Sunday, December 22, 2013

Something to smile about

At the risk of sounding like a grumpy, yet handsome, mix between the Grinch and Ebenezer Scrooge, I will readily admit that Christmas has not always ranked very high on my list of favorite holidays.  In fact, for many years, it came in somewhere below Groundhog Day and just above Arbor Day.  What can I say?  When it came to Christmas, I spent a lot of time in the “bah humbug” camp.

You see; my issue wasn’t with commemorating the birth of the Savior, hoping for peace on Earth or wanting to spread goodwill towards men (and the ladies).  The reason I was down on Christmas was because, to me, it represented the opposite of all those things.  Overspending, quarreling with family, stressing about gifts, the hassle of travel – these are the themes that dominated my December 25th.

And then I married Santa’s biggest fan.

Suddenly, and without warning, things began to change.  We bought a tree and began decorating the day after Thanksgiving, we made and delivered endless numbers of cookies and treats to friends, family and co-workers, we scaled back on the number and cost of the gifts we exchanged, we sung carols every night of the month and we started my favorite tradition of all; giving to others.

What does that mean?

Well, every year, we each commit to go without a gift.  Instead, we take the money we would have used to buy those presents and donate it to charity.  And though it means there’s more space left under the tree, we’ve never missed receiving any of those gifts.

In instituting this most favored tradition, Casey and I wondered if the kids would be upset about our plan.  We were concerned they’d feel ripped off.  More than that, we were worried they wouldn’t be on board with sacrificing for others.

Enter the true spirit of Christmas.

To our great delight, the kids were more excited about it than we were!  After offering to give up all their gifts (which we assured them was not necessary), we got busy as a family and began searching out charities.

Over the years our “gifts” have gone to many worthy organizations and this year is no different.  After seeing a commercial for Operation Smile, an organization that sends surgeons to disadvantaged countries to surgically repair people’s cleft palates, the matter was decided.  And so it is that this year, two kids with cleft palates will be able to get the operations they need to get something every child should have; a smile.

And so, all these years later, Christmas has flown to the top of my holiday chart (it’s right there with Thanksgiving, arguably my all-time favorite) and I’m no longer Mr. Bah Humbug.

I guess it just goes to show that when it comes to Christmas (and probably everything else too), it truly is better to give than to receive.  That, and that in every instance in life, my wife is always right (see honey, I do write about you on the blog.  Merry Christmas angel!).

***If you’d like to donate to Operation Smile, click here.

Tuesday, December 10, 2013

Man on a mission

Snow was falling, the mercury was hovering around 32 degrees and the clock read 9:03am. School was canceled and the government was officially closed for the day. No one in their right mind would venture out in this weather unless they had to. 

And I had to. I absolutely had to. 

You see, it's my job as a husband and father to bring home the proverbial bacon, which means I do what needs to be done. And when it comes to bringing home actual bacon, I take my responsibility just as seriously. 

Wait, what?

Well, put simply, I had a hankering for bacon and we were fresh out. Oh the humanity!

And so it was that I told Casey, "Get me ruggied up, I'm going to Safeway."

She looked at me like I was crazy. After all, I don't even like going out if there's a modest breeze!

But this was different. This was bacon. I had no choice, but to answer my own personal call of the wild. 

And, with my two trustee helpers bundled up with me and ready to go, I headed out into the elements. It was me against nature and I would not be denied. 

Despite my coat, the blanket under my coat, the sweater I had on, the warmers I stuck to my sweater and my undershirt (not to mention my two scarves and my beanie), the cold air managed to find its way to my delicate (you like that?) skin.

No matter, I pressed on. 

Sensing the chill that threatened my mission to acquire the greatest breakfast meat of all time, the girls began encouraging me. 

"You can do it Daddy!"
"Keeping going Daddy, we're almost there!"
"You can do it Daddy!"

And whether it was their sweet encouragement or the anticipated euphoria brought on by picturing myself devouring that salty delight, I lowered my head and hit the gas. 

Onward and forward. 

We reached the grocery store and I drove in and headed straight for the meats like a crazed man making his way through a crowd. Toes may have been run over, ankles may have been clipped. Who could tell? It all happened so fast. 

That said, I did slow down long enough to grab a bag of chips, some sausage and a tomato too. Don't ask. 

With the beep of the checkout scanner and the swipe of my credit card, we were back on the road. 

On the way home we were all cold so we took turns encouraging one another. And it worked as with the blink of a chilly eye we were back home again. 

"Fire up the stove mama!"

Minutes later, the heavenly smell of pig wafted through the house. Moments after that, I took what was to be the first of MANY bites of bacon. 

In a word. Yes. 

It was just that delicious. 

A few hours later, I awoke from my food coma and realized we were out of lemons. Oh well, it can wait until the Spring. 

Face it, I'm a carnivore.

All this to say, you never know what you're capable of until you're pushed to the brink. And whether it's bacon or a desire to achieve in areas that have long challenged your success, sooner or later you'll get hungry enough to answer your own mission call and make it happen. 

For love of the game

How does a guy who can't run, jump or throw develop a genuine love for sports? By seeing himself in every pitch, shot and touchdown despite the fact he knows he'll never get to take the field himself. 

At least that's how I do it. 

There's a special bond that inextricably connects those who sit on one end of the athletic spectrum with those whose physical gifts and abilities enable them to live, if only for a moment, on the opposite side of that same spectrum. It's that connection that allows me to feel what I consider to be the pure joy of sports. 

And so it is, with that perspective in mind, that I was on the court when Jordan buried the Utah Jazz with his last second shot in the NBA Finals. I was on the mound when Schilling led the Red Sox on a bloodied ankle. And I was on the field when Montana connected with John Taylor to defeat the Bengals in the Super Bowl.

But all of those moments pale in comparison to my favorite sporting moment of all time, which occured during last year's "Gobbler Gallop."

As I've written about before, every year Isabelle runs in her elementary school's mile-long fun run called the Gobbler Gallop. Last year, as a kindergartener, Sammy decided to run too. Because they were in kindergarten and second grade respectively, they got to run in the same heat, which we thought was pretty neat.  They lined up together and took off when the whistle blew.  From there, each girl was on her own.

Around 9 minutes later, Isabelle crossed the finish line.  Sammy, however, was nowhere in sight.

Time passed and still no sign of Sammy.

Finally, about 100 yards away, Sammy arrived on scene.  She wasn't running anymore, she was gassed and walking slowly.  It didn't look like she'd be completing her first gallop.

And that's when it happened.  Seeing her sister about to falter, Isabelle, who was still tired from having completed her own race, took off in a sprint towards Sammy.

"Where are you going?" Casey asked.

Isabelle's reply was beautiful.

"I've got to help her finish!"

And with that, Isabelle raced to Sammy and, upon reaching her, hoisted her up.  And, together, they fought their way down the final stretch of the course and crossed the finish line arm-in-arm.

As a father, I couldn't have been more proud.  As a sports fan, I couldn't have asked for a more inspiring moment.

And, though I was stuck at home in a hospital bed when it all happened, hearing the detail and meaning with which the three of them described it to me, it felt like I was right there alongside them.

It was, and is, proof positive that you don't have to run the race in order to come out of it a winner.

Are sports great or what!

Friday, December 6, 2013

Kids in the "know"

It's amazing to me that my kids can somehow manage to overlook finding their own hands in front of their faces and yet they still manage to notice when three hairs are parted to the left side of my head instead of to the right. Incredibly, the most imperceptive young ones among us tend to also posses a Spider-Man like sense when it comes to the most nuanced and minute matters. 

How else do you explain how, even as toddlers, my girls knew that when giving something to daddy, they needed to place the item directly in my hand? Or that when it came to giving me hugs, they tackled me from the left side or the middle in order to avoid pushing on my wheelchair controller, which is positioned on my right side?

Somehow they just seemed to know. 

And, as I learned over Thanksgiving week, intuition runs in the family. 

With my sister-in-law in the hospital due to the early arrival of our newest nephew, Evan (who came less than a month after my first grand-nephew Ethan) I got the opportunity to babysit his two-year-old brother, Scotty "boy-boy" Lieng. 

A few things to note here about Scotty:

-The kid is a true boy; he's as rambunctious as they come
-My little man could give Hulk Hogan a run for his money in a wrestling match 
-He's as smart as a whip, cute as a button and, like all kids; he likes to get his way

And so I found myself in awe to find that whether playing dinosaurs, having snack time or just horsing around, boy-boy somehow knew not to throw toys my direction (opting instead to put them right in my mitts), to shove Cheerios right into my mouth and to avoid grabbing my wheelchair controller (although he did eye it every time he walked by me). He didn't need prompting, prodding or instruction, he just knew.  

Boy-boy also “just knew” that if he jumped on the back of my chair and squealed, I'd give him a ride. That if he climbed on my feet he could reach new heights and grab yummy treats. And he managed to figure out that hugs, kisses and smiles go a long way to getting whatever you want from uncle Vance. 

Like I said, kids today are in the know.

Thank goodness!

Wednesday, November 27, 2013

Ghost Chair

We all know that kids say the darndest things, but so do parents.  I don’t know why I say half the things I do, but when it comes to the girls, I sometimes find myself spouting off all manner of silly stories, corny jokes and tall tales.  The latter of course tends to be the most entertaining.  Take for example, the adventures of ‘Ghost Chair.’

Ghost Chair came about because Isabelle and Sammy wanted me to tell them a scary story.  Wanting to spook them a little, but not freak them out, Casey winked at me and suggested aloud that I tell them about Ghost Chair, my haunted wheelchair.

In short, here are the basics when it comes to Ghost Chair:

  1. At night, my wheelchair comes alive and drives around the house looking in to see if anyone is awake.
  2. If Ghost Chair finds anyone awake who isn’t supposed to be (like naughty children), it runs them over.

Casey and I expressed our own deep personal fears of Ghost Chair and told them we hoped to heaven they’d never encounter it.

Fast forward several months.  Isabelle was awake long after we had all gone to bed.  She was out of chances and we were at our wits end.  Then it occurred to us, Ghost Chair might be the solution to our problem.

And so it was that Casey, with all the stealth of a ninja, unplugged my wheelchair charger, flipped the chair on manual, ducked behind it and slowly pushed it towards Isabelle’s room.

As expected, Isabelle perked up when she heard the floor creak.  But upon seeing Ghost Chair, she did something unexpected, she closed her eyes tightly and laid as stiff as a board.

Whispering to me from the hall, Casey said, “I think she’s asleep.  But I smelled fear in the house and knew something was up.  Like a wild animal making its final play for survival, she was simply playing dead.

Isabelle, are you OK?” I called out.


I tried again, “Isabelle?

And that’s when she broke.

Daddy, help, it’s Ghost Chair!!!!!!!!!!”  Her voice was trembling and tears were flowing.

Seeing how upset she was, we came clean and confessed our prank.  And though it took her a moment to settle down, she got to sleep in our room that night, which to her was worth battling a million Ghost Chairs.

Haunted wheelchairs, who knew?

Sunday, November 17, 2013

Rejecting the cure

Last week during dinner, Sammy asked me the following question: “Daddy, if there was a cure for Muscular Dystrophy, would you want to take it?”

I found the question to be interesting for these three reasons:
  1. It let me know that Sammy has developed a deeper understanding regarding the cause of my disability than I had previously given her credit for.
  2. It told me that she spends time thinking about my physical abilities, limitations and well-being.
  3. It surprised me because I figured she wouldn’t have to wonder about whether of not I wanted to be in a wheelchair.

Rather than answering her directly, I responded by asking her and Isabelle the following question: “Would you want me to?”

Almost in unison, they both replied with a resounding “No.”


“Why not?” I asked.
"That would be weird.  You wouldn't be our Daddy, you'd be different."
"What do you mean?"
“You couldn’t take us for rides and we couldn’t sit on your lap.”

Sounds like a good enough reason to live the rest of my life in a chair.

"Because you're our Daddy!"

As crazy as it may be, it turns out those two boogers like me for me.  They didn't want me to change because Daddy is who Daddy is and that's perfectly fine with them.  What an amazing show of love.

After listening to the girls continue to rattle off all of the reasons why they wouldn’t want me to take the cure, Casey asked them to look at it from my perspective.  That's when they got quiet.

“Daddy, do you want to walk?”
“Yes, I think that could be nice.”
“Then you could throw us in the air, and carry us on your shoulders, and play soccer with us, and...”

And their list went on and on.

“It would be awesome to do all those things with you girls.”
“But you’re still the best Daddy in the world!”
“Yeah, you’re probably right!”

And then, after thinking about what I might want, they said it.

“I guess you can take the cure if they have one.”
“And you’d still love me?”

And that’s when it hit me; that answer is the only cure I’ll ever truly need.

Sunday, November 3, 2013

My real Halloween fear

We each have our roles to play and in our family, mine includes taking the kids trick-or-treating.  It started as a simple gig, escort the kids to a couple houses, ring some doorbells, yell trick-or-treat and remind them to say thank you to their neighborhood sugar donors.  However, as they’ve gotten older, my Halloween-related duties have expanded.  For example, “Halloween Fun Night.”

Sponsored by the local PTA, this mass gathering of little goblins takes place at the school.  In addition to getting to buy tickets to participate in all of the different carnival-like games/stations, I get to navigate my way through the seemingly endless throngs on students, volunteers and parents who, when all crammed into the same confined quarters, collectively send the temperature above and beyond what you might experience in a sauna.

Because there’s two of them participating now, each wanting to play off in opposite directions, my duties also include being a master of a game I like to call “Eye spy my child.”

Thank fully, I have a perfect record!

Regarding the actual trick-or-treating, the kids have started to game the system.  More houses equals a bigger loot.  As such, I found myself having to hit the high gear a few times this year to keep up with them.  And since more houses also equals covering more ground, the limits of my wheelchair batteries were well tested.  At this rate I’ll need to bring my charger next year.  Either way, I kept up (so far so good) and managed to get everyone home safe and sound.

OK, technically I had company this year in the form of four additional parents, their kids and Casey, but in my mind it was still me against the Halloween world.

The point is, when it comes to Halloween, I was, am and will continue to be, the main man!  And guess what?  I love it!

In fact, the only thing I don’t like is knowing that my window for being “Mr. Halloween” is closing with each passing year.  That’s right, the kids are growing up.

Now that’s scary!

Tuesday, October 29, 2013

The Battle to Inspire

Please don’t read the first part of this post and think me to be an arrogant, self-absorbed egomaniac; I’m really none of those things (though there are lots of colorful adjectives one could use to accurately describe me).  Please just trust that I’m coming from a sincere place.

I’ve mentioned before that on occasion people, even strangers, pay me the tremendously humbling compliment of saying I inspire them.  With appreciation in their hearts, they explain how my example has provided them with strength and motivation to push through their difficulties.  They use words like “role-model,” “bravery” and “hope.”  And as grateful as I am to know I have helped others, I can’t say I ever really understood how one life could impact another in such a meaningful way, especially from a distance.

Then I got to know Chris Battle.

Guys like Chris, and there aren’t many, don’t wake up in the morning thinking “I’m going to be super dynamic today so I can provide encouragement to others.”  They just get up and live the best day possible.  And somehow that does the trick.

A loving husband and father, a media wunderkind and a political savant; Chris was a lot of things to a lot of people.  So what was he to me?  Put simply, Chris Battle was (and remains) my hero.

After being diagnosed with kidney cancer, Chris started The Kidney Cancer Chronicles, a blog where he used his amazing mastery of words, wit and humanity to share his harrowing experiences with the world.  Through the blog we learned about his extreme fear of needles, the vivid ins and outs of experimental medical treatments and the sheer joy that comes from being granted one more day on Earth to love your family.  Chris shared it all with his readers, held nothing back and managed to literally make us laugh, cry and ponder as he selflessly allowed readers the privilege of joining him on his deeply personal journey.

Although I was fortunate to have some opportunities to personally interact with Chris, they did not come with great frequency.  We weren’t best friends or even exceptionally close.  And yet, as I said, he was my hero.

How I truly came to know Chris was through his words.  Here was a family man with a loving wife and two girls, trying to live, not for himself, but for them who granted us the gift of sharing with unabashed detail his struggle to survive.  And though it would be like a dwarf comparing himself to a giant, I felt we shared a special kinship.  Though our circumstances were vastly different, I couldn’t help but believe our plights were the same.

And so, if Chris could make it through sleepless nights dealing with crippling nausea, burning in his feet and disorientation from the side affects associated with his cancer treatments, I could make it through my time on bed rest.

If Chris could manage to make us laugh while recounting the horrific experience of being unable to breathe or passing out following a blood test or enduring the unfathomably difficult task of picking out his own burial plot, I could stay calm through the times when I was short of breathe, smile when I stared at a plate of food I couldn’t feed myself and be hopeful when contemplating my uncertain future.

If Chris could do it that meant it could be done.  That he managed to remain positive and avoided losing himself during his war with cancer inspired me to press on in my own fight.

And so it is that I finally, truly, get it now.  I understand the power of example, how one life can touch another is such a deep and vital way – even from a distance.

Chris was my example.  He never knew it, but he got me through many challenges.  And though he is no longer with us, he will continue to inspire me (and others).  That’s what heroes do.

I pray that each of us can do for one another what Chris Battle did for me.  Should we do so, ours, like his, will be a legacy that time can never forget.

Sunday, October 27, 2013

Patching it up!

In what has become a yearly Taylor family tradition, Casey, Isabelle, Sammy and I headed out to the patch this month to load up on pumpkins and apples.  And, as tends to happen, what started out as a simple outing turned out to be a great experience that provided some interesting takeaways.

Here’s what I came away with:

My GPS hates me.  Normally the sweet voice of our in-car GPS has nothing but love for me.  Indeed, normally, she gets me where I need to be with ease and efficiency, but not on patch day!  No.  On patch day that sweet voice turned into a crazy, no-good, misguided computing mess that managed to provide the worst directions in the history of all trips (maybe it overheard me talking to Siri and got jealous).  However, right when I as I was preparing myself to throw in the towel of frustration, the girls chimed in: “Guys, even though it’s taking forever to get there, we can still have a good attitude.”  

What could I do?  I had no choice other than to hang in there and not flip out.  We’ve talked to the girls about controlling their outlook a million different times, now they were teaching me.  Who knew they were even listening?

I held it together the rest of the way, but we found our own route back.

You’ve gotta search hard for the good stuff.  We decided to hit the apple orchard on the way in and the pumpkins on the way out.  Before long, the girls found themselves surrounded by thousands and thousands of apples to choose from.  However, while there were plenty of “decent” apples within arms reach, finding the really good ones took some serious searching, reaching and hardcore plucking power.  Committed to coming home with the best apples, they dug deep, pressed on and landed the good stuff.

As expected, it was worth the extra effort.

Kids are freakishly strong.  Having seen Casey nearly warp her spine carrying the kid’s gigantic pumpkins last year (according to children, bigger is always better), we established a simple rule this time that when it comes to selecting a pumpkin, they could only buy what they could lift.  Amazingly, Isabelle and Sammy, while almost busting their tiny guts, still managed to pick out, lift and purchase surprisingly heavy selections.  Where we ran into a problem was in getting my pumpkin.

After picking out the one I wanted, which was hefty, Isabelle decided I needed to adhere to the rules too so she hurled it on my lap and said, “Daddy, you can only have it if you can carry it.”

The impact of that pumpkin landing on my stomach and lap nearly ended me. (Who knew a pumpkin could be used as a weapon?).  Still, I managed to drive my pain-riddled body and oversized pumpkin up to the cash register, cursing my stupid carrying rule as I did so!

In the end, I suppose I learned that sometimes the funnest family activities are the simplest.  Apples and pumpkins, it doesn’t seem like much, but it sure did make for a wonderful day.

I can't wait until next year!

Monday, October 21, 2013

Stone Cold Serious

Recently, I was inducted into an exclusive club.  Now, while I’m not typically one to brag, I worked so hard to be included into this prestigious group that I figured I’m entitled to be able to post about it. So what is this elite group?  I’ll tell you.  It’s the “Three-stone club.”

Never heard of it?  Well consider yourself lucky.

My path into the club began in college when I developed (and passed) what sadly was the first of what became a chronic series of kidney stones.  Yes it hurt.  And yes, I even tried (unsuccessfully) to block the experience(s) from my mind.  However, since it marked the first step along my journey to becoming a three-stoner, I can’t say it was all bad (though it sure felt like it was at the time).

My second step along this legendary voyage came when, shortly after getting married, I had my gall bladder, along with its accompanying gallstones, removed.  Not only did it require emergency surgery, but those stones cost me a cruise to Mexico.  That’s right, instead of taking Casey on a honeymoon; we literally missed our trip and went to the hospital where she had a front row seat to witness my painful progression towards attaining stone greatness (what a deal!).

Now, most people would have stopped at having had the two different types of stones because they just don’t have it in them (literally) to go for the trifecta.

But I’m not most people.

And so it was that when my urologist (man I feel old) informed me last month that I had a bladder stone, I knew I had arrived.  Kidney stones, gallstones and a bladder stone; I’m breathing rarified air!

So, after what turned out to be a far more painful “procedure” than I had expected (think laser and sensitive areas – not a good combination), two weeks ago, the final and offending stone was removed and I officially became a three-stoner.  It literally took years of blood, sweat and tears, but I made it baby!  I’m in!

Below is a copy of my short, but sincere, induction speech:

"Dear lord, please don’t let there be a four-stone club."

Sunday, September 29, 2013

Almost famous

When it comes to interacting with kids, I get the celebrity treatment.  Don’t believe me?  Just follow me around when I volunteer at the girl’s elementary school.  From the second I pull up in my super-duper cool “ramp van” to the moment I head back home, it’s all eyes on me.

Over the past few weeks I’ve gone in to be a parent helper at lunch and during recess on two occasions.  Other than being excited about surprising Isabelle and Sammy, I didn’t think too much about it.  However, as soon as the ramp dropped down and I rolled out I noticed countless kids staring out at me through the windows of the cafeteria.  The boys pointed and wore looks of amazement.  I saw several of them mouth the words “that’s so cool!

That’s right kid, I am that cool.

The girls, being more mature than the boys, chose not to point, but were quick to jump in front of me as I strolled through the double doors to ask, “how does that work?

It works because I’m a wheelchair genius kid.  By the way, that’s a cute headband you’re rocking.

Feeling emboldened by the confidence their female counterparts displayed in speaking to me directly, the boys decided to ask some questions of their own.  Do you have a disability?  Does that thing go fast?  Have you ever raced?  By this time a crowd had formed and Isabelle, who had spotted me and had fought her way through the vast gathering of 3rd graders was hugging me.

My public was waiting.  They demanded answers.

Yes, yes and yes,” I said.  And guess what else?  Silence hung in the air.  I can do wheelies too!

I had gone too far.  They couldn’t believe it.

Sensing that I was losing them, I turned to Isabelle.  Do I do wheelies with you?

She looked at me, then back at them.  And with a big smile that showed off all of her big-girl teeth said, “Yes.

The crowd went wild.

After receiving the same treatment from Sammy’s schoolmates during recess, I got back in the van to head home.  But before leaving, I glanced back at my new fans.  They were still staring in awe.

What can I say?  When it comes to wheelchair admiring elementary school students, I’m kind of a big deal.

Sunday, September 22, 2013

Telling my tale

For a long time now, I’ve had a lot of people tell me that I should write a book about my life story, a memoir.  And, over the years, I’ve tried doing so, unsuccessfully, many times.  I’d start, stop and let time roll on by.  It was a process I repeated at least a dozen times since college.  I’m not exactly sure why I couldn’t finish putting my story on paper, but I have a few ideas about what held me back.

  • Writing a book is really hard!  On the surface, the notion of doing a memoir seems easy.  After all, who knows me better than me?  I lived the story so I should be able to tell it.  However, the fact is that writing anything of quality that’s over a few pages long requires an obscene amount of time, discipline and unwavering dedication – not to mention patience.

  • You can’t hold out on your readers.  Writing a memoir means having to expose your triumphs and failures to the world.  Making yourself that vulnerable and open to scrutiny takes courage, confidence and a little bit of mental instability.  But, when it comes to putting your story out there, it has to be real, raw and authentic.  That means peeling back all the layers, even the ugly ones.

  • Determining who/what make the cut.  In sharing your story with others, it’s simply impossible to include every significant event or person within the pages of a book.  At the risk of offending others, you have to pick and chose who and what are mentioned, detailed and acknowledged.  Inevitably that entails leaving someone or something out (try explaining that to whoever gets left on the editing room floor).

That said; I’m happy to announce that notwithstanding my many false starts (which I like to think of as practice runs), I finally overcame the challenges associated with writing a book and have completed my memoir!

Now all I have to do is get it published, which may be more difficult than having written the book!

To all who have helped, uplifted and motivated me along my personal journey, thank you.  I’m a guy who was told he’d never make it in life and yet here I am.  Despite my disease, having to live life from a wheelchair and having had to endure innumerable physical and emotional hardships; I have a bachelor’s degree and a master’s, a fantastic wife, unbelievably beautiful children, a home I love, a job I’m great at and personal peace.

In other words, regardless of everything I didn’t have and was told I’d never have, I still managed to carve out the life I wanted.  It’s not perfect, but it’s fulfilling and jam packed with joy.

In writing about my experiences, even I can’t believe I made it.  It’s been a long road with lots of bumps along the way.  If ever I lose sight my hardships, all I have to do is look at the scars that cover my body, the wheelchair I sit in or remember the pain of my adversities to remind me that I’m never far away from the challenges of yesterday and today.

Mine is a story that needs to be told (which is why I hope a literary agent will be interested in reading my manuscript and work with me to get it published).  It’s my sincere hope that after reading my tale, people will be empowered to continue addressing and overcoming their own challenges.

Now that’s a story I can get behind.

Sunday, September 15, 2013

Conflicting ideals

With school underway again, we’ve found ourselves dealing with the inevitable hustle and bustle associated with keeping the girls on schedule.  Because we’re crazy and didn’t think there was already enough to do, we even decided to really give ourselves a run for the money and signed Isabelle up for soccer.  Go team!

Seeing her out on the pitch (how’s that for learning the lingo!) during her first-ever match this past weekend was great.  And since she had a blast, it made the experience even more rewarding for all of us.

Because she’d never played before, she needed help from her coach to know where to go and what to do.  At times she’d really get in there and mix it up, fighting for the ball and playing solid defense.  However, other times she seemed unsure of herself and became more of an onlooker than an active participant.  I was confused by her on-again, off-again performance.  Why the difference?

Then the answer came to me: Conflicting ideals.

For the past 8-years we’ve been telling Isabelle to play nice, share with others and to make sure everyone gets a turn.  Now all of a sudden we’re telling her to be aggressive, steal the ball and get physical.

Clearly, there is a discrepancy between how, throughout her entire life, she’s been told to conduct herself and how we’re telling her to behave on the field.

So, who could blame the kid for being a bit apprehensive?

As grown ups, we struggle with conflicting ideals too.  My family is my top priority, but I work all the time.  There are always chores to get done and errands to run, but what ever happened to having fun?  And it sure would be nice to enjoy some much-needed R&R, but what about the importance of hitting the gym?

Our lives operate on limited timeframes and a slew of conflicting ideals.  As such, like Isabelle last Saturday, sometimes we find ourselves engaged one moment and paralyzed the next.

It’s a grueling balance to understand, maintain and act upon.

Following the game, which we lost 5-1, I asked Isabelle how she felt.

“I did my best.”
“That’s all any of us can do sweetie.”

Indeed, that’s all we can do friends.  Well, that and learn how to do a bicycle kick.  Now that’s cool!

Sunday, September 1, 2013

Things can be different

I took the family to Hershey, PA last weekend.  By that I of course mean that I rode shotgun while the girls watched movies in the back and Casey fed me potato chips with one hand while driving with the other (and you thought texting was dangerous!).

After checking into the Hershey Lodge, we took our complimentary chocolate bars from the front desk and headed to Hershey Park to ride roller coasters.  Now, while amusement parks aren’t necessarily my thing per se, people love going with me because I can bypass the lines and take them in through the exits (waiting an hour to ride a 90-second coaster is for chumps, lol).  It’s a nice perk and because being in a wheelchair doesn’t really have a lot of perks (minus the good parking) it’s important to take advantage of the benefits whenever they present themselves.  And so it was that I strapped on the park’s official “this guy’s disabled” wristband and started making the rounds with Casey and the girls.

How’d it go?  Well, Sammy summed it up when she asked Casey “Mommy, have you ever been so scared on a roller coaster that you peed your pants?”  Everyone stayed dry, but that doesn’t mean they didn’t freak out a few times.  Oh to be young again!

Hours later, after slaying every ride they were tall enough to ride, mama-bear and I carried out our exhausted adventurers and headed back to the hotel.

As thrilling as our first day was, our second day was an entirely different kind of adventure.  That’s because it was then that I fulfilled my actual purpose in being there, which was to provide a keynote address at a conference sponsored by the Muscular Dystrophy Association.

In speaking to the audience, which consisted of adults with neuromuscular diseases, I focused my remarks on achieving personal and professional success.  In sharing my own struggles, challenges and successes with them, I hoped to provide them with a certain level of inspiration, encouragement and strength.  I wanted to show them that someone “like them” who had lived their life from a wheelchair had still managed to defeat the odds and carve out a successful and fulfilling life.  It hadn’t been easy, but it was possible.

In the middle of my talk, Casey came in with the girls, which only served to reinforce my message.

Following my speech, several people came up to speak with me and Casey.  One of them, the mother of a talented young man with a similar form of Muscular Dystrophy as the type I have, threw her arms around Casey.  With tears running down her face she said, “Just to know that things can be different means everything.”

Her happiness came in learning that her son could go to college, work and have a family.  That knowledge meant the world and before leaving she whispered one more time “Things can be different,” smiled and, along with her son, went on her way.

My friends, I’m here to tell you that no matter how hard your life’s path can feel, things can be different.  And, assuming we do our part, they will be.

Here’s to hoping that each of our situations and circumstances will be different, and in a wonderful way, as we travel through this crazy thing we call life.

Tuesday, August 6, 2013

Food for thought

Isabelle came up to me last week around 5:30pm and in a very mature way told me she wanted to spend more individual time with me.

“You know.  Like, just you and me.  Not Sammy or Mommy.”
“Yeah baby, individual time.  I gotcha.”

When I asked her what we should do, she replied without hesitation.

“I want to pack a picnic and eat dinner at the park.”
“Sounds good.  When?”

What can I say?  The kid knows what she wants.

Being that it was ‘Daddy’s dinner night,’ I had ordered pizza.  When it arrived, we threw some slices into a Tupperware container, packed some fruit, water, napkins and a fork.  Then Isabelle hopped on the back of my wheelchair and we headed out.

When we arrived at the park, she set out our dinner like a picnic pro.  Everything was in its proper place and we ate until we were full.  During the meal, Isabelle took turns taking bites and feeding me, which she’s become very good at (no more dumping food down the front of my shirts).  There were other people around, but she felt no embarrassment in feeding her Daddy.  It was about enough to make me tear up.

After dinner, and at her request, I watched her play on the playground and cranked tunes for her to dance to from my iPhone.  It was a great date.

On the way home, she asked me an interesting question.  She wanted to know if I was sad about having Muscular Dystrophy.

“I would rather be able to walk, but do you think I’m a happy guy or a sad guy?”
“Oh a happy guy for sure!  Plus you get to do lots of fun stuff with us because you’re in a wheelchair.  Like wheelies.”
“Well there you go.”

She smiled.

When we got home, Sammy was crying.

“What’s wrong?”
“I never get to go out on a picnic dinner date with you.”

The next night we packed up the leftover pizza and Sammy and I headed over to the park.

The spread wasn’t laid out quite as well (Sammy is more impetuous than her sister), but the company was amazing and most of the food actually made it into my mouth (and onto my cheek, my shirt and even my pants).  But just as with her sister, there was no shame or hesitation in helping Daddy in front of others.  It was a beautiful thing.

After dinner, and at her request, I watched her run back and forth from the playground to the baseball field then swing on the monkey bars.  Then, just as had happened the night before, I was asked to cue up the music for a mini dance party (my girls like to boogie).

On the way home, Sammy asked me a now-familiar themed question.

“Daddy, do you wish you didn’t have to be in a wheelchair.”
“I’d rather walk.”
“But then we couldn’t go for rides on your wheelchair or have an accessible van (always a big plus).  You’re luckier than other Daddies.”
“Well there you go.”

In a world where things can get pretty messed up, pretty quickly, I like to think of my situation as follows:

It’s impossible to say where my life would have led me had I not been born with Muscular Dystrophy.  All I know for sure is that I’ve got two girls who each want nothing more than to spend time with me.  They feed me, dance with me and invite me to be a part of their lives.  Oh, and did I mention I have a loving wife who was anxious to see me too?

In looking at it from that perspective, it’s difficult to feel anything other than gratitude for the circumstances (both good and bad) that have landed me exactly where I am today.

All that and I get to do wheelies too!

Sunday, July 14, 2013

A Question Worth Considering

Lately I’ve been thinking a lot about what constitutes the actual reality of our lives.  Because our days are filled with so many individual moments it’s sometimes difficult to accurately define how things are going.  For example, unbeknownst to all but a very small handful of people, I had to be hospitalized last week for dehydration.  Two-weeks before that, I wrenched my right foot and partially tore a tendon.  The pain was so intense I began dry heaving and almost passed out.  And though the pain in my foot has greatly diminished and my body is recovering nicely from the illness that led to my dehydration, I cannot deny that both experiences were pretty lousy.

So.  When asked by others how I’m doing, I cannot help but take a half-a-second before responding.  How, really, am I doing?

Am I in a rut feeling war torn by what has come to be a seemingly never-ending battery of health-related obstacles and adversity over the past year or am I overcome by a sense of optimism and faith, which leads me to believe that all these things shall ultimately be for my learning and overall betterment?

Perhaps I’m just emotionally spent and physically tired from the constant upheaval that illness and injury have wrought upon my family and I.  Then again, maybe I’m filled with a growing and deepening sense of gratitude for the strength and resilience with which I’ve been blessed with to be able to endure, and in most cases overcome, my challenges.

If I post a picture of myself on Facebook having a fun lunch with Casey and the girls then all appears to be great, grand and joyous.  If I tweet out a funny one-liner then I’m happy, positive and cheerful.  But how do you post a picture of heartache and would you if you could?  And how does one capture what it means to struggle in 140 characters?

So what’s my “reality?”  It’s become a difficult question to answer, but I’ll try.

In a life that feels perpetually beset with would-be reasons to be justifiably upset, bitter or downright depressed, I find myself feeling surprisingly happy.

No.  I’m not in shock.  I said happy.  It’s just the way I feel.  It’s difficult to explain other than to say that a smile from my sweetheart, hugs from my daughters, the laughter caused by a funny movie and the tenderness of friends and family somehow outweigh the valleys I’ve found myself trudging through, which in no way lessens the weight of the burdens I carry, but manages to let me be of good cheer as I do it.

The power to feel, be and act is within us all.  No matter how heavy our load or dark our road, the ability to push through exists inside the recesses of our souls.  It can be a tough resource to tap, but it beats the pants off of throwing in the towel.

Then again, it’s potato bar night for dinner so maybe that’s what has me in such a good mood.

What can I say?  I’m a complicated guy.