The lessons that we learned on our bike tours served us well during Lukas’ illness. Sadly, our little son was unable to ride up that last hill. His liver, which never worked properly, stopped making clotting factors. On Christmas Day, the 41^st day of his life, Lukas started bleeding. Early morning the day after Christmas, we received the call we’d dreaded and rushed back to the hospital. His blood pressure was almost non-existent, and our poor son was pale and ghostlike despite constant transfusions. It was clear that we had to let the bleeding stop.  Despite Lukas’ grave condition, his eyes opened, and he welcomed us. His big, beautiful, blue eyes looked from side to side, and danced with us one last time. He said goodbye in the only way he could.  Lukas was dressed in baby clothes for the first and last time, wrapped in blankets, and placed in my arms for the first and last time. We held Lukas, told him we loved him, and he died in our arms. 

Lukas left his imprint on our hearts and lives; we are forever changed. The lessons learned while biking have been augmented by those learned while living with, loving, and losing our son. Lessons of patience, strength, and bravery. Lessons of self-reliance, but more important reliance on each other, our families, and our friends.



The unexpected is not always quite so frightening. On the island of Arran, in Scotland, we spent the first hour of our day riding up a single long, steep hill. It had a 7% to 10% grade - for every mile forward, we went up about 500 vertical feet. After 5 or 6 miles, with 40 pounds of gear, it begins to add up, and we were exhausted as the road finally began to flatten out near the top of the pass. The view made it worthwhile, though: an impossibly green valley, the ruin of a castle sitting on the bay, and a small village. We began our descent, a 4 or 5 mile glide into town. At first, it was a faint hum. Then the hum became notes, echoing through the valley. As we got closer, it resolved into a bagpiper, playing Amazing Grace at a funeral. The memory still takes our breath away.

Lukas' birth was the most unexpected thing that ever happened to us. We went to the obstetrician’s office that morning, expecting a quick ultrasound, some reassurance, and then I could join my friends for a round of golf while Laura returned to work. It was Friday, after all, and the weather was beautiful. Four hours later, Laura and I learned that Lukas was near death; instead of being bathed in amniotic fluid, the uterus had become a desert, and he was struggling. A day or two more, and he would have died in utero. An hour later, I stood in the operating room as over 5 pints of blood poured from Laura's uterus, and my tiny 1 pound, 7 ounce son uttered his first cry.

We're not kidding about the last one - it actually happened several times while biking on a narrow lane in the Dingle Peninsula in Ireland, with a maniacal German tour bus driver bearing down on us. Keeping lines of communication open was important for us during Lukas’ stay in the NICU. We talked about the things we would do with Lukas when he came home (like a bike tour!), which helped keep us optimistic about his future. We also made sure we communicated with each of his nurses by being there for part of every nursing shift, and trying to spend a few minutes talking to the neonatologist and surgeon at least once a day.  We also communicated with Lukas singing him songs, sharing finger hugs, and telling him we loved him. 

As a physician with a critically ill child, I also had to learn to keep my mouth shut, with varying degrees of success. While Laura said  I was doing really well, I suspect that she was being kind. Most days there were at least a few times where I made "helpful suggestions" to the nurses and physicians. The attending on call over one weekend sat me down and gave me some "friendly advice" to not talk to anyone except the attending, and then only once a day. He had asked if I had any questions during rounds, and when I actually did, and also made some suggestions, I think he was a bit taken aback. While his advice was well intentioned, and may have worked for him when he had an ill child, I don't have such an easy time turning my brain or mouth (which are closely connected...sometimes too closely) off. During Lukas’ stay in the NICU I continued to make the occasional suggestion, tried to limit most of my interactions to a daily chat with the attending physician, and made sure that I was respectful and thankful for the terrific care that Lukas received every day from his healthcare team.





Introduction

Our first child, Lukas Willem Bierema Ebell, was born on November 15^th, 2002. Born too early, at 31 weeks, and much too small, at 650 grams, he was a beautiful little boy with bright blue eyes. He captured our hearts and still holds them hostage.

Lukas cried vigorously and didn’t need a respirator for the first three days of his life. However, his condition worsened as a patent ductus arteriosus enlarged, and he was soon transferred to the neonatal intensive care unit (NICU) at Atlanta’s Grady Hospital, 80 miles and a world away from our cozy college town of Athens, Georgia. We knew that he had a long, hard struggle ahead of him and spent the next six weeks almost entirely at his bedside.

My wife Laura and I have done a lot of bike touring in the past, packing up our bikes and panniers, flying somewhere, buying a few good maps, riding, and opening ourselves to the lessons of a new place. During those tours, some lasting up to 5 weeks, we learned some important lessons. These lessons have been personal mantras for many years and especially helped sustain us during Lukas’ illness. In this article, we share them with you.