HarperOne has published LITTLE MATCHES, my memoir about losing Caitlin and finding meaning. It iss available as hardcover, Audible (recorded by me), and all versions of e-Book.

LITTLE MATCHES started with a blog I kept while my daughter Caitlin was waiting for a lung transplant. Caitlin was diagnosed with cystic fibrosis on her second birthday. She was fascinated by the moon that year and had no idea that she had just been diagnosed with an invisible disease that would eventually take her life.

CF is caused by a malfunctioning gene, but back then, the gene had not yet been identified. All of our medical questions were answered with some version of, “We don’t really know.” 

What was known: that CF causes a salt imbalance in the body, which mainly affects mucous-producing organs like lungs and the pancreas. Healthy lungs are slippery, sterile. CF lungs are sticky and harbor bacteria, which cause infections, and which slowly render lung tissue non-functioning. 

“She could live a long life or she could die by Christmas,” said the CF doctor who was assigned to talk to her dad and me after the diagnosis. “We don’t really know.” CF is a progressive disease, he explained, with a disease path that is hard to predict, and often different for everyone.

Living with chronic uncertainty and fear became a way of life for us. It took its toll, of course, but it also produced some marvelous benefits. Carpe diem. Live in the moment. Cherish what you have while you have it.

Growing up, Caitlin was able to live a relatively normal life—at least on the outside. But even people very close to her didn’t realize just how much she had to put up with. It was easy to see only the kid who presented so confidently and well on the outside. Stoic that she was, she kept most of the details of the CF struggle to herself.

For years, she lived with daily, undiagnosable aching that was so miserable she lived on Tylenol every four hours.

During the holiday period of 2013, her respiratory health rapidly worsened. She reached a point where she was no longer stable off of medical care. She began to need 24/7 oxygen and IV medicines. She dealt with CO2 retention and other complications of severe lung disease like pulmonary hypertension. So it was at that point, when everything had progressed to such a level that her quality of life was no longer tolerable, that she moved to the next step: lung transplantation.

She was listed on April 24, 2014. She knew it would likely be a long wait.  Basically, you need a lot of supplemental oxygen to be high on the list, and Caitlin’s O2 needs were not yet very high. She was also petite, with O+ blood, so she had a lot of competition.

I began writing 9LivesNotes to keep friends and families abreast of news, or in our case, for a long time, much longer than we ever expected, the dispiriting lack of it.

By the time she was in crisis—on life support and at the top of the list for need, her story had spread nationwide and the blog had reached hundreds of thousands of people, many of whom continue to offer incredible kindness and support.

Life without Caitlin has been excruciating and heightened, and there has been great confusion but also great clarity. When you lose what’s most important to you, pretty much everything else falls away, and you’re left with the fact of yourself, still existing in a world that must make sense if you’re to continue living in it.

LITTLE MATCHES was my way of making sense in order to live.
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