Writing Carrier was a five-year process for me. I wanted to think I was going to be the exception to the “5-years-to-your-first-book” rule, but I definitely reinforced the average. I think it’s hard for a beginning writer to imagine what could possibly stretch the process into a number of years—after all, we’re pretty fast typists these days. But of course it’s not getting words onto the page that takes so long. For me, it was discovering, and rediscovering, what the book was really about. I started by researching the fascinating life stories of my mother and grandfather. But something personal was sorely missing from the work. Finally, in my MFA thesis defense at the University of Iowa, one of my professors asked me a perfect question: “Isn’t it true that your grandfather’s life story represents your worst fears for your own children?” In an instant, I saw what my book would become: my ancestors’ voices shepherding my own narrative as I approached parenthood. I was so excited. But as much as I wanted to just park my rear on the curb outside the building and write the book dancing in my mind, I couldn’t. I knew I had more living to do before the story would be complete. Pregnancy would need to be part of the story, but Dan and I weren’t yet ready to start a family. It was so difficult to wait for my life to unfold a little more—and in fact, I kept writing outlines and drafts as another couple of years passed. Finally, after my first baby was born, I had enough material for my first viable draft. Two years later, I was already working with a publisher when my story evolved still further. I had a second pregnancy, which, very sadly, we chose to end due to health problems for the baby. My editor was deeply compassionate about my experience; writing about the loss of this pregnancy would be very pertinent to the book, but she encouraged me to take my time in writing about it, and then to decide whether it was something I really wanted to include in Carrier. This was definitely the most difficult part of the book to write, because I relived it as honestly as possible in the writing. The events were still quite fresh as I pored over my journal entries in order to remember the very specific emotions I experienced. I remember sitting in my apartment in Amsterdam (where my family had moved) as I neared the end of the book’s final draft. It was a bright and hot summer afternoon, and through the open windows I heard the city’s annual outdoor classical concerts echoing down the canal. My husband and daughter had gone out to enjoy the sweet city, and I sat at my computer with tears streaming down my face as I remembered a dark, snowy Minnesota morning.

How did you feel about revealing so much personal information about your family? Did this ever hold you or your narrative back? Did you ever feel pressured to leave parts of the narrative out?

My family left me in peace as I wrote, and I promised them all a chance to read my final manuscript and tell me if anything was inaccurate or simply didn’t sit right with them. I learned a long time ago that the best way to negotiate content when you’re writing about family is to turn over the pages and tell loved ones they have veto power over the parts about them. This helps everyone to feel some ownership over what gets put out there, and it seems to inspire a sense of collaboration in putting out a story that is not only true but also richly detailed. I was interested in writing my own experience, and I knew it was quite possible that I had misinterpreted some of my family members’ histories, words, and feelings. It was especially helpful to discuss the manuscript with my mother and brother. My brother helped me with a few situations in which I had used insensitive wording. My mother, who had been supporting me all along by sharing her memories and family artifacts, helped me maintain the correct timeline. She also gave me deeply validating feedback about the narrative voice of her father as he speaks in the book. I never knew my grandfather (he died when I was a baby), so I wasn’t aware that I had managed to capture his essence until my mother said, “That is my dad on the page. I don’t know how you did that.”

Was it difficult to find information about your grandfather?

It was exciting! I have a news reporting background, so I wasn’t afraid to look up names and numbers and pick up the phone. After enough phone interviews with people from my family’s past—mostly friends and acquaintances of my grandfather—I knew there was a story out there. Dan and I took a summer road trip to Nebraska, Wyoming, and Colorado, where we retraced the family’s path through the 50s and 60s. Along the way, I conducted more interviews, dug up documents, and visited the family farm and series of homes in which my mother and her brothers were raised. I became familiar with my grandfather’s grave site, too. I got a physical and geographical feel for the story as I discovered old letters and photos and looked up legal documents, medical records, jail logs, and one key coroner’s report. The process was fascinating. Research is always my favorite part of the writing process, second only to revision. Composing a first draft…now that is difficult for me.

Before reading this book, I had never heard of hypohidrotic ectodermal dysplasia (HED). Was one of your goals to bring awareness to this condition?

I hoped I would be able to make a difference for the many families who deal with this rare condition, but I wasn’t sure how that would happen. All genetic disorders are rare, of course, and I knew my dilemma would speak to families dealing with any hereditary disorder. Yet as it turns out, I’ve had some remarkable opportunities to raise awareness of HED in particular. I’ve spoken with large audiences of medical professionals, and by telling my story, I’ve been supporting the work of a small pharmaceutical company called Edimer as they develop a treatment for HED. Their protein replacement therapy has eliminated symptoms of the disorder in mice, dogs, and primates. As Edimer prepares to present the case for human trials to the FDA, I’ve been able to contribute by helping them articulate the quality-of-life challenges posed by HED.