Tag Archives: Scoliosis

Pure Joy

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This is a post about the kindness of strangers and the joy one feels when bringing joy to others.

Backstory

In early 2014 my daughter, Avery (affectionately nicknamed “Princess Pants” or just “Pants” or “Pantalons” if we’re being formal and embracing the French language) was diagnosed with severe idiopathic scoliosis. My wife got the idea to start a family blog so we could chronicle the journey and share our experiences with others going through the same thing and bentbutnotbroken.net was born.

One thing that helped Pants through the whole ordeal (eleven hour surgery and eleven month recovery) was music, specifically the music of Vance Joy and Taylor Swift. Shortly after surgery my wife got tickets to see them play in Toronto and Pants was concerned she wouldn’t be physically up to the challenge. Listening to their music helped motivate her to do her physio exercises and kept her in a good mental state.

Recognizing this, I got the idea to reach out to both artists to see if they’d give Pants a shout-out on Twitter or something. I even mentioned how she wanted to wear a tiara on her last day of school before surgery and how everyone in her class ended up wearing one.

I did not receive a response from Taylor Swift, but a month later Avery got a next-day delivery envelope in the mail with the return address of Vance Joy’s record label and a postmark of Edmonton – the city he had just played in.

I managed to record a video of her opening the envelope. Suffice it to say, she was excited.

Dear Avery,
I find your bravery and strength inspiring. It means a lot to me that you have been listening to my music. I don’t have a tiara on me right now, but I have decided to draw me in one. I’m on your team! 
[drawing of a face with a tiara] (Looks more like a crown, sorry lol)

I could not have written a better ending to the story and retelling it brings a tear to my eye, but as it turns out, that wasn’t the end. Fast forward to March 2023, nine years since diagnosis, eight since surgery, and seven and a half since Vance Joy made Pants the happiest girl on the planet.

Pants was studying abroad and took it upon herself to make a solo trip to Barcelona to see Vance Joy play. I reached out to his rep again and asked if there was any way he could do a shout-out for her as an early birthday present. Unfortunately, that particular tour date was already packed with lots of personal stuff for him and there would not be an opportunity. They said they’d see if they could work something out in terms of a birthday card, but that’s when I mentioned that our family would be seeing him at the Sommo Festival in PEI in July.

Hatching A New Plan

After too many emails than I care to admit, Vance Joy’s rep, Rachael, finally agreed to a meet and greet at the festival. This was big news, but keeping it a secret from Pants was going to be a challenge. She was aware I tried to set something up in Spain so there was a good chance she’d put two and two together eventually.

The big day arrived and I got word from Rachael that there would be a small group meet & greet at 5:15. Vance Joy was slotted to be in the culinary tent at 5:00 and Pants really wanted to see him there, so I’d need an excuse to pull her away. My wife and I ended up telling her that I had a friend of a friend on the crew who got us a backstage tour, and as luck would have it, Pants thought that was really cool and “would see Vance Joy perform later anyway”.

Now, at this point, it’s important to mention that only Rachel and my wife, and I (and Pants’ brother) knew that this was a surprise. None of the security people, promotion company folks, or the PR people around knew, so as I was running around trying to figure out where to meet and who to talk to and whatnot, other people part of the meet and greet started to arrive and a bit of a buzz formed in the area where we were standing.

At some point, one of the security people called out, “Are you all here for the Vance Joy meet and greet?” and thankfully Pants was like, “No, we’re here for a backstage tour,” which really confused the person because I had just spoken with her about making sure we were in the right spot for the tour. At that point, however, we had to congregate in a specific area and were going to get instructions on what to do and where to go. So, the jig was up. I turned to face Pants.

“Surprise!”

There were tears. Lots of shaking and crying. She was, to put it mildly, a mess. The security person felt terrible for spoiling the surprise, but it all worked out (rest easy, security lady!) The advanced notice allowed Pants to do her freaking out beforehand so when she got to do the actual meet and greet she was composed and not in tears tripping over her words (in hindsight, I should have factored that in and let her in on the secret).

We told the backstory to the promotions people and they got their Social Media person to interview us, which was pretty cool, and then it was time.

Vance Joy was so friendly, and kind, and Pants got to properly thank him in person for the letter he sent all those years ago. He remembered her and said that he gets a lot of fan mail and can’t reply to all of it, but some stories stick with him, and hers was one. They had a brief chat and then took selfies with me, then my wife, and son, and I got to thank both him and Rachael for making this happen. Seeing the joy it brought Pants meant the world to me.

As we exited the meet and greet area, we were approached by Bianca from Whitecap Entertainment (the promotions company). She said that our story was so heartwarming and unforgettable that they wanted to give us a special gift (hat tip to my wife who ventured outside of her comfort zone and told the story to anyone who would listen): Wristbands for the limited-access pit right at the front of the stage!

We got to watch Vance Joy from as close as you can get and then close out the festival watching Mumford & Sons from the same spot. It was absolutely fantastic. My son and I even got to meet former NFL player and owner of Amazeballs and chef/host of the show Mad Good Food, Derrell Smith.

So, there you have it. The happiest of happy endings for everyone involved.

Special thanks to Rachel from Unified Music Group, the Sommo Festival, Whitecap Entertainment, their awesome employee Bianca Boutilier, and of course Vance Joy.

Marcus Mumford & Maggie Rogers Covering Taylor Swift’s “Cowboy Like Me”

Cancelled, And Good With It

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I had a plan for what to do when my rights were returned for both of my traditionally published books, but due to a not-so-author-friendly contract, it was still a year away for one and almost two years away for the other. I did have a plan, though, and I was all set to work on it. Then, as the saying goes, the game changed.

With apologies and a tip of the cap to James Fell…

–-On This Day in History Shit Went Down: January 4, 2022–

The email was unexpected and brief. I was unceremoniously dropped by my publisher. The plan I had in place had to change. The first order of business was to get the nonfiction book about my daughter’s struggles with spinal fusion surgery out ASAP.

I’m happy to report that less than four months later I released Bent But Not Broken: One Family’s Scoliosis Journey on my own. It was one hell of a learning curve, but I did it, and I’ve never been happier. The cover is better, the layout is better, and I’m in complete control.

ALL royalties from that book are being donated to charities (Canadian Blood Services and Ronald McDonald House). That would not have been possible with a publisher taking a majority cut of the already small slice of pie. You can find your favourite retailer here if you want to buy it (don’t ask me what’s happening with the Australian paperback, that’s an Amazon “quirk” for which I have yet to see a resolution).

I shelved Hard Truth and wanted to turn it into a quadrilogy of short novels (about 175 pages each) and planned on doing that last year in advance of the midterm elections (the characters are all flavoured similarly to some of the names you hear in the news and the stories are them getting their comeuppances), but then a friend came to me with the idea for my #MisfortuneMemoir and that shiny object captured my attention (the newly minted Reprisal series is slotted to hit the shelves, at least in part, before the 2024 election in the U.S.).

I put all the things I’d learned getting BENT out into the world into action and as I hope you are aware, Near Death by a Thousand Cuts: A Humorous Memoir of Misfortune will hit the shelves on April 1st. I’m beyond excited about bringing this book to you and am proud of myself for taking control of a challenging situation.

Am I done with publishers? Partly. Yes, my experience was definitely tainted due to one bad apple, and I’ll continue to self-publish, but I do have a few novels finished that I think would be a great fit for a traditional publisher (I think one, in particular, is damn good and I promise it will have a shorter title than my nonfiction). More on that after I get past this upcoming release.

So, happy January 4th, everyone, and remember the saying about doors closing and windows opening or something. I don’t know, there are lessons in there. Or not. Do with this information as you will.

Peace, love, and penguins,
Andrew

P.S.
I made a conscious decision to not call out my former publisher by name here. Aside from them having an itchy trigger finger from a litigation perspective, I don’t think dragging a company publicly over these differences is cool beans. If you message me directly though I’d be happy to share my experience. Onward and upward, friends.

P.P.S.
Buy James Fell’s sweary history book. JamesFell.com/books

Blood Memories and Synchronicity

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Coincidences are pretty cool. I try to maintain a skeptical and scientific mind whenever possible, but the human brain’s ability to find patterns and propensity to seek out connections is at times too strong for me to overlook.

Three years ago today I donated blood to my daughter for her pending scoliosis surgery. It’s what Canadian Blood Services calls a directed donation. In the case of parents and children, if their blood is a match, the parent can donate blood to the child. Avery ended up needing 5 liters (more than a gallon) for her surgery so my single donation was literally just a drop in the bucket, but it was an amazing moment for me and Canadian Blood Services worked a good bit of magic to ensure that I was able to do this for my daughter. My wife gave her life, and I got to help save it. I vowed from that day forward to donate as many times as it would take to match the number of donors needed for her surgery, and then keep donating as long as they will allow me to. Avery needed fifteen donors to keep her alive during surgery and today will mark my twelfth donation.

If you’ll allow me to stray from the scientific path for a second we’re going to get into some wacky numerology stuff.

  • Today is the January 8.
  • It’s 12 days until the third anniversary of Avery’s surgery (also, in case you haven’t heard, the Bent But Not Broken book (One Family’s Scoliosis Journey) is coming out in 12 days as well).
  • Today will be my 12th donation.
  • When I showed up at the clinic I had to wait. They gave me a number.

Even weirder is the fact that I was talking with this woman, Kelly after my blood donation and her boyfriend’s mother is about to have back/spine surgery. She jotted down the title of the book so she could pick up a copy for her.

Cue freaky Twilight Zone-like music.

Now, if that were the only synchronicity-ish thing to happen today I wouldn’t get too excited, but you guessed it, something else happened today that worked out in a rather fortunate way.

I was late getting to work. There was lots of snow and Avery helped me shovel the driveway and it made her late for the bus, which was late anyway but there was no way she was getting to school in time unless I drove her, so I drove her. It’s a solid twenty minutes out of my way but I was happy to do it so she wouldn’t miss anything. Then, I had to get gas. Then, because of the shitty weather, it took an hour to get to work instead of my usual twenty-five minutes. So far just another snowy day in Canada for people on the go and dependent on cars to get to work.

Because I got to work so late, I ate my breakfast late. Because I ate my breakfast late I ate my snack late (mmm cheese). Because I ate my snack late I ate my lunch late. Because I ate my lunch late I was microwaving it a good half hour later than I would have been on any other day.

Today, it so happens that someone at the coffee machine across from the microwave was a colleague I have not spoken to in a while. So we start catching up on stuff. Naturally, at some point, I start plugging the book and giving her the whole story about how it comes out soon and we’re so excited to get it in the hands of other families who have children with scoliosis.

Standing on the other side of the kitchen was a woman in for training. I think she was from New York or maybe Boston. Definitely not from here, and I detected the slightest hint of an accent (I’m not going to guess which one for fear of getting it wrong and inciting some sort of Boston vs. New York riot). Anyway, she overheard our conversation and when I showed Avery’s before and after x-rays mentioned that she used to work with a company that specializes in low-dose spine x-rays and still does some talks on the subject. Cool.

THEN, she mentioned that she knows the founder of Curvy Girls (at least I think that was the connection). Curvy Girls is totally safe to Google at work. It’s a network of girls and young women who have gone through scoliosis bracing and/or surgery that provide a support system for other girls going through the same thing. This mystery colleague hopes to get me some contact information while she’s here this week.

I looked them up on the web and when I asked Avery if she was interested in becoming one of their leaders she said she was and that it would be “epic”. So we’ll see how that all unfolds. I have to tell you, knowing about Curvy Girls three and a half years ago would have been a godsend, but alas, we seem to have been destined to tell our own story and now with the book coming out and hopefully getting Avery involved with Curvy Girls we are.

~ Andrew

Connections

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I am a writer. As such, I have a lot of friends who are writers. I have even more acquaintances who are writers. On social media (mostly Facebook but also Instagram and Twitter) I would wager that my interactions with writers outnumber interactions with everyone else combined. I have a short list of non-family members that I put into the category of close friends. There are two from my university days and another three that I didn’t even know existed until I started writing, and more specifically, started participating in National Novel Writing Month, or NaNoWriMo as well like to call it, or if we’re being particularly lazy, “NaNo”.

NaNo is a challenge to writers everywhere to write 50,000 words in the month of November. In other words, write a novel in thirty days. That works out to 1,667 words per day, every day, for an entire month. It’s a lot. It may not seem like a lot, but it’s a lot. Trust me, I know. I participated in this challenge six years in a row from 2011 to 2016 and was only successful four out of those six years.

For a number of reasons, I’m not doing NaNo this year. A friend asked me if it felt weird and I said that it did. Other than the fact I’ve done it for six years in a row now I couldn’t put my finger on why that was. I thought a bit about it a bit more and came to the conclusion that it felt weird because NaNoWriMo is a big reason that I am a writer at all.

In early 2010 I started dabbling with some writing. Not simply jotting stuff down and blogging every now and then, but writing with plot and character in mind. Well, sort of. I was blogging somewhat regularly and I had every intention of starting a big screenwriting project, at some point, some time, you know, later. But by some sheer twist of fate, it was the month of November that all that changed.

If anyone out there is a fan of the James Burke show Connections (and Connections 2 and Connections 3) you’ll see that my “path to success” goes WAY back and isn’t exactly a straight line.

That’s Why I’m on This Oil Rig a Writer

  • In 1993 I worked as a clerk at a video store before heading off to university.
  • It was that first year at university that I would have a little girlfriend trouble.
  • While that was going on, Kevin Smith was writing the movie Clerks. It is a movie about a couple dudes working as, well, clerks. One in a video store and one at a convenience store. One of the clerks has girlfriend trouble.
  • That movie came out in 1994 and I saw it when it hit video stores in 1995. The movie changed the way I looked at films and my whole creative process and I was an immediate fan.
  • Later that year I got back together with one of my girlfriends from back in 1993. We would get married on November 6, 1999.
  • Fast forward to 2010. Kevin Smith had made ten movies and was a huge success and doing his Q&A sessions and multiple podcasts. My wife looks out her office window one day and sees a billboard advertising Kevin Smith coming to town just a few days before our anniversary.
  • We attend the show and have a great time and it sparked something in me. Afterwards, I came across this blogger and writer by the name of Robert Chazz Chute who wrote about his experience at the same show. In his post, he mentioned this weird thing called NaNoWriMo. I, in turn, wrote a blog post about getting off my ass and actually writing something. It was going to be a screenplay.
  • In 2011 I started writing the screenplay and I was having a conversation with one of those close friends I mentioned earlier in the post. I was lamenting that I was having a hard time getting my story to fit into the framework of a film. He said that he didn’t want to see an Andrew Butters movie. He’d rather read an Andrew Butters book. So, I switched gears and started to write it as a novel.
  • In November 2011, I attempted my first NaNoWriMo. I was there alongside Robert cranking out words and having a great time. It was on Twitter during NaNo that I met a writer by the name of Jennifer Gracen.
  • Jennifer was a NaNo cheerleader and she introduced me to a whole number of other writers and eventually she invited me into a writer’s group on Facebook. One of these individuals is now one of my other close friends, Gordon Bonnet. We joke that we are brothers from different mothers. Twins separated at birth and by more than a decade and several strands of DNA.
  • One of the Twitter NaNo folks Jennifer introduced me to almost died due to a medical complication and there was an anthology being put together to raise money to help pay her medical bills. I wrote a piece of creative non-fiction about the unexpected death of my wife’s brother and Jennifer edited that piece for me. It was eventually accepted into the anthology and just like that, I had my first published piece.
  • Shortly thereafter I had a photographer friend, Christine Reid, do some headshots for me. If I was going to write books I was going to need pictures for back covers, right?
  • Then, in 2014 my daughter was diagnosed with severe scoliosis and was going to require spinal fusion surgery. Since there was little information out on the web from girls and families that have gone through this, my genius wife decided that we should keep a family blog to chronicle the journey.
  • A year post-surgery the blog was done and I decided that if I could add a bit more context to the blog posts that it would make a pretty powerful book. In October 2016 I finished Bent But Not Broken: One Family’s Scoliosis Journey.
  • In January of 2017, I was talking to another writer, one to whom I was introduced at the same time as my brudder from another mudder. She suggested I talk to him about Bent. So, I did. He was beta reading the manuscript and unbeknownst to me had given it to the Editorial Board at his publisher, Oghma Creative Media (now called Roan & Weatherford, and you should avoid them at all costs. Message me if you want more details). A few weeks later I had my first writing contract.
  • A couple months later, the Oghma founder was asking me for a headshot for an announcement on their Facebook page about my signing. I pointed him to the folder of headshots that my friend Christine did for me.
  • He asked me if I did any acting when inquiring about why I had headshots taken. I told him I had them done so I’d have something for a book cover one day. He said, “Oh, you’ve written other stuff?” and I told him I had a few pieces of almost completed fiction plus bits and bobs of incomplete stuff that will take shape at some point. He invited me to the publisher’s writing retreat in the summer and said we would talk.
  • I returned home in August of 2017 from my publisher’s writing retreat with two book contracts: one for a standalone psychological thriller (short novel) and one for an open-ended suspense series called The “No” Conspiracies (which will be at least five books at this point).
  • Bent But Not Broken comes out on the third anniversary of my daughter’s surgery on January 20, 2018.
  • Hard Truth (the short novel) comes out in September of 2018.
  • No Fixed Address: The “No” Conspiracies Book #1 comes out in March 2019.
  • No Known Cure: The “No” Conspiracies Book #2 comes out in September 2019, which currently sits at about 25,000 words.
    • To bring this all full circle, it’s worth noting that this was the movie I started writing back in 2010 and ended up being the book I started writing during my very first NaNoWriMo back in 2011.
    • In fact, of the seven books I have either written or have committed to writing, four of them have been NaNo projects.
As you can see, there are a whole lot of connections that brought me from A to B on this writing journey of mine. I look at the long list of events above and if you remove any one of them the chain collapses. I see all those events as the kindling and the fuel for my fire. If that’s true, then learning about NaNoWriMo was the spark. The annual challenge for writers around the globe that I found out about at just the right time because the impact that a single Kevin Smith show had on a guy named Robert which prompted him to write a blog post that I happened to read.
Here are tonight’s three stars of the game:
  • Kevin Smith. For writing Clerks, deciding to do a show in Kitchener of all places in 2010, and inspiring writers and filmmakers in ways that only you can do.
  • Robert Chazz Chute. For sharing your fanboiness of Kevin Smith and writing and introducing me to the world of writing (also, for that drive into Toronto to go see Kev’s movie Red State when I was suffering from post-concussion syndrome).
  • My wife. For taking a minute out of her day to look out the window and suggest that a Kevin Smith show would be a good anniversary present, and for being the bond that has held together so many of the links in my chain for nearly a quarter of a century. You’re why I’m on this oil rig, baby. Happy Anniversary!
~ Andrew

Links (I know I linked them above, but it’s always nice to have a list):

What’d I Miss?

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It’s been a while. Thank you for not forgetting about me. Aside from my open letter to McDonald’s (which, if you’re listening McD’s, I am still really pissed about) I haven’t posted anything in more than six months. That’s a long hiatus, but… BUT I have some exciting reasons as to why the absence.

First of all, after my last post back in August 2016, I started a project which would have a significant impact on my writing career. I renovated the basement bedroom of my house and turned it into a writing room. A friend of mine down in Boston, Richard B. Wood, did this earlier in the year and dubbed his new creative space The Lair. Being a homegrown lad from The Great White North, the name for my space needed a Canadian touch and after much deliberation (entirely too much, some would say) I decided on Lair North, Eh? though around the house it commonly goes by The Writing Room.

Having a dedicated space to go and have uninterrupted time to create was of paramount importance. If I was going to make the leap from being a writer to being a published author I was going to need to take it seriously (more seriously than I had been) and give writing its own time and place. The room needed to be comforting and inspiring and filled with all the tools to help me bring my ideas to life.

I still need to put a few finishing touches on it (I need a small end table, a few pieces of art, and some blinds) but the transformation was extensive.

Before:

After:

Everything in the new room has a purpose:

  • The little half-sized guitar is there because I occasionally write lyrics (really the only form of poetry I am capable of). 
  • The is some art that’s there and more to come because the presence of art pleases my muse. 
  • I have my NaNoWriMo victories on the wall hanging above a photo of my aforementioned friend, Richard, pointing his finger at me with the heading “Shouldn’t You Be Writing?”. These are great motivators. 
  • What was once a door to get into the circuit breaker panel is now a chalkboard (and also a door to get into the circuit breaker panel) for keeping lists and scribbling random notes. 
  • There is my wife’s BA (Political Science) and my B.Sc (General Science) from the University of Waterloo. These are accomplishments that we are both very proud of. 
  • There’s a chair for reading, relaxing, napping, and thinking (Winnie The Pooh has honey and I have my La-Z-Boy). 
  • A lamp because… well, we had an extra lamp and nowhere to put it. 
  • Books. There are lots and lots of books. The whole family has books on those shelves. I just wish I had more room for more books. 
  • Finally, to the left of me when I’m sitting at the keyboard there is my shelf of inspiration and usefulness. 
    • The top of this little bookcase sits books that my friends have written, music CDs they’ve created, and one bottle of beer that my friend Jon crafted (links to all the stuff below). 
    • Underneath that shelf are reference books, how-to books, Stephen King’s On Writing, a space pen, a Rubik’s Cube, an Oxford English Dictionary (because Webster can kiss my butt), and some golf balls from my brother-in-law’s memorial golf tournament (Ryan passed eight years ago today – also my birthday – and I miss him every day).

The rules of the room are simple:

  1. Closed door = Do not disturb.
  2. Don’t touch the laptop (it’s super finicky and on its last legs).
  3. If you’re done with a book, put it in a bookcase (alphabetical by author last name, or on the shelf of inspiration ordered by height).
  4. If you want to read a book, take one (just bring it back when you’re done. See rule #3).

So, what has happened since the room became a usable space?

Well, as some of you may know, a couple years ago my daughter had surgery to correct a severe case of scoliosis. My wife, not finding much helpful information for parents going through something similar, started a family blog so we could share our story and hopefully help other families. The blog was a great success, with families from all over the world finding the site and learning from our experiences.

Wanting to bring our story to as many people as possible, and always with something more to say, I compiled all the blog posts and sectioned them off into various phases (waiting for a surgery date, preparing for a second opinion, pre-op, surgery, post-surgery, etc.) Before each phase, I added my own take on what was happening at that time. I also added an introduction bringing everyone up to speed on our daughter and what life was like before the diagnosis, a question and answer section, and a lessons-learned section at the end.

It was a lot of work, but it was work I was able to accomplish, uninterrupted, at Lair North, Eh? over the course of a month. Once that was done, I got right into NaNoWriMo for the sixth year in a row and every day over the course of November you could hear the sounds of me typing and talking to myself. I am happy to say that for the fourth time in those six years I managed to write more than 50,000 words and win NaNo!

Then, a break for the holidays where I fiddled here and there with a few things and tried to figure out what to do next. Come the new year, however, something was brewing. I was showing the scoliosis book to a few trusted friends to get feedback and it was suggested that I get it in the hands of one of their publishers.

I won’t go into details (to protect the innocent and all that jazz), but suffice it to say that the manuscript for Bent But Not Broken: A Family’s Scoliosis Journey made it into the hands of Oghma Creative Media and a few weeks later I signed a contract to have the book published!

So, what happens now?

Well, the first step was to get all the words in the manuscript looking good for the fine editors over at Oghma. The next step was to provide all the images that would be used and place an image tag in the manuscript so the formatting people would know where stuff goes. Then, I need to caption all the images (close to fifty of them) and secure permission to publish any of the images that were not either a family photo or a medical image from my daughter’s personal medical record.

Once all that was done, off to the publisher it went. There, an editor will look it over and the process of fixing and re-writing begins. A lot of the book was blog posts and I’m hoping there won’t be any substantive changes made to those since they were written in-the-moment. I expect the narrative parts that I wrote will tighten up and give the book a nice pace.

At some point down the road, once we are all happy with the words there will be copy edits, formatting, and cover design.

When it is all said and done, at some point in the first half of 2018, we should have the book in stores and available for download, and who knows, maybe later on next year you’ll see another title from me hitting the shelves as well.

~ Andrew

Who’s on my shelf of inspiration?

May The McFourth Be With You

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May 4 is a big day for Star Wars nerds. Fans all over the globe run around greeting each other with, “May the fourth be with you!” My son’s class is encouraging the kids to come dressed up as Star Wars characters and is allowing light sabers in the classroom. My wife, out of town tonight and most of the day tomorrow, left a note with the greeting on the fridge. It’s going to be a good day, as it is every year.

What’s going to make this year’s May 4th even better is the fact that it’s also McHappy Day. For those who aren’t aware, this is the day that McDonald’s donates proceeds from every Big Mac, hot beverage, or Happy Meal sale to Ronald McDonald House. 
I know, I know, McDonald’s isn’t the greatest food in the world, but they do some really great things with the money. My wife and I saw it first hand when we were at McMaster Children’s hospital last year. Our daughter had spinal surgery to correct severe scoliosis and my wife and I qualified to stay at Ronald McDonald House in Hamilton, across the street from the hospital. Avery spent 11 hours in surgery, 18 hours in the pediatric ICU and then 7 days in the hospital ward. Since we only qualified in distance by a couple kilometers, had a great support system between family, friends, and very understanding employers, and the ability to drive back and forth without issue we decided to not take up a room at Ronald McDonald House so that people who were truly out of options could take advantage of the facilities. 
What we didn’t know until a couple days at the hospital was that there was a Ronald McDonald House room on our floor. It was a complete and total savior. While our situation and support network didn’t have us feeling like we should have used RMcD House we completely underestimated what kind of toll it would take on us. Knowing that there was a retreat in the middle of the hospital where we could go and get home cooked food, muffins, coffee, and beverages, watch TV, read a newspaper, lounge on the couch, take a nap, or just plain interact with other people was a godsend. 
When you’re going through the worst experience that you can imagine, when you’re filled to the brim with worry, it’s little gestures of kindness that make the difference, that keep you hopeful, that let you know that you’re not alone and that there’s at least one thing that you don’t have to worry about. 
So please, from a parent who has seen the true value of the services that Ronald McDonald House offers, take your kids to McDonald’s tomorrow. Let them have a Happy Meal. Get yourself a coffee. You can just plain old fashioned donate cash if you want. They’re giving away fancy socks if you donate five bucks!
~ Andrew

Based on a True Story

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Being a writer, especially one without decades of experience under his belt, is always an interesting experience. Every time I sit down at the keyboard to write, edit, or research I come across something new that either challenges me, alters my perspective, or sends me scrambling to the corner in tears. Lately, I’ve come across something that touched on all three: 

Non-fiction. Thankfully they were tears of joy and not fear or agony. 

 Now, I have written non-fiction before. It was actually creative non-fiction in the form of a short story titled Losing Vern that was published in the Orange Karen: Tribute to a Warrior anthology. It’s a great anthology with all royalties going to another writer, Karen DeLabar, to assist her with some pretty hefty medical bills. You can read all about it here. My contribution was an embellished version of the story of the death of my wife’s brother and the few strange days that followed. As I mentioned, it was more creative non-fiction than anything else. 



 The piece of non-fiction that has me excited to be a writer this week is more of a documentary than anything else. There are no embellishments or creative licenses taken to sensationalize otherwise mundane events. It is not a “how to” or instructional. It’s just a story. A true story about real people sharing their true emotions and real experiences. It also happens to be the story of my daughter and how she, my wife, and I navigated through the scary waters of an 11 hour scoliosis surgery as well as the months of agonizing waiting before and agonizing recovery after. 

 One thing I discovered was that this type of story was much easier to outline. I’m smiling as I type that because the outline was pretty much already written. With over 60 blog posts over at our family scoliosis blog over the past 5 months or so all the major plot points are laid out quite nicely. 

 Another thing I discovered was that there will be a lot less dialogue. This frightens me slightly as everything I’ve written to this point (blog posts excluded) has been quite dialogue heavy. If I were to evaluate my skills as a writer (not comparing them with anyone else) I’d say that near the top of my list would be my ability to write dialogue. In fact, it’s the most frequent compliment I get from people who have read Losing Vern (which includes my father the English major, retired educator, and voracious reader who is not known to throw around literary compliments all willy nilly). This story will rely on the power of narrative to keep the reader engaged, which isn’t my strong suit. With my fiction novels I sometimes embark on the familiar “show don’t tell” struggle, so this will be a good exercise for me. That being said, I open this latest book with dialogue (in some circles this is an egregious no-no). 

 The last thing I discovered is that this book will not be finished for another 11 months. To be fair to myself most of it will be written before the middle of this year, but I wanted to follow the story from diagnosis (March 31, 2014) through to a full year post surgery (January 20, 2016). That leaves quite a bit of story left to tell, but trust me, it’s compelling stuff. Any story that contains a war wound like the one my daughter is sporting is worth telling, and worth waiting for. 




At this point I think I’ll do something I haven’t done on the blog before – share an excerpt. Without further ado, here’s the opening to my latest work in progress:

Bent But Not Broken

One Family’s Journey from Scoliosis Diagnosis to Surgery and Beyond

By:
Andrew F. Butters (Dad)

With Contributions From:
Jodi Wilks-Butters (Mom) & Avery Butters (Patient)


“Daddy, so Avery has screws and rods now.”
“Yes. Two titanium rods and 27 screws.”
“Are they on the outside or the inside?”
“They’re on the inside.”
“And they had to cut her open to get them in there?”
“Yes, they did.”
“They sewed her back up though, right?”
***
Ah, to be able to see the world through the eyes of an 8 year old boy. That was a conversation I had with my son, AJ, two days after his 12 year old sister, Avery, awoke from an 11 hour surgery to correct her scoliosis.

Scoliosis is a lateral curvature of the spine. When viewed from behind, the spine looks like an “S”, but the actual deformity is much more complex. It occurs in three dimensions. Avery’s spine was bent and twisted like a helix. Left uncorrected the condition would have impacted her internal organs, squeezing them into places they were not meant to be. Digestion would have been impacted and breathing would have become difficult. Her spine would become increasingly deformed, squishing her torso like an accordion. There would have been pain; a whole lot of pain.
What caused it? We don’t know. No one knows, not even the doctors. “Idiopathic”, they said. Which is just a fancy medical term for, “we don’t know”.
  • How did we find out?
  • How long did you have to wait for surgery?
  • Was she scared?
  • Were you scared?
  • What exactly did they do to fix it?
  • How long does it take to heal?
  • Will she be able to do everything she did before?
  • Will she beep when she goes through airport security?


Those are just a sampling of the questions my wife and I have been asked since we decided to go public with this diagnosis (with Avery’s permission, of course). I suggested that my daughter start a journal to capture her experiences and thoughts in an effort to help her process everything. Her mother and my wife, Jodi, immediately went looking on the internet for other people’s experiences and didn’t quite come up with anything she found particularly useful. There was a lot of medical information, most of it from the United States, and a whack of case studies, but very little in terms of what we as a family or Avery as a patient would be experiencing. So, she stared a blog where we could all contribute and share our perspectives on this life changing event.

To answer the first question, “How did we find out?” we, naturally, have to start at the beginning: with a suspicious mole on our son’s neck.


My New Hero

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If there’s one thing you can count on when you pick up a book it’s that there will either be someone or something to root for, someone or something to root against, or some combination of the two. It’s what makes the story interesting. It allows the writer to take the reader through a series of ups and downs and showcase all the pitfalls and adversity that the main character faces on the way to achieving, or not achieving, their dramatic need. While certainly there are myriad ways to accomplish this many times it boils down to something simple: protagonist versus antagonist, good versus evil, hero versus villain.

If you ever have a choice, always be Batman.
http://wallpaperswide.com/batman_and_joker-wallpapers.html

I’ve read quite a few books in my day, and seen quite a few movies, and I find myself drawn not as much to the hero as I am the antihero. That’s just a personal preference though and I’m sure there’s a psychologist out there who could explain it. Never the less, I like my heroes (or antiheroes, or villians for that matter) to be based on the types of people I see on a day-to-day basis and on the news – only exaggerated. You could say that I enjoy stories that involve fantastic versions of everyday people.

Sherlock Holmes is a good example. Here’s a man using his wits and ingenuity to fight the evil lurking around the corner (who is also just an exaggerated example of a bad person you could meet on any given day). Iron Man would be another.  Tony Stark is a flawed, but thoroughly brilliant and excessively rich man who invents technology to build a virtually indestructible armored suit he wears to fly around in saving the world from harm. I also think this is what draws people to Batman. As the caption in the photo above reads, if you ever have a choice, always be Batman.

If you were to ask me who my two favorite heroes are I’d answer without hesitation: Iron Man and Batman. At least that would have been my answer until January 23, 2015. That day everything changed. If I’m being honest it had been changing for months, but that was the day my answer changed for good. I can even pinpoint the precise moment: 9:40 AM. It was at that exact moment I looked into the eyes of a girl we call Princess Pants (Pants for short) and I realized that the only answer to the question, “Who’s your favorite hero?” that I’m ever going to give is this: my daughter.

I’m not sure how many of you have been following along but my wife, daughter, and I have been blogging about my daughter’s experience with scoliosis. It’s been a terrifying journey and one where I have learned a lot about myself, my wife, family, friends, colleagues, acquaintances, and kind-hearted strangers from all over the world. But what I have learned from all those people combined pales in comparison to what I learned about my daughter.

You can read about the adventure on the scoliosis blog, and I would encourage you to do so, but it can be summed up thusly:

My daughter’s scoliosis was getting worse and worse by the day. Each week that passed you could visibly see the deterioration. It was just a matter of time before she would be experiencing constant pain and her spine would accordion and look like a flattened “S”.  Surgery was required, and on January 20, 2015 that’s exactly what she had. I walked her to the operating room and at 8:20 AM that morning she drifted off to sleep. More than eleven hours later we got word from the surgical team that they were done. Two titanium rods were now permanently screwed into her spine with 27 titanium screws. The surgery was a success but she was under for so long they were keeping her sedated and on a ventilator for another 12-24 hours. Oh, and she needed 6 liters of blood during surgery (just about two full transfusions). Oh, and she was covered from knees to neck in hives from an unknown allergic reaction. At 9:30 AM the morning of the 21st they woke her up and extubated and got her breathing on her own. The hives had disappeared, whatever the allergic reaction was had worked itself through. Three hours later she was sitting in a chair with a Popsicle. The ICU nurse said she was hours ahead of the curve. By 4:00 PM that afternoon she was the healthiest kid in the ICU, and since they needed the beds, she was on her way down to a ward room. She skipped the step-down room altogether. The next day, January 22, she was getting out of bed and sitting up in a chair and eating (albeit very little as the pain meds and anesthetic do some weird stuff to your appetite). On January 23 at 9:40 AM she took her first steps with her newly reinforced spine and that, my friends, is the exact moment I knew.

My daughter was unstoppable.

She’s even wearing a cape!

Now, this is a surgery that’s done quite a bit. Not as many result in rods as long as hers (they cover fourteen vertebrae from T2 down to L4), and not as many have that extra hour and a half in the OR, but it’s a surgery that happens about 10 times a year at this particular hospital and hundreds more times a year across North America. The expectation is the patient gets up and walking quickly, so that she can start healing. She needs to get her muscles moving again and begin to sort out how to live with her new body.

I have to tell you though, after seeing what she went through; after seeing how much pain she was in; after seeing her struggle to do something as trivial as roll onto her side in bed, or lift food to her mouth; after seeing how afraid she was; after seeing all that I saw something that I’d never seen in another person before. It was in her eyes, and it stopped me in my tracks. It was powerful, it was crystal clear, and it simply said this:

I will.

It wasn’t just that she was going to figure out how to walk. Of this there was never any doubt. It was the look in her eyes that said, “Nothing is going to stop me. Ever.“

And I believe her.

If you are interested, here’s a great animated short that explains what they do for the surgery:

[youtube https://www.youtube.com/watch?v=WBIf4AQj5s0]

And here’s a look at my new hero Princess Pants, before, and after with all her new fancy hardware:

~ Andrew

It’s In You To Give

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I had a post all queued up about “success” for this week but something happened last Monday and Tuesday that has led me to move that post to next week – the first Sunday of NaNoWriMo. It’s a better post for the start of the 30 day novel writing campaign anyway. This week I want to talk about what happened last week and the profound impact it’s had on me, and how I feel about charity and giving.

A few months ago a Facebook friend of ours had to have surgery. Brain surgery. Real dangerous shit. He’s the real estate agent who drove us around for two days back in 2009 and showed us almost 30 homes and ultimately helped us buy the house we have lived in for the past 5 years. He even did the final walk through so my wife and I wouldn’t have to fly in from Ottawa to do it. We’ve stayed in touch on Facebook since then and followed the changes in his life, as he and his wife had their first child and then proudly announced earlier this year that another one was on the way.

During his surgery he almost died. He started to bleed and wouldn’t stop. There was something like a 1% chance of this happening and it did. It took blood donations from 60 people to save his life. They pumped 12 litres of blood into him to keep him alive. 12 litres. His body only holds 4. He came out of surgery without a single drop of the blood he went in with – 3 times over.

Healing and grateful to be alive he decided to give a little back and hold a blood drive down at the local Canadian Blood Services location in Waterloo and he asked all his friends on Facebook if they would consider donating.

I had low blood iron for the longest time and then was on some pretty fun medications after that and had never donated before. Being med free and with a healthy hemoglobin level right now the only thing stopping me was a healthy fear of needles and queasiness at the sight of blood, which seemed like really lame-ass excuses. So I booked my first ever appointment to donate blood for Tuesday of last week.

Then, in what can only be described as a karmic twist of the Universe, the Monday before my blood donation appointment my wife and I found out that our daughter does not weigh enough to bank her own blood before her surgery. You see, she has severe scoliosis and needs to have spinal surgery in the new year to have metal rods cemented and screwed into her spine to keep it straight. It’s a 10 hour surgery and if not everything goes as planned she’ll need blood. Better it’s her own than someone else’s too. Only now that was not possible.

My wife cannot donate because of some funky rule that prohibits donations from people who lived in France for more than 3 months during certain years. Seeing as she lived there for a year during one of those years she’s ineligible (something about mad cow disease and not being able to test for it until after you’re dead). I will be tested for compatibility (blood type, antibodies, etc…) and if I’m a match I will provide a directed donation to have on hand for my daughter’s surgery. I’ll only be able to donate a couple litres though. A worst case scenario would see her needing more than what I can offer.

That means there’ll be blood on hand from the blood bank. I really hope none of it will be needed, but it’s awfully reassuring that it’s there if it is in fact needed.

So on Tuesday I went in and donated blood for the first time. It was almost completely painless, everyone was very supportive, and I got to have juice and cookies afterwards. My friend was even there talking with all the people donating and thanking them. If I’m being completely honest, I felt really good about it. The best way I can describe it was that I felt like I was making an immediate and profound impact on somebody’s life. I went home afterwards proudly sporting my “First Time Donor” pin and feeling great (though getting out of bed the next morning was a challenge. I was really tired!)

I’ve been telling people this story ever since and am encouraging everyone to go find out if they are able to give blood, and if they are to please donate. It makes a difference. It saved my friend’s life and could very well save my daughter’s.

~ Andrew

P.S. I’m cross posting this on our family scoliosis journey blog. Read up on what we’re going through, and what it’s like to go down this path as part of the Canadian medical system.