Passing the year mark in any disease is usually a significant benchmark. For our crew, May 2017 marks the 365 days that we have cruised with a type-one (T1) diabetic. Anyone familiar with diabetes is aware of the pressures on a parent to successfully manage the illness, particularly during the initial period of understanding the disease, calculating carbohydrates in the diet and administering the necessary drugs. With a T1, the learning curve is steep – and getting it right is essential.
For those unaware of the day-to-day of supporting a dependent diabetic, the regimen involves routine blood checks to verify the level of glucose in the bloodstream – too low and the patient can “crash,” too high and the body starts to build toxic levels of ketones in the bloodstream. If unchecked, the stress on the body leads to long term organ damage. Continuous monitoring of food intake is essential to running the right insulin-to-carb ratios – carbohydrates have to be precisely measured and a level of daily intake has to be maintained. And of course there is tell-tale sign of a diabetic – the hypodermic needle.
Our story started a year ago in Thailand, on the verge of a near-catastrophic decision to go to sea. At the time, Braca was showing signs of increasing illness but we were unable to identify the cause. As anyone who has experienced diabetes knows, the symptoms slowly creep up you. At first there was increased thirst and increased urination, understandable in a move to the tropics. Then he showed signs of decreased appetite, but young children are notorious for being picky eaters. Then he started to become lethargic and showed little interest in normal social activity which we interpreted as boredom, understandable with a change in environment. Realizing something was going on, either physical or emotional, I took him to the health clinic and the clinician diagnosed him with vitamin deficiency. We got a small box of multi-vitamins. Regardless of supplements, things started to get worse. He started bed-wetting, sleeping during the day, refusing meals altogether; things weren’t right. I took him to the international hospital and the physician diagnosed him with throat ulcers and constipation. “One week,” the doctor promised, “and he will be back to normal.” We left with an enema and a prescription for oral thrush.
Meanwhile we continued to prepare for our season ahead, a year-long voyage that would take us 12,000 miles across the Indian Ocean. Provisions were fully stocked, a multitude of boat maintenance requirements had been ticked off the list, 850 litres of diesel and 1400 litres of water sat in our tanks. The boat was set to go, and so were we. Ahead lay the colours of Sri Lanka, the aquamarine necklace of Maldives, the isolation of Chagos and the challenges of Africa. After all the pressure of constant work on the boat and concern for Braca, I felt like leaning out over the pulpit with arms reaching out to the sea and yelling at the top of my lungs, “Indian Ocean, thanks for waiting. We are finally on our way!”
We cleared customs from Thailand on the 10th of January 2017 after getting the green light from the physician and sailed to our departure point. Still, I had a nagging feeling that things weren’t right. The evening before departure we wandered around a local carnival, trying to get into the festive spirit but Braca kept dragging his heels and complaining that his bones hurt too much to walk. As we shouldered him through the crowd, apathetic and lethargic, neither of us felt confident that his condition matched his prognosis. Then things began to spiral. We were half way through his meds but he was still moping around and looking miserable. During dinner, he violently vomited at a stall-side market and we whisked him back to the boat, tucked him into bed and tucked ourselves into the internet. Lethargy. Weight loss. Increased thirst. Increased urination. None of his symptoms matched the doctor’s diagnosis. What we did come up with, however, was unimaginable: Addison’s disease, depression, diabetes, or cancer. Regardless of the doctor’s assertion that all would be cured through prescription pills in a week, we began to question his diagnosis and in a defining moment we turned back from the sea. It was a decision that probably saved our son’s life.
At first light we pulled up anchor and raced back to Phuket. During the night Braca had slipped into a heavy, rhythmic breathing pattern unlike anything I’d witnessed before and I was manic with fear. Having already cleared out of the country we were now illegally back in it, but we disregarded customs protocol and raced into the paediatric department at Bangkok Hospital in Phuket. The doctor concurred: Weight loss, vomiting, and rapid breathing were not signs of a standard oral infection, nor was the hyperventilation or dehydration that he was now expressing. Braca was immediately whisked into the Intensive Care Unit and dropped into a flurry of drips, drugs and needles. Our son was diagnosed with Type 1 diabetes and was in critical condition. With blood glucose levels sky-rocketing and severe ketoacidosis, he was at the final stage before system shut down. “Without sufficient insulin,” the doctor explained, “your son’s body has been unable to process sugars and he has been burning fat to survive. As a result, the ketone waste has been acidifying his blood and if untreated, he will quickly go into a diabetic coma. People can die from ketoacidosis.” Through a thick mist of shock and disbelief, we numbingly fell into an alternate universe, vaguely aware that our plans and lifestyle had been dashed on the rocks of an incurable disease.
Four days in intensive care with a four-year old is one of the saddest, scariest experiences any parent can go through. I sat at his bedside and watched him sleep for hours on end, an enthusiastic, energetic little boy zapped of all his spunk and spirit. Trails of tubing spiralled from his body, hooked up to a complex assortment of beeping and blinking machines. At the same time, it was a relief to be in the hands of medical experts and under proper care after the dizzying weeks of confusion and helplessness. Neither of us had imagined that he had such a serious illness; we had scoffed at the list that our online research predicted. I remember looking at my husband and saying, “Surely none of this applies to our son!” We never imagined the worst, but it seemed the worst was now upon us.
Following his period of stabilization, we were transferred from Phuket to Bangkok under the care of the diabetes specialists at Bangkok Hospital. The luxurious five-star accommodation notwithstanding, there were some significant drawbacks to our situation. For one, when discussing medical education and treatment, language fluency is a must. I sat through sessions where the diab-specialist smiled widely and repeatedly pointed to a pages in a booklet translated to English, without being able to discuss the material or answer a single question. The nutritionist walked me through lists of diabetes-approved foods, none of which fit our western diet. The doctor was very knowledgeable but her ability to transfer her level of understanding to me was very poor. Given I had travelled all the way to Bangkok to get training from the top experts in their field, a week into the program and I was still mystified about the disease. Gradually Braca’s energy returned, and he took on the appearance and attitude of a healthy four-year old; keeping him entertained in hospital was becoming more and more challenging. We both wanted out of the sanitized walls of the hospital, but I was far from being confident that I could take him into my care.
As a parent, it is mindboggling to lose the confidence of being able to care for your child’s basic needs. I would have to get comfortable pricking him for blood, jabbing him with a needle, and micro-managing every aspect of his dietary intake. I would have to constantly survey his body for signs of a low. Is he sweating, pale? Are his hands shaking? Did he simply trip or was that the result of a sugar-crash? Having a four-year old self-diagnose is an impossible task, so I would have to become his internal monitor from the outside. And I would have to become familiar with the word no. “No, you may not have a piece of toast.” “No, you may not have that apple.” “You may have water, but no, you may not have a glass of milk.” Regimen and restriction – welcome to our new world.
We were finally booted from the nest following three weeks of hospitalization and rudimentary training acquired predominately through sign-language. We were discharged, but we were not allowed to fly. Before we could cut the umbilical cord to our medical support team, we needed to prove we could keep Braca stable under our own care. Excitedly we packed our bags and headed for a nearby hotel, ready for the next step. Rather than glide, we crashed hard. Not five hours under my supervision and we were racing through dense traffic back to the hospital with severe food poisoning. It was a painful but important lesson learned: caring for a diabetic is hard; caring for a sick diabetic is ten times harder.
Over the weeks that followed we learned to take small steps, we learned to deal with each problem as it presented itself to us, and we learned not to look too far into the future. Our small steps took us further and further into Bangkok’s crowded streets, down muddy canals, up towering golden Buddha’s and through vast shimmering temples. We set out each morning with our tourist map, our insulin kit and the doctor’s direct number. Day by day we crossed off the list of Bangkok’s finest attractions and wrote down blood levels and calculated insulin doses. At the end of two weeks, we were ramped-up and touristed-out. We’d proven to the doctors and ourselves that we could fly. Which brought us to our next quandary: Where do we fly to?
We looked at our options: Expatriation to America, repatriation to New Zealand, or to continue under the support of the team in Thailand. Each had its merits and its drawbacks. We’d been in contact with the Madison Clinic for Paediatric Diabetes at UCSF, a leader in children’s diabetic research and treatment, and Braca was accepted into their program however we weren’t guaranteed medical insurance coverage. We could repatriate to New Zealand and the diabetic team at Starship was ready to receive us, however it meant leaving the yacht in Thailand for an undermined amount of time and our home in Auckland was rented out. We could continue under the care of the Thai diabetic team and continue to live on-board our boat, already prepared and provisioned for us, but we were not prepared to transit oceans with a newly diagnosed child so travel would be restricted to Thailand for another year; plus, a return to New Zealand would get us under the care of our main medical support team and we’d get another attempt at comprehensive training, this time in our own language.
Eventually we chose repatriation. It is worth noting that our insurance was hoofing the bill for our medical expenses and incidental costs. In a stroke of luck, it was first year we’d ever purchased medical insurance as an express requirement for visiting the Chagos archipelago, a group of atolls in the middle of the Indian Ocean. Due to this planned stopover, we were absolved of paying the substantial bills we’d incurred through our ordeal. After a mere month on their books, we called on TopSail for assistance and they stepped up to shoulder the considerable burden of our bills. Their final action was to assign a flight nurse to escort us back to New Zealand. While they didn’t say it, their unspoken words were, “You are Starship’s problem now.”
As our cruising companions raised their sails and caught the wind westward across the Indian Ocean, we folded our wings and flew south. It is impossible to speak highly enough of the Starship, New Zealand’s primary paediatric hospital, and its paediatric diabetes department. The team had been briefed on our case and were ready for us when we got there. The day following our arrival in Auckland, we were readmitted into hospital for observation and training. Our first session with the senior consultant was our next defining moment and a turning point in our attitude towards our future with diabetes. While we were still reeling from the knowledge that diabetes was a full-care, incurable disease, the diabetes team were used to supporting families of diabetics. In New Zealand, that often meant people living in rural townships or remote island communities in the outlying Pacific Islands. Our case was unique as a cruising family, but our obstacles were not unknown. While we were still grappling with the idea that diabetes had changed us forever, it was the expectation from the diabetes team from the outset that we would be returning to the boat and a life afloat. As soon as we were admitted, the conversations were optimistic and encouraging: Our training program would be concentrated and accelerated, and we would be issued a supply of insulin to last us a year. The resounding message was, “Diabetes should fit into your life, not rule over it.” So, with their unwavering encouragement and support, we started to let our dreams seep back out of the box. In doing so, we had to confront our own level of confidence and ask ourselves the questions: Could we return a life on-board the boat? How capable were we care for our son completely removed from medical support? What if he became ill and we were faced with a situation we were too inexperienced to handle?
In order to answer these questions, we needed a trial run. A month after arriving in New Zealand, we booked ourselves on a three-week campervan tour of the South Island. We drove the length of the island and enjoyed being tourists in our own spectacularly beautiful country. It was not only therapeutic for our over-stressed souls, it was bonding for a family who had been split up for much of the preceding ordeal. Finally, we were finally cut loose to laugh, play and bond as one unit again.
After an amazing tour de force of the South Island highlights, we’d proven ourselves capable of supporting Braca outside the support of a trained medical team. Now that we’d proven our capability, it was time to get down to logistics. We’d become used to life with a diabetic, but we needed to know if we could transition from a life ashore to a life afloat. Diabetes is a common disease, but who was out there managing the condition in the cruising community and what was the experience like for them? What did they need to account for in restricted confines and restricted resources? Was there any inherent risks that cruising presented that we needed to consider? All of the cruising diabetics we were introduced to were adults who had been managing their condition for years. However, diabetic children are different since they have smaller, less stable metabolisms. Furthermore, a diabetic child at sea is removed from all traditional support systems. Our key question was, “How far from expert care and support should a newly diagnosed four-year old diabetic child travel?”
There were also practical considerations we had to address. We needed a refrigerator that we were confident in as we would have a year’s supply of insulin on-board. A replacement was ordered. We needed to guarantee communication with our diabetes team should any issues arise, and our current SSB radio was unreliable. We upgraded to a satellite link via an IridiumGo. We needed a year’s worth of supplies that were typically dispersed via one-month prescriptions. Our all-star diabetes team and friendly local pharmacist stocked us with a two-year supply of insulin, glucose monitors, testing strips, injection pens, ketone strips, emergency glucagon kits and an assortment of other diabetes paraphernalia. In a whirlwind of planning and purchasing, we readied ourselves and spread our wings. We may have to find a new route for the season, but these four seabirds were heading out to sea.
Which direction to look, however, was less straightforward as choosing a route for what remained of the year required a number of considerations. We were too late to do follow our initial Indian Ocean itinerary and an attempt to re-join the 2016 fleet would mean a long ocean passage and missing out on some of the highlight destinations completely. At the same time, another season in Malaysia and Thailand did not appeal to us. Given we would be traveling out of the main cruising season, where do we go? Sumatra popped up on our radar. We could delay our Chagos permit until the transition season and the Maldives could feature in our route after all. In April, just two months after our repatriation to New Zealand, we returned to the boat; in June, just four months after diagnosis, we began our 2016 cruising season. The following six months cruising was one of our most stunning experiences to date and an example of what can happen when the best laid plans fall through. Sumatra, Cocos Keeling, Chagos and the Maldives all proved to be top class cruising grounds and being there on our own was a testament to what is achievable against the odds.
So, what is it like sailing with a diabetic? Some of it is standard diabetes stuff: We test his blood glucose levels four to five time a day and he has an insulin injection after every meal. Braca has learned to identify when his sugars are low and has learned to say no when offered sweeties by well-meaning locals. Physical activity drives him down quickly so we carry a high-sugar “quick fix” in an emergency kit wherever we go. Some of our issues are unique to the cruising lifestyle: The stores of most long-term cruisers are stocked with pasta, beans and rice which lead to a carb-loaded diet. Fresh produce is often hard to come by and few island countries offer healthy snack alternatives. While cruising in isolation of support was initially a nerve-wracking experience, we quickly realized there were many advantages to our sheltered situation. It provided us a controlled environment where we could learn the nuances of Braca’s condition and the unique characteristics of his body. Unlike a child at day care or school, Braca is rarely out of parental supervision so we don’t need to worry about a caretaker mistaking a low, forgetting to take a reading or miscalculating insulin. Braca never goes to cake-fuelled birthday parties and is relatively incubated from the typical flus and colds that run rampant amongst school children. Diabetes is a life-sentence no doubt, but we learned that it is not a sentence to your respective prison. The verdict and the terms of its parole are defined by you.
This month marks our twelve-month milestone of cruising with a diabetic child, and our phoenix has indeed risen from the ashes. We started with small steps through those dark days when our future seemed so bleak and our dreams were buoyed by an encouraging family and supportive medical team. Our plans were based on risk management and the mitigation of any foreseeable complication, as best we could identify them. Finally, we trusted ourselves to let go of uncertainty and released our shore-bound tether. One year ago we headed Atea’s bow towards the open sea and found peace and simplicity in the wide embrace of the ocean, and through the experience we learned what the doctor said was indeed true: Diabetes should fit into your life, not rule over it. However you choose to live it.
9 Replies to “Take Two”
What a moving account of living with a disease and not letting it become the center of your life. Here is to the half full glass of wine. Hope to see u all in Cape Town. Much love. ❤️❤️❤️
Diabetes has become the centre of our life, as you will see when we connect. Life with a diabetic when you are the caretaker is full time; but we chose to take our new universe with us and it is working for us. Here’s to many, many glass brimming at full when we connect in Cape Town!! It will be so amazing to finally make our reunion in CT a reality!!
I cried reading this, but having seen you guys in action during that lovely visit, I was so impressed by your handling of your lives. Amazing. I had face time with Manda shortly after and we both agreed that the added responsibility of a potentially sick child takes a special gifted parent to make life normal for your kiddo. And you do xxxx
Impressed, thank you – and probably also daunted by the task of it all! Regardless, it was wonderful for you to see a part of our lives – and us – in our day to day, and for all of us to get time together. Your comment above is very touching; thank you. A big hug to GUP for us, and thanks for again following our stories. Hope next year we get to tell them all to you in person again!
Well done Braca and both of you, and another beautiful write up. I remember bouncing around Indonesia watching him light up the faces of the Indonesians he met and played with. Glad he’s found his groove again.
Yes, bouncing babies on boats…. I see it wasn’t enough to scare you off! I just read your own post about shopping for boats appropriate for small kids and was thrilled to hear cruising with your boys are in the plans! Fantastic news!! Can’t wait to follow your own experiences when you get out here again, with small deckhands onboard 🙂
Braca’s beautiful smile is testament to the fact he is and has been in the loving care of an extremely competent Mom. xoxo Sharon
Thanks Sharon – his diabetes certainly hasn’t slowed down his upbeat personality or changes his gregariousness or love of people… he’s a winner of hearts, for sure! Look forward to bringing him home with me next time, and us all getting to play together. Miss and love you xxx
Dearest daughter of mine….I have read and reread the blog and am so touched by it. I can not help but shed some tears when I realize all that you, Braca and John went thru, especially when you were trying to get an appropriate diagnosis. While I had know that it was a close call for Braca, actually reading about it and getting the history from start to finish, made it so much more real. It must have been one of the most terrifying moments in your life. I know how scared I was when you were diagnosed with African Tick Fever and I was told it could impact your heart and how ill you might become but it was not nearly as close a call as you had as we were able to get a quick diagnosis and immediate treatment.
You are an amazing writer, Kia, and express so much in each blog that you send. It makes me realize how much I learn about you, your life, and your feelings when I am able to read what is happening in your life. When we are together we stay busy and occupied with life, children, and on the go and do not talk with the depth that we seem to be able to do when we write to each other. It is a gift to have you get to know you better in any way that presents itself to me.
The photos that you put with this blog are beautiful. I took a lot of time just looking at each of them. You have captured your son in so many of them. His sweet, bright, and loving spirit comes through. He is such a very handsome little boy and so lovable. It is clear when I see you and John with Braca and Ayla what a loving family you have and how much affection flows around your children all the time. They are lucky to have you both as parents. You are gifting them with your total appreciation of their individual styles and personalities. It makes me so happy to see the love that is so evident and the joyful way you interact with them.
Not much news here. I got new tires on my car, a 78,000 mile lube job, and tomorrow taking it in for a recall on the air bags. Vanilla (called Van) shall be fit for the drives around California coming up with the Venricks. I think you know my car is named Vanilla because she is plain, not a fancy gal, but she does what she is meant to do and that works for me.
This evening I am taking T, L, T, & J out to dinner to celebrate Lynne’s birthday. I think that she is a year younger than you are. They boys are at the age now that they prefer time with the neighborhood friends which is healthy and natural so I do not see them as often as I did before Tristan started school. He is a real friend maker and now that he is in school, he has gotten to know children in the neighborhood. Todd and several of the parents in his school take turns during school time sharing children so everyone gets some time for themselves. It gives the children the opportunity to play together everyday.
When I was a child, we left the house early in the morning during the summer months and roamed the neighborhood with the other children. I assume that the parents kept an eye on us but we seemed to think that we were free of parental supervision from dawn to dusk. Everyone just had to be home for dinner and check in sometime during the day. Now in the USA the children are supervised more closely and so have more activities arranged. They are much older before they have the freedom that we enjoyed.
One more thing before I sign off. This morning I woke up about 6:30, fixed myself a cup of coffee and some toast and sat down to read Home Going by Yaa Gyasi. I am loving it and having trouble putting it down. I kept thinking that I should get up and get work done around here and then I heard your voice in my head “just relax and enjoy yourself”… “you deserve pleasure time in your life”. It was so clear that it was a Kia message. I smiled, fixed myself a second cup of coffee and continued reading for another hour. It was delicious. Thank you, you are teaching me that the old messages that I have to be responsible, work hard, take care of things that need to be done, keep the house organized, prepare food for company, make my bed, etc., etc. can just be put on the shelf and I can do what gives me moments of rest and pleasure! See I do listen to you and know you have a lot to teach me.
Love you gal. Congratulations on another good article. Norma
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