Tuesday, December 23, 2014

Merry Christmas!

Proof that nothing is so sweet as the pure love and excitement of children at Christmas time.  


Merry Christmas from the Taylors :)


Thursday, December 11, 2014

Preserving love

Nearly 12 years ago, I was blessed with a very special gift.  Although I recognized its obvious value immediately, like any newly wed, I wouldn’t be able to truly appreciate it until after we had been together for the long haul.  This gift has brought with it transparency, a toughness you wouldn’t believe and the uncanny ability to stretch in order to meet life’s many demands.  But now it’s gone and I simply cannot believe it.  After all these years, I’m going to have to buy another giant, economy-size box of saran wrap.

What the What???

Yes, you read it right; I’m talking about saran wrap.  But here’s why...

Shortly after Casey and I got married, my mother flew out to visit us.  And, being the wonderful mother that she is, she took one look at our bare cupboards and sparsely filled refrigerator and said, “We’re going to Costco.”

Upon entering Costco, I was immediately distracted by all the electronics, but mom wasn’t.  No.  She was focused.  And after grabbing Casey with one hand and a shopping cart with the other, she went to work.

Watching my mom weave up and down those aisles was incredible, it was like seeing Michelangelo sculpt or observing da Vinci as he painted; indeed, she took shopping to an art form.

Before we knew it, my mom had filled the cart and had stocked us up with everything from bottled water to a television set. 

I remember getting home and looking in our kitchen once everything had been unloaded.  It was like an amazing before and after picture.  We had food, tons of it (it was the good stuff too!).  The cupboards were full.  And in our top right drawer, there was, squeezed between new sandwich bags and freshly purchased tin foil, a big box of saran wrap.


Words cannot express how immensely grateful we were.

And though that food has long since been eaten and the other items are far-gone, one item has remained.  It followed us from DC to Maryland and all the way to Virginia – that bulky box of saran wrap.

We’re fortunate now to stock the kitchen ourselves, but, all these years later, every time we’ve looked at, or used, that silly box of saran wrap, we’ve been reminded of that young married couple (those kids that looked a lot like us) and how much joy poured into their hearts following a mother’s special gift.

And so it is that as peculiar as it may seem, I’m going to miss that beautiful box of saran wrap.  Because for us, it preserved a lot more than food, it kept a mother’s love.

Who knew a thin sheet of plastic could do so much?

Goodbye old friend


Monday, December 1, 2014

Being a Kingpin

A family of Kingpins

I’m surprised sometimes by what activities the girls assume I can or can’t physically participate in.  At times, they assume I can do things like go parasailing, but suppose I choose not to because I don’t want the wind to mess up my hair (yup, that’s the reason).  Other times they presume I can’t do things that I actually can.  Such was the case recently when they figured I couldn’t bowl.

“Yes I can.”  I said.
“You can?  How?”  They asked.

And with that, I realized it was time to step out of my comfort zone and lay the smack down on the notion that I, Vance “the Kingpin” Taylor, could not bowl.

We entered Bowl America along with my brother-in-law, my sister-in-law, their two boys and our friends Whitney and Whitney (W-squared).  They were there to have fun.  I was there to make a statement.

“Daddy, we need to get our bowling shoes,” said the girls.
“Bowling shoes are for chumps.” I said.

It was go time!

So, thanks to a marvelous portable ramp-like invention that Bowl America makes available to disabled patrons, I, with the help of my lovely assistants Casey, Isabelle and Sammy, got my bowl on.

Here’s how each frame went down:
  1. I drove up to the lane.
  2. One of my wonderful helpers placed the ramp in front of me
  3. I aimed the ramp
  4. My cuties put the bowling ball on the ramp and gave it a push
  5. The ball rolled down the lane and slammed into the pins 
Bowler up...
Strike!!!

Once the ball connected with pins, I took the following steps to ensure my status as a kingpin.  If it was a strike or the ball knocked down a lot of pins, I looked at the girls and said: “Boom baby, that’s how we do!”

When the ball failed to knock over many pins, I looked over and said: “You didn’t do it right.”

Either way, I came out ahead.

When all was said and done, I broke a hundred, which was respectable, and enough to barely beat Isabelle and Sammy.  And though they each bowled a few frames for me, I still count my victory as a hard fought win.

“Now do you think I can bowl?”  I asked the girls.
“Yeah, but not as good as Mommy!”  They declared knowing that Casey had the high score of the day.

Well played kids for pointing to the true kingpin, well played.

Saturday, November 15, 2014

It’s about being there


As a father, I want to be supportive of my children.  Because I love them, I want to celebrate their lives, take part in their interests and be there for them in any way I can.  This often translates into attending recitals, coaching basketball teams and watching a lot of soccer games – it’s the price I pay for having active (and talented) kids.

However, try as I might to support their every endeavor, there are times when parenting from a wheelchair makes it difficult for me to do so – like when Isabelle’s soccer team played through a rain storm and I missed her game.

Well, today was such a day.

Every year around Thanksgiving time, the girls run in a school-sponsored race called the “Gobbler Gallop.”  And every year I get up early to freeze my tookus off and cheer them on.  Unfortunately, today, the elements (and my sleepiness) conspired against me.

I woke up at 7:00am to find it was below freezing.  That, combined with a breeze, my inability to generate body heat and my deep desire to avoid frost bite led to one inevitable conclusion: The girls would be galloping without me this year.

Knowing I wouldn’t be there to cheer them on in person, Sammy looked at me and said: “But I can’t run without you there Daddy.”  Who knew she needed her wheelchair daddy to get those legs moving?

Then I huddled them up by my bed for a quick pep talk.  When we were done, their instructions were clear, “run hard.

Thirty minutes later, my cell phone rang.  Two exhausted voices were on the line:

“We did it daddy!”
“Did you run hard?”
“Yes, but we didn’t win.”
“If you raced hard, then you won.  Got it?”
“Got it.”

I smiled.  Mission accomplished.

The fact is that whether you’re disabled or not, it’s impossible to physically be there for your kids every step of the way.  That said, you can encourage, inspire and lead from anywhere, even a chair with wheels.

***Side note:  It helps a lot when you’ve got an angel by your side.  Thanks love!


Monday, November 10, 2014

Finding the light

I'm still here!

It’s been just over three months since I’ve posted anything new on this blog.  In that time, I’ve received numerous texts, emails, phone calls and private messages from concerned readers asking if I am OK and wondering why I have stopped posting.  Though I have expressed gratitude for those inquiries, I have largely neglected to answer the questions they posed – until now.

Prior to my last post on July 15, I had started feeling “off.”  I wasn’t real sick, but I certainly wasn’t well.  However, following that post, things went from bad to worse for me and I began experiencing debilitating hot flashes that were so bad I was afraid to leave the house for fear I would faint on the street.  I began feeling dizzy, tired and achy.

Recognizing that I needed medical attention, I underwent a battery of tests on my heart, lungs, liver, hormone levels, etc., which eventually led to a diagnosis of adrenal fatigue.  My doctors believe the condition was caused by my prolonged use of a prescribed appetite stimulant, which, in addition to shutting down my adrenal gland, also masked my symptoms until they became severe.  I was taken off of the stimulant and given new medicine to treat my condition.  Unfortunately, without the stimulant to mask my symptoms, the full weight of my illness came upon me.

It was a misery unlike anything I’ve ever experienced before.

Almost immediately, I was spending day after day battling an incapacitating nausea that wouldn’t subside.  I was constantly dry heaving, was forcing myself to eat and was experiencing new symptoms like anxiety.  I lacked the strength to maintain even basic conversations and only found relief during my few short hours of sleep.

I tried to put on a brave face for the girls, but they saw right through me.  The low point came when, while alone in the car with Casey, Isabelle broke down into inconsolable tears and asked: “Mommy, is Daddy going to die?”

It took me holding her close for several minutes when they got back for her to calm down.

And while I told her I wasn’t going to die, secretly I wasn't so sure.  Indeed my friends, sometimes after a lifetime of physical hardship, a few added months of what feels like endless agony, can take you to dark places.

Then came the questions from readers: “When are you coming back, we miss your positivity?”  I wanted to answer, but all the gas in my tank was gone.  There was nothing left to give.  No way to explain what was going on and almost no hope that a new day would come.  I could hardly face another moment, let alone blog about it.

And then God stepped in.

One day I awoke and didn’t feel as sick as I had the day before, didn’t dry-heave as much, wasn’t quite as dizzy, tired or sore.  I was a far cry from being me again, but I was one step removed from the darkness that had completely engulfed me.

And, just like that, I slowly (very slowly) began to improve.

I still feel a little nauseous and I dry-heaved once today, but it’s not at all bad – or even in the same universe of bad – compared to what it was.  Plus, last week I got to take Casey and the girls out to a movie and lunch – something that until very recently was an impossibility.

I’m still a little tired and maybe a little wounded, but I’m seeing more and more of my actual self every day.  And guess what?  I’m pretty good-looking!

I mentioned God earlier and I want to circle back to that.

During the worst of my suffering, and in the midst of my darkness, there was, to my everlasting gratitude, still one ray of light.  It was through that ray that I felt the loving arms of my darling angel Casey wrapped around me in love, concern and support.  It was in that light that I felt her worried tears of kindness stream down our cheeks as we held each other in the hope that this too would pass.

And in her love, and through that light, I came to know God in a deeper and more tangible way than ever before.

And maybe, just maybe, that makes this entire ordeal worth it.

I pray you’ll never have to go through what I did, but no matter what difficult situations you may be going through, I hope you’ll stop and find the light in your own life.  And maybe then you’ll see your way through it too.


Sunday, June 15, 2014

A day worth celebrating


I’ve been called a lot of things in my day, but no name, title or moniker has ever brought me more fulfillment or joy than one, “father.”

Having been raised in a single parent household, I had plenty of time growing up to think about what kind of father I wanted to be if I ever got my turn at bat.  I wanted to be the dad who teaches my kids right and wrong, who lovingly (and patiently) helps them with their math homework, makes them laugh, inspires them to be brave, encourages them to be their best, to reach their dreams and to know that, no matter what, they could come to me with their problems, joys or concerns and that, no matter what, I would ALWAYS be there for them.

And so it was that while most of my friends dreamt about becoming professional athletes, I fantasized about becoming a great dad.  Interestingly, because of my disability, I figured that my chances of getting married and having children were probably as far fetched as watching my buddies make it to the pros.

Then I met Casey and my whole world changed.

Not only did my sweetheart agree to marry me (a miracle in and of itself!), but she bestowed me with the miraculous gift of fatherhood (not once, but twice!).

And while it’s been my experience that usually in life, the dream of something hoped for typically supersedes the actual joy I’ve felt after having attained it, fatherhood has been a completely different story.

Nothing, and I mean nothing, is better than this!

I get to read them books, play games (like stick-tag), go out for walks, run errands, watch movies, laugh at silly tv shows, play dress up (no pictures, please), preach, teach, love, care and make them feel like the most important people in the world.

And that’s just stuff we do on a random Tuesday!

So as I think about Father’s Day and my girls and my life and what it all means, all I can do is smile.  After all, what could be better?

Well... the word “grandpa” has a certain ring to it!


Monday, June 2, 2014

Patriot's Day


Last week had some pretty good highlights.  I saw the new X-Men movie, ate a delicious burger fresh off the grill and got a killer deal on corn at Safeway (who doesn’t love a bargain?).  But even better than those biggies was getting to check out the Patriot’s Day celebration hosted by Ms. Massey’s first grade class at Waynewood Elementary.

A classroom full of kids singing patriotic songs, teaching us old fogies about American history and honoring our servicemen and women – I’ll take it!

Check out these hits:


Thanks to the leadership and organizational talents of Sammy’s teacher, Ms. Massey, the kids in our community are learning all about what it means to be a good citizen.  They’re being taught to be kind to others, provide service and respect the sacrifices made by the members of our civic and military branches.

Fantastic!


In a day when our founding fathers get trashed by pundits, when politics have caused many to become jaded and of our kids are too often raised with a sense of entitlement it is refreshing to beyond measure to see our public schools, with their dedicated teachers, administrators and staff stepping up to get it right.

As parents, Casey and I have the primary responsibility for teaching our girls good values and ensuring they appreciate the blessing that it is to be Americans, but having that reinforced by their school underscores our effort and builds on the work we’re doing at home.

And in a touching display of love, when asked to highlight her favorite patriot, Sammy chose me!



What can I say?  God bless America.

Wednesday, May 14, 2014

The Race


Quit give up you’re beaten they shout out in my face.
There’s just too much against you now, this time you can’t succeed.
And as I start to hang my head in front of failure’s face, 
 my downward fall is broken by the memory of a race. 

A children’s race, young boys, young men; how I remember well, 

 excitement sure, but also fear, it wasn’t hard to tell.

They all lined up so full of hope, each thought to win that race 
or tie for first, or if not that, at least take second place.

And fathers watched from off the side, each cheering for his son,
and each boy hoped to show his dad that he would be the one.

The whistle blew and off they flew, like chariots of fire,
to win, to be the hero there, was each young boy’s desire.
And one boy in particular, whose dad was in the crowd,
was running in the lead and thought “My dad will be so proud.”

But as he speeded down the field and crossed a shallow dip,
the little boy who thought he’d win, lost his step and slipped.

Trying hard to catch himself, his arms flew out to brace,
and midst the laughter of the crowd he fell flat on his face.

As he fell, his hope fell too; he couldn’t win it now.
Humiliated, he just wished to disappear somehow.

But as he fell his dad stood up and showed his anxious face,
which to the boy so clearly said, “Get up and win that race!”

He quickly rose, no damage done, behind a bit that’s all,
and ran with all his mind and might to make up for his fall.

So anxious to restore himself, to catch up and to win,
his mind went faster than his legs. He slipped and fell again.

He wished that he had quit before with only one disgrace.
“I’m hopeless as a runner now, I shouldn’t try to race.”

But through the laughing crowd he searched and found his father’s face
that steady look that said again, “Get up and win that race!”

So he jumped up to try again, ten yards behind the last.
“If I’m to gain those yards,” he thought, “I’ve got to run real fast!”
Exceeding everything he had, he regained eight, then ten...
but trying hard to catch the lead, he slipped and fell again.

Defeat! He lay there silently. A tear dropped from his eye.
“There’s no sense running anymore! Three strikes I’m out! Why try?
I’ve lost, so what’s the use?” he thought. “I’ll live with my disgrace.”
But then he thought about his dad, who soon he’d have to face.

“Get up,” an echo sounded low, “you haven’t lost at all,
for all you have to do to win is rise each time you fall.

Get up!” the echo urged him on, “Get up and take your place!
You were not meant for failure here! Get up and win that race!”

So, up he rose to run once more, refusing to forfeit,
and he resolved that win or lose, at least he wouldn’t quit.

So far behind the others now, the most he’d ever been,
still he gave it all he had and ran like he could win.

Three times he’d fallen stumbling, three times he rose again.
Too far behind to hope to win, he still ran to the end.

They cheered another boy who crossed the line first place,
head high and proud and happy -- no falling, no disgrace.

But, when the fallen youngster crossed the line, last place,
the crowd gave him the greater cheer for finishing the race.

And even though he came in last with head bowed low, unproud,
you would have thought he’d won the race, to listen to the crowd.

And to his dad he sadly said, “I didn’t do so well.”
“To me, you won,” his father said. “You rose each time you fell.”

And now when things seem dark and bleak and difficult to face,
the memory of that little boy helps me in my own race.

For all of life is like that race, with ups and downs and all.
And all you have to do to win is rise each time you fall.

Quit give up you’re beaten they shout out in my face, but
another voice within me says, “Get up and win that race!”

-Dr. D.H. "Dee" Groberg

Tuesday, April 29, 2014

Winter in Summer



A few years ago we took the girls to see a movie called Dolphin Tale, which tells the story of Winter, a dolphin who was rescued after getting trapped in a fishing net.  Because of the injuries she sustained, Winter’s tail was amputated and she was fitted with a first-of-its-kind prosthetic.  Amazingly, she learned to thrive and, despite her disability, continues to do remarkably well.

Ever since the movie came out, the girls (led by Casey) have wanted to visit Winter at the Clearwater Aquarium, which is located just outside of Tampa, Florida.

And so it was that following our recent trip to Orlando, we took a detour on the way home in order to spend some time with America’s favorite fish (yes, I know dolphins aren’t actually fish).

Seeing Winter was really fun, she does a lot of neat tricks and is obviously very smart.  However, the experience I enjoyed most was getting to hear what the people around us were saying about her.



I listened as children and adults of all ages took turns recognizing Winter’s disability, conveying concern (not pity) for her and then celebrating how impressive and courageous she is for overcoming her physical limitations.

It was inspiring.

Somehow, that dolphin, in swimming around and playing as she does, is changing the way people perceive disabilities.  What a gift.

In addition to dolphins, they’ve also got sea turtles, sharks, stingrays and a host of other aquatic species – many of which you’re allowed to touch and interact with (in my case begrudgingly).


Me just before I touched a stingray
Me just after I touched a stingray


The goal of the Clearwater Aquarium is to Rescue, Rehabilitate and Release the animals under their care.  When an animal, like Winter, can no longer survive in the wild, they make a home for it right there.

In doing so, I think they’ve managed to help us all.


Tuesday, April 22, 2014

Poolside or bust!



When it comes to fun and excitement, it can be hard to know what’s going to move the needle for kids.  After finding out that I had been invited to speak at a medical conference for the American College of Physicians in Orlando, Florida, the girls didn’t ask about Disney World, Universal Studios or Sea World.  No.  They only had one question: “Does the hotel have a pool?  As soon as I said “yes,” they begged us to let them come along.

So we did.

Well, after 12.5 hours in the car (Casey is a road warrior), we arrived in Orlando in time to go to dinner with the conference organizers, check into the hotel and go to bed.  But the next day was all about the pool baby!

Seeing how much they enjoyed splashing around, jumping in and out, swimming back and forth and playing water basketball made me long for a time when I could derive that kind of happiness from doing anything.  Don’t get me wrong, I like to have a good time, but these kids were euphoric!



It was a hole with water in it, but to them it was heaven on Earth.

I suppose my heaven on Earth was the joy I felt in getting to see them having so much fun.  It’s funny how our children change our life perspective.

After slaying the pool, taming the water slide (it was an awesome hotel) and floating the “lazy river,” we went back to the room, got changed and headed to the conference center so I could deliver my speech (after all, contrary to what the girls thought, that is why we were there).

An hour (and one standing ovation) later, my talk was over.  Soon thereafter, the organizers spoke to Isabelle and Sammy:

“Do you girls think it’s fun to hear your daddy speak?”
“No.  Not really.”

Kids say the darndest things!

Well, at least I took them swimming.  If that’s not worth the 25-hour roundtrip drive than what is?


Tuesday, April 15, 2014

Measuring love


Kids like ranking things, it’s like they crave and need the order.  And so, things get put into buckets of clearly defined favorites, priorities and preferences.  Take school for example.  To them it isn’t about broadening horizons or learning the fundamentals.  No.  It’s about which subject (including recess) they like the most, the tastiness of homemade versus purchased lunches and which friends and individuals (including teachers) they favor most and why.  Basically, it’s all one huge ranking system that extends to all aspects of their lives.

Take love for example.

For some time we’ve noticed that Isabelle and Sammy like for Casey and I to reassure them about how much we love them.  To do so, they’ll ask questions such as: “Who is your favorite 1st grader in the world?” or “If you had to choose between keeping us or Nubbins (our family dog), which would you pick?”

They want us to rank our love, to make it measurable.  However, sometimes doing so can be tricky.

The other day Isabelle asked me the following question: “If you had to pick between saving mommy or saving me, who would you save?”

Without hesitation, I replied: “Between mommy or Nubbins?  Definitely mommy.”

“No Daddy!  Between me and mommy!”

“Fine then.  Mommy.”

From out of nowhere, Sammy chimed in right away: “Then me!”  To which we all started laughing.  You’ve gotta love that kid’s confidence, not to mention her comedic timing.

After we composed ourselves, I tried putting things into a rank and order that would make the most sense to them because I wanted them to understand my answer.

I explained that, as my wife, Casey is, and will forever be, my number one.  I then told them that when they find and marry the love of their lives, that person will become their number one and vice versa.  Next, I said that, as our daughters, we love them beyond measure – tops in the entire universe, more than infinity even!

Their smiles told us they understood.  Thank goodness.  Now they can go on in their rank and ordered worlds secure in the knowledge of their place in our family and in our hearts.

And that, by any measure, is a success!

Thursday, April 10, 2014

My canine companion


For as long as I can remember, I wanted a dog.  And not just any dog.  I wanted a big, well-trained dog that would be my dearest and most loyal friend.  Maybe I had seen too many reruns of Lassie, but in my mind the relationship I’d have with my dog would be an unbreakable bond.  There was just one problem; my mom wouldn’t let me have one.

No matter how many times I asked her for a dog, the answer was consistent and swift: No.  How a woman who claimed to love me more than life itself could deny my humble and persistent request year after year was beyond my comprehension.  No matter.  I’d show her.  When I grew up, I’d be in charge, which meant that, whether she liked it or not, someday, I’d get a dog.

Fast-forward about 20 years.

After a year of marriage, Casey and I bought our first home.  For her this meant wise financial planning and having a place to make her own.  For me it meant I was getting my dog!

It was a simple formula: No parental oversight + No landlord = K9.

We decided we’d go with a German Shepherd rescue.  Casey was pregnant so the thought of a protective dog made our choice that much more appealing.  And after looking at a few, we thought we had landed on an adult male to adopt.  However, before we had time to process the paperwork, we took a trip out West to visit family.

That’s when my childhood dream came crashing down around me.

As it turned out, my brother-in-law’s friend had a dog that had just delivered puppies.  They were adorable and he wanted to know if we wanted one.

“So long as it’s a big breed, I’m fine with it.” I said.

It was not a big breed.  In fact, the puppies would never exceed the size of a loaf of bread.

“No way.” I said.

And then she did it.  Casey pulled the ultimate trump card on me.  With tears in her eyes, my pregnant wife looked at me and said: “Please.”

What kind of heartless husband could ever deny a request under those circumstances?  Not me.

And so, we ended up with a rat-dog named Nubbins.

And though I don’t often admit it, I think things turned out for the best.  After all, she’s light enough not to squish me when we cuddle, she fends off badguys with her ferocious (incessant) bark and because she’s so small her “accidents” are quite manageable.

Oh yeah, did I mention she licks my boogers?  Sure it sounds gross, but for a guy who can’t raise his arms to blow his nose, having a dog that likes my boogers is very useful (I know Casey appreciates it).  Plus it makes for a really cool party trick.

So as it turns out, sometimes not getting what you think you wanted is a gift because often times it means getting what you needed.

Who knew?

Friday, March 14, 2014

Attitude of Gratitude


I read an interesting article yesterday indicating that as we feel gratitude for the good things in our lives, our desire to serve others increases.  I hadn’t ever stopped to think about it in those exact terms, but I have to say that I wholeheartedly agree with the author.

We cannot feel gratitude without also experiencing feelings of positivity, appreciation and happiness.  Gratitude brings with it comfort and peace.  It provides us with a greater sense of who we are, and whatever our present circumstance might be, it reassures us that we’ll be OK.

Gratitude brings with it the implicit power to shift our perspective from an inward focus to an external one.  It, almost magically, inspires us with a want to serve others because it empowers us to move beyond ourselves.  In every way, gratitude is the opposite of selfishness.

As humans, we tend to have a natural tendency to hone in on the negative.  If you ask most people to identify what’s wrong in their lives, they’re likely to rattle off a list large enough to fill a phonebook.  However, ask those same people to tell you everything that’s right and often their responses will barely fill up a Post-it note.

Focusing on ourselves, on our troubles, on our worries, on our challenges leaves us empty inside and so self-absorbed that we neglect to recognize the needs of those around us.  Furthermore, when we do chose to look at others while lost within ourselves, we only see what they have that we don’t.  This creates an inner void and destroys any motivation to do something, anything really, for others.

Not only that, but it also makes us miserable.

Focusing on the negative breeds more negativity.  It spawns self-pity, bitterness and anger – and what good have those feelings ever done for anyone?

The only way to truly invite the peace into our lives that each of us so desperately needs is to move beyond ourselves.  Indeed, the ability to overcome our trials will never come from wallowing in them.

In having gratitude for what we have, we will find ourselves wanting to seek out ways to serve others.  In doing so, we will find ourselves being more helpful, positive and happy.  It will not “fix” all of our problems, but it will rob adversity of its sting and make us feel better.

Gratitude is a powerful tool.  Service is its enriching byproduct.  Both are readily accessible to us.

And that’s something we should all be grateful for.


Tuesday, March 11, 2014

Stick-Tag!!!

One of the greatest joys I've experienced as a parent has been getting to watch Isabelle and Sammy grow up before my eyes.  And while they've each got a ways to go before they're all grown up, I'm amazed by just how much they've changed in such a seemingly short amount of time.  So what’s the biggest difference between when they were babies and now?  I can answer that with one word.  Speed.

Let me explain.

When the girls were really little, I could race them anywhere and win easily.  My dominance was unquestioned, my quickness undeniable.  However, as they’ve grown, I’ve had to find new and creative ways to keep up with them.  Things like punching my wheelchair into high gear.  But now, it’s no use; the tables have turned.  Daddy is fat, old and slow as molasses.  My era of swiftness has been surpassed by the boundless energy and agility of youth.  It’s something every aging generation faces, but not something I’m choosing to accept lying down.

One of the games we’ve always enjoyed playing is tag.  And since the weather finally warmed up, we decided to kick off our first game of the season yesterday.  However, due to their increased velocity, we've made certain adaptations and accommodations in order to even the playing field.  Namely, I carry a big stick.

Again, let me explain.

Normally, the notion of a father chasing his daughters around the backyard with a big stick is frowned upon.  But, for me, it’s the only way I have any shot at tagging them.  I can’t lengthen my stride, but thanks to a long, thin downed branch, I found a way to lengthen my reach.

And thus, we invented the glorious game of Stick-Tag.

Before you report me to Child Protective Services, you should know that the girls love it!  And while I sometimes feel silly picturing myself as I drive around like a madman trying to hit (excuse me, “tag”) my kids with a stick, the sheer delight I feel from playing with my daughters makes the silliness of it more than worthwhile (it also helps that I’m pretty good at it).

Who knows what crazy new rules, regulations or bylaws we’ll add to stick-tag (or any other game) as the girls continue to grow, but so long as we’re always finding ways to keep playing together, you can bet each contest will start and end with a smile.


Sunday, March 9, 2014

Who ya gonna call?


Have you ever thought back on some nostalgic experience from your youth only to realize in adulthood that your magical moment wasn’t all you thought it was cracked up to be?  For example, when I was a kid, Cheez Wiz was the sustenance of the gods.  Today, however, just the thought of that yellow goop is enough to trigger my gag reflex.  My how things change.

Well, in an effort to entertain the kids this weekend, we decided to go old school and show them what I remembered to be one of the quintessential movies of my childhood.  A movie that, as memory served me, had it all; laughs, screams, suspense and a gang load of melted marshmallow.

That’s right.  We busted out the valence meters, fired up the proton packs and launched into one of the greatest cinematic masterpieces of all time.

Care to take a guess as to who we called?  I’ll give you a few hints.  Want to be cool parents?  Want to relive the storied memories of your adolescence?  Want to introduce a new generation to a disgusting green guy named Slimer?  Then who ya gonna call?

Ghostbusters!

Boom baby!  Bill Murray, Harold Ramis and Dan Akroyd to the rescue.

Interestingly, the movie hadn’t been on long before Casey and I began to realize that we had forgotten a few seemingly important (I say important because they were so prominent in the movie) keys to battling ghosts.

As an adult, I now recognize that in order to be a good Ghostbuster, you have to smoke a lot of cigarettes, swear at least once per minute, have dirty dreams (thanks a lot Dan Akroyd, yuck) and include a ton of sexual innuendos in your dialogue.

Boy did they nail the formula for good family fun!

How was it that I hadn’t remembered any of the inappropriate jokes, dialogue or scenes?  Maybe I hadn’t paid close enough attention as a child.  Perhaps I was just too young to know what they were talking about.  Or possibly, I simply didn’t yet posses the capacity to see what was right in front of me.

Don’t get me wrong, Ghostbusters is still a classic; it just isn’t quite what I thought it was with regards to appropriateness for children.  So please, don’t lose the point here by thinking I’m condemning the movie.  I’m not.  What I’m really saying here is that when it comes to judging the situations, circumstances and happenings in front of us, we may need to take a step back in order to really see things for what they are.

For example, sometimes, when we step back to gain a better perspective, we realize that what we have previously perceived to be our most challenging obstacles, are in fact the very factors that have enabled us (through our efforts to overcome them) to become strong.

Another way of saying it is, things aren’t always what they seem.

So, here’s to maintaining a proper perspective, vanquishing our demons and ever being ready to do what we’ve got to do in order to get the job done.

Even if it means crossing our streams (spoiler alert).

Thursday, March 6, 2014

Know thyself



You’ve really got to hand it to the ancient Greeks because when it comes to human nature and the value of understanding our individual capacities, they summed it up nicely with two simple words of advice that created one of the most powerful maxims of all time: “Know thyself.”  Well, thanks to a provocative (not to mention highly sophisticated) television show called The Walking Dead, I have come to do just that.  And what is it that I’ve learned?  That I, my friends, am not cut out for a zombie apocalypse.

It’s a harsh, but true, reality.  So, if you see a zombie coming, don’t count on me to fend it off for you.  I’m just not that guy.

You may be thinking that this newfound revelation should have, given my disability, been obvious to me.  Well, for your information, my not being built to survive a zombie attack has less to do with muscular dystrophy than you might assume.  However, I will give it to you that trying to elude zombies with a dead set of wheelchair batteries could be tricky.  But, in actuality, my real reasons for concluding I wouldn’t make it in zombie-land are as follows:

1. Zombies are gross.  Have you ever watched The Walking Dead?  I’ve tuned in for every episode, which means I’ve seen thousands of zombies in HD and am now considered by everyone in my home named Vance to be an expert on zombies.  And, in my expert opinion, every single zombie is covered in rotted flesh, moldy clothes and walks around with serious hygiene issues.  The word nasty doesn’t even begin to cover it.  No thanks.  I’m not up for dealing with that!  I prefer my zombies to be manicured and well kempt (they may be dead, but they should still have some pride).

2. The stench.  Everyone (living and dead) on that show is so smelly that their disgusting rank actually wafts through the plasma of my big screen television.  No kidding.  I can tell when the show is on because my eyes start watering and my nose tries to run away from my face.  Doesn’t seem like a situation I want to take part in.

3. Lame neighbors/roommates.  During a zombie apocalypse, survival becomes the priority, which means (as seen on the show) that you’re going to end up living with people you wouldn’t otherwise ever want to associate with, let alone bunk up with.  I like my friends and maintain a strict policy against rooming with wack-jobs, psychopaths, homicidal maniacs or annoying people in general.  So, once again, in a zombie episode, I’m out. 


For the record, my admitted inability to thrive in a zombie environment doesn’t make me any less of a man.  If anything it makes me, wise.  So, should you witness a big bang, see a bright flash of light or hear the zombie warning bell ringing, you can spot me right away.  I’ll be the wheelchair dude headed toward the fray.

After all, better to go out quickly than get stuck with the gross, stinky, lame aftermath.

Believe it.  I know myself and that’s the way I roll.


Thursday, February 27, 2014

News flash!



I’ve heard it said that the media has gone off the rails regarding what it chooses to air.  If it bleeds it leads.  In other words, sensationalism and the outrageous tend to win the day when it comes to coverage and attention.  However, in a refreshing twist, our local ABC news affiliate (WJLA) has consciously decided to go another way.

Led by anchors Leon Harris and Alison Starling, our local news reports all of the hard-hitting stories you’d expect in a top-notch broadcast, but then they go one step further.  Instead of focusing on all that’s wrong in the world, they dedicate time in their broadcast to highlight the good, uplifting and encouraging work that members of our community are doing to benefit our schools, neighborhoods, children, etc.

In his weekly segment called “Harris’ Heroes,” Leon Harris spotlights all that is right within our area.  And in so doing, he reminds all who tune in that the world is still a beautiful place.

After hearing about me coaching Sammy’s basketball team, Leon took an interest in our story.  Hoping that others would be inspired by the tale of a disabled father overcoming his physical limitations to coach his six-year-old daughter’s team, he decided to feature us on Harris’ Heroes.

Click here to see our segment.

Our story aired on Wednesday and so far, the response has been tremendous.  In the few hours following the broadcast, I received what seemed like countless emails, texts, phone calls, facebook messages, etc. congratulating me.  More importantly, they expressed that the piece brought them optimism and hope.  Mission accomplished!

I am humbled to be one of Harris’ Heroes and delighted that our tale is resonating with others.  I am equally proud that our local news team stands committed to using its platform to give a voice to all of us in the community who are doing our best to do our part.  And in so doing, they’re proving that, even in a ratings-driven environment, there’s no such thing as a downside to reporting good news.

And that’s worth tuning in for.


Tuesday, February 25, 2014

Eyes wide open


Sunday night was a turning point for me.  For the first time, I articulated a fact that while never spoken, and certainly never fully accepted by me, is still true.  My disease is going to continue weakening my body and it’s not going to stop until it kills me.  It’s a battle that can’t be won and to which there is only one conclusive and indisputable outcome.  My death.

Around the end of high school and on through college, I lived life operating under the belief that the progression of my disease had stopped.  My doctor’s never confirmed that it had plateaued, but they didn’t dismiss the possibility and certainly couldn’t deny that my strength and physical ability hadn’t seemed to diminish much over that period of time.  And so, ignorantly, I chose to believe that while muscular dystrophy had robbed me of my ability to walk, to dress myself and to do a whole host of physical activities, it wasn’t going to rob me of anything else.

But I was wrong.

Since college, my life has been filled with more blessings than I ever deserved.  Namely, I married the love of my life, became a father twice over, enjoyed some professional success and bought a house.  Not too shabby.  However, physically, that same period of time has been filled with numerous surgeries, severe loss of lung capacity, significant weakening of my body, a yearlong bout on bed rest and the overall challenge of trying to figure out how to live with less strength and ability.  It reminds me of the classic line: It was the best of times, it was the worst of times.

Only now I know there’s more to come.

We all love a good underdog story.  And so far, mine has been nothing short of incredible.  I’m the son of an immigrant, was diagnosed with a neuromuscular disease during childhood and was raised in a broken home.  Along the way, I shattered barriers, completed my educational, familial and professional goals.  All that and I usually have a smile on my face, a joke to tell and an appreciation for how good things are.

But as it turns out, great stories don’t always end the way we want them to.

There is a spectrum of physical wellness on which I have, and continue, to live my life.  The problem for me is that every day I inch closer and closer to the wrong end of that spectrum.  It cannot be helped.  It simply is what it is.  The real issue though is that there is a certain point along that spectrum, which, when reached, is the tipping point when I will transition from living life to simply being alive.  When I reach that point, I will very much be like a person stuck on life support.  I’ll be here, but I won’t really be me anymore.  And though I’m not afraid of dying, the thought of “living” like that is terrifying.

And so it is that I have to live right now.  I have to pour whatever strength I have left into making my mark.  I need to do all I can to create a lifetime worth of memories, stories and happiness for Casey, Isabelle and Sammy to hold on to after I’m literally or figuratively gone.  I need them to know how much I love, treasure and adore them.  I need to show them and make them understand how, because of all they have given me, my life has had true value.

I need to get in front of as many people as possible, impact lives and inspire others to have more joy.  I need to be a better person and be more sincere.

I’ve gotta be me.

Now, please don’t interpret this post as me checking out.  This is not my swan song.  In fact, my plan is to live as full and long of a life as possible.  This post is just the acknowledgement of my recognition that the window of opportunity for me to truly live is limited and closing faster than I’d like it to.

I’m 36 years old and I’m dying.  I know that now.  And even though I don’t like it, it’s going to be ok.

Maybe the good guy doesn’t always win, but that doesn’t make the story any less remarkable.


Wednesday, February 19, 2014

The importance of a win

I’m a little embarrassed to admit it, but when we recently won our first basketball game, I was so happy I felt like I was going to jump out of my wheelchair.  It may seem silly to have been filled with so much excitement, after all these kids are in first and second grade so it’s not like it was the NBA championship, but I couldn’t help it, I was so stoked!

In thinking about it, I realized that the happiness that came from that win had to do with a few things.  First, I was delighted for the team.  Our girls have worked so hard all season and while they’re improvement has been nothing short of amazing, that first win had eluded us for a long time.  They’ve poured their hearts into each game and they absolutely deserved to experience the thrill of winning.  And when they did, I was so ecstatic for them that I couldn’t stop smiling.

I think another reason why the win meant so much to me is because I’ve been going through a bit or a challenging time lately.  And sometimes, when you feel like you’re really in the thick of it, a win, any win, goes a long way.

When things aren’t going so well, it’s easy to feel like the world is against you.  You miss a traffic light, you discover you’ve run out of your favorite snack after the grocery store has closed for the night and the DVR programming messes up and records the wrong show.  They’re minor things, but when you’re struggling to keep it together, it all feels like a big deal.

And so, we find ourselves looking for something to break our way.

I’m not sure that any of us truly understands why it is that we’re “chosen” to go through whatever it is we’re dealing with, which can make things particularly hard.  As humans, we want to know and understand why things do or don’t happen.  Turns out though, it isn’t always ours to understand.  Great.

So where do we go from here?  What do we do?

Although it flies in the face of all that is logical and makes sense, we must never give up.  We’re allowed to get down, but we can’t allow ourselves to stay there.  Like the girls on my team, we need to do our best even when we’re losing and then keep going.

Eventually, our win will come.

No one can definitively say how things will or will not work out, but I’m going to do my best to keep pressing forward and I hope you do too.  Maybe we’ll get there together.