The Cost of Breath
A memoir of caregiving, ethics, and impossible love.
When does fighting to preserve life become prolonging suffering instead?
To really fight for my son, I had to confront a question no one around us was willing to face: would more extreme interventions help him, or prolong his suffering? And if we intervened again, what kind of life would we be asking him to live?
When my son Declan was born with a rare disease, my husband and I said yes to every possible intervention and treatment. A trach, ventilator, g-tube, surgeries, round-the-clock nursing care — anything that might give him a chance at a good life. As long as there was hope for something better, we would fight.
Over the next decade, our family endured repeated near-death crises and relentless failures by systems and people supposed to support him, and by extension, us. As evidence of his suffering grew and his progress stalled, the question at the center of our lives began to change. It was no longer about how far we were willing to go to keep him alive, but whether continuing to fight was right for him.
Combining the emotional impact of A Heart That Works with the long-term medical caregiving of Breath Taking, it confronts the taboo ethical questions at the heart of Death Interrupted.
“There are very few voices that speak honestly about caring for medically complex children and the impossible treatment decisions parents face. The book will help both parents and clinicians understand that space.”
Writing the manuscript is only the first step. Here's where things stand.
The real path is rarely linear — there is a lot of "wash, rinse, repeat" along the way.
My most frequently asked question: When will the book be published, and what's the status?
I seriously considered bypassing traditional publishing and releasing this book independently. I believe deeply in this story, in the conversations it can start, and in the readers who need it. After a great deal of thought, I decided to sign with a literary agent and give traditional publishing a real shot.
We expect to begin submitting to publishers within the next few weeks. If the right publishing partner and the right deal emerge before the end of 2026, I’ll traditionally publish. If not, I’ll bring The Cost of Breath directly to readers through independent publishing in 2027.
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