can't help myself

Tuesday night at seven, while Michael and I were eating dinner, I heard Calvin yelp. He was seizing. Michael and I ran upstairs, unlatched Calvin's safety netting and bed panel and scooted him toward us so his feet wouldn't strike the bed's wooden edge. When it was over, we dimmed the lights and ate the rest of our dinner, plates in our laps, while sitting vigil as Calvin tried to catch his breath before drifting back to sleep. It had been ten days since his last couple of fits.

I'm not one to shy away from a challenge, but if I knew how hard this mothering thing could be, I'm not sure I'd have signed up. While raising Calvin, I've experienced joy, pride, and immeasurable love, but too often it really sucks. Parenting him has meant sacrificing—almost entirely—opportunity, dreams, travel, leisure, freedom, a good night's sleep. Many parents might share these sentiments. But what I thought of as the promises and joys of parenthood (you know what they are, and I've written about them ad nauseam) have been replaced by a lot of grief and anguish. Since Calvin's birth, I've watched him endure more suffering than any little brain and body should—an excruciating and unnecessary intubation, painful IVs, blood draws and surgeries, digestive distress, relentless seizures including a horrifying one that lasted forty-five minutes, vicious drug side effects, agonizing withdrawal. I've seen days upon weeks upon months upon years of what I think might be nausea, migraines, tinnitis, cramps, akatheisa (acute and chronic restlessness), panic, and perhaps even psychosis. Nearly every day—whether for moments or hours—he doesn't seem to feel very good.

While many of us, including me, learn to live with the hardships of life, in some ways adjusting, I'm not sure that is true for Calvin; it appears, judging by his frequent moaning, shrieking, head-rubbing, eye-poking and howling, that his miseries persist. It's hard to imagine feeling bad so often. What kind of life is that for any child to live? Witnessing it nearly kills me (and doesn't make me stronger.)

In mothering my legally blind, nonverbal, uncoordinated, incontinent, autistic, seizure-riddled son, I've become a hypervigilant helicopter mama, and I haven't managed to find any way around it. My son's afflictions require I be on guard at all times to limit his risk for trips and falls and broken bones, choking, drowning in the bath, epileptic fits. I'm laser-focused on trying to lessen his misery—from headaches, tummy aches, toothaches, anxiety, hunger, thirst, restlessness, constipation, discomfort, and cold. It's my job. If you think that's an impossible feat with a kid who can't express in words, signs or gestures what is troubling him, you're right. I can only do my best to constantly anticipate, observe and analyze. I must rely on logic, common sense, and instinct. How else can one care for a kid who is such an enigma? My brain is working on treatments, preventions and solutions for any given situation pretty much around the clock. I even dream about this shit, both literally and figuratively.

Reasonably, or so I believe, I ask and expect similar vigilance in others who take care of my son. Regrettably, however, my hypervigilance seems to lead me to micromanage. Though I don't mean to, I can come off as critical, which is sometimes met with defensiveness. I get it. Though my intentions are good and I try to be kind, I'm perhaps not the best messenger for my own messages, in part maybe due to my assertiveness and candor which—for whatever reason(s)—are often not appreciated, valued or understood. To make matters worse, in my hypervigilance I often vacillate, communicate too much information or not enough, causing others to second-guess for fear of making a mistake. They tell me they don't know what I want. Self-deprecatingly, I tell them no one does. Half the time I'm not even sure if what I recommend for Calvin is right; I often question myself. Just as the book What To Expect When You're Expecting proved utterly useless to me during and just after my pregnancy, there's no handbook for taking care of a kid like mine.

But one thing is for certain. There is a method to my madness: to keep my son as happy and feeling good as possible despite his circumstance. And in that way, perhaps it's a blessing and not a curse that I just can't help myself.

Photo by Michael Kolster