The Strange Tale of Ben Beesley, Part Two

   In 2008, Matt McNeil had a job in London with the U.S. Foreign Service Department, a fantastic wife named Shannon, and two beautiful kids.

                                       Oliver, Shannon, Waverly, and Matt McNeil in 2008

    Both of Matt's children were hearing impaired, but soon it became apparent that something else was amiss. His daughter, Waverly, was experiencing some difficulties at preschool. They made an appointment with a doctor and spent the next few months trying to get to the bottom of Waverly's medical issues.

    Unfortunately, the bottom was a canyon- deep and wide. Matt's wife, Shannon, describes receiving Waverly's diagnosis :

    "That meeting is a bit of a blur. I remember them telling me she had MPS III. They began to explain what that meant and I interrupted. I wanted to know if she was going to die. He told me that yes, children with Sanfilippo die tragically young. I then asked what treatments were available. He told me there was nothing we could do."


    Waverly was missing a crucial enzyme needed to break down natural sugars already found in the body, a condition called Sanfilippo or MPS III .The sugar waste built up and began to accumulate in Waverly's cells, causing damage to her brain and body. As the doctor had already stated, there was nothing they could do.

    The bad new wasn't over. Sanfilippo or MPS III is genetic. Matt and Shannon's son, Oliver, was an adorable one year old with chubby cheeks and a big smile. He liked Mickey Mouse Clubhouse and cuddled with his mom. What about him? When Oliver was born, Shannon and Matt had no idea Sanfilippo even existed, let alone that they already had one child afflicted with the terrible condition.

    Oliver also tested positive for Sanfilippo.

    Here's the cruel thing about Sanfilippo or MPS III; babies start out normal, happy, and healthy. This isn't a condition detected at birth. Parents watch their children grow and thrive just like anyone else. But then their children start to deviate from the parenting books. They become restless and hyperactive. In the second stage of the disease, a snowball effect takes hold and parents begin to see a rapid regression in both verbal and physical capabilities. It begins with small things, like toilet training, and progresses to the complete loss of basic functions like chewing, swallowing, and walking. In the final stage of Sanfilippo, the child eventually succumbs to infection they cannot fight.

    Watching your child slowly lose the battle once must be devastating. Having to watch the same thing happen to your other child, knowing in advance that this is the year his little body is going to start showing concrete signs of breaking down, is absolutely unfathomable.

    Shannon writes, "We are not sure how much time we have with them. The life expectancy for children with Sanfilippo A varies. The doctors have told us between 10-18 years is typical. I am not convinced there is enough time for the current research to save Waverly and Oliver. However, I would  do anything to prevent another family from going through this heartache." 


    Instead of falling into the abyss, Matt wrote The Strange Tale of Ben Beesley. The premise was simple. He wanted to write a scenario in which his kids could win. Waverly and Oliver are featured in the book as the two main characters, who happen to be insects. Ramsey, the deadly spider, is the terrible genetic condition that Waverly and Oliver must defeat.
 
    Being diagnosed with Sanfilippo is a double edged sword. On one hand, there's not millions of children affected by it and that's something to be thankful for. On the other, YOUR child or children do have it and will most likely die unless a cure is found. Because it's not a popular condition, Sanfilippo doesn't get much research funding, leaving parents to the task of finding ways to raise the money themselves.

    When I think about the many things I spend my money on, how could I pass up actually contributing to something worthwhile?  All proceeds from The Strange Tale of Ben Beesley go directly toward supporting research programs that could help Waverly, Oliver, and other children who are also diagnosed with Sanfillippo.

    Matt and his family now live in Virginia. You can read more about Waverly and Oliver's story in Shannon's blog, Exploring Holland. Quotes for this post are in her introduction, with a more detailed account.

    You can purchase The Strange Tale of Ben Beesley by clicking on my link or visiting http://www.benbeesleybook.com/ . There are other links on his site worth checking out as well.

 


    




 





 






    

Book Review- The Strange Tale of Ben Beesley

    Are you looking for an enjoyable book or gift for a younger reader? In The Strange Tale of Ben Beesley, author Matt McNeil takes a magnifying glass to the magical world of insects. It's a perfect summer getaway for kids between the ages of 8 and 11.

    Readers are introduced to young Waverly and Oliver, two brave souls who rail against the merciless and malevolent rule of Ramsey, the flinty and ruthless self- appointed king of the garden. Unlike the glossy Walt Disney versions of bug life, McNeil doesn't sugar coat the barbaric ways in which species are capable of causing harm. Don't let that sway you, however, as most kids in his target reading range expect to be treated a little more grown up. In fact, this is part of the book's appeal. Remember Charlotte's Web?

    Revolutions usually begin with one small, rebellious act and Waverly and Oliver are no exception. Their rebellion begins with a little,white lie told to save the life of a fellow bug destined for the dreaded dung heap. From that moment forward, their lives are transformed. Though Waverly and Oliver first save the mysterious Ben Beesley, it becomes his mission to save them and the three bugs set out on a life or death journey into the very heart of their universe.

    Young readers can enjoy the exciting adventures of Waverly and Oliver, while parents can gain the satisfaction of knowing their children are reading a book that is both age appropriate and has recall questions at the end of every chapter. This would also make a great Teacher's gift in the classroom for both quiet or read aloud time. The book has 22 chapters and is 216 pages in length.

    You can purchase the book via Matt's website http://www.benbeesleybook.com/.
 
 

Book Review-Mrs. Kennedy and Me

    Like many Americans, I have a mild interest in the Kennedy family. With the popularity of Mad Men and the renewed interest in the 1950's and 60's era, Mrs. Kennedy and Me is a well-timed release for summer reading.

    Clint Hill, the Secret Service agent assigned to Mrs. Kennedy during her stay in the White House, gives his recollections and personal observations while in her service. It was fascinating to read about the actual logistics of the Secret Service at a time without cell phones and high speed connections.

   The book also offers a brief glimpse at the upper echelons of American society. We learn a bit about Mrs. Kennedy's childhood and the opportunities she had. Mr. Hill goes into detail when describing her various trips abroad. He categorizes the book in chronological order, which is helpful in understanding the culmination of her years as First Lady.

     We read about the fantastic crowds that would form whenever the First Lady would arrive. She received lavish gifts and even animals from foreign dignitaries. Though Mrs. Kennedy didn't spend vast amounts of time in Washington, her motto seemed to be "Quality, not quantity". She hit the mark when throwing a dinner or arranging a party and always showed up in a stunning dress. The press and the people couldn't get enough of her.

    The last year of the Kennedy presidency was rife with tragedy. Mr. Hill doesn't leave out the death of baby Patrick. He treats the scene with dignity and honesty. Nor does he insert himself unduly into the situation. It's apparent he's not a professional writer but just a guy who was just doing his job.

    The last quarter of the book takes us up through the terrible assassination of the President. As Mrs. Kennedy was with him at the time, Clint Hill was there,too. He spends a lot of time describing the preparations of that fateful Dallas trip, the procession of the motorcade, and the awful events that unfolded; always with a careful eye toward Mrs. Kennedy.

    Clint Hill stayed with Mrs. Kennedy for another year following her husband's assassination. He kindly helped aid her in the transition back to civilian life, though we all know there's no going back to normalcy. Again, the book is filled with many interesting insights into that particular time that only Mr. Hill could really provide.

    I usually don't read books that I feel are terribly intrusive. I was hesitant to pick this one up but I was relieved to find out Mr. Hill didn't seem to have any hidden agendas. I got the feeling that this book was cathartic for him to write and his feelings for the Kennedys were genuine and of a very positive nature. As I stated before, he's not a professional writer so there are times when the flow isn't quite right. It's easy to forgive, though, in light of the topics covered.

Book Review- Fifty Shades of Grey

                                                                   


  I was slogging through my usual news feeds a few months ago when Fifty Shades of Grey blew up the Blogosphere. It was the "must read" book of the month. Controversial, sexy, and the term MommyPorn was being thrown into the mix. I immediately downloaded it to my Iphone and began reading. I didn't even preview it first.

    The story felt familiar by chapter two. I did a little researching and sure enough, I'd read that same story a few years back.  The original work was titled,"Master of the Universe" and was written as a FanFic piece back in the heyday of Twilight mania. There were some really fantastic stories that came from that period, but I wouldn't have ever classified this as being one of them.

     Fifty Shades of Grey is nothing more than a mediocre attempt at re-writing Stephanie Meyer's Twilight as "Edward with a Riding Crop". It has all the same plot holes and character flaws. Anastasia Steele is the  mostly vapid, empty- headed lead character who can't decide if she wants to be a chew toy for the sexually sadistic Christian Grey. It takes her an entire book to decide that entering into a contractual relationship with a guy who can't get off without torturing his women first is a bad idea. Anastasia then resolves to turn her little sadomasochistic hook up into a real relationship; the dreaded fixer-upper. That's book two. Book three ends with Christian and Anastasia overcoming a dangerous situation and learning how to love without nipple clamps.

   Fifty Shades is explicit and probably alluring to someone who's never read anything in that genre before. I give E.L. James credit for breaking a few taboos and playing her part in introducing women to erotic fiction. But for all you Fifty fans, do yourselves a favor and read something well-written. Something with a decent plot and real imagery. And let's not forget variety! Pick up a copy of Anne Rice's,The Claiming of Sleeping Beauty. Her set comes as a trilogy,too, and I guarantee it's better written than Fifty Shades of Grey.

    However, if you're really just looking for some extra motivation in the bedroom, there are many FREE fanfic stories that are enjoyable and feature your favorite characters while filling in the blanks that Stephenie Meyer didn't bother with. In many of these, the characters have been written with a more defining pen. Here's my Top Ten List of best erotic or romantic Twilight Fanfic:

1. The Submissive- If Fifty Shades is your thing, read this. Then read the next two. All Human.
2. The Office- (by TBY7890) My personal favorite.You'll need permission to open this link, but it's totally worth your time. It seems harder to get a copy of this, so I included the author code for your search if my link doesn't work.). All Human
3. Wide Awake- If you like angsty, I got your angsty. All Human.
4 .Edward Wallbanger- Hot with humor! All Human.
5. Creature of Habit- Twilight for adults, but really more on the romance side. Vampire Edward.
6. The University of Edward Masen- Edward is a college professor. Need I say more? All Human.
7. La Petite Mort- My friend reminded me of this super hot, one shot. Best Quickie. Vampire Edward.
8. A Rough Start- Heartstrings and violins. Edward is a single father. All Human.
9. Breakfast at Tiffany's- Best Romance Award. All Human.
10. Alphabet Weekends- If erotic fiction makes you giggle uncomfortably, Alphabet Weekends is a nice introduction. It doesn't take itself too seriously. All Human.

 

Book Review- The Red Queen

    The Red Queen, written by Philippa Gregory, is the second book in what is referred to as "The Cousin's War" trilogy. This novel chronicles the life of Lady Margaret Beaufort, who is head of the House of Lancaster, one of two royal Houses vying for the English throne during the turbulent War of the Roses.

    Gregory begins the book during the early years of Lady Margaret's life, where we learn of her devotion to the young heroine, Joan of Arc. While Beaufort feels that she is destined for a holy life, those in authority insist her destiny lies in carrying the next heir in the Lancaster line. The remainder of her life subsists of weaving together carefully constructed threads in the treacherous and often fatal fight to the throne.

    I enjoyed this book. It's fraught with a multitude of names and dates, but don't let that scare you. Once you become enthralled with the story, names begin to stick and dates move along. Gregory manages to bring the past alive in all her books, paying special attention to cultural detail and setting.  Scheming and survival were certainly intertwined in the politics of the 15th century, and the story of Lady Margaret Beaufort is no exception.

Book Review- The Imperfectionists

    The Imperfectionists, by author Tom Rachman is a New York Times best seller. The book features eleven chapters from the viewpoints of eleven different characters, all contributing to one major story arch. It reads like a short story and takes the reader a chapter or two to figure out exactly what all these characters have in common.

    The story revolves around a newspaper in Rome. The correspondents are largely American, all having found their way to the paper in one form or another. There's a lot of cubicle mentality happening in the book, so if you're a fan of shows like The Office, this might appeal to you. It's written in the third person point of view, with narration happening between every chapter, stingily giving up details as to how we got to the present.

    They say to never judge a book by it's cover, but I'll admit to being intrigued. Words like "Spectacular", "Magnificent", and "Beguiling" appear next to the publications giving this novel such high reviews. It has the New York Times sticker of approval on the lower right hand corner and a smaller Random House Reader's Circle on the upper right. By all accounts, this should be a great book.

    We begin with a character named Lloyd Burko, an aging and defunct Paris correspondent, who's on his way out. His money has gone the way of his charm, fleeting and currently in the back pocket of much younger lover, whom he allows to get sexual satisfaction from another in light of his now diminished libido.

    The next notable story line features Arthur Gopal. He's probably the most likable character in the book and naturally, the one highlights of reading the novel. If Rachman had stuck to writing the story from Arthur's point of view, I probably would have had a more enjoyable reading experience.

    There are nine more chapters in this book and only two of them are really worth reading. It really felt like the author had a bunch of short stories and slapped them together to make a book. I don't know if the book got so many rave reviews because the publications giving them were all newspapers or if I'm missing something. It felt like one of those dour first novels that writers create because they want to be taken seriously. Avant- Garde or something. There wasn't much depth to the book nor was it one of those light and simply entertaining books that we all indulge in from time to time. The writing wasn't bad but it lacked substance. I didn't learn anything from this book, nor was I entertained in any way. It didn't transport me to anyplace I wanted to be. It was absolutely dreary.

    Unfortunately, I bought this book. I thought I would give it away like I did with Hotel on the Corner of Bitter and Sweet. I can't hardly give a badly reviewed book out so I'll probably donate it to the library. If you'd like to read it, I suggest you get it there.

Book Review- Hotel on the Corner of Bitter and Sweet

  More than just a metaphor, Hotel on the Corner of Bitter and Sweet takes us on a paper faded journey filled with the subtle sights and sounds of a time long gone.

    It's a love story, a coming of age story, and a historical narrative all wrapped into one. It's also a curious look backward in time, where we meet a young Henry Lee and watch how both small and major events help shape him into the man we come to love by the end of the book.

    The book begins shortly after the attack on Pearl Harbor with a young Henry as the only Chinese student at a local school in Seattle. His strict immigrant parents have chosen to send him there, as opposed to the traditional Chinese school, in hopes that Henry might be viewed and accepted as more American. Like many children born to immigrant families, he is still expected to obey the laws and influence of his Chinese heritage. Henry carefully manages to keep a foot in both worlds until he meets Keiko Okabe, a Japanese girl who like him, works in the kitchen as part of her "scholarshipping" agreement.

     As the relationship between Henry and Keiko deepens, so does the anti-Japanese sentiment in Seattle. Homes are ransacked and shops destroyed. Eventually all Japanese , including Keiko, are rounded up and shipped off to interment camps.

     The drama that unfolds for both Henry and Keiko is captivating. Author Jamie Ford manages to insert beauty and humanity into his characters, which are believable and flawed. The plot is woven with care and devoid of the dreaded holes that plague many books.  Hotel on the Corner of Bitter and Sweet ended the way it began; full of promise and a tinge of sadness that the story eventually had to come to an end.

Book Review- This Beautiful Life

     This Beautiful Life by Helen Schulman tackles the controversial subject of teenage sexuality and the unintended consequences of life with the Internet. A true Molotov cocktail, this book is sure to get the conversation started at your local book club.

    The book begins with an uncomfortable scene involving thirteen year old Daisy Cavanaugh filming a sexually explicit video for sixteen year old Jake Bergamot. It involves nudity, a bat, and a whole lot of chutzpah that I certainly didn't possess at such a tender age. Daisy hits "send" and Jake pushes "forward", each of them making the same mistake in thinking the video will go no further than the one person they each sent it to. While not a tale as old as time, it's certainly one that's become more common in the face of advancing technology.  No more are salacious details contained to some graffiti sprayed walls of a public bathroom. It's immediate and it's everywhere. 

    This Beautiful Life doesn't make you choose between Jake or Daisy's perceptions in the story. It's a narrative that explores the feelings and decisions that the Bergamot family makes when confronted by the school and Daisy's parents over the video. Jake's parents, Liz and Richard Bergamot, have just moved from idyllic Ithaca to the privileged and affluent Upper West Side of Manhattan. We see Liz struggle to keep up with the demands of motherhood and the expectations that go along with posh parenting. Richard is a typical workaholic, delighting in his ability to provide this newer, more lavish lifestyle. We watch as Jake assimilates into an opulent culture of unbridled freedom, alcohol, drugs, and a private school that has Paris Hilton like connotations.

    Readers are left with a sense of deep sadness for both of these kids, who are judged by society and friends. What Shulman portrays so well is the short sightedness that young people all have and their inability to comprehend a world where privacy meant something else, altogether.