Rare Destinations: Vacationing with a rare girl

It is no small thing leaving on vacation when you parent such a rare girl. It is a much larger thing when you leave for a tiny island off of Maine more than an hour away by ferry, to a cottage with no running water or electricity. Something akin to camping with walls and a wooden floor. School had let out just a few days earlier. I was ready to leave the every-day grind behind for six glorious, unplugged days reuniting as our fearsome foursome. It has been a tough year. Hell, it has been a tough decade.

I stand in our driveway, staring at our vehicle, overwhelmed by the amount of stuff packed in and above—we both seem to heave and sag from the sheer weight and burden of it all. I worry that our beloved Maine destination no longer makes sense. We are tempting fate. What if Talia gets sick or has breathing problems while we’re there? My mind writes the headlines I am sure will appear above the fold, in the Bangor Daily News: “Reckless Parents Risk Child’s Health With Island Excursion…”

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Three hours up the coast of Maine, out of the picturesque port town of Rockland and a sometimes vomit-inducing ferry ride, North Haven is a soul-feeding, magical island nestled in Penobscot Bay. Its eleven square miles of fir, evergreen, birch and the world’s most gorgeous display of lupine is woven with a constant ebb and flow of sea glass-colored foggy mist and the heady scent of sunbaked pine.

Surrounded on all sides by endless channels and small harbors, grassy meadows and rocky outcroppings standing tall above the sea, around 350 hearty souls make North Haven their year-round home. Summer months swell to as many as 1,500, attracting an eclectic mix of visitors who flock to the island for a few months or just a day. From hippie rusticators, to fourth and fifth-generation summering families, to a few famous or infamously rich, with gobs of money and yachts the size of a small country, the tiny downtown comes to life with a buzz unknown in the colder, darker months.   

Nearly twenty-five years ago, I discovered North Haven through the eyes and heart of one of those fourth and fifth-generation summer sojourners. Having already fallen in love with my best friend and future husband, I fell almost as hard for North Haven.

In our twenty-something lovesick haze it seemed we had the island to ourselves, as we roamed its beaches and forests, digging mussels and clams, swimming in its body-numbing cold waters. I could feel the ghosts of John’s relatives who had made North Haven their year-round home, working the land or sea. Many were teachers, escaping to its shores for two or three blissful months each year. Another was an artist whose gorgeous watercolors now grace our walls and so many others’ acquainted with the island.

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A certain relative--a favorite uncle or cousin--was known as the “Mushroom Man” or was it the “Mushroom King”? A kind man with a lumberjack’s beard and a lilting, hard-to-place accent, he was heralded for his super power abilities to locate exotic, edible fungi. On a long weekend, many years ago, as John and I floated around the island, buoyed by our engagement exacted through wishing stones and a celebratory, chilled bottle of champagne hoisted from a lobster trap several feet under the sea (but this is a story for another time…), we were foraging for mushrooms, immune to the rain and mist soaking our clothes, as we turned a corner and nearly fell into the arms of the “Mushroom Man/King”. He carried a canvas bag of spoils and helped us to find even more. I would not have been surprised by the sight of a wood sprite flitting among the pines or a selkie staring curiously back at us from a cresting wave. It is that kind of place.

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As I turn my attention back to the car and its load—the weight of worry in my heart and mind—I consider the possibility of not going to Maine. We have shared the island’s raw beauty with our girls since they were small babies—its magic now deeply rooted in their souls now, too. I heave a deep sigh, recalling what then seemed like an enormous challenge—to heft along a portable crib, a week’s worth of diapers, tiny clothes, baby backpacks and slings.

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It is tempting to stay put, to give up on trying to recreate the comforts and lifelines of home in such a remote place. As CMT4J progresses through Talia’s body, devouring her nerve cells, turning muscle into fat and cellular waste, she loses more and more strength. Holding her head up, moving her hands—breathing-- become increasingly challenging. Life is harder every day. It would be easier to stay at home than venture out our front door.

And so over the years the challenges mount. The planning becomes more difficult and deliberate. The things we carry get heavier and harder.

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Since Talia had the flu and went into respiratory failure a year and a half ago, her breathing needs have become our biggest concern. She needs a bipap breathing machine at night to keep dangerous CO2 levels down. She uses a nebulizer at least twice a day.  A cough assist machine helps to clear her lungs and enable her to cough—something she no longer has the muscle strength to do. These all sit, at the ready, amongst packed bags of clothes and food.

Two large shoe-box-sized batteries provide enough power to run all of this equipment for a few days. A solar panel at the cottage supplies additional power and recharges the big batteries.

Talia’s wheelchair is the next most necessary piece of equipment. Her neon-green stander made the cut this year—its contribution to daily life is now enormous, allowing Talia to stand-- its straps, harness and knee blocks holding her upright, giving her a chance to participate in activities at eye level, increasing bone strength and aiding in digestion. Its base takes up a quarter of the space we have behind the girls’ seats. Its bright, green metal legs and connecting parts extend outward and upward, like a spider, toward a large, black, upright, seat. One has to be clever and spatially gifted to make the most of the space in between its appendages. Next to it sits a large, cotton bag full of blankets and pillows, the necessary props to help elevate her head and chest and support arms and legs in the absence of a hospital bed.

On top of the van sits an adaptive, all-terrain wheelchair. Its long, low-slung frame and knobby wheels give us a fighting chance at bringing Talia with us in the Maine woods or down a root-covered trail to a rocky shoreline or gravel beach.

Scattered among the sobering collection of medical supplies and equipment are visual reminders of why we make the journey. Teaghan’s new, sky-blue kayak rests alongside the adaptive wheelchair. Games of all sorts sit piled up in neighboring canvas bags. Books and trashy magazines call to me from the front seat. Paddles and PFD’s. Headlamps and rainboots for exploring the ravine below our cottage—or the long walk to the outhouse. Five days of junk food, wine and dark chocolate. We will not go hungry. We will not lack for things to do.

It is a lot to consider. Its load both a burden and a ticket to live a meaningful life. This life—how extraordinarily challenging and beautiful it can be all in the same breath. How joyously fulfilled and desperately empty I can feel all at once.

We’ve talked long and hard about the implications of staying or going. The missed opportunities if we don’t. The risks if we do. We don’t know how many years Talia has. Only two short years before Teaghan heads off to college.  We’ve decided that a safe, predictable life devoid of risk and shared adventure is the hollowest of shells in which to live.

I have seen the shed casings of cicadas—a paper-thin, fragile vessel—an exact replica of the creature, itself, frozen for a moment in time, no trace of life—a broken shadow of its former self.

My mind conjures up such images in the darkest of hours. Both haunting and helpful in pointing the way toward living.

And then, because of it--or in spite of it--all, we go.

We fold ourselves in and among all of it, slipping out of our driveway in the pink-orange light of dawn. We drive and hug the coast, stopping only when we see the slips of Rockland Ferry tower above, waiting to transport us across the sea.

Later that morning, I wrap my arms around Teaghan as we stand, against the wind and rusting rails of the ferry. The pointed firs of North Haven’s coastline come into view. A halo of fog encircles the tiny island. An osprey takes flight from its nest atop a lonely outcrop of jagged rocks. I look down at my daughters’ faces. They are serene, content, transcended. And I know that we will have chosen to live.  

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