A few weeks ago, Jon and I decided to take to the sea with Sam and Talia (now aged six and four) on a 35 foot sailboat off the coast of Maine. This idea inspired a variety of reactions from friends and family. Most opinions centered somewhere between concern over our sailing prowess (which thankfully is better than you might think), disbelief that “camping” on the water with children could be fun, and my personal favorite: “that’s not crazy – that’s completely, totally, bat shit crazy.” I knew that certain elements of the trip would push the limit, but I wasn’t sure where the limit was so it was hard to worry too much about it. Armed with five vials of insulin, three loaves of gluten-free bread, and a satellite phone, the four of us set off from Southwest Harbor in search of adventure.
The sun was shining and I was giddy with how untethered I felt as we cast off. The kids were exploring the limits of their harnesses (about three feet) and Jon and I were figuring out the systems of “Circe” a beautiful 1964 Hinckley with a bright red hull. We plotted a course for Little Cranberry Island. Within minutes an opaque fog started to roll in and we couldn’t see 10 feet in any direction. Circe was very well-equipped with both radar and GPS. These instruments reminded us that the world wasn’t far away, but the isolation of that moment was striking. Sam said, “Mom, I feel like we are the only people in the world” which was exactly what I was hoping for if only for a brief two weeks.The idea of being alone and “off the grid” can be both frightening and exhilarating. Obviously the fact that Sam has diabetes added a layer of complexity to our preparations for this trip. The possibility of an emergency is omnipresent and in this environment we had to accept that we might have to manage one on our own. My cell phone and blackberry had limited service from the moment we left the dock. After a day, we acclimated to the cadence of being on the water and I stopped checking to see if I had service. I was comfortable that we had the boat radio, the satellite phone and most importantly the proper supplies (glucagon) for a diabetic emergency. When I think back five years to the fact that I was afraid to leave the hospital in New York City after Sam was diagnosed with diabetes – afraid that I would be unable to keep him alive – I am amazed at how far we have come.
I was relieved after we successfully picked up a mooring at Little Cranberry. It had been more than seven years since we chartered a boat (and never with our children), and I felt that if we approached each small challenge individually the trip would be a success. Through the dense fog, I could see a single light on the dock marking the restaurant where dinner was waiting. The only thing separating us was a few hundred yards of harbor and the task of getting the kids off of the boat we had just secured, putting them in an eight foot inflatable dinghy in the dark, and going ashore. Jon started the engine. I passed the kids down to him, hopped in and released the line that had us secured to the boat. And then the engine died. We were slowly moving away from land on the dinghy and our sailboat was fading into the fog and darkness. Jon picked up the oars that were in the bottom of the little boat for this purpose, rowed us back to our sailboat where we tied on and figured out what was wrong with the engine. Once it was humming consistently, we went ashore.
The fog gave us the same view from land that we had seen from the water of the single bright light on the dock. I focused on the kids, and the fact that they trust us so completely. They believe that we will keep them warm, safe and dry. Even when they were wet, cold, and drifting rudderless through the ocean at night they still seemed to trust us.
We ordered lemonades, declined
the warm bread basket as we usually do in restaurants with Sam, and scanned the menu for gluten-free options. Sam chose a cold cantaloupe soup with chilled lobster and edible wildflowers and we all shared a lobster cioppino. 
The meal concluded with strawberry ice cream and by the time we went back outside the fog had dissipated into the night and we could see all the boats in the harbor as clear as day. There were more stars than our children had ever seen and we lay on deck for a long time staring at them. The next morning, the wind was blowing like crazy. The halyards were banging against the mast and the kids ate breakfast down below while we readied the boat. It was a fairly long haul in choppy seas to our next port. This was the only day the kids didn’t feel well – particularly Sam. Talia fell asleep immediately upon encountering the swells – she is a professional at powering down in difficult situations. Sam worked through it and spent his time looking for bald eagles (which we were lucky enough to see several of).
Once we got back into the lee of the island, the waves subsided and we sailed into the stunning Frenchboro Cove – a small island with a school, a church, a working dock, two small seafood shacks and miles of hiking trails. On our first expedition, Talia collected an impressive bouquet of wildflowers and left them at the entrance to a small graveyard in honor of my grandmothers who passed away in April. We all slept soundly in the protected harbor.After a breakfast of gluten-free pancakes on the boat, we went on an early morning hike to pick wild blueberries in the woods.
The deeply wooded trail eventually led to an amazing rocky beach. We were alone, far from the boat radio and the Satellite phone that turned out not to work anyway. Sam started to drag and I knew he was low. Although we had juice and a snack we were starkly reminded of the invisible boundaries this disease puts around us. The days continued like this – surrounded by incredible beauty, filled with the emotion of really being able to see each other, and interrupted periodically by challenge.
The parallel with our everyday life was magnified out on the boat. Some days are all challenge dotted with moments of beauty and other days are the opposite. Conditions change in an instant and while it’s imperative to have the right supplies it’s equally critical to be able to navigate through the fear and doubt and “manage” the daily “emergencies” as they arise. The fact that I am actually a professional emergency manager for work is ironically not an advantage. Quite the opposite actually as my risk index is pretty tuned to all of the things that could go awry on any given day. I can imagine the "job" coming over the radio: We have a confirmed confined space rescue: Two parents are locked in a boat head over marshmallow dispute. The suspects are both three feet tall with sticky fingers...
We definitely took calculated risks on this adventure and pushed the kids pretty hard. We didn’t find their limit. By the end, the kids were driving the inflatable dinghy.
The fear and doubt I felt lowering them into the tiny boat that first night on Little Cranberry disappeared after a few days the same way the first night home in October of 2006 is a distant memory. Somewhere in the back of my mind there is always a gnawing discomfort for the safety of both of my children, but it’s not looming over me in the same way anymore. It’s not complacency and it’s not confidence. Diabetes doesn’t allow either one, but somehow pushing ourselves in other ways was very restorative. There was a night we ate “egganogin soup” (named by the kids for Eggemogin Reach) for dinner which consisted of giant marshmallows roasted to perfection with melted chocolate and gluten-free graham cracker crumbs served in a bowl (58 carbs). Even with a double reef in the sail, there were a few times we had the leeward rail skimming the water while the kids held on with delight. We hiked a country road at night under a brilliant sky and over beaches covered with giant boulders. We sailed wing on wing and anchored in desolate coves.For a moment, the four of us were the only people in the world – without limits, without fear, but always with a juice box.
