hard to cry

there's no sun due till sunday. for two weeks, i've been mostly holed-up inside. i feel the need to have a good cry. but somehow it's stubborn. hard to get out, though impossible to swallow. considering the state of things—putin's loathsome war against ukraine; musk's strong-arming of twitter; lying, scheming "patriots" in congress; a friend's premature death; grieving mothers, fathers, wives and children; calvin's broken femur and recent surgery—it shouldn't be hard to cry. tears should flow unrelentingly. but they're stuck somewhere in my thickening throat. i can feel them trying to push past my clenched teeth when i drift between sleep and dream, or suffer insomnia. sometimes a song will tug them along, nearly into existence—the soundtrack from melancholia; nick drake's river man; adagio for four strings. i so want the tears to spill. to let go from their headwaters, each holding a different emotion in its salty, quivering drop.

perhaps they're caught up in a knot of anger and resentment, despite the work i do to limit and loosen those emotions. to leave them behind. but i know those feelings are present and are maybe festering. sometimes I need to scream just to release them. i don't want them to breed or eat me from the inside out.

calvin had surgery last week on his broken femur—one of my worst nightmares—to reattach his femoral head to its bone using three cannulated screws. it was a somewhat long operation. he doesn't yet want to put weight on that leg. it dangles from its socket as if a pipe on a wind chime, hovering above ground like it did when it was broken two weeks ago at school. i hope the surgeon got it right and that calvin will be walking on it soon. today is his fifteenth day spent in bed playing with his baby toys, listening to music, eating his meals, cuddling with michael and me. i worry he won't again be able to walk independently. the notion is scary. angst and bitterness pool. i wish i could shed some tears, but for now they remain steadfast in their reservoir.

i sit here on calvin's changing table listening to music. steely dan's do it again comes on, and i hear the lyrics:

then you love a little wild one and she brings you only sorrow.

the words make me think of me and calvin, and i just about break down.

but then i hear an unmistakable noise in calvin's bed, and i know he's had a huge gooey poop, and i spend the next half hour wiping it up—off his skin, off his pajamas, off his socks, off my sweatshirt cuff, while trying to ensure he doesn't put his hands in it and so it doesn't get on anything else. and i could almost cry from sheer exhaustion. but i don't. the anger, angst, and discontent have their grip on me and are holding my tears hostage, at least—i think—until i can begin to see my boy take a few steps. until i have a sense this clusterfuck (excuse my french) may one day be over.

when michael comes home, i duck outside to walk the dog. the sky is gray. the ground is wet. i feel fatigued in a way i haven't often felt. i drag the heels of my green rubber boots along the gritty sidewalk as if i'm very, very old.

suddenly, the sky opens up. the clouds begin to sprinkle. drops fall on my cheeks, and something in me releases—the floodgates—and i cry a good cry, a long cry. and i walk along the street not caring if anyone sees my miserable, knitted face, because—besides a good night's sleep—crying is just what i need.

road to recovery

On Wednesday morning, my son was wheeled into the operating room of our local hospital. Michael donned a bunny suit, cap and booties to accompany him until the anesthesiologist put Calvin under. Standing in the hospital room alone, looking out into the woods—a very similar view to the one we had when Calvin and I boarded in the labor and delivery ward for several weeks after Calvin was born—I felt a bit incredulous. Incredulous that my sweet little unassuming son was being drugged up, cut open, muscle splayed apart, femur drilled and fit with three stainless steel screws, all because of a regrettable accident at school the previous week. I was living one of my worst nightmares as the parent of a child who, despite his inner and outer loveliness, has already been the source of so much angst and grief.

The surgery lasted far longer than we expected, and therefore was a bit of a nail-biter. Michael and I sat in silence, my mind racing to all kinds of places that no parent wants their thoughts to go. But the good news is that the surgery seemed to go well, and it was lengthy because the surgeon had, in his own words, obsessed about the placement of screws in Calvin's wonky anatomy. He told us that Calvin could put weight on his leg whenever he's up to it! We were astonished, having been told earlier that Calvin would likely be confined to his bed and wheelchair for up to six weeks. More good news came later that day when we realized we didn't have to spend the night in the hospital, a place we don't relish for a number of reasons that could fill a blog post or more on their own.

To add insult to injury, that night Calvin had a seizure, which we had seen coming while in the hospital. Like all of his seizure of recent years, it stopped on its own, and we were able to thwart a second one by giving him extra THCA cannabis oil. We managed his hip pain with alternating doses of ibuprofen and acetaminophen and with half a tablet of oxycodone when it seemed, by Calvin's moaning, that the others weren't sufficiently doing the job. Obviously, none of us got much sleep, but we rested better than if we'd been in the hospital.

Through all of the trauma since Calvin's fall ten days ago (seems like eons), many dears have shown their love, concern and support. We had dog walkers for Smellie, and received all kinds of goodies—cards, bottles of wine, flowers, cake, dinner, homemade negronis, stuffed animals, homemade cookies, bread, and other treats. And we got hundreds of loving messages from friends, acquaintances and strangers, and offers to bring food to the hospital. The outpouring of support has been incredible.

This morning, Michael and I got Calvin out of bed. With great help from both of us—Michael supporting Calvin's body from behind, and me in front holding his hands—our boy took three very shaky and tentative steps. A little smile crept across his face as if doing something novel or accomplishing something great. We sat him down on the soft carpet in our bedroom where he crawled a few yards, his left knee turned slightly inward. Once more, we got him into a stand, but he held his leg off the ground as if lame, so we scooped him up and put him back into bed, lavishing him with praise for having done such a good job. Hours later, I hoisted Calvin out of bed to change his diaper, then stood him up for a moment, bracing him. He didn't want to put his foot down and appeared not to be able to bear any weight on it, so I lifted him back into bed again where he remains and is resting.

If today is any indication, Calvin's road to recovery looks like it might be a long one after all. I worry he won't get back to walking as well as he did before the accident, which, though his gait was awkward, he could get around to a great extent by himself without falling or tripping on his turned-in feet. I worry he might be in pain without being able to tell us. I worry he'll regress in other ways. I worry about future accidents. As for going back to school next week, it doesn't look possible without a wheelchair, which would mean the staff would have to do a lot of transfers from chair to changing table and back again. There's plenty of other things to consider—the state of his incision and protecting it, his strength, his stamina, his safety, his ability to heal and rest, his happiness, the risk to him.

This incident has been disconcerting and stressful, and has given us a lot to ponder. But, it has also been a cause to celebrate our good fortune—for our healthcare, our community, our home, our family, our friends and neighbors, for each other.

Yes, the road to recovery might be a long one, but one thing is clear: none of us will be walking it alone.

gratitude today (is hard)

The scent of hyacinth is so intense it seems to reach my gut, just below the place where the ache of want, angst, sadness, anger and resentment settle. I try my best to sooth these feelings using gratitude. It isn't always or wholly possible—or necessary; I need to taste the fullness of my sentiments lest they eat me up.

Gratitude today is hard. Calvin is in his sixth day confined to bed. He likely has a broken hip. It needs time and space to rest and mend. He injured it at school last week just trying to sit. He tumbled when he partly missed the seat. I'm not sure where his one-on-one was. His school hasn't told me yet. It appears, not on him, at least not close enough to block his fall. Thankfully, he's nothing if not resilient.

Gratitude today is hard. Hard because Calvin is itching to exit his bed. But we can't let him put weight on his left leg. We're getting better x-rays soon to clearly see his injury's extent. The only time he gets out of bed—so far—is when he's soiled or wet. Crouching down, I scoop him up, lift and set him on his changing table. It isn't easy. He's ninety-two pounds. But I'm strong, I lift correctly, and he holds tightly around my neck. When we wipe him up, we must take care not to move or jar his leg in ways that hurt, which makes the cleaning difficult. He can't use the potty for the foreseeable future. Instead, we have to deal with dirty diapers and "blowouts" again. One step forward, back two steps. The situation is disconcerting at best.

Gratitude today is hard. Calvin won't be able to walk for up to six weeks. I'm not sure he understands his restriction. I wonder if he'll suffer setbacks. I wonder how much his muscles will atrophy. I wonder how well he'll be able to walk when it's all said and done. I wonder if he'll suffer long-term pain, the kind which isn't obvious to others, but bothers nonetheless.

Gratitude today is hard. Calvin's movements are already seriously limited, more so during this pandemic. He can't just go wherever he wants whenever he wants, like other eighteen-year-olds. He has to go where I go, and I with him, except when he goes to school. Now his freedom is further restricted. I had been hoping, as the weather warms, that I could take him for mini walks on the back roads or for a yards-long stroll in the nearby woods. All that is now impossible. It's not even clear if I can manage lifting him into the car just to take a ride on back roads.

Gratitude today is hard. Our boy is defenseless, helpless, trusting, innocent. He relies on others for exactly everything. Expects us to be there for him. To help him navigate and to assist. To catch him when he falls and trips. Though he walks quite well on the straight and flat, I tell those at school to stay close, to keep their eyes on the ball—on him—at all times, especially near obstacles, on stairs and in crowded halls. His poor vision and bad coordination are mostly why he has a one-on-one. It isn't the first time he has suffered injury. Regrettably, humans are fallible. I for one should know.

Gratitude today is hard. Even so, I'll look for reasons to be thankful: a walk alone in the forests and on back roads; sunlight streaming through trees and windows; a cozy home; tons of dear and generous friends; an awesome dog; a supportive, interesting, creative, loving husband, the meals he makes and the way he is with me and his son; the rich fragrance from hyacinth sprigs picked just for me; most of all, my son Calvin, his sweetness, affection and awe-inspiring resilience. He's always there for me no matter what, even when I stumble in my mothering, graciously, he catches me when I fall.

helpless

I was going to write about loss and grief. I was going to write about goldfinches nibbling thistle, and robins tugging at stubborn worms, and cardinals flashing by windows, and woodpeckers warbling in the forest. I was going to express my astonishment at trees and shrubs doing what they're supposed to do when they're supposed to do it and in perfect unison with others of their same making. I was going to mention how all seems right in this little corner of the world despite ever-present loss and grief, while at the same time everything is so messed up here at home and abroad, and how I feel so helpless to change the things that seem to matter most.

But partway through writing this post, I got a call from the nurse at Calvin's high school. He'd suffered a fall, was hurting and not able to put weight on his left leg. The nurse somberly relayed to me that, while trying to sit in his chair, Calvin "got one cheek on and one cheek off," and he went down hard on his elbow and hip as if the chair he was expecting to be there wasn't, and the ed tech had heard something in Calvin crack. I said, "fuck,"—one of my worst nightmares having seemed to come true—then dropped everything and went to fetch my poor little helpless boy.

So, Tuesday, instead of writing or gardening or taking a much-needed, long-overdue nap, I drove Calvin to our local hospital's emergency department where his beloved teacher, who had loaded him into the car and followed us there, had then lifted a miserable Calvin out of the car and into a wheelchair, waited with us until we got a room.

During the seven hours we spent in the hospital, Calvin underwent three painful hip X-rays and one CT-scan of his pelvis, hip and femur. In between, I sobbed in his arms, feeling completely helpless. As he wailed and moaned, trembled and sweat in waves of intense pain, I wanted to disappear, my motherly anguish becoming worse recalling the horrific hospital episodes of the past: Calvin's fraught birth; his painful, poorly-placed nasogastric tube; his excruciating, unnecessary, bloody intubation; his stubborn, forty-five minute seizure during which Michael and I sat by helplessly, thinking we were kissing him goodbye.

Regrettably, the CT-scan revealed some fat and blood in Calvin's hip socket indicating an occult (hidden) fracture in his hip socket or the femoral head. We'll know for sure a week from Friday when he goes in for more X-rays. We're hoping he won't need surgery. In any event, Calvin will have to keep weight off of his leg for as long as six weeks. Yesterday, I did some heavy lifting, calling doctors and medical supply companies (for a hospital bed and a wheelchair), cleaning up vomit, changing all of Calvin's clothes and bedding twice, doing laundry, trying to get him to eat and drink, changing several dirty diapers—something we've rarely had to do anymore since he's been going on the potty, and a colossal effort with such a big kid whose hip kills him, and who is inclined to put his hand in his poop—and keeping him comfortable and content in bed where he's regrettably sequestered without really understanding why. I can't quite wrap my head around managing Calvin, my hyperactive infant-toddler-teen who suffers seizures and akathesia and is incapable of attending to a screen or reading or playing with most toys, for such an extended time while confined to a wheelchair and bed. Most of all, I feel sorry for Calvin being restricted from the things he loves to do and needs most, which is his jumper—his most favorite place in the world for allowing him to move without expending energy—going to school, traipsing around the house and yard, using the potty and taking a bath (jeezus, I just realized: how in hell are we going to bathe him?!) Once his pain subsides, which I hope is soon, I wonder if I'll be able to manage getting him into the car for rides on the back roads. Suffice to say, we're stuck at home again for the foreseeable future, and helpless to do anything else.

Thankfully, this home is a damn cozy one. Thankfully, our community is astoundingly supportive: a neighbor has offered to walk Smellie anytime; his teacher came by yesterday with the assistant superintendant of special education and they helped while Calvin retched; his teacher went to the store to buy us Pedialyte and Milk of Magnesia; a friend just brought by flowers and many others have offered their help; I have a ridiculously hard-working and supportive husband. In essence, I have so much to be grateful for!

Even so, as I sit here in Calvin's room tapping on my laptop while listening to some quiet music, I worry, with fresh anger and resentment, about my child and his unfortunate mishap, wondering if he'll fully recover and without chronic pain. I consider what a hard and bittersweet spring this is going to be seeing Calvin's peers graduate from high school and go on to bigger and better things. I think about their parents, envious of some of them who will soon be empty nesters enjoying newfound liberties. I meditate on the innocent people in Ukraine who are suffering dire and dreadful atrocities.

But I also think about the podcast I heard the other day in which a woman describes immense grief and loss as not necessarily lessening over time, but instead feeling as though they diminish with each new, rich life experience that expands around them. And though there are spikes and waves of grief and loss, especially during incidents like these, I can attest to feeling as if those emotions have dwindled, if slightly, since grief nearly took me down when I learned about Calvin's malformed brain, then hammered me again when he began suffering seizures and side effects from the drugs meant to stop them.

As with all my blog posts, I write this one not knowing where it will ultimately take me until I've "penned" the final words. Now, it having fully unfolded, I reflect on what I've written about the sorry state of Calvin's fractured hip and what it will mean for us. And I wonder if this might be one of those expansive experiences, and though it mightn't be true for Calvin, I realize I'm not really helpless at all. Rather, in my community, friends and family, I've got all the help in the world.

movements

The sun is on my face, the wind feels and smells as if I were at the beach. The pines are whispering. Through them, I hear the lonely drone of a small airplane. Despite the twinge in my back and hip, plus a tinge of melancholia, it feels good to be moving.

This morning, Calvin was not his best self. His recent conscious-onset morning seizures have put me on edge. They are typically rare, and lately have seemed to come out of nowhere. I'm afraid to send him to school lest one happens on the bus, in the hallways or classroom. Despite seeing hundreds of them over the years, they're hard to take, and I can only imagine how they make him feel.

As I stroll down a sloping road, moving from one side of the black tarmac to the other while noting the big sky above me and amber fields spanning out from my flanks, I sink into my sadness and angst. I ponder their roots, which have taken ahold and perhaps manifested in my stiff, achy parts. I assume it's simply the weight of the world: the damn protracted pandemic restricting our movements and gatherings; the war waged against Ukraine and elsewhere on this small, precious planet; the terrorism and suffering of so many innocent beings; too many deceitful, badgering, insincere, criminal leaders.

Then, I think about Calvin's burdens: his inability to effectively communicate; his incontinence; his poor vision and coordination; his seizures; the drug side effects he suffers. He's confined to his own little messed-up world in which his movements are greatly hindered.

And yet, my poor boy can't sit still. He's on and off our lap almost in the same moment. He often paces without purpose. He sits at the table for mere minutes, taking a few bites of food before being compelled by something to get up and move. I know what possesses and troubles him: impending seizures and, perhaps mostly, epilepsy drugs and the lingering effects of their withdrawal.

One of Calvin's worst afflictions is a drug-induced movement disorder called akathisia, which, like most drug side effects, I have researched and diagnosed myself:

akathisia: akəˈTHiZHə, -ˈTHizēə | noun | A state of agitation, distress, and restlessness that is an occasional side-effect of antipsychotic and antidepressant drugs.

and:

A movement disorder characterized by a feeling of inner restlessness and a compelling need or urge to be in constant movement [despite fatigue.]

For the longest time, I was convinced Calvin's restlessness was just from years of taking benzodiazepines. More recently, however, I think it could also be from one of his current antiepileptic drugs, Keppra, aka leviteracetam, which he's been taking for over ten years. I fear the (brain) damage from both drugs might be permanent.

I read the literature. It's all there, documented on multiple reputable websites (my go-to is rxlist.com): Keppra can cause drug-induced movement disorders. Calvin's akathisia manifests mostly in his restlessness and repetitive, aimless pacing, but I wonder if it's also displayed by his jaw-jutting, teeth-grinding, hyperventilating, knee-knocking, frantic fingers (pill rolling), and what I call crab-clawing. I believe the akathisia is why he likes riding in the car and spinning in his jumper so much; they allow him to move without expending much energy. 

Drug-induced akathesia is a miserable affliction which causes some sufferers to feel so achingly restless, frantic and panicky that they take their own lives in desperation. I can't begin to understand what a child like Calvin—who doesn't grasp abstractions such as the notions of tomorrow, life and death—must be thinking or feeling when he is most afflicted, which is pretty much whenever he's awake. I've seen him in states of panic, pain, serious discomfort, distress, malaise and misery, which are often impossible for me to alleviate (thankfully, though, extra doses of my homemade THCA cannabis oil seems to help.)

As I approach the final stretch of my walk, the sky is blue and painted with clouds. The sun is beating down. The wind is still sifting through my hair. The road is flat and smooth, and my bit of melancholia still lingers, though has lessened. I think about how amazing it would be if Calvin could walk these back roads with me without faltering or balking. Maybe the fresh air and quiet could somehow relieve some of his own troubles. Perhaps there's a chance one day my wish could come true. I'll keep embracing hope. Sometimes it's the only thing to hold onto.

Photo by Michael Kolster