Rolling Perspective

Winning Hearts and Minds

2012-03-06T20:08:00.000-05:00

Ever feel like the dimmest bulb in the chandelier? Well, try sitting in the back row of anauditorium filled with world-renowned medical physicians and researchers (seriously, when it comes brain-power the MDAbrought the thunder to their 2012 Clinical Conference). Not to say that I’m not a smart guy,but these people like to unwind by deciphering triplicate genetic code (where were these geniuses when I needed abiology tutor in college?).

Throughout the day, I heard about all kinds of neat andinteresting findings regarding the latest and greatest efforts to fightneuromuscular diseases at the genetic level. I learned the ABC’s of genetics, everything I ever wanted toknow about gene mutations and what’s all the rage regarding gene therapies (exciting stuff, right?). I also learned about cardiac disorders(which is of personal relevance to me)and pulmonary therapies (also of personalimportance to me).

While the information presented was impressive (downright amazing really), I was actuallystruck more by something I learned today outside of the realm of research. I learned it as, one-by-one, presentersgot up and delivered their remarks with something I did not expect; passion,enthusiasm and an outright dedication to the overall cause of eradicatingdiseases like Muscular Dystrophy. Putsimple, these brainiacs take the business of saving lives very personally. Outstanding!

Before today, the images I most often associated with MDA’sresearchers were limited to lab coats, beakers and microscopes. After today, additional images come tomind; committed, emotionally invested and caring individuals who have dedicatedtheir immense talents and capabilities to serving millions of people like me.

To win any major conflict (make no mistake about it, conquering neuromuscular disease is a veryreal fight) the winner must bring more to the table than superior firepower(or brainpower as is the case here). Indeed, history tells us that to bevictorious on the field of battle you must win hearts and minds. In my wheelchair-bound world, thatmeans having researchers who posses the intellectual capacity to tackleneuromuscular disease AND the emotional capacity to be intrinsically vested onbehalf of the lives they hope to impact.

To that end the MDA is proving both in word and deed (aka funding) that it’s in it to win it. And that’s something we can (and should) all understand.

Vegas Baby, Vegas!

2012-03-05T20:25:00.000-05:00

When most people think of Las Vegas, attending a medicalconference isn't exactly what comes to mind (I guess most people just aren’t into white smocks). However, this week I'm in “sin city” (along with my lovely wife) for theexpress purpose of attending the MuscularDystrophy Association's 2012 Clinical Conference. It may not be the hottest thing on the strip, but bringingtogether 650 of the world's greatest neurologists, cardiologists andpulmonologists to advance the treatment and eradication of neuromusculardiseases is its own kind of sexy.

My role at the conference will be to serve as the eyes andears of the patient community (somebody’sgotta keep all those doctors in check). In attending the sessions, I hope to gain a betterunderstanding of the work and progress being made by the clinicians who serveon the front-line in the war against neuromuscular diseases. In addressing participants (which I will do on Tuesday), I hope toexpand their horizons regarding the capabilities, achievements and aspirationsof the populations they serve.

I will be blogging daily about my experiences.

To better prepare for the conference, I spent some timereviewing the agenda and thinking about what the week has in store. Here are my initial reactions:

Nerdalert! Heaven only knows howmany combined years of postgraduate education will be gathered together at the conference,but with sessions on exhilarating topics like: Genetics and NeuromuscularDiseases; Immunology; and Targeted Therapies – they’re going to need all thebrain power they can muster to keep up with the conversation!

MDA’scommitment to excellence. Thelevel of effort required to put together a conference like this is huge. The scope and scale of the event isprofound and the outcomes will impact countless lives. This conference underscores MDA’s coremission and highlights the association’s high standards.

Transparency. In a day when far too manyorganizations conduct their programs in a vacuum, the MDA is making activestrides to share its work with others (hencemy blogging on their public website). Being open and honest keeps you (andthe rest of the world) “in the loop” while providing the opportunity tooffer feedback and engagement through an open dialogue.

With all this (andmore) to look forward to – you can bet that what happens in Vegas thisweek, won’t stay there. And thatmakes us all big winners.

A Picture is Worth a Thousand Words

2012-02-29T19:42:00.000-05:00

I'll be flying to Las Vegas with Casey toattend the Muscular Dystrophy Association's 2012 Clinical Conference (sounds like crazy good times right!) this weekend. On Tuesday, yours truly will take the stage to address the 650 neurologists, pulmonologists and cardiologists that will be present (is there a doctor in the house!).

While I’m speaking, the folks at the MDA will be showing photos of me on big screens throughout the room (presumably to keep people awake). To ensure they had some good pics, theorganizers asked me to submit some of my family favorites. Though not all of them will beused, here (see below) is the batch I sent them.

It may not be my longest blog post, but after "looking" it over; I can't help but feel it's one of my best!

Continuing Education

2012-02-26T21:12:00.000-05:00

On what otherwise has been an average Sunday, I learned to interestingthings today (and since they say youlearn something new every day, I figure that having learned two things puts meahead of the daily quota). Withthat said, let me impart my newfound knowledge with you.

The first thing I learned is that when it comes to paintingand touching up fingernails, I'm the man! (maybenot the most important life lesson, but interesting nonetheless). I want to thank Sammy for helping mecome to this knowledge. After all,it wasn’t until she came up to me with fingernail polish all over her hands andsaid “I painted my own nails!” that the learning took place.

While I wasn't thrilled about her declaration, I didn't freakout because I figured it was nothing that Casey couldn't handle. Using that logic, I did what all smartfathers would do; I said “go show your mother.” However, Casey it seems had a different approach to “fixing”things. Rather than tackling thisissue herself, she told Sammy to get her fingernail polish bag and give it tome because “Daddy is going to take care of it.”

That’s when I wanted to freak out!

Sammy and Isabelle were taken aback. Their response was as sweet (and surprising) as it was comical. Looking at me, then back to Casey Iheard them say “Daddy can't do it, not from a wheelchair!” While I appreciated them trying (even though it was inadvertently) to getme off the hook, I knew what had to be done. With determination and confidence,I looked at them and said “bring me the bag.”

For the record, I wielded that nail polish remover, Q-tipand plush pink nail polish like Harry Potter wields a wand. By the time I was done, Sammy lookedlike she had come straight from the salon (Imay be exaggerating a bit, but those nails were looking pretty darn good).

Turns out I can paint nails like Picasso, who knew?

The second thing I learned today is that my children arepart monkey. I used to think thatthe way they climbed on the couch was just normal kid stuff, but today theyeach scaled the kitchen doorframe.

Sammy got about halfway up before getting a little nervousand jumping down. Isabelle actually scales to the top of the doorframe, touchesher head to the top and then jumps down. I broke out the video camera for your viewing pleasure.

I'd like to take some of the credit for their amazingclimbing skills, but something tells me they didn't get it from me (perhaps Casey has been hiding her status asa rock star climber from me). Either way, it was fun to watch.

So there you have it; I'm a natural with fingernail polishand my children are miniature versions of Spiderman. Lord knows what I'll learn tomorrow.

Can't wait to find out!

Resilience and a Smile

2012-02-23T21:29:00.001-05:00

From time to time, I’m asked how it is that I can maintain apositive attitude in spite of being in a wheelchair. It’s not a rude question (how could I be offended by being told I’m a positive person?). In fact, I take it as a compliment.

The answer comes down to one word: Resilience.

In the world of homeland security (where I make my living), resilience has manymeanings. Most often it refers tothe ability of a system or an asset to recover quickly and efficiently aftergoing down. Resilience is important because in homeland security (and in every day life) you may not be ableto prevent things from hitting the proverbial fan, but you can put processesand procedures (aka preparedness) inplace to ensure you can respond and recover efficiently and effectively from disasters(and or challenges). In my personal life, resilience has madeall the difference.

Despite the challenges that have come my way (be they physical or otherwise); I havelearned to respond and recover. Perhapseven more importantly, I have learned to do so with a smile on my face (at least most of the time).

I know hardship, but so does everyone. We all face adversity; each of us hasour own hurdles to overcome. Regardless of my obstacles, I’m happy.

Whenever I've been down, my friends and family have been rightthere to pick me up. Whether itwas Bryce, Bruno or Aaron leaving their families to spend the night with me whenI was sick at the hospital; Randy taking me under his wing and become a fatherto me or watching John Cena body slam Triple H ringside with Justin – I've beenblessed with more than I have any right to have even hoped to of received.

What’s more, I’ve been able to wake up every morning for thepast 8 years next to an angel. Howcould life get any better? Try tossing intwo beautiful daughters!

Still wonder why I’m smiling?

Finding Your "Voice"

2012-02-21T22:34:00.000-05:00

When it comes to watching TV, my kids and I share a fewguilty pleasures: Celebrity Apprentice (saywhat you will, but ‘the Donald’ knows how to entertain); America’s GotTalent (though with the addition ofHoward Stern, I’m not sure how kid friendly next season will be); and TheVoice (it’s got spinning chairs andChristina Aguilera, what’s not to love!).

While Casey is usually all too happy to be “busy” wheneverwe fire up the DVR (she doesn’t share ourpassion for the Donald, Sharon Osbourne or spinning chairs), we roped herinto watching The Voice last Friday under the guise of our weekly ‘Family FunNight’ (boy was she excited!). Despite her initial reservations, weall had a great time (good snacks andgood TV, a winning combination).

Something I’ve enjoyed more than watching the show iswatching the girls during the show because they really love cheering for thecontestants and the judges (all of themexcept Blake Shelton, not sure why, but the proof is below). It’s also neat to see them begin torecognize what constitutes a good performance.

During the show, I encourage the girls to note how muchbetter contestants do when they perform with confidence vs. when they shrink onstage. Then I ask them to likenthe lesson to their own lives: They can (andshould) be confident in their own talents and abilities.

I recently served as a panelist for a webinar sponsored bythe Muscular Dystrophy Association on “Dating” (apparently conning Casey into marrying me makes me an expert on thesubject). Over and over, theanswers and advice given to participants (singleyoung adults from the neuromuscular community) in response to theirconcerns about dating with a disability centered on a single theme: Confidence.

All of us (disabledand non-disabled) have insecurities, experience self doubt and are temptedto feel we are less in some way(s) than others. The key to our personal success however, is in consciouslydeciding to cast our feelings of inadequacy aside in order to embrace (and confidently share) our personalgifts with others.

It’s my hope that my daughters (and each of us for that matter) will take to the center stage oflife with confidence in the knowledge that they are bright, capable andloving. In doing so, they willfind their true voice.

Now that’s worth tuning into.

We Are the 25%

2012-02-02T21:47:00.001-05:00

I spent a decent portion of the week wondering if we’recursed. The proverbial “other”shoe has dropped. Our good timeshave ceased to roll. Our fortuneshave turned. At least that’s whatit has felt like over the past few days.

First I got the Shingles. Then I got Vertigo. Wouldn’t you know, two days later I lost my voice (though some would argue that was a good thing). I’m thinking of changing my name to Jobor just waiting for the Locusts to come! As if that weren’t enough (and Itend to feel it is), Isabelle developed some itchy red spots. Hello Chicken Pox!

I know what you’re thinking: Chicken Pox? Surely this could not be. After all, both girls have beenvaccinated for Chicken Pox (I knowbecause I was emotionally scarred by the process of watching their tear-filledeyes look to me for help when that meanie pediatrician stabbed them with theshot). Well, as it turns out,25% of people vaccinated still get it (whatthe what!). Looks like Imanaged to pass Isabelle my genetic gift for beating the odds of gettingstatistically difficult medical ailments (whata legacy, lol. Too bad I can’ttransfer my “gift” to win the Powerball).

Thankfully, because she had the vaccine, she only has a mildcase of the Chicken Pox. Shehasn’t been too itchy, doesn’t have a lot of spots and never developed afever. After being quarantined athome for the week, she’s got the ‘all clear’ from our doctor to return toschool next week (good thing, the poorkid has been eager to see her friends).

So it has been a rough go, but I think we’re going to makeit. I’m nearly back to my sexy (subject to interpretation) Shingle-freeself, my head has finally stopped spinning and my voice is making a nicecomeback. All that and Isabelle ispretty much healed up – not too shabby. It seems there is a light at the end of this tunnel.

At least that was my thinking right up to when I got to thedinner table tonight and found Sammy sporting a runny nose. Are you kidding me??????

Watch out for the Locusts people...

Vertigo Vancey

2012-01-29T20:59:00.000-05:00

It happens to all of us from time-to-time; everything’sgoing great and then... Wham! Something happens (often out ofnowhere) and our world spins out of control.

Last Thursday started out normal enough. Casey woke me up and transferred me intomy wheelchair so I could get ready for work. That’s when it happened; somewhere between my pillow and mywheelchair, I got hit with a dizzy bomb (itfelt like a head-rush on steroids).

Logically, I knew the room wasn’t spinning (not that logic has much to do with what wefeel), but try as I might, I couldn’t call things into focus. What’s more, I started feelingnauseated (it was like coming off marathonride on the teacups).

Once I got my bearings, I knew I was in bad shape becauseevery time I turned my head I got dizzy again. To avoid the embarrassment of crashing into walls at theoffice (any more than the usual) and tokeep from losing my lunch, I decided to pack it in for the day. I got back into bed, waited for thedizziness that ensued to wear off and rested. While I was zonked out, Casey had the wherewithal toinvestigate the actual cause of my newfound loss of orientation (further proof that she’s the brains of theoperation).

As it turns out, both of the medicines I was prescribed formy bout with the Shingles (the gift thatkeeps on giving) can cause vertigo (nothinglike a double dose of vertigo!).

I’m happy to report that I’ve finished my antiviral andscaled back on my painkiller (I’m toughlike that). The result? The vertigo has been dissipating (good thing too, there’s only so many times thehomeowner’s insurance will let you file claims for wheelchair-related damages tothe hallway before raising the premium).

So there it is. One minute you’re fine; the next everything is out of control. And then (sometimes before you can even make sense of it all) things areright side up again. I suppose it’sjust one more reason why, when hit with life’s challenges, it’s worth hanging inthere – so we can see things through to the other side.

It’s almost enough to make your head spin...

Yucky, Grody, Icky and Painful!

2012-01-24T12:20:00.000-05:00

I’ve got Shingles!

Would that I was talking about my roof, but I’m not (truth be told I’m not great in the manuallabor department). No, I’mtalking about the kind of Shingles typically reserved for old people (that is to say our wise and respected elders). I’m 34, not 64 (turns out, being ahead of the curb isn’t always a good thing)!

Here’s what you need to know about Shingles – theysuck! What began as an annoyingpain on my lower right ribs turned into a terrible (and hugely inconvenient) pain. At first, I thought I had pulled muscles in my ribs (I’ve been hitting the gym pretty hard lately). But when 2:00am rolled around and Ifound myself shaking because it hurt so bad, I ruled that out.

The next day, Casey noticed that I had a rash. Interestingly enough, it covered theexact area where my ribs (and now my backtoo) were hurting. After aquick trip to the dermatologist, we had a confirmed diagnosis of Shingles (doh!).

So, here is Shingles 101:

You only get it if you’ve had Chicken Pox (which I’d take over this any day of theweek. They didn’t hurt, I got toskip school and mom hooked me up with awesome snacks – Shingles just hurts alot and looks nasty.)

It’s not contagious. The only thing you can catch from someone with Shingles isChicken Pox (assuming you’ve never had it). Even then, you’d have to physicallyrub/touch my actual Shingles (that wouldhurt me and be gross for you, please keep your hands to yourself.)

It looks gnarly. (enough said)

As has been already addressed, it hurts – a lot(it’s like the guy on Oz who shanks thesnitch... and you’re the snitch!)

So, why spend an entire post talking about my epic battlewith old people’s ailment? Becausewhen it comes to my Rolling Perspective, you get to read about the good, thebad and the ugly (this absolutely fallsunder the latter). That, andbecause I think it’s important to point out that life isn’t always fair – andthat’s OK.

It’s not fair that a young(ish) guy gets an old person’ssickness; that someone whom one could say already has their fair share ofphysical challenges gets to add Shingles to the mix; and it’s certainly notfair that I’ve lost so much badly needed beauty sleep due to the pain in myside.

While none of these things are fair, they are what they areand my current reality is what it is. I can waste my time being upset about my Shingle-related circumstancesor I can make the best out of what I’ve got. My family loves me, I love my job and I’m well enough tokeep going – what else is there?

Shingles may be doing a good job of messing with me, but itwon’t get the best of me. And afew weeks from now, after the pain has disappeared and the rash has faded, thestrength and lessons I’ve gained from this experience will remain with me.

Now that’s something to blog about!

Book Cart Daddy!

2012-01-16T15:04:00.003-05:00

We took the girls to get their very own library cards (you’d have thought we gave them each a pony)a few weeks ago and arrived in time to take advantage of the monthly book sale(as usual, timing is everything). I like a good deal and the kids lovegetting books, it was a match made in heaven.

Before long, I was surrounded by stacks of books (the number of ways the girls find to trap meis astounding). When I askedhow exactly it was they were planning to transport these treasures, Sammy pipedin with the solution – “Book cart Daddy!” (I’vebeen called a lot of things in my day, but “book cart” was a new one).

In case there’s any question of how a Daddy book cart works,I’ll break it down for you: Youfollow your kids around patiently while they pile books on your lap. When the books reach your chin, you getto roll them to the car. Throughoutthe process, you get to hear your children hurry you along by saying (in a not-so-library-quite voice), “c’mon book cart Daddy, c’mon” while yourfellow library patrons try not to crack up laughing.

The girls got their library cards (Casey and I got our too!), all had a good time and we’re enjoying ournew literary acquisitions (those Berenstain Bears have me on theedge of my seat). Indeed,despite hitting a pothole in the parking lot (don’t judge my driving, my vision was impaired by books) Daddy bookcart fulfilled his mission nearly flawlessly.

Our goal for the day was to help fuel a love of learning bykeeping the girls pumped up about reading. Truth be told though (andas usually tends to be the case), we probably learned more from interactingwith them than they learned from us.

When you’re a child, you see life without limits. A wheelchair isn’t a roadblock – it’san opportunity. It means freerides, having a moving stepping stool to climb on and never having to look farfor a way to transport books. Allthat AND it provides Daddy with aspot to sit!

Let us all remember to see life as the limitless opportunitywe once did. Our days will be moresatisfying, our burdens will feel lighter and our smiles will come quicker and withmore frequency.

Now that’s a lesson worth hauling some books around tolearn.

Help Wanted

2012-01-05T21:15:00.002-05:00

I’m often surprised by how tuned in the kids are regardingmy disability. A few years ago we drove to North Carolina for a week at abeach house (it was awesome). After six hours of listening to them squirm with excitement, we finallyarrived. Their first words? “Oh no! There’s no elevator forDaddy to get in!” (they couldn’t see itfrom the front of the house). What sweet girls!

I’m currently in the process of interviewing potential careattendants and last weekend I met with several applicants in what felt like amarathon meet-and-greet. Halfway through the interviews, somethinginteresting happened – without saying a word, the girls saddled up next to mywheelchair (each sitting in their tinychild-sized chair next to me) to ‘help’ me interview the applicants. At the end of each interview, they evaluated the candidate by saying thingslike: “Hire her, she looks strong” and “We like her, she’s pretty” (that last comment led to a good teachingmoment about fair and equitable hiring practices, lol).

Around mid-day the girls left the room and then reentered itwith an announcement: They were no longer my daughters, they were sisters (one from Idaho, the other from Florida)who had learned about the care attendant position on Facebook and wanted aninterview.

I penciled them in and Casey videoed it on my iPhone. Here’s how it went down (the sound is a little low so you may want to turn up the volume on your speakers):

They seem to be highly qualified and enthusiastic (not to mention they work cheap!). Boy, am I in luck!

I’m not sure that any of their friends play “care attendantinterview” with their Daddy, but my girls sure loved it.

It’s hard to express what their thoughtfulness means to me,particularly when it comes to the way they address my physical limitations andunique needs. Sometimes it's easy to feel insecure about being a disabledfather, but the joy that comes from knowing that my girls accept me withoutreservation trumps any sense of inadequacy and has a very real healingpower. They don’t see me as disabled; they see me as Daddy.

And that my friends, is the best help of all.

Six Resolutions for a Great 2012

2012-01-02T15:44:00.000-05:00

I never want to be the guy whose ‘best days’ are behind him(what can I say, I’m a firm believer in continuedforward progress). Sure mylife has been a whirlwind, with ups and downs and all, but despite therollercoaster of emotions, experiences and happenings; it’s always moved alongan upward trajectory (amazing, but true).

As the New Year kicks off, I (like so many of you) am making resolutions to help me become abetter person and get even more from life. Some are light, others are more serious – all are real.

With all that said, below are my resolutions for 2012:

1. Eat someveggies (yuck!). I love my wife, my kids and life ingeneral too much to check out early because I wasn’t willing to choke down somedisgusting veggies (for the record, atthis point in my life all veggies fall under the category of disgusting). It’s probably going to require a teameffort (Isabelle can plug my nose asCasey shoves broccoli down my throat and Sammy comforts me between bites),but I’m committed!

2. Oustingthe hypocrisy. Anyone can talka good game, but only champions walk the walk. To the extent that I can, I am checking my hypocrisy at thedoor in 2012 and am resolved to doing my very best to walk-the-walk (err...roll the roll?).

3. Lay offthe corn nuts. Between thisone and the veggies, I may live to be 100 years old! Sure they're delicious, but between the high sodium contentand the fact that they don’t exactly give me minty fresh breath (not to mention the bubble guts) – I needto cut back on this tasty treat. It’s a sad day friends.

4. Leave noVitamin Water behind. VitaminWaters (as refreshing and wonderfullyhydrating as they are) are expensive. That I leave half drunken bottles throughout the house drivesCasey crazy (not in a good way). Not too worry though, 2012 promises tobe the year of the empty Vitamin Water bottle in our house (I'll bet that what every wife dreams of forthe new year).

5. Lead byexample. I firmly believe thatpeople learn more by watching us than they do by just listening to us. I cannot, for example, simply tell mygirls to be more loving towards one another and expect them to do so. I must first be willing to set theexample of how to display love by showing them more patience and affection. The principle is applicable to allfacets of life.

6. Laugh itup more. If laughter reallyis the best medicine, I’m going to do it more this year. Be it at Rick Perry during future debates, the random jockwearing a T-shirt from the Baby Gap or at the Dallas Cowboys when they chokeduring high pressure games – I’m going to laugh it up more in 2012 then I everhave before (maybe I should change thisone to "be more sarcastic" – as if that were possible). While I don’t actually plan on mockingothers (any more than usual), I amgoing to try harder to maintain a proper perspective on life and in so doing; Iplan to laugh a lot!

Here’s to the next best year of our lives!

I'm a 'Belieber'

2011-12-29T21:41:00.002-05:00

Kids and technology, what a trip! My girls (mind youthey are just six and four respectively) can load DVDs, cue up my PS3,operate my wheelchair charger and surf the PBS Kids website like champs – allof which I find pretty impressive. They can also navigate our iPhones with a familiarity and ease thatmakes me wonder if they didn’t maybe have one with them in the womb.

We’ve done the whole “stop downloading apps!” thing (thank goodness they haven’t hacked thepassword protection we have to use now), covered the “no videoing Daddy whilehe’s zonked out and drooling on his pillow” bit (I can’t prove it, but I strongly suspect Casey was behind that one)and exhausted ourselves getting them to stop hitting “Ignore” on incoming callsbecause they don’t like being interrupted by family/friends while playing AngryBirds. And yet, despite all theiriPhone know-how, they never use the device to listen to music – until now...

There go the good old days!

Sadly, out of the zillions of songs we’ve downloaded throughthe years, my daughters managed to pass over greats like Michael Jackson, Tupac– edited of course, the Beatles and Barry Manilow (so much for the classics). Instead, they landed on one Justin Beiber.

Seriously.

Visitors beware – there is a bad case of Beiber-fever in myhome right now. What’s crazy isthat it isn’t enough to hear “Baby, baby, baby” three times in a row. Nope. Once the fever takes hold, you’ve got to loop that track onendless repeat and rock out until you drop (oruntil Daddy cracks).

Forget that his songs have been played to death, forget thatmy facial hair is older than he is and forget how insane it is that such youngchildren have become actual fanatics – the real problem is that theBeiber-fever is contagious!

Lately I’ve found myself humming Justin Beiber songs duringmy commute, between meetings and during meals (what’s happening to me?). At first I was bothered, embarrassed and maybe even a little frightenedby this phenomena – then I realized this was the coolest thing ever! Not because of Justin Beiber, butbecause it gave me a chance to connect with my girls.

Think about it. How many times in life are the three of us going to be rocking out tothe same “cool” music? How manytimes will they think I’m hip/down/righteous? Carpe diem my friends – in life we have to seize the day.

And so it is that Daddy is a musical genius (for now) and a cool guy too! Now that’s worth singing about (even if it is to a Justin Beiber song)!

I doubt I’ll always be the biggest fan of their musicalselections, but when it comes to the importance of leveraging opportunities tohave fun with my girls and spending quality time together; I’m all in.

I guess that makes me a ‘Belieber.’

An Updated Holiday Classic

2011-12-24T21:28:00.000-05:00

Twas the night before Christmas, when all through the housenot a creature was stirring (except arat-dog named Nubbins who has a bladder the size of a walnut), not even amouse (though ‘Cheese’is out there somewhere...).

The stockings were hung by the chimney with care (thanks to my talented sweetie) in hopesthat St. Nicholas soon would be there (mentalnote: don’t forget to set the ‘Santa’ alarm).

The children were nestled all snug in their beds (under the threat that it’s not too late forSanta to turn his sleigh around...) and mama and I had just settled in fora long (yeah right) winter’s nap (must set alarm, must set alarm, must setalarm).

When out on the roof there arose such a clatter (if it’s another one of our next doorneighbor’s trees, I’m buying him a chainsaw for Christmas), I sprang frommy bed (I haven’t sprung from a bed since1985!) to see what was the matter (seriously,it’s windy outside, if his tree busts up my roof/shed/garage again...).

When what to my wondering eyes should appear, but aminiature sleigh and eight tiny reindeer (orCasey in her pajamas). His (her) eyes—how they twinkle (she really is quite stunning)! And judging by how many cookies Caseyhas in the oven right now – my round belly (possiblesubject of a New Year’s resolution) is bound to bounce like a bowl full ofjelly.

He spoke not a word, but went straight to his work (i.e. I’ll be headed straight for the milkand cookies) and filled all the stockings (Casey’s mom is Australian, so we fill pillow cases instead of stockings– foreigners, lol) – then turned with a jerk (probably to let Nubbins out again).

He sprang to his sleigh (bed),to his team (spouse) gave a whistle (holiday smooch), and flew away like athistle (zonked out). But I heard him exclaim, 'ere he droveout (drifted off) of sight...

"Happy Christmas to all, and to all a good night!"

The Nightmare Begins

2011-12-22T22:12:00.000-05:00

Future family photo?

A few months ago I took Casey and the girls to a baseballgame (courtesy of my hero Chris Battle). To make it a real party, we brought ourfriends Ed and Laurie and Ed’s three children Alyssa, Grant and Luke. I had no way of knowing it then, but mylife was about to change forever.

Everything started out fine. We found cheap parking, the seats were great and theNationals were actually winning (a truerarity). A while later, mystomach growled and I hit the food court – so far so good.

Upon buying out the food court (turns out I wasn’t the only hungry one in our group), I broughtback hotdogs for the girls. Isabelle was happy with a plain dog (yuck),but Sammy wanted ketchup on hers. Notto worry, Ed’s 11-year-old son Grant, like a wolf in sheep’s clothing (you’ll understand in a moment), stoppedeating (a major feat for a prepubescentboy) and got her some.

You should have seen Sammy’s eyes light up when he came backwith that ketchup (you would have thoughthe’d brought her back a unicorn).

Two innings later, Sammy wanted French fries. In swooped Grant to share his (what kind of a punk kid does that?). She looked up at him and beamed (you would have thought he’d slain a dragonfor her).

For the rest of the game Sammy was all smiles.

On the car ride home Sammy said, “Daddy, I have something totell you, but I don’t want you to be mad.” I reassured her that she could tell me anything. “I love Grant, he’s so cute!”

My nightmare had officially begun.

Is that not the face of pure trouble!

That was in September and she’s still all about Grant (whom I must now view as ‘the enemy’, despite having no clue that mydaughter has a crush on him. It’s too badbecause he is quite possibly the most well adjusted and kind boy on the planet)!

This morning while eating Fruit Loops Sammy said “Daddy, when Grantand I get married you can come over to our house for dinner. Only since we might have stairs, youshould bring your long ramps.”

Now they’re getting married and living in non-wheelchair accessiblehousing! This is horrible!!!

I was supposed to have years and years ahead of me before Ihad to deal with this scenario. Andyet, here I am – my four-year-old is in love with an 11-year-old who stillthinks girls are gross (the irony is prettythick).

Turns out Ferris Bueller really did get it right when he said: “Life moves pretty fast. If you don't stop and look aroundonce in a while, you could miss it.”

Yesterday my baby girl was crawling, today she has a“boyfriend.” Heaven only knowswhat tomorrow will bring – but as I think about the closing of this year andthe opening of the next, I cannot tell you how excited I am to find out!

Life, even with all of its joys and heartaches (and everything in between) really isbeautiful. Were it not so, itwould be impossible for something so sweet (andfunny) to come from something so simple as ketchup and fries.

Borrowed Muscle

2011-12-19T21:00:00.003-05:00

There are certain moments that every father should lookforward to – seeing baby’s first steps, terrifying would-be boyfriends (the only thing I’m looking forward to whenmy daughters begin dating) and ‘take your daughter to work day’ are just afew. Each is memorable and helpsbuild the ever-important Daddy/daughter relationship.

But what happens when you’re in a wheelchair and it comestime to add teaching your daughter to ride her bike without training wheels tothe list? Well, you phone up thebest relief pitcher on the roster and pray for a save (thankfully, ‘Team Taylor’ has a deep bench!).

Enter Lish...

Though not biologically related, Lish (great guy, great name) couldn’t be more of a brother to me than ifwe’d come from the same womb. Sowhen Lish, his beautiful bride Whitney (don’teven ask me how he got her to say “yes” to marriage) and their bouncingbaby boy Yale (so adorable) recentlycame to visit us I knew what needed to be done.

We broke out a wrench, grabbed Isabelle’s bike and got towork!

5 minutes later, Lish was running alongside Isabelle,helping her balance by holding on to her seat. Less then 30 minutes later, Lish was winded and dying, butIsabelle was riding down the street on her own! While she didn’t quite have it down pat, my baby girl waspretty much there – she had arrived!

As happy as I was seeing Lish teach Isabelle, handing overthe reigns was tough for me to do. Casey and I have always worked hard to find creative ways to bypass orovercome my disability in order to engage with the girls, but on this one therejust wasn’t a way (I thought about tying herbike to my wheelchair, but figured dragging my kid and her pink bike throughthe neighborhood probably wasn’t going to win me father-of-the-year – so muchfor good intentions).

I suppose none of us can always be what we want to be forour children, but this experience taught me that we can each be what our kidsneed us to be. Isabelle didn’tneed me to hold her seat orkeep her bike steady; she needed me to make sure that she learned how to ride abike. And though it meantswallowing some pride (and letting go abit more then I wanted too), we accomplished what we had set out to do.

Aside from the sheer pride I felt in Isabelle, the experiencealso helped me better appreciate how richly blessed I am to have a brother Ican count on and trust to serve as my physical proxy during times when I canprovide the emotional/moral support my kids need, but need help meeting thephysical demands of the job.

It’s good to have borrowed muscle on tap (especially when it comes time to do some boyfriendbutt-kicking!). Hmmm... Maybe I’ll get Lish a gym pass for Christmas.

Introducing... Me!

2011-12-07T21:29:00.001-05:00

Going Hollywood

2011-12-04T21:14:00.000-05:00

What do you call a stranger who gives you four free tickets (complete with parking passes) to watch the Washington Redskins beat the Cleveland Browns 14-11 in a nationally televised game? In this case: “Hollywood.”

For the record, “Hollywood” is the actual nickname of an actual person. In other words, Hollywood is real (thank goodness too). In fact, he’s more than real – he’s the real deal. I know because over the last three-years I’ve had the privilege of getting to know him as a professional and as a friend.

I started calling him Hollywood because he’s right out of central casting. With hair like a silver fox, teeth like Mitt Romney, a smile like Tom Cruise and an uncanny resemblance to Harrison Ford, the nickname Hollywood just seems to fit.

Need a table at The Palm on short notice? One call to Hollywood and you’ll have a corner spot in 15-minutes. Want to impress a big-wig client, take them to Capitol Grille and have the maître d open Hollywood’s wine locker for you – its listed under the name “Indiana Jones” (go figure). He even added root beer for me! Care to take in a show at the Kennedy Center? No problem, Hollywood’s got friends there too.

In fact, Hollywood has friends just about everywhere.

With a moniker like Hollywood and an all access pass to any place in the greater D.C. Area worth visiting, you’d think Hollywood would be about as full of himself as Kanye West accepting a Grammy. But you’d be wrong.

For all his connections and juice in this town, Hollywood could care less about the glitz and glam. His true interest lies in the individual(s) he can use his pull/clout to help. And THAT is what separates him from the pack.

So when he told me that he was moving to Connecticut to be Vice President of Business Development for a major firm, I took the news as bitter sweet.

Hollywood sent me and my buddies to that Redskins game, gave Casey and Isabelle tickets to see “Mary Poppins” (she still talks about it) and introduced me to the joys of being a “foodie,” but that’s not why I’ll miss my friend.

When I found out about my heart condition, he was there to listen. When I wanted to write a book, start a blog and become a motivational speaker, he was there to tell me I could do it. In fact, over the past three years, whenever I’ve needed advice on anything from fatherhood to marriage or client relationships Hollywood has been there to support me, advise me and keep me on track – and that is why I’ll miss him.

I’m not sure how this tale ends (I suppose in life, we never know), but the storyline sure is a good one. Two friends separated by geography, close in spirit, each trying to make the most of life and working hard not to lose sight of what’s important.

Then again, maybe it’s more like “Twins” (though that means I run the risk of being Danny Devito...) or “Lethal Weapon” (though we’re not cops...) or a sort of a “West Wing” drama (we do work in politics...). Either way it’ll be worth watching.

Guess that mean I’m going Hollywood. Who knew that could be such a wonderful thing!

Slaying Daddy's Demons One Mile at a Time

2011-11-17T21:53:00.000-05:00

I haven’t been able to walk since 1990. Haven’t run, jumped, skipped or taken a single step in over 21-years (I never realized that until just now, wow). And yet, despite my many years of physical dormancy, I can think back on my childhood with ease and remember what it felt like to run – though doing so is intoxicating and emotionally dangerous all at the same time, which is why I have trained myself to do it as little as possible (I’m a strong guy, but there are some demons that you just shouldn’t tempt).

Then again, that’s my rule, not my daughter’s.

And so it was that when Isabelle came home and announced that she wanted to enter her school’s mile-long “Gobbler Gallop” race and needed me to train her, I got on board (hey, if my six-year-old wants me to train her for a race, who am I to point out that I’m not exactly Carl Lewis?). I smiled, asked Casey to break out my sneakers and had Isabelle put on her running gear – it was go time!

Watching us “train” for the race must have been an interesting site to behold (there are some things you just don’t see everyday). To the casual observer, it probably looked like a little girl running away from a wheelchair dad (or the creepy wheelchair dude from the pumpkin patch) wearing a sweatband, sneakers and a parka (it’s cold outside!), but in my mind we were like Mickey and Rocky training to fight Apollo Creed (only we’re younger, one of us is a girl and ‘Eye of The Tiger’ wasn’t playing in the background). Either way, we meant business.

During our runs together we got to talk, joke and enjoy a little one-on-one time hanging out. We also taught each other some valuable lessons about what it really means to endure. At times Isabelle would tire and ask me if she could stop. Knowing she had it in her to continue, I’d encourage her to dig deep. In every one of those moments, she found the strength to go on and always made it to our designated resting spots.

It is a true credit to the huge character of that little girl that she never once quit mid-way.

‘Running’ alongside Isabelle, it was hard not to feel the cool air on my face, watch her little legs kick and not feel like somehow I was actually running too. At first I tried to fight it because I didn’t want this to become about me. What’s more, I didn’t want to open myself up to the emotional hardship of experiencing that feeling. Like I said, it’s best not to tempt some demons. However, in being out there with Isabelle it became clear that this what I was feeling was quite different than the demon from my past.

Whereas before, thinking about running left me open to being sad, angry or even bitter about losing the ability to walk – watching Isabelle filled me with hope, joy and pride. There was no bitter aftereffect, no sadness, just happiness.

As it turns out, kids have the ability to drain your batteries (in my case, literally) and fill your soul at the same time. They can slay your demons, make you a better person and somehow not even know that they’re doing it.

Last Saturday morning we got up early, fed Isabelle some Wheaties and got her to the school for the big race. After a few announcements and instructions the runners lined up. A bell rang and off they went, the Gobbler Gallop was officially under way.

Nine minutes and thirty-one seconds later, our princess crossed the finish line (we cheered so loud it hurt). She was the fourth girl to finish and came in well ahead of the many older kids she was racing against (she was put in the same heat as second graders).

We celebrated by spending extra time on the playground (while I tried not to turn into an icicle) followed by a trip to Krispy Kreme. She couldn’t have been happier. I couldn’t have been prouder.

Who knew racing one mile could take us so far.

‘Mr. Halloween’ – That's Me!

2011-11-06T19:59:00.000-05:00

Once Casey makes her mind up about something, getting her to go in a different direction can be...shall we say, challenging (she calls it being steadfast whereas I call it being stubborn – we’ve agreed to disagree). So when she told me that taking the girls out to trick-or-treat this year was going to be my new (and prestigious) responsibility, I did what every strong, independent, brave husband would do – I grabbed my coat, put on a scarf and headed out to canvas the neighborhood for candy!

I have to admit, despite my decision to follow Casey’s marching orders, I may not have been totally thrilled about my new roll as ‘Mr. Halloween.’ It’s not that I was opposed to taking the girls out trick-or-treating, I really wasn’t. However, I am vehemently opposed to freezing my buns off in exchange for cheap candy (after all, I’ve got a job, a Costco Club membership and a minivan. I’m pretty sure I can swing picking up some sugary sweets if/when I get a craving without having to beg from my neighbors in 40-degree weather).

Thankfully, misery loves company (kidding), and we invited the Holbrook’s over to join the fun. We began the evening by enjoying a ‘scary dinner’ consisting of guts (spaghetti) and eyeballs (meatballs), bones (breadsticks) and a special witches brew (punch). Yummy!

Once we filled up on the horror of it all, the kids put on their costumes and Justin and I prepared for phase two of the evening: The sugar dash!

I was still slightly grumpy about things, but little did I know that 5-minutes later I’d feel much differently about the evening’s plans. That’s because, as so often seems to happen in life, one simple moment can really change your entire outlook.

When I saw Pocahontas (Isabelle), Ariel (Sammy), Cinderella (Kate Holbrook) and Snow White (Avery Holbrook) came out into the living room, the trick turned out to be on me! They looked so cute and adorable (not to mention they were so excited to go out with us) that I couldn’t help but get pumped up too (darn those kids for making me re-live the magic of Halloween – how dare they!).

As we went about tricking and treating, I can honestly say that Justin and I had more fun than the girls did. Seeing our princesses run hand-in-hand from house-to-house, cheerily shouting “Trick-or-Treat” and grinning from ear-to-ear was the best ‘treat’ we could have hoped for (mercifully, it wasn’t even that cold outside).

While I’m not a fan of the diabetic coma that followed this amazing night of wonders, I am more than happy to take this opportunity to officially designate myself (without prodding from Casey) as ‘Mr. Halloween.’

From now on, as long as I am able (and for as long as they’ll let me), I’ll be taking the girls out on Halloween. Shoot, maybe I’ll even take a bag for myself next time too (no sense passing on free candy if I’m already out and about).

Maybe I’ll even bring along some raw eggs and toilet paper too – I mean, why not go all out, right?

My Body, My Choice

2011-10-30T17:56:00.001-04:00

After reading previous posts regarding my plight as the lone man in a household that runs on estrogen, my dear wife took pity on me and decided to dignify my role as ‘man of the house’ by making me a special treat (she actually reads my blog! What the what? Note to self: Be more careful about what I write, lol).

What did she make for my special treat? Man Dinner!!!!!!!

Man dinner basically consists of all the delicious foods my cardiologist wants me to avoid. Specifically, she served up kielbasa, bacon, Jimmy Dean sausage, a hard-boiled egg and a bagel with enough cream cheese on it to cover my front yard (basically Casey is either spoiling me rotten or trying to kill me. The jury’s still out, but regardless, I’m at peace. In my book, good food is good food.)

Man Dinner is THE BEST

My mouth is watering again

In a word, my meal was heavenly (I just drooled on the keyboard thinking about it). Ironically, after eating it, heaven may in fact be where I end up! Allow me to explain...

Entering my food coma...

Last year I was diagnosed with a heart condition known as a cardiomyopathy. I had gone to Johns Hopkins for a round of tests/consultations with my neurologist, pulmonologist, cardiologist, etc. (that’s a lot of ‘ologists’) and we were waiting for the results of an echocardiogram that I had done earlier in the day. Thinking we might be late getting home (the kids were with a sitter), and knowing I had never had any heart-related problems (except when the Lakers lost to the Celtics in the Finals and I almost had a coronary) – we were set to leave without getting my results when the nurse called my name.

I went into the exam room and greeted the doctor. Anxious to leave, I cut to the chase and asked: “is everything OK?” His reply was unexpected: “No. You have a serious problem.” Then he said: “I’ll be right back” and he left the room (nice!). Casey and I exchanged a confused, surprised and scared look.

Upon his return, he explained that my heart doesn’t pump out enough blood per beat and that if left unchecked it’s going to fail.

Apparently the issue wasn’t caused by poor eating habits (MAJOR SHOCKER), but rather that it was due to my Muscular Dystrophy (MD strikes again!). He rattled off a long list of foods I should avoid and told me to cut back significantly on my sodium intake (those of you who know me well understand that’s like asking me to stop breathing. I LOVE salt).

Sensing that I might be in denial (not to mention that I may have been giving him some attitude), he put me in my place. Looking me straight in the eyes he said: “You don’t get it. If you don’t listen to me you’re going to die” (wow, tell me how you really feel). I started taking heart medications the next day.

So after all that, how can I glorify gorging myself on a savory trio of salty meats? Because life is all about living, not just being alive.

I’m a good boy. I’ve cut back on my sodium, I take my meds religiously and I’m doing all I can to ensure that my heart keeps ticking. I do so because I love my wife, I love my girls and I love life. But sometimes a guy’s gotta get his kielbasa, Jimmy Dean sausage and bacon on!

I’m not a rebel and I don’t have a death wish, but I do believe there must be balance in all things. If that means taking a ‘time out’ to devour a special ‘Man Dinner’ every now and again, so be it.

My life plan is simple: Be around as long as possible and spend my life living. Each and every day, I want to live. That way, when the time comes to say goodbye I’ll be able to do so wearing a smile.

Cream cheese smile - gross looking, but delicious!

Say 'Cheese!'

2011-10-27T21:17:00.000-04:00

As referenced in a previous post, we’re suckers for adopting vulnerable critters (you try saying “no” when Mama and the girls break out the doe eyes!). The most recent critter to take advantage of my sucker-hood is a baby mouse the girls are calling “Cheese.”

Found while cleaning out the garage, Cheese had been abandoned by his mother when only a few days old and was dehydrated and starving when Casey rescued him. Mr. Google showed us how to care for him and after spending $30 on baby mouse supplies (sheesh, babies are expensive); we got down to the business of nursing Cheese to health.

As it turns out, caring for Cheese is a lot like caring for an actual baby (he needs feeding every three-hours, drinks baby formula and poops a lot. Also, just like with our real children, Casey handles all midnight feedings). What boggles my mind is how tiny he is! No joke, he weighs six-grams and is no longer than Isabelle’s pinky finger.

Small mouse, stoned-looking child - cute right!

Casey wraps him in a "bib" during feeding to keep Cheese clean.

Her little hand looks huge compared to how small Cheese is!

It’s been a week now and Cheese is doing really well. He plays a lot, his fur is coming in and he eats like a champ! Did I mention we have to feed him with a syringe (good thing too, my nipples were killing me!).

This tiny guy doesn't even drink half of what's in there.

I expect we’ll be releasing Cheese into the wild before too long, but for now he’s been surprisingly fun to have around (who knew I’d ever say such a thing about a mouse that wasn’t named Mickey).

Not sure why I decided to give Cheese the full blog treatment (heck, I’m not even sure why I decided to rescue him), but it is what it is. Maybe it’s because in some small way, Cheese is a reminder that good things happen when we invest in others. He’s feeling better, growing stronger and has a brighter future (hopefully one void of hawks and snakes) because of me. And while he’s ‘just’ a mouse, it still feels good knowing that something I did (let’s face it, Casey’s done all the work – I just sprung for the formula) has made a real difference to someone/thing.

Not a bad return on a $30 investment.

Believing the Unbelievable

2011-10-24T21:24:00.000-04:00

About a month ago, Isabelle and Sammy brought the mail in screaming. Was there a spider in the mailbox? No. A crazy squirrel on the prowl? No. Turns out all the fuss was over a flyer that Isabelle excitedly read aloud: “’Disney on Ice – Dare to Dream’ is coming to town!” You know, ever since that kid learned to read its been nothing but trouble!

So guess what we did last weekend (my girls love princesses and ice skating, it’s not like I had much of a choice in the matter, lol)!

From the second we entered the Patriot Center, I knew we were in dangerous territory. Hotdogs were going for $7.00 (I’ll never be THAT hungry) and there was enough overpriced Disney merchandise being sold to make even the most capitalistic among us blush ($15.00 for a balloon, sure that’s a fair price!).

After bobbing and weaving our way through the vendors (without going bankrupt, yay!), we found our seats and settled in for the show. Let me just say that the people at Disney seriously understand the meaning of ‘production value’ (there was singing, dancing, indoor fireworks and great ice skating too). Wow!

The stars of 'Tangled' flying high!

All of the princesses hit the ice for the grand finale

Despite all the excitement on the ice, the best part of the experience had to be the show that took place right next to me – Isabelle and Sammy reacting to the performance. They cheered, laughed and danced from start to finish (I was dancing on the inside).

And then the profound occurred: They believed.

Somewhere in-between Cinderella’s triple lutz and Mickey’s double axle it occurred to me that what I was witnessing was the pure innocence of a child’s belief in the unbelievable. It was magical.

They loved the show!

Lots of props, dancers and costumes to behold

It strikes me that at some point in our lives we each had the ability to believe as they do. And yet, somewhere along the way we tend to let it go.

As silly as it may be to believe in Disney princesses, I couldn’t help but wonder when the last time was that I believed ANYTHING as wholeheartedly as a child. To be honest, I couldn’t remember. But that’s about to change.

As of today, I am refusing to let circumstances, politics or anything else rob me of the ability to accept, trust and believe the unbelievable.

Someone will hold a door open for me and I’ll believe that, overall, people are good. Casey will flash me a smile and I’ll believe that I’m not alone. Someone will “like” my Facebook status and I’ll believe that a single ‘click’ can make a difference.

On our way out of the arena, Sammy had this to say: “I have a great idea. Why don’t we go to Disney World again (we went last year) so we can have another lunch with the princesses! That way they won’t miss us so much.”

Then again, maybe there is such a thing as believing too much – not sure my budget can take much more of this!

Lessons From ‘The Patch’

2011-10-21T09:00:00.000-04:00

In a world so technologically sophisticated that our kids spend much of their time (perhaps too much) fiddling with iPads, 3D movies and smartphones, it’s good to know that nothing beats a good old fashion trip to the local pumpkin patch!

Our pumpkin patch experience was great! The kids played on slides, went on pony rides, and dug into a heap of sand looking for prizes – there was no shortage of fun things to do. Interestingly, it seemed that of everything at the patch, the actual pumpkins themselves played a surprisingly small role (basically, you just grabbed one on your way out). No matter, a good time was had by all.

As you may know, I’m a big believer that most every experience we have in life (be it good, bad, fun or mundane) offers a learning opportunity. Well, an afternoon at the patch is no different. So, with that said, I present to you my top 3 lessons-learned from hanging at the pumpkin patch:

Lesson #1: Looking like a ‘creepy guy’ is easier than you think. (There’s nothing creepy about a disabled father spending time at a pumpkin patch filled with little kids when he’s with his family. However, leave him alone while his wife and kids are on a 20-minute hayride and it’s a different story altogether. Suddenly that same man goes from getting looks that say: “you’re a neat dad,” to getting the stink-eye from parents who think you’re a weirdo wheelchair creeper who enjoys roaming the patch staring at their children. You have no idea how happy I was when Casey and the girls got back!)

Lesson #2: Take it all in. (There’s a lot to see, do and enjoy at the patch so in the hustle and bustle of it all, be sure to take a few moments to let the memories soak in. We’re not going to be young(ish) forever and neither are our kids – our window to enjoy this stuff is closing.)

Lesson #3: Cotton candy doth a great father make. Want to be a hero for the afternoon? Surprise your loved ones with the gift of cotton candy – it’s like diabetes on a stick, but they’ll still love it! One quick note of warning: sneaking off to buy the cotton candy is easy, the hard part is not getting mugged by an army of five-year-olds as you make your way back across the patch!

I’m not the biggest Halloween fan in the world, but I can absolutely say that if it means getting to go to the pumpkin patch more often I’m all for making it a quarterly holiday.

But if you need to track me down during future hayrides, I'll be waiting in the car!

Farewell Machismo, You Will Be Missed

2011-10-19T08:35:00.001-04:00

I’d like to observe a moment of silence for my recently deceased masculinity. We had some good times together and it was taken from this world far too soon. I suppose it was inevitable, but alas I never really thought the day would come when Casey, Isabelle and Sammy finally managed to snuff out the last ounce of machismo from my now emasculated being.

It happened on what was otherwise an average day. In truth, I never even saw it coming. After a long day at the office, the girls welcomed me home with hugs and kisses. Little did I know I was being set up.

I should have known something was awry when I smelled the sweet aroma of warm, freshly baked beignets. After remarking what a nice surprise this was, Casey’s reply said it all: “We’re having a fancy snack for a fancy good time.” Like an idiot, I was too wrapped up in the delicious mouthful of scrumptious beignet I was chewing on to read between the lines.

Powder sugar on her cheek - a dead giveaway!

This plate of beignets was full before I got there!

Next came the girls.

Isabelle and Sammy entered the kitchen to make a humble request of dear old daddy. “Will you play a game with us?” they asked. “Of course” I replied as I headed towards the PlayStation 3 for what I thought would be an exciting round of ‘Ratchet & Clank.’ But PlayStation 3 wasn’t on their agenda.

Before I could make it to the living room, the ladies pulled out a purple box with pink letters on the front that read: “Fancy Nancy.” I looked at Casey, and then at the girls – it was too late. The trap had been set and I had rolled right into it. I was about to spend the next hour playing the Fancy Nancy dress up board game – Thus making the official score in the Taylor family battle of the sexes:

Females: 1,000,000,000,000

Males: What males, there are no males here?

I was THRILLED to play Fancy Nancy!

At first, I tried to fight it. With every spin of the wheel, I resisted the urge to have a good time. Real men simply don’t enjoy playing Fancy Nancy. However, we do enjoy winning....

As the game went on, something interesting started to happen – I got my feather boa, my tiara, my purse and my wand before the ladies got theirs. All I needed to win was the purple hair ribbon!

With each spin, I moved closer to victory. Then I hit a snag, my hot streak went cold and Sammy was suddenly in the zone. That kid went on a run the likes of which Fancy Nancy legends are made (I’m talking a hall of fame, call ESPN, she could go all the way type of performance).

And so it was that with one final flick of Sammy’s tiny wrist, what only moments earlier had seemed destined to be my purple hair ribbon became hers. Not only had I played (and actually enjoyed) Fancy Nancy, I got smoked by a four-year-old girl!

Mine is the manly one on the far right

Sammy is an amazing Fancy Nancy player

I couldn’t figure out if it was a new high or a new low – perhaps it was something in-between.

In the end, we all had a great time. And even though the experience reinforced how very out numbered I am regarding the estrogen to testosterone ratio in my household, the memories we made eating yummy beignets and spending quality time will far outlast the sting of girlie defeat.

Smiles all around

Look who managed to turn their frown upside down!

Thanks Fancy Nancy.

House Rules

2011-10-15T16:31:00.000-04:00

In an effort to keep some semblance of order (and peace) at home, every family has to institute rules. One of the cool things I’ve enjoyed about being a grown-up is getting to decide which family rules we subscribe to (though enforcing them is a real bummer).

In thinking about what it takes to make it in the Taylor family, some rules are more obvious than others. Given the frequency with which we have the good fortune of having friends and family come visit us, I figured it might be worthwhile to give any of you interested in hanging out for more than a few days a good idea of what flies in ‘Casa de Taylor’ and what doesn’t.

Here goes:

Rule #1: Daddy doesn’t have to eat veggies (Hypocritical? Absolutely, but until you start paying the mortgage around here, it is what it is.)

Rule #2: No driving my wheelchair (Sure it looks easy, but that’s because I’m a professional. The last thing we need around here is you punching holes in our walls.)

Rule #3: No PlayStation 3 without undies on (This one falls under the ‘should be obvious’ category and yet somehow we had to make it an official rule. No further details will be provided.)

Rule #4: There are no lazy people in this house (EACH of us can and should do our part to help – hard work is not to be shied away from. Admittedly, this is not always everyone’s favorite rule, lol)

Rule #5: We take turns administering Daddy’s meds (Turns out that drugging Daddy is super fun and worth fighting over. This rule has probably done more to save us from headaches and arguing than all other rules combined)

Rule #6: No underpants = no dessert (Enough said)

Rule #7: Lift the hands that hang (We can’t expect to raise thoughtful children or experience personal satisfaction without actively looking beyond ourselves. Be it a smile, a thoughtful comment or making a charitable donation – opportunities to serve others are all around us.)

Rule #8: If you find an abandoned baby critter, adopt it (One time we found a baby bird, left it to nature and things didn’t work out so well. Since then, we’ve adopted everything from caterpillars to a baby mouse – literally while writing this blog post Casey was ‘lucky’ enough to find the mouse. This rule sucks!)

This guy was a fat caterpillar when we found him

This was taken just before we released him outside

A baby mouse...man am I a sucker!

'Cheese' is a tiny guy!

Rule #9: Make your bed (No one likes a messy room or unmade bed. If Sammy can make her bed, so can you.)

Rule #10: The dog is not a pony (Nubbins is like a loaf of bread with legs, it’s been tried and it just doesn’t work.)

So, there you have it – the proverbial lay of the land. Nothing crazy, just enough to keep the train on the tracks. And while I’m sure they’ll evolve over time, for now these are the rules of the game we play. If you think you can handle them, we’d love to host your visit! If not, we’ll be as patient and flexible as possible.

Unless of course your issues relate to Rule #3 or Rule #6, in which case please stay home!

What Kind of Work? Teamwork!

2011-10-09T23:32:00.000-04:00

One of the most important dynamics of our family has to be teamwork (after all, we’re in this thing together). To help put it in terms the children understand, we’ve relied on our good friends the “Wonder Pets!” who always say, “What kind of work? Teamwork!” (yeah for quality TV shows!).

While every family relies on teamwork, I’ve often wondered to what extent (given my disability) we may ask our girls to help out in non-traditional ways. For example, after a fun trip to the pumpkin patch this weekend (details to follow in a future posting) my tires were covered in dirt (the field may have gotten mud on my chair, but I assure you, I got the best of the terrain that day). However, in order to avoid tracking mud throughout the house, I needed a good wheelchair scrub (the kids and Mommy left their muddy shoes by the door, but it's not like I have an extra set of tires laying around here for these types of occasions). Enter Mommy and the girls...

Armed with sticks to pick out the mud and ready with tiny hand brooms to sweep up the mess, my sweet little teammates attacked this dirty job as though the dirt itself had personally offended them. Under Mommy's supervision, Sammy took on my right tire and Isabelle took on the left – together the three of them formed a lean, mean, wheelchair-scrubbing machine (like the cleaning version of Voltron).

Sammy kept saying "your tires need a bath"

Isabelle's quote: "Daddy, don't run over my head"

This kid is thorough

Actually looking better...

I was roasting in the sun!

Even though our rat-dog Nubbins kept trying to steal the ‘cleaning sticks’ from the girls (she REALLY wanted to play fetch), they hung in there and did a terrific job. What’s even better, they had a great time (it’s amazing to me how much fulfillment kids get out of knowing that they’re being helpful).

That's not even half of it!

Crazy dog!

In addition to detailing my wheelchair, the girls change my shoes, blow my nose, charge my blackberry, get me in and out of the van on their own (that includes strapping down my wheelchair with safety ties), feed me snacks, etc. (the list goes on and on). Shoot, the girls even fight over who 'gets' to help me with my morning Listerine ritual (turns out pouring Listerine in a cup and helping me rinse is super fun – thank goodness they have steady hands!).

We do all kinds of things as a team, including making oatmeal (I imagine it might be somewhat entertaining for you to see).

Sammy grabs the oatmeal packets while Isabelle climbs on my wheelchair in order to reach the bowls. After ‘pouring’ the oatmeal, Isabelle adds water while Sammy handles trash duties and sets the table. I give Isabelle a boost to reach the microwave and tell her what buttons to push. 60 seconds later, ding, breakfast is ready! It’s fun and tasty – a true win/win.

Whether adjusting my breathing mask or handing me the remote control so I can put on a show for them, my little angels are invaluable members of my team. Led of course by Mommy (our lovely and talented team captain), together, we get stuff done.

Lately the girls have started to notice that the way they help their Daddy differs from other families. To my great comfort, they have each expressed that they see this difference as being sad because: “Other kids don’t get to do as much fun stuff because they don’t have wheelchair Daddy’s” (they also think it's lame that other Daddy's can't give wheelchair rides).

With these teammates by my side, I’m thinking it could be a championship season for Team-Taylor!

When Life Gives You Lemons... Make Salad?

2011-09-29T21:29:00.001-04:00

It doesn’t happen often, but from time to time I get bummed out (true story). While it’s only usually a brief occurrence, it’s never fun and I don’t like it (go figure, I don’t like being bummed out – breaking news right!).

In my job, I get to work with some amazing groups. I work hard on behalf of my clients and I believe in them. Because of that, I take their successes and hardships personally. Well, despite my best attempts, two of the projects I have been immersed in have come to a screeching halt. And so it is that today, I mourned the two projects I couldn’t save.

I recognize that nobody bats 1,000, completes every pass or sinks every putt, but darn if it doesn’t still sting when you strike out with runners on base (yeah for sports-related metaphors/analogies/sayings).

I texted Casey to tell her the news and naturally, she tried to make me feel better. Unfortunately, it didn’t work. That’s when she pulled out the big guns – LEMON SALAD!!!

I feel the need to explain...

I love lemon salads (it’s lettuce, lemon juice and salt, what’s not to love?). Sadly, my love for lemon salads is only matched by Casey’s disdain for making them. I’m not exactly sure why she loathes making them, it simply is what it is. However, today was different. When I came home today, guess who had a huge lemon salad waiting for him (I’ll give you a hint: He’s got four wheels and likes to blog)? It was me!

Seeing someone you love do something they don’t like doing in the simple hopes of making you happy is very touching. And while that beautifully delicious crispy, lemony, salty masterpiece didn’t save my projects, it really hit the spot.

More importantly, Casey’s thoughtful act lifted my spirit (I’m back baby!).

It’s sometimes easy to take for granted that more often than not, it’s the little things in life that make the biggest impact (at least that was my experience today).

Here’s to a loving wife, to doing small (but meaningful) acts of kindness and, of course, to keeping the refrigerator stocked up with lemons.

Because it turns out that in life, sometimes you'll need all three.

Don't Call it a Comeback

2011-09-25T21:42:00.001-04:00

Several of you (my wonderful, good-looking and loyal readers – clearly, I’m not above pandering) have asked why I didn’t have any new posts this week. Well, aside from being lazy, the answer is this: The universe was out to get me.

It’s not that I’m paranoid (did somebody say I was paranoid?), but it really did feel like the universe was out to get me. My workweek consisted of back-to-back meetings, late-night conference calls, strategy sessions, missed meals, lack of time with the Casey and the girls and lots of DC traffic (do I know how to party or what?).

To top it off, Mother Nature hijacked Dominion Power and we were without electricity until 3:00AM on Thursday. It made for an interesting, but sleep deprived night (why don’t breathing machines come with batteries?).

The long and short of what I’m saying here is that Monday – Friday, ‘the universe’ pretty much took my lunch. But hold on sports fans, I wasn’t down for the count! Saturday and Sunday yours truly fought back (and I brought backup!).

Thanks to the generosity of Chris Battle (my personal hero) and his band of merry public relations gurus at Adfero, I got to take Casey, the girls and our dear friends to Saturday’s Washington Nationals game (amazingly, the Nats actually won – I took pictures to prove it). It’s incredible how far great seats and a few chilidogs can go to helping one beat down ‘the universe’ like a rented mule!

Sunday was the Primary program at church. Cute kids, adorable singing and the girls both nailed their lines – need I say more (proud papa alert!)?

So while I still find myself a little bruised and battered from a long (but productive) workweek, the joys of a well spent weekend have certainly buoyed me up. And though some may be dreading Monday morning, I’m going to go out on a limb and say that this week could be my finest yet.

And even if it isn’t, so what! After all, maybe Chris has season tickets for the Redskins too...

Mr. 'Ordinary'

2011-09-18T21:12:00.000-04:00

With cameras rolling, lights blaring and an intent audience before me, I took to the stage at FEMA's National Recovery & Resiliency Exercise Conference last Wednesday ready to rock that crowd (dare I say, like a Hurricane?).

Armed with a few wisecracks, some highfalutin jargon regarding the criticality of information-sharing and some thoughts about the need to include the water sector within emergency planning efforts (what a nerd, I mean expert) – I was the darling of the bureaucratic ball!

That is until an ordinary-looking 23-year-old guy named Dakota Meyer grabbed the microphone and shook me (and everyone else in the room) to my core.

On the outside, ‘Mr. Ordinary’ is a 5’ 10, blond, decent looking dude. But like each of us, it’s what he’s got on the inside that makes his story exceptional.

Two-years ago Dakota was a Marine serving in Afghanistan. On the morning of September 8, 2009 he heard over the radio that four of his comrades had been pinned down by an insurgent ambush. He approached his commanding officer for permission to go help his friends four times. All four times he was denied.

That’s when this when Mr. Ordinary did something truly extraordinary – he disobeyed direct orders and went to try and save his brothers.

Along with a fellow-Marine (Juan Rodriguez-Chavez) Dakota ‘borrowed’ a Humvee. With Rodriguez-Chavez behind the wheel and Dakota taking fire from the exposed Humvee’s turret, the two drove (without backup) into the ambush.

Neither expected to survive, and yet still, they pressed on.

Upon entering the kill zone, they immediately spotted some injured soldiers. Without hesitating, Dakota loaded them into the Humvee and took them to safety.

Then the duo drove back into battle – FIVE TIMES!!!!

Each time they entered the fray, there were more troops to save, so they picked them up and transported them to secure locations before heading back into the battle time and time again.

When all was said and done, Dakota rescued 36 people over a six-hour period while taking down insurgents and getting hit with shrapnel in the arm.

Tragically, the four comrades they had originally gone in for were killed in the ambush.

His remarks at the conference were short and spoken with a reverence that indicated to all present the deep sadness he still feels for having been unable to save his friends. On his way out, he shook some hands and passing me on stage took a moment to pat me on the shoulder – the gentle touch of a brave giant.

The standing ovation he received was unlike any I’d ever seen or heard before.

I’ve been on the South Lawn of the White House with the President, spent time with countless members of Congress and met all kinds of ‘important’ people, but I’ve never met anyone like Dakota. He wasn’t there to be a policy-wonk, to impress us with his analysis or to further his own agenda. He was there to honor the fallen by sharing his tale. In doing so, he inspired us all.

After leaving the conference, Dakota headed to the White House where he got to have a beer with President Obama (maybe I should say Obama got to have a beer with Dakota).

The next day he went to the White House again, only it wasn’t for the brew. Dakota received the Medal of Honor (he’s the first living Marine to receive it in the wars in Afghanistan and Iraq).

Throughout the ceremony, Dakota displayed the strength of a lion and the humility of a man who (despite his amazing valor) doesn’t consider himself to be a hero.

Such grace is rarely (if ever) seen in this town.

Would that we could all have the courage to be as ‘ordinary’ as this guy.

Men Are Dopes!

2011-09-12T21:58:00.000-04:00

On behalf of males everywhere, I have an official announcement to make to all the ladies out there: Men are dopes! (though, you likely already knew that). Now, I wouldn’t normally recognize, acknowledge or admit that fact, but given my latest blunder I’m afraid I have no choice but to call it like it is.

If you’ve been reading the blog lately, you’ll recall that last week I announced that today would be Sammy’s first day of preschool. Well, despite my pronouncement to the blogosphere, I still managed to get it twisted – though, in my defense, I had good reason to be confused (at least I think I did).

Last Thursday, Casey said that Sammy was going to class. She’d be meeting her teacher, working on a project and playing with her tiny friends. Sounds a lot like the first day of school, right?

So, I took my little angel in (I was the only daddy there that literally drove their child into class) and was delighted to learn that I could stay with her (they were only doing an hour of ‘class time’). This was a preschool I could really get behind!

She jumped right in!

After watching her interact and participate with teachers, kids and toys for the hour it was time to go home. I have to say, she did AMAZING!!! (note: that is an expert opinion, when it comes to my children I’m completely objective, lol).

You can imagine how surprised I was to find out later that I had been duped. Turns out that what I had thought was a wonderful first day of preschool had in fact not been her real first day. No, it was an ‘introductory hour’ (I’ve never even heard of that before)! Her actual first day was today after all.

Of course, by the time I learned that Monday was the real day I had already booked hours worth of immovable meetings. Doh!!!!

So there you have it, I’m a dope and today it cost me my baby’s first ‘real’ day of preschool.

My girls, off to get their learn on!

My baby's big day (and she was rocking a shiner)

Shortly after discovering the dangers of jumping on the bed. Is she resilient or what!

Needless to say, I felt like a schmuck when I left the house this morning. That is until Sammy tackled me with a monster hug on my way out the door. Squeezing the life out of me (that kid is freakishly strong) she exclaimed: “I love you soooooo much Daddy!” (my heart leapt!)

Then she looked me in the eyes and finished her sweet statement by adding: “No matter what you look like” (what the what!)

Touché Sammy, touché.

Choosing to Heal

2011-09-11T22:27:00.002-04:00

While there’s no secret formula or one-size-fits-all way of clearing life’s hurdles, it has been my privilege and experience to learn (both through enduring my own adversities and seeing others tackle theirs) that the power to take control of our lives lies within each of us – and that the key to unlocking that power is attitude.

Experience has taught me that my attitude is the only thing in this world that I can truly ‘control’. I can’t control the bus schedule, but I can choose to be upset, frustrated or amused by Metro’s inability to run on time.

On a day when emotions run deep and the need for continued healing is ever present, we can choose to have gratitude and love of country in our hearts instead of hatred, fear and anger. We can choose to lift the hands that hang by inspiring others to forgive instead of harboring resentment. Indeed, we can even elect to overcome the pain we feel by choosing to become better people instead of bitter people.

Because we each posses the unseen (and perhaps yet untapped) strength to replace our own personal mountains of despair with monuments of courage – we can choose to do all these things and more.

The choice is yours.

A First Day to Fill us All

2011-09-06T21:18:00.000-04:00

First day of 1st grade!

I dropped Isabelle off for her first day of school today. With our heads held high (and both of our stomachs tied in knots) we bravely entered her classroom, greeted her teacher, found her desk and bid our farewells. One of us fought back tears; the other ran to make new friends (I’m not saying which of us did what).

As some of you know, the type of Muscular Dystrophy (MD) that I have is such that most people with it die in adolescence or early adulthood. That means people ‘like me’ don’t get to do things like drop their kids off at school (or kiss their spouse goodbye) because they don’t live long enough to have their own families.

So how blessed do you think I feel that today I got to see my baby off on her special day? In a word: VERY.

I live my life with the appreciation that I'm truly blessed not only to be here, but to be doing so well (I’m like a Timex, I take a licking and keep on ticking). I feel a responsibility to make the most of my life in order to honor and respect those with MD who passed away without having had the opportunities I enjoy on a daily basis.

I also feel the deep and abiding need to recognize the beauty that this life offers – moments like seeing Isabelle’s shining face as she bravely overcame her fears about starting up at a new school, the opportunity I had to reassure her that all would be well, getting to watch her show off her new ‘first day’ outfit to Sammy and feeling the squeeze of her tiny hand as we approached the school building together.

Each of these was a priceless experience because in and of themselves they were each inherently special moments. Just thinking about them brings a smile to my face.

Oh how I would that my fallen friends could have felt the joy I carried in my heart today before they left us.

Rest well my dear friends; my joy will fill all our cups. After all, next week Sammy starts pre-school!

When the Pupil Becomes the Teacher

2011-09-01T20:54:00.000-04:00

It’s good to know that even when you think they’re totally tuning you out, kids are in fact listening to what you’re saying (at least from time-to-time). During last week’s ‘family home evening’ (a night we set aside to play games, teach family values and pig out on dessert) we discussed gratitude. During the lesson, I pointed out that despite one’s abundance (or lack of thereof) no one person is better than another.

A few days later, I saw an interview where Jim and John Harbaugh (brothers who are both head coaches in the NFL – go Niners!!!) said that growing up their father instilled gratitude in them through a neat family saying/motto.

Mr. Harbaugh would ask his boys: “Who has it better than we do?” to which the boys learned to respond: “Nobody!”

Thinking that was neat, I decided to try it with Isabelle and Sammy. I told them what I would be asking and taught them how they should respond. Here’s how it went down:

Me: Who has it better than we do?

The girls: EVERYONE!

This was not exactly what I had in mind.

I took a minute to review the purpose of the exercise and then told them their line again. The result was the same.

Me: Who has it better than we do?

The girls: EVERYONE!

Thinking they had missed the entire point of the family home evening lesson and that they were somehow of the opinion that we are worse off then everyone on the planet, I started to get frustrated – until Isabelle spoke up.

Placing her hand on her hip she said: “Daddy, just because we have two bathrooms doesn’t mean we are better than someone that doesn’t. Saying we have it better is not kindness, we don’t want anyone to feel bad. Everyone has it better!”

My frustration (along with my heart) melted. Not only had the girls been listening, now they were doing the teaching.

In a day when it seems easier than ever to get lost comparing ourselves to others, to confuse our assets with our personal worth or to judge someone by the brands they wear – let’s take a moment to step back and remember what matters most.

Maybe then we can all hope that EVERYONE has it better than we do!

A Few Verses From the ‘Book of Vance’

2011-08-29T22:26:00.000-04:00

In the fun spirit that often seems to accompany natural disasters, below I offer for you a modern day ‘scriptural’ account of our family’s experience with Hurricane Irene this past weekend:

Verse 1: And in the same week in which there had already been an earthquake, the winds began to blow much. And with them, also the waters fell.

Verse 2: And at 2:30AM all electrical power was lost.

Verse 3: And thus ended the functioning of Vance’s breathing machine. And behold he was not pleased by the abundance of air outside the house and the lack of air inside his lungs (for he very much liked to breath).

Verse 4: And it came to pass that the storm woke the children. Wherefore Mommy and Daddy were bummed.

Verse 5: And the wind grew louder. And the eldest child grew sore afraid (and was quite vocal about it).

Verse 6: And Mommy and Daddy were seriously bummed.

Verse 7: Thus it was that after much tribulation breathing, Vance got into his wheelchair at 6:30AM having received very little sleep.

Verse 8: Wherefore he found solace in the iPhone apps downloaded in anticipation of having to pass many hours with nothing to do. And great was the joy therein.

Verse 9: But lo, the iPhone battery did not last long. Wherefore Vance relied on the resurrecting power of the iPhone car charger. And he was grateful for his investment in that saving technology.

Verse 10: And it came to pass that the Hurricane Irene departed.

Verse 11: Yea, and Casey’s ability to cook temporarily ceased to exist (for she had asked me for a home with a gas stove, but had received it not). And there was gnashing of teeth and a great wailing throughout the Taylor household as they have been spoiled with amazingly cooked breakfasts for many days.

Verse 12: Upon looking outside, it turned out to be a beautiful day (for the Lord hath a true sense of irony).

Verse 13: And the Taylor’s decided to put on their happy faces, give thanks that there was no damage to the house and that everyone was well (if not perhaps a little tired).

Verse 14: Wherefore, the Taylor’s checked in to see if their neighbors were OK, went to church and then mooched a delicious lunch/dinner/dessert off the Holbrook family (whose power the almighty had seen fit to restore earlier in the day).

Verse 15: And behold, Vance ate much. Wherefore he popped the top button on his pants that his belly might hang out. And it was good

Verse 16: Lo, after eating all the Holbrook’s food, the Taylor clan returned home to find electrical power had been restored. And there was much rejoicing throughout the land.

Verse 17: And thus it came to pass that Hurricane Irene had come, done her damage, left and life returned to business as usual.

Verse 18: And so it was that Vance got into bed, turned on his breathing machine and gave thanks for his many, many, many blessings.

Verse 19: And after thinking of what a lucky guy he is, Vance slept like a baby (and lo, according to Casey the snoring thereof was great).

Verse 20: And upon hearing too much of the snoring for far too long, behold the Mrs. considered cutting off the power...

Perspective is Everything

2011-08-25T19:40:00.001-04:00

It’s getting tougher and tougher to impress the kids these days. For example – I’ve been asked to co-host the National Capitol Region’s television broadcast of the Muscular Dystrophy Association (MDA) annual Labor Day telethon again (what a mouth full!). It’s always an honor to be asked to co-host and I appreciate the opportunity to do so. After telling the girls that they’d be on TV too, I figured they would be pretty excited. Instead, they responded by saying: “OK. Can we go for a bike ride now?” – Kids these days!

I remember getting amped up for my first telethon experience. I was 10-years-old and my sister and I were interviewed on the local broadcast in Humboldt County, CA. Our total airtime lasted about three whole minutes, but in our minds we were stars!

My television debut - a star is born, lol!!!

Thinking back on how excited I was to be a ‘child TV star,’ I couldn’t help but wonder how it was that my girls took the news of their upcoming TV appearances in such stride. Then it hit me, they’ve been doing telethon their entire lives (Isabelle wasn’t even crawling when she made her television debut).

Filming promo spots for telethon with the girls

Being interviewed by Jann Carl at the 2009 National MDA telethon in Las Vegas, NV. According to the girls, the highlight of our trip was the hotel swimming pool, lol!

Being interviewed on telethon, watching Daddy on TV and hanging out in Green rooms (not to mention gorging themselves on snacks from the Kraft services table) has been a part of their young lives for so long that I think NOT being on with me would seem odd to them.

In thinking about it even more, something else occurred to me – even though neither of them has it, Muscular Dystrophy has been a continuous part of their young lives too.

My girls have heard stories about me walking, but have never witnessed me taking a step. They know I used to jump on trampolines, but have never seen me stand. And they know that I once had strength in my arms, but have never experienced what it’s like to have Daddy toss them in the air. Amazingly, they seem to take all this in stride too!

Look at those bulging biceps!

Buff baby V

On the flip side, they know more than their fair share about wheelchair chargers, breathing machines, hospitals, exam rooms, operating automated van ramps and how to make Daddy pop wheelies (it’s like they’re training me for the X-Games!).

Yesterday after work I took Isabelle and Sammy out for that much requested bike ride. Halfway into our adventure we went ‘super fast’ down a steep hill. Sammy (who was sitting on my lap) turned to me with a huge smile and yelled “you’re the best Daddy ever!” Isabelle joined in with a loud “yeah baby!” I’m not sure I’ve ever seen them so excited.

The girls and I delivered Chinese food for 'Daddy's dinner night'

Sammy rode up front on the way to the restaurant, Isabelle rode shotgun on the ride home - fair is fair...

I’m learning that when it comes to kids, sometimes what we worry about the most or consider to be the ‘big things’ end up rolling off them like water from a duck’s back.

More often than not, it’s what we consider to be the ‘little things’ that mean the most to them.

After all, who needs a Daddy that can run when you’ve got one with four-on-the-floor and a permanent cuddle spot reserved for cruising on his lap! That and tickets to 'Disney Princesses on Ice' go a long way.

All Shook Up!

2011-08-23T19:52:00.000-04:00

Cue the AC/DC, we had an earthquake today that ‘shook me all night (well, day) long’! There I was just rolling out of the bathroom (timing is everything) when I heard an eerily familiar rumble (like a helicopter hovering outside our window). After a second or two, I turned to Casey (I worked from home this afternoon) and said “Love, we’re having an earthquake.” A few seconds later, the house started to shake (sometimes being right sucks, lol!).

When it comes to earthquakes, this isn’t exactly my first rodeo (after all, I’m a California boy!). That said, just because I’ve been through a number of earthquakes in my day doesn’t mean that I like or look forward to them.

This frame bit the dust in our TV room

Our 'family tree' took a dive and the tip broke off

Officially, today’s quake was a 5.8 on the Richter scale, but checking the ‘fancyancey scale’ there was enough shake, rattle and roll to warrant a reading of ‘holy crap’ (note: the ‘fancyvancey scale’ is not grounded in actual science).

It didn’t take long for the girls to figure out something was wrong. They didn’t know exactly what was happening, but they’re certainly quick enough on the uptake to know that the house shouldn’t be shaking (I’m pretty sure they’re geniuses).

Doing my best to speak in a calm and deliberate manner, I called them over to Casey and I where we all rode out the quake huddled in the bathroom doorway. Once the rocking stopped, we all went outside to enjoy the safety of wide-open spaces.

As we were rushing (calmly) outside, I couldn’t help but think about when we bought our homeowner’s insurance policy. The lady from the insurance company made me feel like an idiot for insisting on adding the earthquake coverage (boy did she come close to getting hers today!). But I digress...

Despite feeling a bit anxious about the whole earthquake experience and maybe a little stressed about the possibility of aftershocks, we made it through the ‘Great Quake of 2011’ unscathed (though we’re down a couple of nice picture frames, doh!).

I’m grateful we’re all safe and am feeling blessed to have been together during the experience. I’m not glad we had an earthquake, but I do appreciate the opportunity to draw closer to Casey and the girls.

Family unity doesn’t happen by itself. It’s built, developed and cultivated through our conscious and consistent effort – sometimes the forces of nature help out too.

It’s good to know that when life's challenges arise, our family can huddle together and make it through – even when it feels like the world is falling down around us.

Sixth-Grade Lessons to Last a Lifetime

2011-08-20T20:06:00.000-04:00

Looking at my life, I recognize that I’ve had the benefit of enjoying a great many opportunities that (for reasons I don’t understand) have not been afforded to others in my situation. For example, lots of kids I know grew up in broken homes, but few were raised by women whose strength and courage matches that of my mother. And lots of kids are born disabled, but not all are so blessed as to have modern, stylish-looking, reliable wheelchairs like I’ve had to get me around. The list goes on and on.

It would be foolish for me to believe for even one short moment that I got ‘here’ on my own. The fact is our lives (while different and unique) are each composed of a strange combination of hard work, preparation and good old fashion dumb luck – not to mention the kindness of others.

When I was growing up, my sisters and I struggled to deal with things like living life without a father and having to cope with a disability (Muscular Dystrophy impacts EVERYONE in a family, not just those with the disease). And while we found ways to make sense of things, I feel (again, for reasons I don’t understand), that I had certain advantages that they didn’t – advantages like my sixth grade teacher Mr. Dwelley.

Sixth grade was a big deal for a lot of reasons, not the least of which was getting to go to sixth grade camp. Going to Wolf Creek was (at least it seemed to us) a right of passage, an experience every kid in our school looked forward to – the camp where dreams came true!

Sadly, I wasn’t sure I would get to go.

A year earlier my sister Kathy (who also has Muscular Dystrophy) was told by her teacher that she couldn’t go to Wolf Creek due to her physical limitations and the challenges that would be associated with getting her around the camp. Kathy was crushed. While her friends were at Wolf Creek, Kathy was placed in another classroom until they returned. When they did, she got to listen to them talk about having had the time of their young lives.

And so, as my friends excitedly made plans for camp, I waited for the axe to drop on my Wolf Creek hopes. However, because of Mr. Dwelley, it never did.

After seeing what Kathy went through, Mr. Dwelley resolved to make my experience a very different one. He called my mother and assured her that not only would I get to go to Wolf Creek, but I would have more fun than anyone.

Hearing his resolve (and knowing what a genuinely good man he is), my mother loaded my scooter in the car and dropped me off at camp with my classmates.

Knowing that I wouldn’t see her for a week, I kissed my mother goodbye and watched her drive away. As her car faded into the distance, something interesting happened – I ran over some shrubs, got stuck on a branch and broke my scooter!

My heart raced and tears filled my disappointed eyes as I explained what had happened to Mr. Dwelley. And that’s when the miracle occurred – speaking with an absolute confidence he told me not to worry, that everything was going to be fine.

And he was right.

For the next week, Mr. Dwelley carried me piggyback style all over Wolf Creek. I have no idea how he mustered the strength to do it, but together we traversed rocky trails, made it through the wilderness, went across streams and navigated our way through everything in-between. He cleared every hurdle before us and did so with me on his back every step of the way. What a sight we must have been (two tired stinky dudes each grinning ear-to-ear)!

I wasn’t excluded from a single activity, didn’t miss a beat and had more fun than I could have ever imagined. And because of Mr. Dwelley’s height (he's around 6’3) I literally got to see the world from a whole new (and amazingly beautiful) perspective!

And so it was that through the goodness of a faithful instructor, a man powerfully committed to teaching his pupil lessons beyond those learned from a standard text book and willing to sacrifice his body (you try hiking with a sixth-grader on your back for a week) in order to do so, that I had the experience of a lifetime.

I also learned something valuable in the process: None of us climbs so high, sees so far or achieves so much as when we are lifted onto the shoulders of everyday giants who love us enough to carry us through life’s tough times.

Here’s to wishing everyone has the benefit of a Mr. Dwelley in their lives...

All Work and No Play?

2011-08-14T18:24:00.000-04:00

I figure that since the girls are ‘all grown up’ now (just ask them, they’ll tell you) they need to start pulling their weight. Sure they already do a good job of making their beds, clearing the table and feeding the dog, but it’s time to kick things up a notch.

With that in mind, we packed some fruit snacks, two coloring books and a few princess toys and headed to my office in downtown Washington, D.C. on Friday so I could teach the kids the value of hard work.

From the moment we arrived, those kids had their game faces on. They entered the office and greeted my colleagues with confident smiles and firm handshakes.

Isabelle even gave out her own business cards, which look amazingly identical to mine (except the spot where you’d usually see my name was scribbled over and “Isabelle” was written across the top). As she handed them out she’d say “let’s do business” (with those dimples she’s likely to get more clients than I do). It was adorable.

But don’t let the cuteness of it all fool you, there was serious work to be done (after all, I was trying to build character). Duties for the day were rigorous and vast.

Here’s the basic breakdown of the day’s activities:

Task #1 – Take Inventory: Backpacks were unloaded and each pencil, pen, toy, book and snack was accounted for and placed into its own neat and organized position (nothing beats a clean and tidy workspace).

Task #2 – Snack Time: It turns out that children, like cars, don’t work well without fuel. Thankfully two little bags of delicious Goldfish go a long way to power up any underage workforce.

Task #3 – Supervise Denise: To the untrained eye, our magnificent office manager Denise is the glue that keeps our firm together. One might even say that she’s actually the one who runs the show (though she lets us ‘big shots’ feel like we’re in charge). Not to worry though, Isabelle & Sammy saw right through the charade and took it upon themselves to make certain Denise didn’t cause any trouble. Using such amazing managerial techniques as playing ‘tag’ and ‘hide-and-go-seek’ with her – the girls did an excellent job of keeping Denise in line (phew!).

Task #4 – Power Lunch: Lunch (cheese pizza) was a high-power meeting with a representative from the all-powerful public affairs firm APCO Worldwide (and had nothing to do with the fact that our lunch-mate Bryce is one of my best friends). Using their superior skills of negotiation, the girls wrangled some free ice cream from the restaurant staff (us adults did not have the same good fortune/skills).

Task #5 – R & R: After exhausting themselves on tasks 1-4 the girls polished off the day by watching ‘Barbie in a Mermaid Tale’ while I did a conference call with clients (I’ll let you guess which of us had a better time doing our afternoon work).

It was a ‘rough day’, but the girls made it through relatively unscathed.

And while they’re apt to keel over when they get actual jobs and discover that their daddy painted a seriously distorted picture of what life in the workforce really entails – for now, I’m just glad to have had the opportunity to take my babies to work with me.

Now excuse me – I have to go draw up some contracts for Isabelle’s new clients, she’s got me working on a tight deadline...

The Gift of Consistency

2011-08-11T21:03:00.000-04:00

Having Muscular Dystrophy has, in part, meant having to learn to depend on others in order to do the ‘everyday’ things of life that most people take for granted (things like getting in and out of bed, getting dressed, combing my hair, etc.).

In fact, was I to truly give credit where it is due, the next time someone complemented me by saying “you look nice today” I’d give my wife a high-five. After all, she’s often the one who dresses me in the morning (I guess that means I can also blame her when I look like a dork, right?).

Though Casey has always been willing to assist me, I’ve always tried my best to keep a hired personal care attendant in the mix. The problem is, finding a good attendant (let alone being able to afford one) is MUCH easier said than done. Not only that, but because people move (and life circumstances change) it can be difficult to keep any one person for long.

While we’ve been fortunate to hire some really great attendants, over the years we’ve also run across our fair share of lame ducks (as in having someone say “Don’t worry Vance, I’ll be here early tomorrow so you can make it to your super important meeting on time” and then never hearing from them again). Indeed, its been frustrating at times. But life waits for no man so we have always pulled through and found ways (often creative ones) to make things work.

Because we don’t always have the benefit of a care attendant, its been hard for Casey to do much traveling on her own. That means doing fun things like taking off for a girls weekend or going to visit family have often been sacrificed to make sure I’m OK (while Isabelle & Sammy each have the heart of a lion, alas they can’t quite lug me around yet).

Recently we hired an attendant that we’ve been pretty happy with. With Casey scheduled to head to San Diego this week to visit her sister and meet our new nephew, the timing couldn’t have been better. However, three-days before the big trip, we hit a snag. My attendant stopped coming. There was no warning, no phone call, no texting, no notice of any kind.

In addition to feeling betrayed, we were truly disheartened that Casey’s long planned trip was in jeopardy.

Thankfully, this story has a happy ending (so far anyway). It turns out my attendant had to leave town to deal with a now resolved family emergency. Between forgetting to pack a cell phone and not having Internet access for a day-and-a-half, what appeared to be us getting ditched was something else entirely (I wish I could convey the relief we felt when we finally learned what was going on).

With our confidence restored that all would be well regarding my physical care, I dropped Casey off at the airport yesterday.

As of this morning she had landed safely, had a good night’s rest and was headed to the hospital to see our newborn nephew Scott (yeah!!!).

Life is a strange thing. One minute you’ve got it figured out, then your care attendant doesn’t show up and everything gets upended. The next minute you learn something new and the universe goes right side up again.

Go figure.

The fact is our lives (and their many moving parts) are ever changing, always moving, constantly in and out of turmoil. Perhaps the best we can do is hope to be the kind of people who enable those around us to enjoy the blessing of consistency and success.

That and maybe we can be the kind of people who remember to keep our cell phones on us at all times (I’m just saying, lol).

The Great Outdoors

2011-08-08T22:52:00.001-04:00

For some time now, Casey and the girls have been asking me to take them camping. Their request, while seemingly simple, wasn’t one that I’ve been particularly eager to act on (mosquitoes, dirt, the stench of smoke – what’s not to love!). I’ve done my fair share of camping (I’m actually an Eagle Scout, true story) however, at this stage of my life (remember, this body’s got a lot of miles on it) I much prefer comfort to roughing it.

With that in mind, the girl to guy ratio in my house is such that I never win an argument – which is why a few weekends ago we packed into the car and headed to West Virginia to meet up with ‘Granny & Grumps’ (A.K.A. – the Halts) at their cabin for our first ever family camping adventure!

To say it was truly ‘roughing it’ is probably an exaggeration (though I did have to go without my big-screen...), but it was certainly rough enough to count as a legitimate camping trip (there was an outhouse, enough said).

Being outside my comfort zone (literally) I may have been a little tempted to complain a time or two (something about inhaling/swallowing gnats challenges my mood). But then I’d hear the girls screaming with sheer joy or look over and see Casey soaking in the beauty of the mountains. I’d catch the delicious aroma of food being cooked over an open fire, take a bite of smores or think about the great lengths that Granny & Grumps went to in order to ensure we had a fun experience – and low and behold, any desire I had to complain dissipated.

When our camping adventure was over and we were mid-way through the four-and-a-half hour drive home I found myself thinking about how thankful I am to have supportive family and friends. I think that a big part of why I’ve been able to achieve as much as I have is because I have people around me who love me enough to push me to move beyond my comfy routine. They encourage me to try new things, motivate me to get out there and live life and embolden me to overcome my fears.

It is because of friends and family like the Halts (and countless others) that the storybook of my life has been filled with highlights, not regrets.

If it took swallowing a few bugs to help me come to that realization, I’d say it was well-worth it.

In the Thick of It!

2011-08-03T21:11:00.000-04:00

Life’s important choices are ours to make – it’s a maxim that applies to every situation.

I remember coming back from a date in college. Neither of us had a car so we did dinner and a movie on campus (impressive, right ladies?). The date went well and I may have even gotten a good night kiss at her doorstep...though a gentleman never tells (I totally did!) Needless to say, I was feeling pretty good on my way back to the dorm.

About ¾ of the way home, I came to a section of sidewalk that had recently been dug up and refilled with dirt. Despite concerns that it wouldn’t hold the weight of my chair (it had rained during the movie) I went right to the edge of the sidewalk, looked down and decided to go for it. A moment going forward, I saw an alternate route a few feet away. Choosing to ignore it, I hit the gas – my wheelchair sank like a brick!

Suddenly there I was, stuck in the mud all alone, without a cell phone, in an un-populated area of campus, at midnight – great!

When the full reality of the situation sunk in (no pun intended) I started to get scared. Looking to the left, the alternate route was staring me in the face. I started getting mad at myself for being too proud (or too dumb) to go around the safe way when I had had the chance. Then a thought entered my mind, neither fear nor anger were going to get me out of that mud. I could choose to be upset and freaked out or I could decide to be positive, amused by the situation and hang in there until help arrived. Either way, I wasn’t going anywhere anytime soon.

I decided that since I wasn’t going anywhere, I may as well get some sleep (surely someone would find me in the morning!) As I put my head down, I heard a car start (I was right next to the parking lot of the on-campus art museum). I looked up and saw a guy in a truck approaching the exit. After yelling for him, he looked right at me said “hi” waved, and then drove off! I just kept thinking, “Seriously, you gotta be kidding me!” Clearly, someone was trying to test my peaceful resolve.

A few minutes later I saw a couple holding hands in the distance. They were just close enough that they heard me yell for them. They smiled, waved, yelled “hey” and then continued on their way. Not this time I said to myself. I yelled louder “help, I need help!” When they started walking in my direction I was so happy you’d of thought they were rescuing me from a deserted island.

As they got closer, I realized that lady luck was back on my side. The guy turned out to be a 6-4 German student named Klaus (I’m not making this up). Before I could say much of anything, he pulled my 250-pound wheelchair (not to mention my own weight) out of the mud like he’d been training to do so for weeks. Amazing!

I thanked them profusely and, upon getting the distinct impression that they’d rather be making out somewhere, I left them and proceeded back to my dorm. Later, when my buddies asked about the mud clumps on my tires, I told them I had taken my date off-roading.

I’ve thought about that story a lot over the years because it illustrates a basic fundamental principal: In life, we each sit in the driver’s seat – sometimes we drive ourselves into the mud and other times life pushes us in. Either way, the ability to choose how we respond once we’re in there is always ours.

Happy driving all!

To My Birthday Girl, With Love

2011-07-31T00:11:00.000-04:00

Ever have something you really want to say, but you’re just not sure how to do it? Inside it all makes perfect sense. You know and understand exactly what it is that you’re thinking, feeling and wish to convey, but when it comes to finding the right words to express yourself, things get tough (I’m either a deep thinker or have a very limited vocabulary – the jury is still out!). Try as I might, I have something I want to say, but darn if I still don’t know how to actually say it. Well, I’m going to give it a shot anyway. Here goes...

Life is all about personal relationships. It is after all our friends, family, colleagues, acquaintances and sometimes even the strangers that we encounter along the way that fill our lives with ups, downs and everything in-between. And while some relationships are obviously deeper or more significant than others, I would argue that none is more personal or fulfilling than the one you develop with your spouse.

When Casey and I got married, we were what’s called ‘young and dumb’ (it was terrific!). I knew and understood that I was in love, but failed to comprehend how much the love I had for her would continue to mature with time and experience.

As we’ve struggled to make a life for ourselves, sacrificed for each other’s wants/needs, endured the fears and joys of becoming parents and stood shoulder-to-shoulder throughout the trials and adversities that life has thrown our way – my love for her has grown exponentially. With that growth, I’ve learned more about life, responsibility and joy than I thought was possible. In short, loving her has made me a better man.

When you’re blessed to have that kind of love in your life, you treasure it. Being that today is her birthday, I wanted to get her something really great. You know, something that really shows the love. I looked at jewelry, shoes and much, much, more. Eventually the good people at Williams-Sonoma helped me land on something I know she’s wanted for a long time. The problem is, she found out about it and asked me to hold off on making the purchase (doh!). Turns out, she didn’t want something that cost a lot of money. Instead, she wanted something priceless.

In thinking about what might constitute ‘priceless’ a smile came to my face. I know what priceless is. It’s the way she still closes her eyes when we kiss, the way she rubs my shoulder when she gets nervous, the warmth of her arms around me, the smell of her perfume, the way she brings out the beauty in everything around her, the memories of our all-night conversations about nothing and everything, the dance she does when she really has to go, how her hair catches the sun, the tender way she teaches our girls, the way it feels to hold her hand in mine, the comfort of knowing we’re in this together and of course, knowing that we’re a forever family.

I’m not sure how to put all that into a box so a blog will have to do (think of it as a 21^st Century way to wrap a timeless gift). And while I recognize that I’ve listed things that are priceless to me, I hope that in sharing my feelings, they will become priceless to her as well.

Casey: I could shop till I drop trying to show you how much you mean to me, but there’s no shopping cart (or bank account) big enough to get the job done. Your love has made me whole and your light continues to show me the way. It is an honor to celebrate you and a joy to be your main squeeze. Thank you for all that you do to make this world a better place.

Happy birthday honey.

Proud to Be a Goonie

2011-07-24T19:33:00.000-04:00

It used to be that Friday was ‘date night’ – usually dinner and a movie (hopefully followed by a smooch or two!). These days Friday has evolved into ‘Taylor movie night’ – usually dinner and a movie at the house (followed by reading Dr. Suess and tucking the kids in). My how things change! This week we introduced the girls to a classic: ‘The Goonies’.

In case you need a quick refresher, The Goonies centers around a good-natured group of kids, each of whom is a bit of an outsider (Data is the nerd; Mikey is the scrawny hero to be; Mouth is the wiseguy; Chunk is the klutz; etc...). Facing the threat of losing their homes to rich country club owners, the goonies set off on a death defying adventure to find the lost gold of famed pirate ‘One-Eyed Willy’ in order to save their neighborhood from foreclosure.

In watching the movie as an adult it became clear to me that to one extent or another, we’re all goonies. Each of us is unique (and probably a little weird) in our own special/amazing way and at times, we’ve all probably felt like outsiders. But according to Mikey: “Goonies never say die” so it’s how we choose to deal with our idiosyncrasies and individual “differences” that determines the extent to which we can claim our own goonie-glory.

One of the challenges of growing up with Muscular Dystrophy is watching your friends get stronger while you get weaker. By the 6^th grade I had lost the ability to run. I could still walk, but I was falling so much that it was becoming hazardous to my health. I had already gotten stitches once on my chin, twice on my upper lip, four different times on my bottom lip and once on my right eyebrow (basically, I was putting my pediatrician’s kids through college). So, for my own safety, I was prescribed a wheelchair (actually, it was one of those three-wheel scooters they advertise on TV for old people; the Lark. It was one of those, except I went with the Sierra because I overheard the dealer tell my mom it went faster than the Lark.).

Do you remember how hard it was to fit-in in the 6^th grade? Well, I was no dummy and I knew right away that sporting a Sierra could end me socially (my mom had already reached out to the school and my teacher was roping off a designated parking space for me in my classroom. I was doomed!).

The night before taking my Sierra to school, I laid in bed terrified that I’d become a laughing stock. I thought of all the reasons why my friends wouldn’t like it and why they wouldn’t like me. Needless to say, it was a real bummer. Thankfully, that’s when the goonie in me decided to shine through.

I stopped thinking about everything that could go wrong and started thinking about what could go right. With my Sierra I could pull people on skateboards, my friends could climb aboard and take rides, I could go more places and do more things – I could even stop going in for stitches all the time!

Wouldn’t you know the next day I woke up feeling better about things. When I made it to school I was greeted by the most amazing 6^th graders that ever were. As I think back now about how much fun we all had on that scooter, it makes me smile (you’d think that socially, getting a Sierra was the best thing that could happen to a kid). But it begs the question, what if I had thrown optimism by the wayside? What if I had gone to school, hung my head, and in so doing, taught my friends that a wheelchair is something to be embarrassed about or mocked? That having a disability means you can’t have friends, participate with the crowd, have fun, or be cool? How different would my life have been? How different would the lives of my friends be?

Being a goonie is about more than never giving up – it’s about choosing to live a full and happy life (even when circumstances tempt us to feel otherwise).

It’s not always easy, but just like finding One-Eyed Willy’s gold, the 'treasure' has always been (and will forever remain) worth the effort.

Mangiare! Bistro Taylor is back!

2011-07-19T21:23:00.000-04:00

A few nights ago Isabelle, Sammy and I came home from our evening bike ride (Isabelle rides the bike, Sammy rides me) to find an exciting surprise – Bistro Taylor is back open for business! For those of you that don’t know, Bistro Taylor is an uber-exclusive Italian restaurant in my backyard that opens for a few select sittings every summer.

Part of what makes Bistro Taylor so fun is that I never know when I’ll be lucky enough to get a reservation (though I do have an in with the proprietor). Eating there is always a treat and a welcome sign that summer is, in fact, here. Plus, the food is delicious!

On this particular occasion, the menu consisted of spaghetti and meatballs, garlic bread, caprice salad and parmesan cheese – winning!

As you can see, we were all smiles!

Thanks to my special ‘hungry man’ pills (a.ka. my ‘juice’), I packed it down like a champ. While the girls are steroid-free, they managed to put down their fair share too.

Despite how much we all ate, I’m the only one who made a mess of myself – go figure!

In a day when people tend feel that you can’t have fun without cracking open your wallet – Bistro Taylor is a reminder that you don’t need to break the bank to have a good time.

Yummy food, time with family and seats at the best joint in town – priceless.

Too bad dry cleaning isn’t free too, lol!

Dressed for Success

2011-07-17T19:32:00.000-04:00

Ever notice that men tend to dress better once they get married? The reason for this phenomena is simple – once married, men wear what their wives tell them to. Since my wife’s sense of fashion greatly exceeds my own, I’ve really benefitted from this unwritten law of marriage (though watching her donate my ‘hottest’ college get-ups was rough. So what if it’s been over a decade since those clothes were technically ‘in’ – mock turtlenecks and Doc Martins are classics, errr...right?). For me, it’s more than just a good thing that the love of my life has a keen eye for fashion. You see, unlike most married couples, my wife doesn’t just ‘suggest’ what I should wear – she literally dresses me! (that’s right fellas, my woman is strong AND stylish!)

Having your wife dress you means learning to play nice (you can always tell when I’ve ticked her off on a given morning because I’ll likely be wearing something made of spandex – that means I really messed up!). Sometimes it means learning to roll with the punches (I submit exhibits A, B & C as proof!):

It also means that I have gotten to learn new fun facts about fashion. For example, I’ve learned that I no longer wear ‘pants and a shirt’; I wear ‘outfits.’ There’s also a lot I could go into about how best to ‘coordinate’ based on seasons, but I’d need a color wheel so perhaps I’ll discuss that in a different post (perhaps I should have addressed it in ‘The Sissyfication of Vance’). Suffice to say, being married to my fashion guru has helped me expand my horizons beyond just navy blue (turns out greens, yellows, argyle and pinks all make Vancito one sexy dude!).

Whether looking good means feeling good or vise versa, it’s no wonder to anyone who knows us that Casey has (and continues to be) the secret to my every success.

She’s not Ralph Lauren or Donna Versace – she’s better. Casey is my saving grace. Her love and courage inspire me to tackle life’s challenges with zest and positivity, make me a better man and fill my heart with joy.

All that and she somehow manages to keep me from dressing like a dork; what a woman!

Conquering the Beast!

2011-07-13T21:33:00.001-04:00

Every now and again you’ve got to remind people who’s boss. You’ve got to open up a can, lay the smack down, light something up like a Roman Candle (and whatever other overused expressions/sayings you can think of) and establish your dominance. The trick is to do so in a productive and effective manner without being a jerk (after all nobody likes a tough-guy with an attitude problem), so you may need to get creative (especially if you’re trying to be intimidating while staring up at someone from a wheelchair).

A while ago, Casey's sister bought us a giant orange gummy bear. Oh sure it seemed harmless at first, but it wasn’t long before that disgustingly flavored bear started eyeing me (stop thinking I’m paranoid). I’d move from room-to-room and every time I looked back at the kitchen counter, that gummy thug was staring me down (I know a good stare-down when I see it).

Naturally, I had no choice but to ask Casey to remove the demented candy bear from my sight (I’d have moved it myself, but I can’t raise my arms that high – doh!). She asked me why and foolishly I told her. She thought it was hilarious (how she failed to recognize how incredibly creepy that sugary devil was is beyond me). Casey told the kids that daddy was freaked out by a snack and it was all down hill from there – something had to be done. Order (not to mention my dignity) needed to be restored.

Being the man of action that I am, I knew what to do. It was butt-whooping time!

And so it was that I set my wheelchair to stealth mode and approached my antagonizer from behind (that bear had no clue about the world of hurt I was about to introduce it to). Before it could turn to start staring me down again (I’m telling you, that thing was possessed!), I made my move. Ever seen a lion take down a gazelle? Well in my mind, that’s exactly what it looked like (though probably not so much to the outside observer).

How did it all end? I bit off its tangy ear and that bear never stared at me again – boom baby! Dominance re-established, dignity restored. I came up from the abyss and reclaimed my throne as king of the household (Casey let's me pretend to be king).

Casey documented my awesome takedown. See for yourself:

So what’s the lesson in all this? That a man can only take so much? That you should never buy a giant gummy bear? That I need to stop watching so many horror movies? Maybe. Or maybe it's that life is too short to let yourself get pushed around by anything real (or perceived) and that nothing tastes sweeter than sticking up for yourself.

Though that 'don't buy a giant gummy' thing is probably a good one to remember too.

The Sissyfication of Vance

2011-07-10T21:27:00.000-04:00

Growing up as the baby-boy in a household full of women (two sisters and my mom) was great in that I was well loved (some might even say a little spoiled), but it wasn’t without its drawbacks (try convincing a group of ladies to watch a Laker game instead of the Lifetime movie of the week). And so it was that when I got married, I asked Casey to birth me an army of boys – football playing, hairy-chested, like to watch shoot’em up movies boys! What we got instead are two of the girliest-girls to ever don tiaras. And guess what? If I had it to do over, I’d ask for twelve more just like them!

Having girls has been great. My friends who have boys tell me all about the ‘joys’ of coming home from work only to be dropkicked by wannabe wrestlers or farted on by booger-faced troublemakers (wow, that does sound nice). I on the other hand am typically welcomed home by hugs and kisses, requests for story time and exclusive VIP invites to the hottest tea parties in the land (it’s not always a Norman Rockwell painting, but you get the point). For a guy who never thought he’d get to play the role of Daddy, I find myself surrounded by ovaries and loving life all the more for it. I suppose the only real down side has been what I refer to as ‘the sissyfication of Vance.’ That’s right, these girls have made me soft.

It all started in the delivery room when Isabelle was born and a salty, watery liquid started running down from my eyes. I knew what crying was (after all, I was raised by strong, but emotional women), but I had never been a real proponent of doing it myself. However, as soon as Isabelle came on board it’s like someone turned on the sissy-machine and I started experiencing crazy sensations called ‘feelings’ (scary stuff!). When Sammy was born, the problem got worse. Over the years the frequency with which I have come to experience these ‘feelings’ has increased to the point that I’m lucky just to make it through a Hallmark commercial without shedding a tear or two (don’t judge me, those guys are masters at evoking emotional responses). Pray tell, what in the world have I done to deserve what these girls have done to me? They made me a sissy and I never even saw it coming!

Case and point, yesterday I was looking over some old photos of the girls. As I saw how little they once were, I remembered holding them as babies and thought about how fast they’re growing up. Suddenly my vision went blurry. I knew what was happening. So did the girls (they were sitting on my lap looking at the photos with me). Without saying a word, Sammy grabbed me a tissue and dabbed my leaky eyes. Proud of her thoughtful gesture, her kindness only made matters worse – seconds later the waterworks were flowing (what the heck!).

As I reflect on who I was, who I’ve become and how I got here; I cannot help but ‘feel’ an overwhelming sense of gratitude for the simple and loving way that Daddy’s angels (Casey included) have taught me to embrace the sissy within in order to become a real man. I’m surrounded by women/girls and I love it.

Though it would still be nice to get to watch the occasional Laker game....

'Freedom-Food' & Fun!

2011-07-07T21:37:00.001-04:00

As much as I love a shortened work week, cramming 5-days worth of meetings, conference calls, business-related emails, etc. into 4-days has been a challenge. Thankfully, I’ve got the memory of a fantastic holiday weekend to get me over the hump! And since a memory is only good if you share it with others, let’s take a quick stroll down 4^th of July Boulevard...

We kicked off Monday’s festivities by gorging ourselves on ‘freedom-food’ (see, if you call it ‘freedom-food’ then it’s not pigging out – it’s being patriotic!). Steaks (thank you Holbrooks), sautéed mushrooms, bacon-filled baked potatoes; I stuffed myself silly (to deny myself of such deliciousness would be to let the terrorists win). Did I mention there were homemade desserts too? (to all my single readers out there, here is some priceless advice: Marry someone who knows how to cook – you’ll thank me for the rest of your cholesterol-riddled life).

Here a visual of the food we were rocking:

After dinner, we headed outside to celebrate our liberties by blowing up the backyard (actually, due to certain lame legislators/county officials – they know who they are – we couldn’t get much crazier than sparklers and fountains). Here’s us getting our pyromaniac jollies on:

Thankfully, the Holbrook’s were there to fight any would-be flames of disaster. Justin is an optometrist, but an emergency responder by training (a true renaissance man). Here’s our man in action (throwing down ‘popper’ with authority!)

After lighting enough fireworks to form a nice-sized plume above our home, we looked at our sleepy kids and called it a night. When all was said and done there were smiles all around and everyone left with all their fingers intact, now that’s what I call a good July 4^th!

Hey, life’s all about managing expectations.

Living the Dream!

2011-07-03T22:22:00.001-04:00

I enjoy the social aspects of Independence Day (fireworks, BBQ and hanging out with friends – what’s not to love!), but what makes the 4^th of July so special to me has little to do with sparklers and everything to do with the reality of the American Dream. Thanks to the promises guaranteed to us through the inspiration of our founding fathers and the bravery of my exceptional mother, I’ve lived it every day of my life.

My mother moved to this country when she was just 21-years-old. She came alone leaving behind everything familiar and dear in the hopes that the promise of America was real.

It didn’t take her long to learn that building a life in America is easier said than done; food, clothing and housing – the costs were steep, but she was determined to make it. After all, this was America so anything was possible.

Recognizing that an education would serve as the key to unlocking the promise of this land, she enrolled in evening classes and learned to speak English. To cover the expenses, she took on what some might consider to be ‘menial’ jobs (not because she wanted too, but because she understood that success is a reward worth fighting for).

After a few years she had passed the GED and earned an Associates Degree from Junior College. From there she transferred to a four-year University and received a Bachelor’s Degree in Education. She worked hard, stayed focused and tackled life’s challenges head on. Along the way she got married, had three kids (the youngest of which was a particularly handsome baby boy) and developed a few gray hairs (just enough to look distinguished).

When the day came that she found herself left to raise her family alone; America came through for her. America rewarded my mother’s hard work and educational achievements with gainful employment, access to quality healthcare, homeownership and the hope that despite their challenges, her children could rise to even higher levels of success than she had ever dreamed of for herself.

I cannot imagine how different my life would be had our founding father’s not sacrificed their all to create the promise of America. Nor can I imagine how different my life would be had my mother not sacrificed so much to make a better life for herself and her children. Thanks to their courage, I don’t have to. Instead I live the reality of all this nation has to offer.

And so it is that sometime before the sizzle of the grill reaches my ears or the sight of ramparts bursting in air fills my view, I’ll take a moment to bow my head smile and whisper a prayer of thanks.

God Bless America!

Keeping the Pedal to the Metal

2011-06-30T21:10:00.000-04:00

Every kid should have a bicycle – they're cute, they help build confidence, they provide hours of endless fun and adventure... the list of benefits goes on and on. My first bike was awesome, I named it Pegasus (beauty, power, speed – the name said it all). It had a brown body, black handle bars and a blue banana seat (comfort AND class!). Together, Pegasus and I rode like the wind leaving tire tracks and dust on every square inch of street, sidewalk and back road in town.

Now that she's a big-shot six-year-old, and with the weather being warmer (some might argue it's been too warm even), we decided it's time to buy Isabelle her first real two-wheel stallion. Who knew I'd be the one to get taken for a ride!

The original plan was to pick something up at the thrift store, after all it's a tough economy and riding a second-hand bike never hurt anyone (that's impossible to verify, but you get the point). However, when Casey sent me the following text message (with accompanying photo) from Target, I knew I was in trouble:

Oh Daddy...

See what I mean? My reply was that of a father who knew he'd just bought a bike: "How much?" (as if the answer even mattered by then). And just like that, Isabelle became the proud owner of a new bike.

Since assembling 'Freedom Fighter' (that's what I call her bike – am I a patriot or what!), Isabelle has spent every night this week cruising up and down our street. Since she can't ride outside without supervision, guess who gets to cruise along with her? That's right, your's truly.

Riding with Isabelle has been fun and I truly appreciate the time we're getting to spend together, but I seriously think I'm going to need to invest in some better batteries for my wheelchair (that kid is riding me into the ground!) She pumps those little piston-like legs as though she were prepping for the kiddie version of the Tour De France (I better keep her away from my steroids).

Determined not to get left in her dust, I've been cranking the wheelchair up to 'rabbit' (full speed). I'm keeping pace, but I won't be for long; she's getting stronger and there's no higher speed setting on my wheelchair ('cheetah' would be nice).

She's fast!

Caught her...for now!

In some ways I suppose the experience mirrors life – our kids grow stronger, brighter and more independent while parents eventually age and slow down. It's a tough pill to swallow, but I've seen The Lion King enough times now to understand the circle of life.

The fact is, none of us really knows how long we'll be able to ride along with our children.

With that in mind – here's to hoping we keep the pedal to the metal and exhaust ourselves trying.

Watch Out Barry Bonds – I’m Coming for You!

2011-06-28T21:34:00.000-04:00

A recent experience has reminded me of the cold (and sometime hard) truth that despite how we choose to see ourselves, our self-perception does not necessarily equate to reality. It all started with a routine trip to the doctor for a physical (go figure).

While most men tend to worry about the ‘turn your head and cough’ portion of the exam, I stress about getting weighed. It wouldn’t be so bad (I suppose) if I could just hop on the scale and be done with it, but I can’t, so it becomes a bit of a process. The long and short of it involves Casey transferring me onto a terribly uncomfortable rock-hard slab while multiple nurses take turns staring at us and forgetting (every time!) how to operate the scale.

This recent go around was no different than most, until we heard the nurse call out the figure – 105 pounds (what the what!), I couldn’t believe it. Moments earlier I had been strolling through my day thinking of myself as a beefy guy (for a wheelchair dude), when in reality it turns out I make the Olsen twins look like a couple of fatties (talk about a quick way to deflate my manly ego)!

I looked at Casey, she was NOT happy. Interestingly, she wasn’t nearly as concerned about my ego or self-image as I was. Instead she had the audacity to express what I had overlooked – that this was a major health concern (what nerve she has!). Apparently my doctor agreed because my new marching orders are to go forth and gain weight.

How (you might ask) is a guy with such a limited appetite (such as myself) supposed to pack on the lbs? Good question. Here’s the answer – steroids! That’s right, my doctor gave me the Barry Bonds special – watch out world, I’m on ‘the juice!’

Sure it may make me ineligible for the London Olympics, but after popping these pills like Tic-Tacs I’ve turned into a Hungry, Hungry Hippo. I’m like those Hobbits in Lord of the Rings that require a first and second dinner, I just can’t get enough (it’s like puberty all over again).

While there are some significant side effects to consider, we (Casey, my doctor and me) feel that at this point, the benefits of being on the steroids outweigh (no pun intended) the risks. We’re going to try it for a few months and see how things go.

In the meantime, I’m off to hit the gym – after all, I’m sure my body will look like Will Smith’s in no time at all.

See, there really is something to that self-perception not equating to reality thing...!

Man vs. Blueberry – An Epic Battle

2011-06-26T22:26:00.001-04:00

In life, one person’s burden can often be another’s joy. Case in point – the girls decided it would be really fun to spend Saturday morning working as day laborers (a.k.a. – they wanted to pick blueberries). Joined by our friends (the famous Holbrooks – after all, nothing beats sweating with amigos) I overcame my reservations about the ‘thrill’ of paying money to pick berries in the hot sun and decided to go along for the ride (after all, history has taught me that trying to argue with my wife and two daughters is an exercise in futility). So, with buckets in-hand and smiles (sort of) on our faces, we headed out to Butler’s Orchard.

Doing my best off-road (non-asphalt) driving

We made it down and back - mission accomplished

It didn’t take long to discover that I was out of my element. For starters, there was no asphalt – anywhere (can you believe it?)! Asphalt is a wheelchair-users best friend and this orchard was covered with nothing but dirt roads, gravel and grass (how dare nature be so natural, what gives!). The second sign came when I realized that the only available bathrooms were “Porta-Potties” – doh! Who knew life on the farm could be so rough?

We were facing some serious blueberry bushes

Determined to not let agrarian life get the best of me, I decided to dig deep (emotionally, not literally. No way I was going to pay money to dig ditches too!). I cranked up the speed/power setting on my wheelchair to full and set about cutting some trail ‘wheelchair-style.’ The grass never knew what hit it!

Before long, I was in the thick of it. Bugs were swarming and the sun was blazing, but no matter; I had come for blueberries and darn it, I wasn’t going home without them! With all the strength of a really motivated wheelchair dude I reached out and gripped a blueberry, ready to take my prize – but it didn’t budge. Instead, it stared at me in defiance (a look that said “bring it old man!”). That berry had no idea who it was messing with, for I was not about to be denied.

Breaking out the camera (so I could document the battle), I called Casey to me and with pure resolve in my voice exclaimed, “this is for you babe” (you can imagine how flattered she must have been). I clutched the renegade berry between my tired fingers and pulled with all my might. Silence hung in the air. And then it happened. I heard (and felt) the berry come loose as I plucked it from the bush – victory was mine!

Proof that I may just be the strongest man alive!!!

When all was said and done, we actually did have a great time. Being out and about with the family is always the best way to spend a weekend (even if it means enduring some pretty bumpy terrain).

Casey and the girls filled bucket after bucket with their blueberries and we came home with more than enough to make jam, syrup, muffins, pie and a million other dishes you can make with blueberries (listening to Casey spout off the list reminded me of Forrest Gump’s friend ‘Bubba’ rattling off shrimp recipes).

Look at all those blueberries!

My personal total picked for the day was one berry. It was hard to reach and took a lot of work to pluck, but something tells me that like all things well fought for – it will taste all the sweeter for having struggled to get it.

The air up there!

2011-06-23T21:21:00.000-04:00

If you've been following the blog lately, you know we've been having an issue with our air conditioning – namely that it isn't working (it turns out that a working compressor is a key component of a healthy AC unit, weird huh!). With temperatures rising and my ability to breathe declining (it was like trying to inhale with my head in a swampy fish tank) we took a week of refuge at the ‘Hotel Holbrook.' While the lodging and amenities were great, we checked-out when the proprietors came back from vacation (nothing says “welcome home” like having the Taylor’s living in your house, eating your food and reordering your DVR selections). Facing another week of high heat and humidity before our new compressor could be installed, we made a run for the northern border. Who knew beating the heat could be so much fun!

Our trip north consisted of three main (air conditioned-filled) stops. Below is a pictorial summary of our adventures:

Oh Canada – Ye Land of Wonders and High Prices!

Niagara Falls (No trip to Canada is complete without seeing the falls!):

Sammy LOVED the falls

Nobody said there would be water!

Amazing

Isabelle was proud to be the "wettest" kid there!

I had to pee three times!

Strange brew? (It seemed more like 'strange chips'...)

Yuck!

Seriously, these guys love their ketchup

The Rain Forest Cafe (nothing says "Canada" like a chain restaurant!)

I guess Canadians aren't big on the RFC

Seconds BEFORE the 'indoor' thunder storm

Seconds AFTER the thunder storm started!

The Gardens (not typically my thing, but the girls ganged up on me...)

Best looking family in Canada!

Best pals

Say ahhh!

Does that look like a man who loves gardens?

A few random shots...

Taking a ride on the Queen's Express Way

We all felt safer knowing this guy was around!

A trusted steed

Meanwhile, Back in the U.S.A.

Penn State (go Lions!)

Me and Joe Paterno (sort of)

Eating at Penn State's famous diner - The Corner

What an incredible stadium

The kids treated coach like a jungle gym!

Palmyra, NY (church history tour!)

The sacred grove

Doh! Another garden...

Hanging at the homestead

The girls with their new best friend/tour guide

Taking it in stride

We had a great time on our travels, but are glad to be home again. Thankfully our AC unit got fixed this morning and we're back to enjoying the comforts of our own house again. As frustrating as its been to be temporarily homeless (obviously I mean that in the loosest sense possible) I'm actually glad things worked out the way they did. Really. I mean think about it, when else would we have taken this trip? I guess, sometimes, getting 'forced' into action is the only way to get us to act.

I'll try to remember that the next time something breaks...