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mirandadarrow 's review for:
The Wonder
by Emma Donoghue
I’ve only read one other book by Emma Donoghue, which was Room and this is nothing like that, but it is a compelling read. I’d read the summary before I started, but I wasn’t prepared for just how terrible and comprehensive the description of the nurse, watching a 11 year old girl starve herself for mysterious somewhat religious reasons, would be. Wow, it was intense.
Sometimes my book reviews are rather biographical, so I apologize if you’re not interested in that. Skip this next very long paragraph if you don’t want to read about my story. As I’ve mentioned before, my youngest child has cystic fibrosis (CF) which is a life shortening genetic condition. You can find out more at www.cff.org But before he was diagnosed, my husband and I had the longest two weeks of our lives (so far), watching him starve to death, waiting for the medical explanation, and then waiting for the prescription of pancreatic enzyme replacements so that he could actually diagnose food. For the first fourteen days of my son’s life, it became increasingly clear that something was terribly wrong with our boy, but at first people didn’t listen, and then they didn’t know what to do, and then they knew what to do, but they weren’t the right people, etc. For fourteen days, he went from being a perfectly “healthy” 7 lb 10 oz boy, who took right to breastfeeding like neither of his older siblings. He turned into the infant who, despite being hungry, would take one sip of milk and then turn and scream in pain. The baby who never passed meconium, and yet even though a nurse identified that and pierced the meconium plug, yet he was that same day discharged from the hospital with the instructions to “wait for the newborn screening results, he might have CF” with no, seriously no explanation of what that meant. And then the newborn screening results were lost at the state. And the pediatrician was frantic, as he was obviously losing weight. And the visiting nurse that the pediatrician was sending to our house every day to weigh him after the first week was instructing us that we actually had to feed him, despite the fact that we were constantly attempting to feed him, and then we would attempt to feed him in front of her, and show her the bright green soiled diapers that would results within minutes of every feeding, which the internet had told us indicated that he was not digesting the food, and that it wasn’t lack of feeding that was causing him to drop from the fiftieth percentile in weight down the the tenth percentile of weight in 8 days, that there was a medical cause. And then the pediatrician’s office was able to track down the newborn screening results, and wouldn’t tell us the results over the phone and told us to come in. And then the appointment the next day at Children’s Hospital for the sweat test to confirm the CF diagnosis, and then after the sweat test confirmed with no margin for error, even though they told us that many times kids with CF don’t test positive at first when they are this small, but his levels were 3 times the threshold for diagnosis in sweat salinity, so yes, we knew, but still no relief, as all of the doctors able to actually see us and prescribe the right medications were out of town at a conference, so come back in two more days. So we came back in two days, and finally, finally got a prescription for pancreatic enzymes, which we needed to feed our now 14 day old son every time he ate, including breastfeeding, but opening the pills and dumping them into a spoonful of applesauce and spooning them into his mouth, hoping he will swallow and not push it out with his tongue, and then feed him within the 1 hour time limit of the enzymes effective timeframe, and not after. And after he got his enzymes, it took both of us to feed him, but at least he slept. For the first time in fourteen days, anyone in our house slept. It wasn’t just shrieking calming down to gulping and then whimpering until he passed out, and then waking up to more shrieking again, which had been the past week before enzymes. He didn’t sleep in a crib or pretty much anywhere except in our arms or in the swing, the glorious swing, until he was old enough to roll over proficiently, as the acid reflux was legendary, back sleeping was not a possibility. I know, put down the phone to the CPS, he didn’t sleep on his stomach either. He slept in the swing, in our room, constantly swinging, for months. And we watched him swing. And thanked God for the enzymes, and for the fact that we live in a time where CF can be diagnosed, but as you likely know, there is no cure. It’s still awful, and we still live with it every day. But he isn’t starving to death, even though we do have to fight for every pound for him. Sorry so long. I’ve never written this down anywhere. It’s been six years now and my son is doing well in Kindergarten - but yet, it was yesterday.
So, with this in mind, The Wonder was a very hard book for me to read. I don’t need to read fiction to imagine what it would look like to watch a child starving to death, hoping and praying for some intervention that would reverse this course. But, it was such a compelling read, so well written, such an intriguing (if not entirely likeable) protagonist, so many interesting issues - I couldn’t put it down. But it took me days to write this review, as I knew I couldn’t talk about this book without dumping this account of the longest two weeks of my life (which I always caveat as “so far” as we’re far from done with our journey with CF and who knows what else), but it took hardly any time to read the book. Actually, I listened to it in audiobook, and that was very well done. I don’t actually know what else to say about it, other than it was transfixing, and tough, and also had beauty and I’m glad that I read it, even though it dredged up tons and tons of memories. Spoiler item
Spoiler
especially when Lib was talking about the death of her newborn, as her account of that child’s death sounded excruciatingly like our first 2 weeks with our sonI don’t want to talk any more about the plot and what happens, because I think that would spoil it, and there aren’t a ton of twists and turns, so even the blurb on the cover is giving away some of the action. You’ll have to read it for yourself, but be prepared for an emotional journey, one with cultural and religious and societal sexism in the 1850s not to mention the mystery of the girl. I thought it was worth it, but like Donoghue’s book Room it isn’t for everyone. And now I’m getting ready to watch football with my family, including my 6 year old son who is running around with his shark hat on and his gloves, saying that he’s an “iguana shark” who can climb walls to get into houses and eat people, and then jumps out the window and back into the ocean, while singing an “iguana shark” song set to the tune of “Mahana Mahana”. Life is good.