Finding Ourselves On Roads Less Traveled

First, thank you for being here and for taking the time to read my story.

If we haven't met, let me introduce myself. I'm a wife, a mother, an engineer, and—most importantly—a follower of Jesus. I'm also a transplant Northerner (my parents are from the great state of Michigan), even though I've never really lived anywhere but the South. I'm a creative admirer who doesn't think she's particularly creative, an animal lover, a music enthusiast, and someone who thrives on forward momentum (also known as a counterphobic Enneagram Six, for those who speak that language).

I've never considered myself a writer. But over the course of this journey, I found myself reading countless personal stories from people who had walked similar paths. Their honesty gave me comfort, perspective, and hope. Somewhere along the way, I realized that if their stories had helped me, maybe mine could do the same for someone else.

My hope is that if you find yourself walking a road anything like ours, you'll know you aren't alone. I've found incredible comfort in recognizing pieces of my own story in the stories of others.

I also hope that one day I'll be able to look back on this season and clearly see all the ways God answered prayers—both in the ways I hoped He would and in the ways I never expected. I don't want to forget His faithfulness simply because, someday, this season will be behind us.

I'm going to begin almost a year ago, when one late-night Google search changed the trajectory of our lives. That may sound dramatic, but I honestly don't know another way to describe it. Looking back, it feels like the moment we unknowingly stepped onto the road less traveled. I believe it will ultimately make all the difference.

To explain why I found myself Googling genetics late at night, though, I need to back up a little further. My husband, Jacob, is a twin. For their entire lives, he and his brother were believed to be fraternal twins. Looking back, that assumption seems almost funny. They look remarkably alike, share many of the same interests, have similar personalities, and even many of the same mannerisms. But when two boys grow up in the same house, participate in all the same activities, and spend years in the same classrooms, it's easy to attribute those similarities to environment instead of genetics.

About four years ago, Jacob's brother was diagnosed with a rare genetic condition called Multiple Endocrine Neoplasia Type 1 (MEN1). At the time, we were told that because both of Jacob's parents had tested negative for this dominant genetic condition, there was little to no reason to believe Jacob also had it. Since the twins were believed to be fraternal, we were assured—multiple times—that Jacob didn't need testing and that there was no reason to worry.

Looking back, I think neither of us wanted to question that conclusion. With backgrounds in biochemistry and chemical engineering, the explanation made sense to us. In our minds, a dominant genetic condition meant obvious symptoms. Jacob didn't have symptoms, and neither did his parents. MEN1 genetic testing confirmed his parents weren't carriers, so we accepted that his brother's diagnosis was simply an unfortunate mutation and moved on with life.

Fast forward to a little over a year ago. I was sitting at our local library's children's story time with our one-year-old son when a set of grandparents walked in carrying twin grandchildren. After story time ended, we struck up a conversation, and I asked what felt like an ordinary question. "Were they identical or fraternal?" The answer I got was quite interesting.

The grandparents explained that everyone had assumed the twins were fraternal because each baby had their own placenta. Months later, after family members struggled to tell them apart, their parents decided to have genetic testing done. The results showed they were actually identical twins. That conversation stuck with me. Not long afterward, I asked Jacob's mom how she had always known the twins were fraternal. Her answer? The exact same assumption around separate placentas.

This is the point in the story where, if you were reading a novel, you'd probably be yelling at the main character to put the pieces together already. Trust me—I ask myself the same question. Looking back with everything we know now, it seems obvious. At the time, though, it simply planted a small seed of curiosity. I didn't yet realize it was the first domino.

A few months later, we started talking about having another child. Our son was about fifteen months old, and my sister's engagement was on the horizon. We knew we didn't want two under two, and we also hoped to avoid major life events overlapping, so we decided we'd figure out timing once my sister officially got engaged and had set a wedding date.

Then one evening, after Jacob had gone to bed, I found myself thinking about MEN1. I hadn't thought seriously about the condition in months—maybe years—but I suddenly felt an overwhelming urge to research it. As I started reading, alarm bells immediately went off. What I found in major medical journals didn't line up with much of what we'd been told. The biggest discrepancies involved testing recommendations, the age at which symptoms often appear, and the seriousness of the condition.

Then the twin conversation came flooding back. I started researching identical twins, placentas, and the probability that Jacob and his brother had been misclassified all those years ago. The statistics weren't nearly as reassuring as I wanted them to be. After a brief—but fairly spectacular—anxiety spiral, I finally went to bed. The next morning, I told Jacob everything. I asked him to get tested before we considered trying for another baby—not because I expected anything to be wrong, but because I wanted to rule it out once and for all. He agreed. We both assumed the results would come back negative, we'd laugh about my late-night overthinking, and we'd move on with our lives. Neither of us had any idea where that decision would lead.

Once we decided Jacob should be tested, we assumed the hard part was over. Unfortunately, it wasn't. The next challenge was figuring out how to get him tested. More Googling taught us that MEN1 isn't a single mutation but an umbrella term covering many disease-causing mutations within the same gene. We assumed we would need to know the exact mutation Jacob's brother had before Jacob was tested. That turned out to be much easier said than done. We tried several different avenues to obtain the records but kept running into dead ends. Medical records that were now several years old, combined with HIPAA laws across state lines, made retrieving the information nearly impossible.

Next, we tried going through a local genetics research institute but couldn't get in. Finally, after recommendations from several friends and a medical professional, we contacted Clearview Cancer Institute. To be honest, I wasn't optimistic. Why would a cancer institute be interested in a rare endocrine disorder? Ironically, we would later learn that MEN1 is considered a hereditary cancer syndrome, making them exactly the right people to call. Despite our doubts, I'm incredibly grateful we made that phone call. Jacob was tested in mid-December. We were told results would take two to three weeks because of the Christmas holidays.

So we waited.