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 quality-of-life question at the heart of Me Before You.
“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 have completed the full developmental overhaul of my manuscript with the help of a professional editor and am thrilled with the results. I'm diving back into querying agents. Wish me luck!
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