two wolves

An old Cherokee told his grandson, "My son, there is a battle between two wolves inside us all. One is Evil. It is anger, jealousy, greed, resentment, inferiority, lies, and ego. The other is Good. It is joy, peace, love, hope, humility, kindness, empathy, and truth." 

The boy thought about it, and asked, "Grandfather, which wolf wins?" The old man quietly replied, "The one you feed."

Ghost Heart by Kirby Satler

on the brink

I’ve felt a seizure coming on this entire week. In Boston last Monday the neurologist gave us the go-ahead to temporarily increase one of Calvin's anticonvulsant medicines for just a few days in an effort to stave off suspected seizures. The strategy seemed to work, that is, until last night.

All week long Calvin has been having manic episodes. Since bumping up his seizure medicine beginning Monday night his crazy behavior has escalated, but we were unsure if it was a result of the added dose or a reasonable hint of a looming fit.

Yesterday Calvin’s nurse noted his excellent balance on the back deck steps, needing little to no help going up while not even holding onto the railing. “Hmmmm,” I murmured with a bittersweet air, semi-enjoying the improvement in his skill while knowing it likely meant a seizure on the brink.

As I baked a rare batch of cookies the nurse gave Calvin his bath. He immediately began laughing hysterically. At moments I shuddered at the raving, demented cackles that tumbled down the stairs. As soon as the cookies came out I went up to relieve her for the day. We noted a faint mark on Calvin's back and suspected it was a mild hickey I’d inadvertently given him earlier, though not his first one. “He’s so kissable and ticklish on his back,” I remarked. She knowingly chuckled.

We reviewed the day as Calvin splashed excitedly then said our goodbyes. As she headed down the stairs I admired the new tattoo on her ankle. I quickly turned round to see my boy cross-legged, folded in half forward with his face submerged in the water before him. Then he tensed and let out a strident shriek like air squeaking out the stretched neck of a balloon. “Here it is!” I yelled and the nurse raced back up the stairs. I plucked Calvin out of the bath. He appeared like a corpse with rigor mortis and felt like a wooden stool. He was awkward to carry in this shape, his frame contorted in a grotesquely crooked arch. With his long stiffened body I minded the door jams as I whisked him to our bed.

The nurse and I lightly covered him in towels and spoke loving words to him. We told him it was almost over. “My sweet, sweet boy,” I whispered into his ear, smoothed his wet hair back from his face. He began taking gruesome, raspy breaths, but breaths nonetheless, though he was still in the heart of the storm. After several minutes he started coming out of it. She stayed with him until I had cut his pills, drawn up his potassium citrate and made a yogurt, oil and applesauce seizure meal. I propped him up on several pillows and I spooned in his medicine just before his eyes became leaden and he drifted off to sleep.

As I wrote this, perched in a chair pulled up alongside our bed, I watched him sleep, fearful of another seizure upon his waking. Michael, having just arrived home, put dinner together. The clang of pots and pans and light music drumming up through the floor consoled me. Through the wide open windows in our bedroom I heard the rain begin to fall as the white sky lit everything aglow in the dimming light of evening. We need the rain, I thought. It’s so dry outside—parched really—like the coarse gravel of a crow’s squawk, the harsh buzz of the cicada, or the loathsome sounds of my little boy’s seizures.

ruined

Often, especially when I look into Calvin’s pure blue eyes, I wonder what went wrong, what ruined him. Saying that doesn’t mean that I don’t love and cherish every little bone in his body, every tiny capillary, each feathery hair, all his millions of emerging cells, the very marrow of his bones. Even so, he’s not right—not healthy—and since he’s not we have to pump him full of chemicals every morning and every night in hopes they'll make him right. What a sick joke.

None of these so-called promising anticonvulsant drugs has stopped my little boy’s seizures. He’s been ravaged by them (the seizures and the drugs) since he was two years old. I'm constantly looking to find another way, perhaps a better way.

At lunch the other day, for the first time in over a year—maybe two—Calvin ate a vegetable. It’s not that he doesn’t like vegetables, it’s that I thought I saw a pattern of seizures occurring after he ate them as he subsequently suffered painful gas, which can also trigger seizures. Perhaps it was simply mere coincidence. But in recent months his muscle tone and digestion have improved. So the other day I gave him broccoli with his chicken, mayonnaise, yogurt and blueberries. He liked it ... a lot.

My hope is that we can boost his immune system, which when compromised by a virus or infection, lowers his seizure threshold. I aim to try whatever it takes to rid our son of his affliction. I’ll then try acupressure, acupuncture, hell, I'd even try voodoo if I trusted it in my gut and thought it could work. I'll just keep trying one thing at a time and perhaps some day we’ll hit the jackpot.

Best thing, though, would be to find Calvin a cure; to right this ruined kid who gets more and more wrecked with each seizure and with every bitter dose of pharmaceutical chemical soaking into his brain.

Please share Calvin's story with others. Help bring us one step closer to a cure for epilepsy. It's not hard. Just do it one story at a time.

altruism

Recently I heard a story about a little girl from the town I grew up in, Rachel Beckwith, who suffered a spinal cord injury in a car accident with a semi. She was riding in the car with her mother and year-and-a-half old sibling. Rachel’s side of the car sustained most of the impact of the eighteen-wheeler logging truck. Nine-year-old Rachel was later taken off of life support and died.

I’d like to think that Rachel wasn’t a special kid; that most kids are like she was. I’d like to believe that because she was so selfless. For her birthday last June she told people she didn’t want any gifts. Instead, she wanted to raise money for a charity that drills wells and brings fresh water to people in developing countries. She was just shy of her three hundred dollar fundraising goal when she died. The story of her death ran on a local newscast and donations to the charity quickly grew to six thousand dollars. Within a few hours, after a couple of celebrities tweeted her story on Twitter, her fundraising total approached $150,000.

Rachel’s story reminds me of what a difference just one person can make in the world, how a single individual, even a nine-year-old, can improve the lives of so many others by such a simple charitable act. She must have had amazing parents who taught her the value of altruism instead of selfishness and greed.

I’d like to think that Calvin might have been altruistic like Rachel if he had been able to, somehow, avoid the bitter circumstances of his terrible afflictions and, instead, lead a life with some semblance of normalcy capable of aiding others. Somehow, I think if Rachel had survived, she—and perhaps her own children—might have helped kids like Calvin. And though that isn't going to happen, maybe there are other people out there—other adults, other kids—who will. Imagining that brings a huge smile to my face.

Rachel Beckwith, photo King5.com

seize [ sēz ]

verb

1 [ trans. ] take hold of suddenly and forcibly.

° capture (a place) using force.
° assume (power or control) by force.
° take possession of something.
° (of a feeling or pain) affect (someone) suddenly or acutely.

2 [ intrans. ] (of a machine with moving parts or a moving part in a machine) become stuck or jammed.

3 fasten or attach (someone or something) to something by binding with turns of rope.

boston bound

Yesterday we took our quarterly trip to Boston to see Calvin’s neurology team. We said goodbye to Rudy the dog and pulled out of our driveway at seven. I sat next to Calvin and fed him breakfast in the car, sustaining only bruises to my psyche from various pings and biffs from his uncontrollable flailing fists. I had already reached my boiling point before we even merged onto the highway heading south.

The remainder of the trip, after breakfast, was uneventful and I even found myself taking seconds-long cat-naps, waking when I heard Calvin quiet, just to make sure he wasn’t having a seizure or to stop him from poking his eyes.

We arrived at the hospital early and the first order of business was to change a poopy diaper, followed by sticking (literally) an awkward plastic urine collection bag on Calvin to analyze anything we’d be able to catch in it. Immediately after that came the dreaded blood draw, but like most of our visits to this facility, the phlebotomist, a young woman who we had never met before, could have struck Calvin’s vein blindfolded, she was so skilled at her craft. As a result of her beautiful finesse of the needle, his blood flowed through the clear thin tubing like Gatorade sucked into a straw by a thirsty linebacker.

Our last stop was just down the corridor to see Calvin’s doc. She and her dietitian greeted us with their usual strong, warm hugs. Calvin laughed hysterically in Michael’s arms—just like when he hugged his Grandpa last week, who then remarked “this isn’t right." We gave her an update on his seizure frequency and his uber-manic behavior. She quickly answered the list of questions I had emailed to her previously and we talked, as usual, about drugs. It seems an idea I’ve had for several years—of using anticonvulsant drugs prophylactically—is possible. We haven’t tried the strategy before because Calvin’s seizures, until of late, have been difficult to predict, but now, whether it be a blessing or a curse, when it comes to foreseeing a seizure, I am nearly batting a thousand.

During the entire car ride home Calvin’s hysteria transformed from laughter into wicked fingering, screaming and incessantly fixing his hands over his ears. That behavior, combined with the fact that his walking and balance were practically flawless all day long, lead me to believe that a seizure was imminent.

So, last night at dinnertime we temporarily increased one of his seizure medicines, the one related to Valium, for just the next three nights to see if we can dodge the brain-bullet we are expecting to hit.

This morning Calvin awoke without having had a seizure, but sadly the few smiles he had for us just weren't quite the same, and his giggles were no where to be found.

monotony

My sister-in-law called me a couple of weeks ago, as she does on occasion, just to check in and see how we’re doing. She asked after Calvin and I told her he seemed to be having only slightly fewer seizures but, all in all, was doing pretty well. I went on to say that, although Calvin is generally happy—easily brought to euphoric giggles and grins when we nuzzle our faces into his neck, press our lips to his cheeks, wrap our arms tightly around him—that once in a great while when I'm running low on steam—and I know this might sound crass—I feel raising him is in ways like raising a farm animal or a dog: you feed them, you tend to them when they are sick, you clean up after their messes, you make sure they get regular exercise—you know, take them out for walks—and, although they might understand a few simple commands, you can’t bring them anywhere.

She listened intently. I continued, adding that although I have long since given up any grave concern over his missed milestones—Calvin’s developmental gap ever widening with each passing year as he continues to engage in the same activities with nearly the identical skill as he did when he was two or three—that I experience limited joy in the daily life of raising Calvin. Our days are monotony punctuated with a sprinkle of warm cozy snuggles for which I am incredibly thankful.

The only thing that came out of my sister-in-law’s mouth was, “I’m sorry.” I couldn’t have asked for a better gift from her. She didn’t try to tell me things would get better. She didn’t persuade me to look at the bright side. She didn’t try to say it wasn’t so. She didn’t exclaim, “everything happens for a reason.” She simply listened and said she was sorry. In doing so she totally validated my regret, and I am completely grateful, for I knew she understood that my love for Calvin runs deep and solid as an aquifer—that the two feelings of mine could rightfully, naturally coexist.

We finished our conversation with I love yous. I hung up the phone and went back to preparing Calvin’s dinner, drew up his pink liquid medicine in a syringe, cut his pills and began feeding him. I cleaned him up, brushed his teeth then Michael took over the nightly routine of walking Calvin’s burps out before changing his diaper and putting him to bed. I poured myself a glass of wine and with it I retreated to my garden sanctuary hoping to bring back some semblance of self, while waiting anxiously for Michael to join me.

Tomorrow will likely be another day just like today, just like yesterday ... and the day before that ... and the day before that. But as I reread what I have written, I realize that perhaps, in the same way I push Calvin to step outside of his comfort zone in order to make strides, I need to do more of the same myself in an effort to put an end to the monotony. Or just dive into a few more tickle-fests than usual.