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- The Book Thief

        The Book Thief by Markus Zusack, tells the fictional story of a young German girl named Leisel Meminger set in Nazi Germany. We've read accounts from this particular time, both fictional and non, from every point of view. Using Death as a narrator, The Book Thief goes off the beaten path to tell the story from an original and compelling perspective.

    Zusack's unique storytelling technique doesn't end with his unorthodox choice of narrator. The entire plot of The Book Thief is centered on a trove of diverse threads, all coming together to tell the story of how everyday, blue collar families in Germany dealt with what was happening in their country and how Leisel and her foster parents unexpectedly came to harbor the most dangerous type of contraband you could possibly possess in 1942; a Jew.

    The novel explores relationships, the written word, and what makes a family. Themes of bravery and courage are interspersed with quiet moments of compassion. Characters are colorful, to say the least. It's hard to read a novel about Nazi Germany without being emotionally consumed by the usual accompanying somber and sober mood. The Book Thief finds a rare balance of respect for the topic at hand and the understanding that we often don't recognize the full impact of daily decisions until they are well behind us.
 
    The Book Thief stands apart from the pack and,for once, is a book that deserves every award. The vast majority of the human population isn't Jewish or even German, but The Book Thief tells a story that could happen in any country (and often does) to any population.

    For young readers, I equate this novel to The Giver, by Lois Lowry, although the former is much more subtle. If you are a seasonal reader, this would make a great fall book club pick, best consumed curled up on the couch with a nice cup of tea.



 

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.

Mommy Wars

        Before I ever opened this magazine, I'll admit that I really resented the inflammatory headline.

     Are You Mom Enough? This is exactly what mothers say to each other all the time when discussing feeding choices, while merrily strolling through the park. We feel the need to justify our choices, conditioned to be defensive by those condescending Breast is Best commercials. While breast milk is best for baby,  we've conflated that to mean that the breastfeeding mother is the superior parent. In reality, there's a multitude of reasons why a woman may not breast feed. Maybe her workplace doesn't support it. Maybe her breasts are rebellious and won't do their job. Maybe her kid never detaches (My Aidan) and she can't be a 24/7 diner because she has other kids at home. Maybe she just didn't want to. Who knows?

    What we should be doing, Ladies, is telling the rest of the universe to Fuck Off and support each other. I didn't find breastfeeding to be a magical experience, but I find it horribly offensive on your behalf that others won't allow you to do it in public. Or post a picture of it on Facebook.

     There are so many choices to make and judgement begins well before baby comes home, beginning with a woman's age, marital status, and income. Women who don't get testing done are viewed as incompetent and those who do get it done must only want to abort if problems arise.  Homebirthers are just asking for problems being away from a hospital. However, delivery rooms do not offer the same superior environment of the Superbirther who champions her way through the miracle of childbirth without so much as an Advil.

     The list is endless but the bottom line is that in today's society, choices have become a competition; a chess move in the war to win. Why have we declared war on ourselves when it's possible for everyone to be a winner?

    Women have spent the last 100 years trying to accrue the options we currently have.Think about it. Simply by having choices now, we've won the war. If bickering mommies were to shift focus to bettering public education, we could do amazing things for our children. Even those mommies who prefer homeschool would benefit. We could collectively improve Women's Healthcare. Or shift the war to stop bullying in our neighborhoods, the crime levels of young adults, or suicide prevention. The controversial topics will still be there for us to bicker about, but if we keep our eyes on the prize, we can change several negatives about the systems our children will eventually age in to.

    A woman's superpower is (among others) the ability to open her heart. Love can be shown in a million different ways and it really does impact the world. But first, we have to start with each other.


    Despite the sensationalist headline, I'm glad I opened this article. It solidified my feelings that we've gone too far in the Mommy Wars. The headline alone made me think about my past feelings and re-examine the need to justify my choices. At the very least, I feel compelled to vocally support your choice and encourage Mommies everywhere to do the same. It's time to move on!