Last fall at the Latter-day Saints Publishing and Media Association conference I picked up a copy of Kennedy’s Hugs by Jason and Heather Hansen. The cover of the book has nine pictures of Kennedy, a beautiful teenage brunette, in various poses: smiling while talking on a cell phone, kissing a boy on the cheek, laughing with another teenage girl, etc. There is a big pink heart under the “u” in the title, and “XOXOXO” written under a couple of the pictures. It didn’t look like a book that I would be interested in reading, or even caught dead reading, so when I got home from the conference I gave it to my teenage daughter, who read it the next day. (She is a natural speed reader.) When she gave it back to me she said, “You have to read this. It’s so sad!” She explained that it was about a girl who died of a neurologic disease, so I started to warm up to the idea of reading it — but only at home where no one but family would see me holding the book.
My wife read it next, and sobbed the whole time. She said, through tears, “There is so much hardness and unkindness in the world, you begin to expect people to be mean. It was the love they had for each other that was so touching that I was unable to stop crying. There really are loving people in the world.” Obviously this book had emotional impact. I decided to read it.
About the Book
My daughter has already given us a one sentence summary of the book, which gives away the ending. Here is a slightly longer version: Kennedy Hansen grew up in Utah in a typical family. The early part of the book describes her parents, Jason and Heather, and her early childhood, including the adoption of her two siblings. At about age ten Kennedy started to go blind, and then had a progressive cognitive decline associated with seizures, and finally loss of motor skills. At age 15 she was diagnosed with neuronal ceroid lipofuscinosis, also known as Batten disease, which was the cause of all of her symptoms and ultimately of her death at age 16. This is an incredibly rare untreatable genetic disease that causes progressive neurological disability and eventually death.
The remarkable thing about her story, which made her a Facebook celebrity at the time, was how she continued on with her life and did a lot of normal teenage things during the last year of her life. She attended school, went to rock concerts, became a cheerleader, went on dates, etc. This of course depended on the kindness of many people, like the cheerleaders and the boys she dated, and on the heroic efforts of her parents. Kennedy repaid all of these kindnesses with her extraordinary ability to reach out and communicate love to others (often through hugs, as the title suggests).
The Hansens are members of The Church of Jesus Christ of Latter-day Saints, and the book is full of references to Church culture, practices, and beliefs. I’ve read several other memoirs about dying, but Kennedy’s Hugs was the first one I have read which was written from a Latter-day Saint perspective. It illustrates really well how a firm belief in the doctrines of the afterlife and of eternal families can really smooth over the roughest parts of the process. Kennedy’s death was one of the smoothest landings I have heard of.
The book is fast-paced and I don’t remember feeling that any parts were dragging. The chapters are short, with almost all of them having fewer words than this review. An average reader will spend less than a week on the book, and with nothing else to do you could probably finish it in a couple of days.
Kennedy is an uncommonly sweet and optimistic girl, and Heather is a model of the self-sacrificing mother, but Jason is the character that made the biggest impression on me. This is partly because the book is written in his voice, so his experience and perspective dominates the narrative. It is also because I am a father, so I could empathize with him, and his book made me think seriously about my relationship with my kids. But I also think it is because of his enormous personality, which is so huge as to barely fit within the pages of the book. Several times while reading I thought to myself, “Is this guy for real?”
Jason Hansen is not a writer; he is a workaholic businessman and a salesman by trade. A kind but firm editor would have helped the text, but Jason’s voice gives the book a raw, unashamed authenticity, as well as a certain charm. After reading it I feel like I know him, like he’s the guy down the street.
There are some nice artistic touches here and there throughout the book. One of my favorites is chapter 27, where Kennedy receives her diagnosis of Batten disease. But this heavy news is juxtaposed and sandwiched between descriptions of Jason tickling Kennedy, and how her diagnosis earlier that day changed the way he felt about their playing together:
“That night, Kennedy screamed out again, ‘Tickle me, Daddy, tickle me!’ But now it was different. Now it was special. It was no longer the game that the two of us had played for so long together and for so many years. For as I tickled her that night and as I heard her laugh, I began to have an ever stronger knowledge that it was close, very close” (pg 105).
Particularly moving is the passage that describes Jason’s intuition about how Kennedy was going to die, long before anyone else around her realized it would happen (chapter 21, pg. 72-77). There is a parallel passage in chapter 26 (pg. 100) that describes Heather’s eventual acceptance of Kennedy’s impending death, years after Jason had started trying to tell her. The counterpoint between acceptance and denial in Kennedy’s parents is a major theme of the middle part of the book.
Doctors, Take Notice
As a practicing doctor I was particularly struck by chapter 14, which describes an awful visit to an ophthalmologist who had some of the worst bedside manner I have ever heard of. This was early in the course of her illness, when visual loss was her only symptom, and years before her diagnosis of Batten disease.
“He did not even say hello to us or really acknowledge us as human beings. […] He stood up and walked to the back of the room where he proceeded to talk into his tape recorder. […] Ultimately, I stood up and walked over to him again. This time, he shut off the tape recorder and looked at me. ‘What do you want?’ he asked. ‘We just want some answers to what is going on, that is all.’ I said. ‘Well I am trying to record this, just listen to what I say on the recorder,’ he blurted. Listen to what he was saying? I thought. Half of the words I did not understand and the other half were so foreign that I thought I was in China. […] He finally sat down and said, ‘Ok, here are the results of the tests for Kennedy.’ He began once again talking into his tape recorder. None of us knew what he was talking about until the words came out, ‘Macular Degeneration . . . blindness’ […] Finally, I was done. Kennedy was crying and Heather was pleading with him, ‘What does she have?’ ‘Doctor, are you even listening to me? What about blindness? Please, please, just tell us!’ He suddenly stopped, looked at us, and said, ‘Kennedy has Stargardts: a form of childhood blindness. She will go completely blind by her teenage years if not into her early twenties. There, is that the answer you wanted to hear?'” (pg. 46-47).
Such behavior from a medical doctor is appalling and inexcusable, no matter how burned out they are and no matter how heavy their burden of documentation may be. Jason was rightly enraged, and gave the doctor the rebuke he deserved. As he stormed out of the clinic one of the office assistants thanked him for being the first patient to call out that doctor for his behavior. (Apparently Kennedy was misdiagnosed with Stargardt disease. Blindness was actually the first manifestation of Batten disease, but they didn’t know that at the time.)
As a medical doctor I like seeing things from the perspective of patients and their families. It is good for me to interact with the health care system not as a doctor but as a father, husband, or patient from time to time. Reading Jason’s perspective was interesting, and his misuse of medical terms in the text just adds to its authenticity. Doctors spend over a decade learning a new language, and it is hard for us to speak about medicine without using medical terminology. Economists, auto mechanics, computer experts, and anyone else who works in a field with specialized knowledge or skills will have the same problem, but it is especially important for doctors to translate what they are saying into language that patients can understand. I am glad that the Hansens had some positive experiences with neurologists, geneticists, and hospice providers to make up for the bad one with the ophthalmologist.
The Air We Breathe
Faith in God is a part of everyday life for the Hansens. They constantly pray for guidance about employment, vehicle purchases, family decisions, etc. Jason and Heather both fulfill Church assignments while caring for Kennedy and the rest of their family, and this is typical of faithful Latter-day Saints. There is not a partition between their religious lives and their “real” lives; their conviction percolates through everything. Guidance from the Holy Spirit is simply accepted and acted upon. Faith is the air they breathe, not just an ornament worn on the outside for others to see.
Jason Hansen is really fearless and almost uninhibited when writing about his spiritual intuition. He writes a lot more than I think I would, and more than I was comfortable even reading in a few places. Some things just feel a little too private to write about, a little too sacred to share. This might be my social phobia speaking, and Jason is anything but a sociophobe, but I think if I were writing this book I would have left a few of those things out. However, it is not my place to pass judgement on this, and the Hansens are obviously free to disclose whatever they want to disclose about their story. It is also clear from the text that Kennedy herself really wanted those things shared, so it’s hard to argue too much with that, and leaving them out would have taken some of the wind out the story’s sails.
I had several thoughts and impressions while reading Kennedy’s Hugs. First and foremost I thought of my own wife and children and how much I love them. We have our own little family traditions, which would be amplified and etched into significant events like the Saturday truck rides described in chapter 76 (pg. 269) if our family faced a tragedy like the Hansens did. One of the obvious takeaway messages from the memoir of a father losing his beloved child is that time is precious, that little things matter. Am I giving my kids the time and attention they need?
Stories like this, where great acts of charity are done for an unfortunate person, are really heartwarming. Last September a whole neighborhood in Ohio celebrated Christmas two months early so that a two year old with brain cancer could celebrate his favorite holiday before he died. The gospel of Jesus Christ is the ultimate story in this genre, where the Son of God performed the greatest act of love the world has ever known to save all of us from our certain fate.
Reading Kennedy’s story made me wonder what it was that made the explosion of love happen for her. Would the same things have happened if Kennedy had not been an uncommonly sweet and loving person? What if her father had not been such an extrovert? What if her condition had been depression or addiction instead of a progressive neurologic disease? What if she had been abused, or had come from a dysfunctional family? What if she had been a refugee, and didn’t speak English? Do we rally around these underdogs as much as we should? We have all witnessed people in need who didn’t seem to have Kennedy’s good fortune, and struggled alone.
Kennedy’s Hugs is a good read, and will appeal to a broader audience than its cover art would suggest. Teenagers, parents, and healthcare providers will all find essential lessons for them in it. I’m thinking about having my teenage boys read it next — wish me luck! (If there is demand for a second printing, then I would suggest changing the cover. I swallowed my pride and took it to work with me to read on my lunch hour, but I wouldn’t have even opened the book without the endorsements from my wife and daughter.)
This book and the associated social media pages have become the center of a charitable foundation in Kennedy’s name, allowing the Hansen family to “pay it forward” to new families going through similar hardships. Buying the book from their website will support Kennedy’s charity. Kudos to the Hansen family for sharing this story, and for using the experience as a springboard to help others in need.
UPDATE: I was in contact with Jason Hansen today, and he let me know that the book has already been reissued with a new cover and title, to match the movie: “Love, Kennedy.”