Note from author: because this essay features my child, I have replaced his name with a pseudonym to protect his privacy.
This is where I hope to lay down the weight I’ve been carrying, to leave it on this grassy bank for just a while. Here, on this sunny lawn, here near the place where Queens Creek meets the intracoastal waterway, here I heave my heavy pack onto my right hip, then slip my right shoulder into one strap to hold the weight as I reach around and nudge my left arm into the second strap. I walk onto the dock and steady my feet on the deck of the small ferry, hoping that just for a little while, that invisible burden I left on the bank will not follow me.
The sun bears down upon the passengers as the ferry captain guides the boat out into the waterway and the wind picks up around our ears, our necks, the insides of our elbows. Everything is so flat; the difference between what is high enough to be land and what is low enough to be under water is negligible and changes with the position of the moon relative to this place. The difference is blurry here; estuaries fill with water, then drain down to damp sand twice a day, and so are not land, not ocean, but something in between. Great expanses of saltmarsh cordgrass stretch across the land here, with little rivulets creating narrow pathways of open water that weave through. Those of us on the boat squint our eyes against the May sun and look up as a gull enquires squawkingly above us.
Listening to the buzz of the boat’s motor and the wind in my ears, my mind drifts and begins to empty as I watch the saltmarsh roll by. The captain weaves the ferry around little islands of marsh with the confidence of one who does it several times a day for years. I fear I would get lost in this green maze if I tried to navigate it alone.
After only about fifteen minutes, the boat bumps up against the dock on Bear Island. I sway a bit as I stand and get my sea legs under me, and then I climb out of the boat and make my way down the dock to the shore. A bright strip of bare sand marks the path forward, and along with my fellow passengers, I make my way across the island, about a half a mile through short scrubby oaks and shrubs that give periodic patches of shade in the midday sun. A blue-tailed skink skitters across the path in front of my boots, but in the center of the island everything is mostly still and quiet this time of day. Shadows are at their smallest; my throat is parched and scratchy, but I don’t stop to drink from the extra bottle of water I carry in one hand, nor to raise the umbrella in my other hand. I just want to get where I’m going with no delay, to finally drop down at my final destination. I’ve travelled two days and almost 400 miles, from the mountains of western North Carolina to this island, and I want to see the ocean and then stop. Stop moving, stop thinking, stop worrying. I want to slow down and remember how to be, how to live, how to breathe. And so I keep my feet moving steadily, down the path, along the boardwalk, down to the beach where the waves fill my ears and the wind blows steadily across my dry cheeks and my boots sink a little into the sand. I walk first across dry, dusty, loose piles of sand, and then feel the beach getting firmer under my feet as I get closer to the water. At the sweet spot where the sand gets firmer but before it gets too waterlogged and your feet sink into the wetness, I turn left and walk down the beach.
Among the dunes to my left, there are occasional wooden posts with big white numbers, starting with one and going up. I am looking for number eight, and it’s a long walk, or at least it feels that way with all this weight. There’s plenty of space between campsites, thick buffer zones of dunes between each. As I walk slowly along the beach, I see others in front of me finding their spots, slipping in between dunes and starting to erect their tents. The man with the folding cart pulls in at #2, drops his belongings and sinks down to rest a moment on a picnic table bench.
At last, I find the spot reserved just for me. I’m relieved to take the pack off my shoulders; it’s really too heavy for a long trek, but I wanted to be comfortable here, and I included luxuries like fresh fruit, books, watercolor paints, and a down travel pillow. I make quick work of slipping the tent poles into one another, stretching out the nylon, and quickly a dense bundle becomes a shelter, and I can finally stop. I’m tired, but all of that travel--the driving, the ferry, the hike--was the easy part. Now that the pack is off my shoulders, I must start the harder work of peeling back layers of defense and anxiety, and find that soft place inside again, the part I buried when my child was diagnosed with type 1 diabetes.
*
The last time I had allowed myself to feel vulnerability had been four months earlier.
I was standing in my living room, phone in hand, when my partner, Liz, called to say that our four-year-old’s visit to the pediatrician had turned from a typical sick-kid visit to something quite a bit darker. They were heading to the hospital because Max’s blood sugar was extremely high. Diabetes, it seemed, had entered our lives and dropped the bottom out of everything. I no longer knew how to stand.
Max’s memories of the hospital are of a bed that went up and down with the touch of a button, a TV always at the ready with his favorite movie on repeat, and a Big Wheel that he rode up and down the hallway when he was finally feeling better. My memories are of a torrent of new information about what to do and when and how, of my child screaming when stuck with needles again and again, of sleeping curled around him on a bed only meant for one because I wanted to hold him close and shelter him with my body, because I could not sleep without feeling him breathing next to me so that I knew he was okay.
*
Deep in the night, as I sleep on the sand, I am awakened by insistent scritching noises all around. Something is gnawing or scratching at the base of my tent, and I am sure that the little animals, probably mice, are going to come right through the flimsy nylon. I lie awake, hearing the noises shifting from place to place around me; there’s more than one critter out there trying to come in. The moon is full and bright enough to cast shadows even inside my tent. Sleep eludes me; I’m too afraid I’ll wake to little mice-feet running across my face. Old worries flood in: will my child survive? Will he have all his limbs when he is my age? Will I get through the endless sleepless nights with my sanity intact? Am I a good mother? I can’t make the questions stop; they are as incessant as the scrabbling mice. I try to tune out both by reading a cheap beach novel by flashlight until the wee hours before sunrise, when the mice have subsided, my brain is tired enough to let go, and I finally drift off again.
When the sun heats up the tent to uncomfortable closeness, I wake, unzip the door, and crawl out to inspect the damage wrought. Astonishingly, the tent has survived the onslaught unscathed. At the base, though, are layer upon layer of little mice tracks in the sand, going round and round like the tiger around the tree in a story that my mother read to me as a child. In that story, a young boy outwits tigers who want to eat him by getting them to chase each other round and round a tree until they turn into butter. The boy’s mother uses the butter to make pancakes, and the boy eats an enormous stack. I wish the mice had been turned into butter for my morning pancakes. Instead, I prepare oatmeal on my tiny campstove and eat it on the beach, just out of reach of the waves.
*
My child is in his low bed, a mattress and box springs on the floor, tucked into the corner of his bedroom with walls the color of a clear October sky. A menagerie surrounds his tense little flannel-clad body, plush monkey and elephant, bear and hippo and duck all scattered here and there as reinforcements, the bunker around my fireball of a son. We’ve had another raging evening, his resistance taking up way more space than his body, and my pacifist core was pushed to its breaking point. It’s late, after midnight, but he hasn’t slept, and neither have I.
“I feel low, Mama,” he says, a common refrain in our household. We check his blood sugar for the millionth time since the diagnosis. I slide a tiny plastic strip into the blood glucose meter, black butterfly symbol facing up, butterfly flying away from the meter telling me it’s in the right position. The trigger makes a jarring click as it is released; a tiny needle pierces Max’s finger and a bright crimson drop swells on his skin. I touch the strip of plastic to the drop and it pulls the blood in. The meter beeps. 55. Too low, but not astonishing. I go to the wooden cupboard in the hallway and grab a juice box, apple inside, Big Bird outside. I work to jam the tiny, too-flexible straw into the tiny foil hole in the top, a task I swear children are better at than adults. Max sucks the juice down quickly; he never likes to drain it, but when I feel the swish of juice remaining in the bottom, I hand it back, and loud slurping noises tell me when his suction is getting into the far corners.
“I’ll check you again in fifteen minutes. Try to rest,” I say, and taking the empty box with its sunken sides with me, I head back to the dark refuge of my bedroom. I lie down and wrap the patchwork quilt tight around me, desperately wishing for sleep but not allowing it. In no time, it seems, the timer goes off on my phone. I drag myself up and return to Max’s bed.
Blood sugar is fifty this time. It should have gone up, but it’s going the opposite way. “I feel floppy,” Max says, “and I want FOOD. I’m really, really hungry. I want a granola bar.”
“I’m sorry, sweet pea, but we need to get your blood sugar up before you can eat anything,” I say with all the patience my weary self can muster, and I hand him another juice box, this one with Ernie on the side. I touch Max’s head, and it’s soaked with sweat, dripping. His body is fighting with everything it has, and I don’t know why. Fifteen more minutes, and this time, his blood sugar is forty-five and getting scary; I know that at some point, if it continues to drop like this, my child will end up unconscious and possibly dead. I bring out little packages of gummy rabbits, more juice, anything to try to counter a tide that is overtaking his little body. The smell of insulin surrounds us like a whisper, a little like bandaids or hospital hallways but also vaguely leathery and sweet like chestnuts. I scramble through my brain trying to figure out where I went wrong, when I might have given him too much insulin for some reason.
Forty-eight.
Fifty-two.
Forty-nine.
We are not making progress. Max’s pillow with the cowboy pillowcase is soggy from all the sweat. He’s crabby, and why not? I know he feels like crap, and I, as usual, am the easy target of his unhappiness. I try to soothe us both by reading some pages of the book we’re reading, one about a family of abominable snow-people, and try to stay with the story while my brain tries to shoot off into panic mode, thinking about all the bad ways this could end.
Fifty-five. I finally think to check Max’s insulin pump, which keeps track of all the activity, what his background insulin delivery is, what extra boluses he’s gotten to counteract the food he ate during the day. And there it is, the answer, the reason: an enormous bolus of insulin, late at night, in the middle of our angry struggles. Max’s smart, and has lived with diabetes for years now, and knows what insulin does to his body. In the throes of fury, he had given himself a huge amount of insulin just by punching the buttons on his pump, deliberately. Was he getting back at me for not doing what he wanted? Was he punishing himself for his own sense of failure to be the child he knows I wish he were? I don’t know, but this is the first time he has wielded his diabetes as a sword of anger and resistance.
We keep at it for hours, juice, stories, gummies, snuggles, barbed frustration, desperate love. Eventually, his blood glucose starts to rise again, and once it’s in a safe range, his exhausted body finally allows him to sleep. I stay up the rest of the night, checking regularly. Once the danger is over, all that sugar I’ve shoved down him overcompensates, and his blood sugar is high for the rest of the night, also not healthy but not as acutely dangerous. Every hour or so, I check and adjust his insulin level. By morning, Max’s blood sugar is back to a relatively normal level. He gets up much earlier than I’d like, hair going in every direction, hungry for blueberry pancakes and ready for the new day’s fight. My desperation for sleep is a cavernous hole in my gut as I drag myself out of bed to make breakfast.
*
The campsite is undeniably beautiful, tucked into the dunes with expanses of wetlands on one side, pristine empty beach on the other. A male red-winged blackbird, jet black with flashy wing patches of crimson and gold, hangs out nearby all day long, making his trilling, gurgling announcements across the marsh periodically. I wonder, how much of his display is for me and how much is for other blackbirds? He keeps me company, regardless. We hang out together in the early morning, watching the sunrise above the ocean’s horizon, feeling its rays warming our night-cooled bodies.
But this place is also harsh. The day’s sun is intense and there is no shade to be found near my campsite except in my tent, which gets stifling during the day, and under a small umbrella I thankfully had brought with me. Sometimes I huddle under its cover, slowly drawing and painting in my notebook little sprigs of seaweed I’ve picked off the beach, a mottled crab carapace, a twisted shell, but I wish it was a bit larger; I can’t find a way to fit my whole self under it at once. Sand is everywhere and gets in everything, including my sleeping bag and my food. The sound of the waves and wind start off pleasant, but are ubiquitous and unceasing, and wear at me over time.
I’ve brought my cell phone with me, partly for emergencies, partly to make a phone call to my family daily, and partly to be able to check on the weather forecast. The latter proves to be a mixed blessing: in this exposed place, I need to be able to seek shelter if a storm is coming, but I find that there are storms predicted several times a day at some level of certainty, and so periodically, I pack up food and a book to read and head up to the picnic shelter to wait out a storm that may or may not materialize, and more often than not doesn’t.
When the storm finally comes, though, it is enormous, monstrous. The picnic shelter is barely big enough for me to find a dry spot away from the rain blowing in from the sides. The lightning and thunder make me jump over and over again as I lay on the wooden bench and try to read. The wind whips in from the ocean with nothing to slow it down or break its stride. It jerks the pages of my book, shoots sand into my eyes and mouth, makes the rain go sideways, sends seagulls reeling. The lightning comes over and over again, and I know the storm is directly upon us when there is no pause between its flash and the thunder that I can feel in my bones. Just when I think it is letting up, it returns with an even stronger rush of energy. I give up reading, and just lie on my side, watching, letting its power shake and rattle and scour me, giving my exposed self over to the tempest.
*
One evening, Max’s blood sugar is over 500, past the point where his meter can give a specific numerical estimate and just says “HIGH” in big letters. In his anger this time, he had locked himself in his room, eaten lots of hidden candy, and unplugged his insulin pump, so his body is now trying to fight an onslaught of sugar with no defense. He’s come out of his room, first to drink a ton of water–high blood sugar makes him desperately thirsty–and then to throw up over and over again, his body trying to purge itself of the ketones poisoning it. I’ve been on the phone with his doctor, following her directions about how to administer an emergency dose of insulin to bring his blood sugar back to safe levels, and I’m doing my best, but Max’s rage makes it challenging. High blood sugar sends Max’s irritability through the roof; his fuse gets even shorter than, his frustration tolerance disappears entirely. “YOU DON’T UNDERSTAND,” he yells, and I know he’s right. I can’t understand, not at any visceral level; I can only remember what I’ve been taught. I keep trying to remind myself that this tempest that has taken over the body of my child is a disease speaking, not his own spirit. I try hard not to fight back, not to respond by yelling, but my own exhaustion lowers my own resistance, too. When he throws a toy across the room at me and its hard plastic corner thwacks my forehead, it’s all I can do to still my own rage. When the toe of his shoe hits my shin with great force and uncanny precision and I buckle in pain, I try so hard to find a little compassion inside for that little boy behind the fury. I try to remember to be angry at diabetes, not my child, but my weaker self weeps and wishes he didn’t have to make everything so brutally hard.
Eventually, the insulin does its work and Max’s blood sugar gradually inches down to a safer level, and as it does, exhaustion replaces the rage inside him and we can breathe again. He tucks his little body into mine on the couch as we watch Nemo’s father searching for him in the vast ocean for the millionth time.
*
The days here on the beach stretch and feel immense and open like the surface of the ocean. Minutes sometimes feel like the grains of sand on the beach, uncountable, unending. The restlessness and tension that consumed me when I arrived slowly release, tiny bit by tiny bit, with each wave that reached its fingers onto the sand and then pulled back. At first consumed by busy thoughts, my brain empties as the wind carries those thoughts off across the marshland. All the words that mean “slow down” are diminishing words: flag, sink, slacken, weaken, drop, fall, slump, contract, decrease. None of these fit: as I slow down, it is not a feeling of weakening or sinking, but rather of expanding and lifting and strengthening. As I slow, I have the capacity for more, not less. More breath, more life, more energy, more love. As I empty my brain of the busy, incessant worries and irritations, I am more filled, more enriched.
My skin is a little ruddy from the sun, my feet a little raw from the sand. Sometimes, I just want the waves to quiet, the wind to still, to give me a moment’s peace. Sometimes, I want to be able to hide from all the rawness, but there is nowhere to hide. Buffeted, swept, blown, scoured, I let go, stop resisting, let it in.
The last morning, I wake before the sun, and settle myself onto the sand, knees pulled up to my chest, doing nothing, thinking nothing, just listening to the waves, again again again, over and over, receiving the wind, watching as the sky turns from slate to dove to a delicate blue.
As I gather my belongings at the campsite, I check carefully to make sure I’m not overlooking any piece of trash or stray tent stake behind on the sand. Stuffing my last items into the corners of my pack, though, I wonder: what can I leave behind, other than footprints that will quickly wash and blow away in the endless weathering of water and wind? Is there some portion of the stress and anxiety that I brought with me here that can stay in the dunes, that can be washed out by the waves? I do feel lighter, easier, less tangled after these days exposed on this beach. I also know I am walking back into the same life I left behind, that the same pressures will be waiting for me back home. But maybe, just maybe, there is a way to let some of it go.
I carry myself and my belongings back to the ferry, ride through the intercoastal waterway between the islands once again. I land back on the grassy bank where I left that weight days before, and take up some of it, able to carry it again, to step back into the responsibilities and routines of parenthood once more. But some of that invisible burden I leave behind. I don’t need it anymore. It can stay here.
Scientist by training, educator by profession, and artist by nature, Amy Boyd lives and writes in the Blue Ridge Mountains of North Carolina.
