When the parent writing about their experience with a rare disease works as a tv journalist, you get a story that is told with beautiful words. The other real beauty of this book is that so much of it takes place in Durham and at Duke, two places dear to my heart. Wow did this book make me feel like our two medical difficulties (preemie triplets, which was bet scary when it happened 24 years ago, and cystic fibrosis, which is still happening in our lives) could have been so much worse. It was gut wrenching to read the details, and I'm so glad that it had a happy ending.
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P13--like most couples in the 21st century developed countries, we plan to have fewer children than past generations, but we fully expect them to be perfect. Between our jeans and our diligence, we would nature-and-nurture them straight to the top.
P16--this marked the first time Sebastian's veins were pierced for a blood draw. The desperate, terrified scream the needle precipitated would eventually become as familiar to Felicia and me as the opening cord from "A Hard Day's Night," But we'd never get used to it. I've poked my nose into many a parenting book. None of them tell you how to watch your child suffer.
P71--We could neither weasel out of making this decision nor delay it indefinitely. This call would be ours alone and we'd live with it forever. To make it, we'd need to find within ourselves what it takes to be a true adult: the strength to make decisions with profound and irreversible consequences under conditions of imperfect information.
P95--The needle was moving out of the red zone, where the relationship is fully militarized and every questionable remark ordeed is interpreted in the most negative light, and into the green zone, where we once again saw each other as a team and began to grant each other the benefit of the doubt.
P99--All of the elements of the surround-the-football approach - the workouts, the sobriety, the therapy, the meditation, The meds - became part of what I loosely called my Program... To this day I found that unless I'm doing some combination of practices to maintain this mental immune system, the state of my marriage will deteriorate.
P293--If Dr Malik is throwing it around [the word miraculous], perhaps we should all get on board with Freeman Dyson and can see that God exists, and that science and technology are his greatest gifts. For those looking to reconcile the spiritual and scientific, that may be the best way to thread the needle.
P295--he came around and took a second [bike] lap, leaving me behind. I inhaled the future and thought of the countless people who'd labored, given, and suffered to make this happen. Thanks to them, our child has a lifetime of paths before him to explore and conquer, some with us, many more without. Whether his ambitions turn out Olympian or prosaic, he is free to pursue them without fear. A parent can ask for nothing more.