When I was growing up, one of my grandmothers had a huge collection of Reader's Digests, and the condensed books. As a voracious reader, I read them all the time when I went over there, and she gave me many to take home. I also read (not bragging, just is) far above my grade level. As a result, I read some things as a kid that probably held too many heavy topics (i.e. the "I am Joe's _______ (insert organ here)" series, the stories of people narrowly escaping death, etc.). This was one story I read as a young girl that stuck with me, and I've re read it a few times as an adult. I was delighted to find, several years ago, this book in its' entirety. I don't like condensed books as a general rule (I prefer to "edit" them myself), and the full book is well worth reading.
The story is a true, autobiographical account of the Oyler family, living in California: Chris, Grant, Ben, Aber, Beau, and later, baby Danny., drawn from mom Chris's journals, and the story is told largely from her point of view and/or in her "voice", but it's obvious Grant had input as well, and the boys.
The story begins around 1985. The Oyler family's 3 boys are hemophiliacs, and at the time, treatment for hemophilia was blood product taken at home. This was considered advanced, as they no longer had to go to the hospital for a transfusion with every bleed. Despite this, the boys lead active, healthy, normal lives as children.
In 1985, AIDS/HIV and how it was transmitted was not well known. The world would learn of Ryan White, a young boy with AIDS in the USA (Oddly , I read about Ben in this book long before I knew about Ryan), who was barred from entering school and entered the public sphere as they fought for his inclusion. Most people thought the virus affected only/mainly affected gay men. Stereotypes about the disease abounded, such as catching the virus from using a water fountain or toilet seat. Being a child during this time, I remember a lot of that. My first real memory of hearing of AIDS was all the telephone-style rumours I heard on the playground, and seeing Rock Hudson dying of AIDS in capital letters on supermarket tabloids. I remember the panic and fear. Thankfully, my mother was logical and told me all that she knew to be accurate from health sources at the time.
But, back to the book.
Sometime in 1985, Ben comes down with what they think is the stomach flu during a family reunion. When it doesn't go away, the doctor finds he has a parasite and prescribes antibiotics. Ben is hospitalized for tests when they still can't cure the infection or get to the bottom of it. Shockingly, the family is told at the hospital that Ben has AIDS, and likely has only about a year to live. He contracted the virus via the blood product he needed to take for his hemophilia, as the blood was not as rigorously screened or treated as it is now when Ben got the virus. (Later in the book, one of Ben's brothers is afraid he will also get AIDS from the blood product, and the parents explain that it's now heat treated.). The family is tested, thankfully no one else has the virus. The boys were especially at risk, having taken the same blood product for years. Ben is the oldest, so chances are he was the one most at risk as he likely took the product before it was as treated and screened as it would be later.
The family's courage and dedication to keeping life as normal as possible for all the boys is amazing. Chris helps Ben to make a list of things to look forward to, and they explain AIDS as a virus and that no one knows much about it, as the hospital had never seen a boy with AIDS before. At one point,. Ben sees a horrible news story where someone is saying AIDS is a punishment for gay men. Ben asks about this and about what "gay" means, and the family's response is commendable; they explain that it's a virus like a cold, and he doesn't think God punishes him for a cold, right? They say those people are mistaken. They explain "gay" as when two men (I don't think they covered female relationships) love each other the way his parents do, but that their church teaches that love is only for a husband and wife, a man/woman. Ben is satisfied with this response.
The church comment is because the family are devout, active members of the Church of Jesus Christ of Latter Day Saints, or "Mormons". Considering Mormons adhere to very strict codes of behaviour, especially when it comes to sex, this response was pretty enlightened- especially in light of the fact that it was 1985 and both parents seemed to have lived very sheltered lives and married quite young. The only time a taint of homophobia comes about is when the parents are out to dinner, and Chris sees 2 men being openly affectionate and has to leave, as she's trying to get her mind away from AIDS for the night and this reminds her. It's cringe worthy to read, but remember the context (not that that makes it ok).
When I read the book as an 80s kid that wasn't religious, my knowledge of Mormons was limited to those TV commercials (remember? Even child Alphonso Ribiero makes an appearance!) and the young men in white shirts with black name tags that went door to door. This book helped to teach me a little about their faith and culture. Granted, it's shown in the best possible light, but it's still nicely done. The book isn't at all preachy or holier than thou, it simply shows that their faith is interwoven into their every day lives, and forms a big part of their support system. It also helps them with Ben's inevitable death, as a big cornerstone of Mormon teaching is that "families are forever" and they will be together again in the eternities .Mormons are notoriously family oriented and have a lot of support within their church communities , and in this case, that's a huge help to the family crisis.
In the midst of all of this stress, Chris is pregnant. She's also only 29. (I remember thinking that was "So old" when I first read the book!). She's being asked to go into totally unchartered waters here, and while the family obviously mourns and struggles, they manage to keep the family strong and to support Ben.
The school board chooses not to admit Ben to Grade 4 , and the family doesn't fight it as they want to protect their privacy. (That's why little was known about the Oylers until after Ben's death, when they did a couple of interviews, and then this book and the eventual TV movie that was based on it.). They had seen the circus that surrounded the White family and didn't want that for themselves. By then, Ben was sadly so sick that he couldn't attend school regularly, anyhow.
A teaching moment and foreshadowing is the discussion of Ben's friend, Jessica. Jessica has cancer and Ben wants to get together to play with her on his list. He never gets the chance, as Jessica sadly passes away. Chris explains about heaven and how Jessica will be there. While they never explicitly tell Ben he is dying, he seems to innately know that the lessons about death and the afterlife are for him.
I don't cry easily, but several parts of this book made me choke up. Now that I'm a Mom, they completely broke my heart in a new way; when Ben is diagnosed. when Ben has a seizure and wants to "go home" (heaven, as explained to him like going home), when Ben is dying and Chris tells him to "go toward the light" and that it will be just a "twinkling of an eye" til they are all together again), when they ask his Grandpa to make his coffin, using the station wagon for his final ride. I could go on and on.
The book is touching, beautiful, and heartfelt. It could move even the stoniest of hearts. It's also a good reminder of the limited knowledge, fear, and unfortunate attitudes surrounding AIDS back in these times for those who don't remember (not from the family, from the schools/newscasts etc). This is a remarkable family.