. She’s sitting next to his bed, its safety panel down, and I can see his sleeping face, which is flawless and wan like a an eggshell. His hands were blue up to his wrists, she whispers, he didn’t breath for at least a minute.

Though the seizure was just after 4:00 p.m., he’ll sleep twelve hours, waking only for his medicines and a diaper change.

Michael and I warm our dinner in relative silence, thankful for the lasagna that our neighbor Barbara left on our doorstep the night before. We eat it while watching The Broken Circle Breakdown. As the subtitles roll the film unfolds into a drama about the parents of a little girl suffering from leukemia. Because of our bad memories of hospitals, we’re not quite sure we want to watch, but something about it compels us. Maybe it’s the tattooed Belgian cowgirl and her carefree ways. Perhaps it’s her ruggedly handsome boyfriend, the smitten one who plays bluegrass in a band of bearded minstrels. Or maybe it’s their little girl, a few years younger than Calvin, who has the same perfect skin that sallows with the chemo even as her hair falls out of her head.

Tearfully, we make it through the film, which weaves its way in and out contemplating the existence of God. It holds both sides equally well, making the case for a Godless universe and one where spirits come back as birds and stars. To me the arguments aren’t incongruent. Nature is God. God is nature. It’s as simple as that. No sadist God exists to punish little children, take sides in wars, inflict suffering on the masses, answer some prayers but not others. It's as simple as the fact that bad things happen to good people, like me and Michael, and Calvin, like that sweet, ill girl and her parents.

I go to bed feeling so sorry for my little bird who has to suffer so much, his headaches and tummy aches and cramps and seizures and side effects. He suffers the burden of not being able to tell us what hurts. Sometimes I wonder if he hears voices or sounds, sees apparitions, brought on by the drugs he takes to quell the seizures. I wonder if he knows the sound of a bird, which is not unlike the trills he sometimes makes. I’m sure he’s never seen a star to know what one is.

They say the universe is infinite. So too, then, is its suffering, its beauty, its mysteries, its despair, circling around us in ever-expanding orbits.

I’m tired. I am not the person my husband married. I’m stuck between these four walls listening to a whimpering kid who I can’t seem to help no matter what I do. Even Rudy paces in broken circles around the house. It’s what we do. Our days are as infinite as they are numbered.