more forgiveness

On a recent rainy day I watched a film about forgiveness. Exiting the theater into blinding sunlight, I saw things anew. I saw how the clear skies forgave more than a days' worth of rain, how the wilting rhododendron flowers laced with rotting brown forgave the rain, too. Evergreen bows hung low forgiving the coat of droplets burdening them, then they forgave my sheers for cutting into their flesh hoping to spawn new growth.

A carpet of soft green forgave the heels of my boots, which sunk into its moistness. I forgave myself for lopping down the slightly sickly crabapple in exchange for a long view of the garden and the deep sigh of relief that spaciousness can offer.

The Cannabis Man came by and I forgave his long absence with a hug and a visit to the garden where the mosquitoes lunched on our flesh. But we forgave them because it was worth risking their bite to breathe the sweet vanilla scent of white azalea blossoms splotched with yellow, to see the delicate tips of iris and swelling peony bobbles.

Later, I forgave Calvin for pulling the hair at the nape of my neck, and he I, for the string of bitter words I pitched his way. I forgave him for his poor balance and for his intermittent lunacy, and he I, for my neglect.

I forgave the psychotic chipmunk chirping ad nauseam from one corner of the garden, and the crow for fouling the birdbath with the mushy white bread it gets from an unknown neighbor.

In hindsight, I forgave the bits of soggy movie popcorn because it was drizzled in real butter and tasted delicious. I forgave the drivers—all of them—the slow, the erratic, the ones who don't signal or allow me to merge. I forgave the man in line in front of me at the grocer who wrote a check in the EXPRESS lane.

And the earth forgave the darkened skies, its tender green spears thrust upwards like the necks of chicks to their mother. I forgave the bottle of bourbon holding barely a drop in its base. I forgave myself the cheese quesadilla for its burnt underside and the avocado for its brown spots.

I learned recently that Calvin's exome sequence came back absent of any genetic mutation that might explain his condition, which leads a mother like me to wonder what happened—what I might have done—to contribute to his demise. It could have been one of any number of things—those sips of wine or morsels of goat cheese, those swim workouts, the chlorine, the wall paint, the respirator. I can't know, and Michael insists it was nothing I did. But I must find a way to forgive myself, even if there is nothing to forgive.

dear old dad

Dear old Dad,

You left this earth far too early, far too young. I hope your pride in me exceeded your disappointment. I think of you every day when I tend to my rhododendrons, when I eat my oatmeal and sometimes when I drink my coffee. I say the same things to Calvin that you said to me, like, "You know I love you, dontcha kid?" and "How many times do I have to tell you?!"

I love you and miss you and I know that your ashes, which I scattered on the side of a mountain in a glen of forget-me-nots and in the wind at the water's edge, are still reflecting the sun's light and warmth.

Christy

cannabis, colds and cuddles

Since Calvin began taking a homemade THCa cannabis oil for his epilepsy, we have seen many improvements in his behavior, sleep and focus, plus an easier, albeit slow, wean from his benzodiazepine. Most notably, however, is the fact that in fifty-five days he has had only one early evening seizure. Prior to taking the cannabis oil he'd have an early evening seizure every five to fourteen days. The downside is that his seizures have migrated to the middle of the night or the very early morning, but I'm guessing that is because we don't give him any cannabis oil in the middle of the night.

In an effort to mitigate the nighttime seizures we have increased his evening dose, and if that doesn't work I am hoping to get my hands on some high CBD oil, if The Cannabis Man I've been talking with would please return my copious calls and emails. If not, I'll make it myself. In the meantime, my second batch of THCa tintcure is evaporating into resin as I write this.

I've included some photos of Calvin with his nurse, Barbara, having a lovefest. Even with an ear infection and the nuisance of a common cold, Calvin is feeling pretty damn good, no doubt in my mind greatly due to the cannabis oil.

snapshot

Toweling off after a weekend shower, rid of soil and sweat and, with any luck, ticks, I am bathed in late afternoon light and its long sultry shadows. I glance at the opposite shelf, realizing it is a sort of snapshot of my life. These are the things I see:

A tall glass half full of water, of which I don't drink nearly enough, perhaps resulting in or contributing to the spells of vertigo I've felt of late.

Baby monitor on ribbon, which, if I must leave Calvin's side even for a minute or two, is humming in my ear or sitting next to me on a shelf as it has been for the past ten years.

Calvin's glasses, bent, banged up and gnawed upon. He's worn glasses since he was eleven months old because he is legally blind times five, which is partly why I spend hours each day ensuring that he doesn't run into things. His first wee pair barely spanned the width of my palm.

One small tumbler, also measuring the width of my palm, cradling two ice-cubes and a shot and a half of bourbon, my late afternoon elixir of choice for celebrating life's victories, both large and small, numbing the blues or simply chillin' after a long day.

A tiny hair clip for which to put up my thinning, greying hair only to have it yanked out again by Calvin.

Small tube of Debrox earwax removal gel for Calvin, which, we've been told, has not contributed to the ear infection he has at the moment.

Black and white floral soap box with magnetic lid for holding hair ties, barrettes, razors, clippers, tweezers, tampons and chapstick—some bare essentials of self care.

Several rolls of toilet paper, emblematic of cleaning up all the shit (literal and figurative) that life throws our way.

Still, it's a beautiful scene.

batch no. 2

I am in the process of producing my second batch of high THCa cold-tinctured cannabis oil to treat Calvin's epilepsy. Making it is as easy as pie, and for those of you who are intimidated by the process, don't be. If you can follow a recipe, you can make cannabis oil. And for those of you without access to strains of cannabis high in CBD, this is a good place to start. THCa, in its non-psychoactive, raw, acidic form, is a neuroprotectant and Calvin has seemed to benefit in many ways from its use. We've seen improvements in his sleep, focus, behavior, balance and we have been able to reduce his benzodiazepine, Onfi, by fifteen percent with minimal withdrawal affects. And through the wean, Calvin has not had an appreciable uptick in seizures even though he is on a smaller dose of anticonvulsant pharmaceutical medication. You can find the Epsilon Apothecaries recipe here.

freedom envy

Tuesday:

This morning I laid awake in Calvin's bed with my arms around him after he’d had a seizure. He shivered and shook for a good part of an hour, half asleep, half awake. As the seizure was waning I’d given him several drops of cannabis oil with the hope of preventing a second one.

As I rested with my eyes closed, I thought about an encounter I’d had on Monday while bicycling across campus to the grocery store. The sun had been out, the air smelled fresh, and it felt good to be untethered from Calvin with the wind in my hair. At a crosswalk I met three moms toting their kids. I hugged my friends and shook hands with the third mother whom I didn’t know. One by one I greeted their children, sweet smiles beaming from each of them when I did. My friends, who were glowing, albeit perhaps a bit weary, proclaimed that they were done having babies. When the third woman asked if I had any children I told her that I have a ten-year-old son. “Are you done?” she asked, and I took it as somewhat of a compliment since I am fifty. “I’ll never really be done,” I said half chuckling, then I went on to explain how much Calvin is still—and will always be—much like a baby, in that he can’t talk, still wears diapers and can’t walk all by himself. “He also has epilepsy,” I added.

Since I was child-free at that moment, one mother mentioned how she was jealous of my freedom, saying that sometimes, when she drives by my house, she sees me sitting at my computer writing. She expressed great longing for that kind of time to be hers. I replied by saying how grateful I am that Calvin is in school most of the day. Then, in a manner which appeared to soften the comment about freedom envy, my other friend looked into my eyes and said something like, "The grass can sometimes look a little greener from either side."

With a busy day ahead of me I said my goodbyes and took off for the store. As I rode I reflected on our conversation. I wondered what kind of freedom some people think I have. I wondered, too, if they ever drive past when I am struggling with my stubborn boy, when he is yanking my hair and dragging his teeth across my face, when I am walking endless, monotonous circles around the house and yard holding his harness, or listening to him scream bloody murder, or thwarting his eye poking, ear poking, finger snapping and sun staring. I wonder if they hear me when I am screaming at the top of my lungs, when I'm trying to change his messy diaper while he thrashes and shrieks and shit gets everywhere. Do they see me when I am tending to him during a seizure, when I am logging every detail about his drugs and his poops and his appetite and his behavior and his temperature and his balance and his countenance, when I am waking up to check on him three, four, five times a night—like a new mother—which I’ve done most nights over the past ten-plus years? I wonder if they go past when I'm trying to determine the source of his hurting, when I lift all fifty pounds of him from jumper to highchair to changing table to bed and back again, when I bathe him and dress him and undress him and dice his food and brush his teeth and cut his pills and spoon feed him and worry—constantly—about his safety and well-being, about the drug side effects, about him choking, about his kidneys, his teeth, his bowels, his bones, his skin, his eyes, about his drug withdrawal, his increasing seizures, his mortality, his tenuous future, about what would happen to him if I die before he does.

Later, I shared the episode with Michael. “Freedom? When was the last time we took a family vacation?” he asked, perturbed, and I considered how we rarely even go out to breakfast or lunch as a family and have never taken Calvin out to dinner. We don’t go to school pizza parties or bowling nights or dances; they all occur around the time that Calvin gets his nighttime meds and is off to bed. And even if we could go, he’d be impossible and we’d spend the entire time redirecting him from the exits, making sure he didn’t bite filthy surfaces, metal or glass, keeping him from dropping to the ground, preventing him from tripping and running into things, calming him when he’s manic, watching for a seizure. We don’t go to the playground, I don’t watch him in school concerts or pageants, we don’t go for bike rides or hikes or to the beach to play in the sand. We don’t take him to the movies or watch them together at home. We don’t go to birthday parties or buy him ice cream cones or hamburgers and fries. He doesn’t have sleepovers, nor does he have any true friends to speak of. He can’t do sports or play in a band or enjoy rides at a carnival or play catch or draw pictures at home or read a book quietly in his bedroom much less sit still to have one read to him.

Freedom? I think. Michael adds incredulously, “What? Jealous of one of the worst losses that can happen to a human being?” Then I thought of how our relative lack of freedom is a First World problem, and I realized what a whiner I was being. I thought of all of the families who have lost children or who have children worse off than Calvin, of the families that barely get by, or don't have fresh drinking water or shoes or a decent education or a safe neighborhood or proper medical care or sufficient shelter, or are suffering from famine or disease or war, and I realized how lucky we are.

Then, revisiting the mom encounter and the freedom envy remark, I thought perhaps it might have simply been an attempt to do what so many others have tried to do, which is to level the playing field for my benefit. With a disabled child, though, there is no leveling. It’s not a place where, “Welcome to motherhood” applies or can assuage any of the hurt or the hardship. It’s like what I told the three moms before I rode off on my bike, about mothering our different children: "We all have our challenges ... you really can’t compare."

not one more

Too often, I imagine what might happen if my son Calvin suddenly died. What would I do, how would I feel, how might I survive the grief? Because of his epilepsy, his mortality rate is three times that of the rest of us, and if it weren’t for constant, hands-on supervision, his risk for accidental death would be twenty-four times greater. So when I heard the news of another mass shooting, this one in Santa Barbara, where a jilted young man killed six students before killing himself, and when I watched one victim’s parent grieve publicly, I thought of Calvin's mortality again and my body shivered with chills.

Richard Martinez, the father of an only child, twenty-year-old victim Christopher Michaels-Martinez, spoke to the media demanding immediate action from Congress and President Obama to curb gun violence by passing stricter gun-control laws. He spoke briefly and passionately, blaming “craven” politicians and the National Rifle Association for lax policy that he and others believe contributes to countless tragedies such as Columbine, Virginia Tech and the Sandy Hook Elementary School massacres.

Martinez has started a campaign urging people to send electronic postcards to Congress with the message of, Not one more firearm death. I sent mine immediately, and shortly thereafter I read a Facebook exchange that began with a reaction to a posting of a New Yorker story titled Christopher Michael-Martinez’s Father Gets It Right. One man had this to say about the bereaved father:

"That was guy was a straight up actor ... Come on this is all propaganda. What a freaking joke."

This ignorant, insensitive comment about the father’s anguish being an act, being propaganda, being a joke, sickened me. It brought to mind all of the parents of the twenty Sandy Hook Elementary School first-graders who were murdered in a spray of bullets from a semi-automatic gun with multiple large-capacity ammunition clips. Some of the children killed had their hands and faces blown off, others were riddled with as many as eleven bullets. Then, I thought of my dear friend Heather’s Goddaughter, nine-year-old Christina Taylor Green, who was shot to death the day of Gabrielle Giffords' constituent gathering in Arizona a few years ago. I thought about the father of three former swimmers of mine who shot himself at home one night. I thought about the countless women killed in domestic disputes by guns they’d bought for their own safety, about the hundreds of children who've found a relative’s or a neighbor’s gun and accidentally killed their sibling or a friend. And I thought of all the innocent men, women and children shot by angry, bigoted, trigger-happy men who falsely claim self defense or stand-your-ground. Would these victims' loved ones be opposed to stricter gun-control measures?

The Facebooker went on to say that it was “weird” for the grieving father to attack the NRA, going on to say that, “It’s funny how Obama fights so hard to take away our right to protect ourselves ... kinda like Nazi Germany ... he wants everyone to lose their right to have a gun.”

It pained me to read the offensive comment, comparing a common sense desire for reasonable gun-control legislation intended to save innocent lives to the systematic torture and extermination of six million people, mostly Jews. The comparison is repugnant and distorted, hurtful to the families who lost loved ones and relatives during the Holocaust and who are haunted by it to this day.

Anyone who thinks that Obama wants everyone to lose their right to own a gun is deluded. It's wise to apply stricter background checks and limits on particular types of guns and magazines while increasing other safety measures to buying, selling and owning guns. A buy-back program like the one Australia conducted could get hundreds of thousands of guns off of the streets and out of homes, thereby significantly reducing mass killings, homicides, suicides and accidental deaths. And, no, asking if we should outlaw knives is not a good comparison to gun-control. Show me a knife that is made expressly for killing people that can be aimed into a crowd from a fair distance murdering scores of people within seconds. And, yes, we should consider other methods for curbing gun violence such as improving access to mental health services and by identifying and treating those who might be a threat to society.

What is fact and not purely conjecture is that the NRA pours millions of dollars into the campaigns—perhaps even the pockets—of politicians. They lead the gun lobby with their vested interest in relaxing gun-control policy so that more people can purchase firearms thereby stoking gun industry fortunes. When it comes to certain trades, politicians and oligarchs, it's all about greed for money and power, which is why the NRA's solution to any massacre is to suggest that more—rather than fewer—people should own guns. I'm sure that if it were up to the NRA, they'd support any child old enough to walk owning a gun, just like the cigarette companies that are addicted to marketing carcinogens to children. Money, money, money, money. Makes me want to puke.

The NRA has become adept at fear mongering, convincing some Americans that owning guns will make them safer, while just down the street some toddler is playing with a loaded pistol and some father is putting a gun in his mouth and some mother is being blasted by a spurned boyfriend and some innocent stranger knocking on the door asking for help is shot square in the face because of trumped-up fear.

Today, Christina Taylor Green would be about twelve years old, just two years older than Calvin. Had she survived the mass shooting in Tucson I bet she'd be pressing for stricter gun control now. That's just the kind of girl she was ... smart, unafraid and interested in the welfare of others, not in getting richer, not in getting elected, not in propaganda and not in being a "straight up actor." And when the Sandy Hook massacre took place, my son Calvin was the same age as the children who suffered and died. If he knew of that tragedy, and if he were capable, I'd bet he'd be sending his postcard to Congress too, urging them to grow a spine and to tell the NRA to go to Hell along with their money grubbing, shady motives and twisted theories, telling them to do what is right in an effort to ensure that there is not one more of us lost to guns.

photo Associated Press