06 August 2014

Running for Julie.


Meet Julianna. 

On October 19, 2009, Julianna, a healthy and beautiful baby girl was introduced to the world. By eight weeks, Julie was diagnosed with gastroesophageal reflux disease (GERD). At six months, she was diagnosed with vesicoureteral reflux (VUR), characterized by a retrograde flow of urine from the bladder into the kidney, causing multiple urinary tract infections. The chronic UTIs Julie was experiencing led to a condition known as hydronephrosis, or inflammation of the kidneys. Simultaneous to these diagnoses, Julie was also experiencing chronic ear infections, which ultimately led to ear tube surgery at fourteen months. Before her second birthday, Julie began to experience seizures, which resulted in several hospitalizations. During these hospitalizations, Julie underwent rounds of diagnostic testing, including MRIs of her brain, endoscopies and colonoscopies. She was diagnosed with epilepsy, however, Julie's parents and medical team knew that there was a much more complicated disorder that remained undiagnosed. Shortly after her second birthday, Julie began using a nasogastric tube for feeding purposes. At two and a half, Julie was hospitalized again for more diagnostic testing, including a lumbar puncture to evaluate her cerebral spinal fluid and an electronencephalogram (EEG) to record her brain activity and monitor epileptic activity. It was at this time that Julie was also diagnosed with high functioning Autism Spectrum Disorder (ASD). One month after this diagnosis, Julie had a gastrostomy tube (G-tube) surgically placed and a muscle and skin biopsy performed.

I drafted the above "case study" for a pharmacotherapeutic analysis two years ago during my first semester of nursing school. When I submitted my case analysis there were still many unanswered questions about Julie's case. What else was causing these issues, why were there so many complications, why Julie, etc. etc. etc. Fast forward two years later after hundreds of seizures, hospitalizations, bouts of paralysis, further complications, diagnostic tests, consultations with dozens upon dozens of specialists, and Julie is finally closer to an answer. Three months ago Julie was diagnosed with Alternating Hemiplegia of Childhood (AHC), an incredibly rare and painful neurological disorder. Although doctors suspect Julie has an additional diagnosis, being diagnosed with AHC is paramount for Julie and her family. After being plagued with uncertainty for over four years, Julie and her family are finally able to embark on a new path. A path that will undoubtedly impact their lives forever, providing them with answers, information, and most of all, the support they need and deserve.


All smiles. 

I would imagine that after reading this, you may be wondering why I am sharing such a seemingly heartbreaking story, especially after taking almost (gulp) two years off from writing? Julie's story is not an appeal to pity. My words are not articulated to evoke a reflection of your own blessings or good fortune. I am writing to share the very intimate details of one child's life and the unparalleled hope and positive energy surrounding her. I am writing to celebrate and applaud the awe-inspiring strength and courage that transcends from my dear friend Karen and her husband to their sweet daughter, Julie. I want you, my dear reader, to know that underneath the very real confines of AHC, there is a resilient four year old child who fights every single day for her health. Her independence. Her life.


Could Julie be any more adorable?

Julie and her Therapy Dog, Jack.


Julie, Sleeping Beauty and Addey (Julie's awesome older sister!).

If a four year old child is capable of handling a fight of this magnitude, then surely I am capable of joining the fight. I want to raise awareness for the one in one million children diagnosed with this disorder. I want to raise awareness for the parents of undiagnosed children so that their journey may be less complicated than Julie's was. I want to raise awareness for more research to be done so that the hope for a cure for AHC can actually be realized one day. And so I will run for Julie. On September 21st, I will be running my second half marathon in Philadelphia for Miss Julianna.

When I decided to dedicate this run to Julie, I reached out to Karen (Julie's mom) who connected me with Jeff, the founder of Cure AHC and father of Matthew, who also has AHC, in a matter of minutes. Ah, the wonders of social media! Through the amazing collaboration of Karen and Jeff, I am now able to raise money for the nonprofit organization, Cure AHC (http://cureahc.org/). By running for Julie, I am not only hoping to raise money for the very organization that has steadfastly stood by Julie and her family, but also to raise your own awareness of the debilitating disorder that will continue to impact Julie throughout her life.

As I run for Julie, I also want to share the stories of Julie's journey that serve as a reminder of how celebrated life should be. For within the sadness, despair and angst of Julie's story, there are glimmers of hope, rays of inspiration and bursts of positivity that shed so much light on the beauty of humanity and life as we know it.


Me and Jules. 

And, finally, on a much lighter note, if anyone remembers the calamity that was my first half marathon (I've finally been convinced to share said calamity in my next post), you can surely (hopefully?) appreciate the stories that will most likely (obviously) come with the adventures of my second half marathon.

I invite you to explore AHC by liking/following Cure AHC on Facebook. I also invite you to my personal fundraising page. Please know that no donation is too small.

Thank you, thank you, thank you from the innermost depths of my heart.

20 March 2014

My Love Affair #tbt

A #tbt post from when I was a guest blogger on The Grateful Life...

A special and incredibly grateful thank you to Tricia for providing me with the opportunity to write for The Grateful Life. Many times the inspiration for my own site, www.unwoven.blogpsot.com, comes from here...


I shovel yet another handful of kettle corn into my mouth. My tastebuds delighting when each oh so delectable crystal of sugar dissolves on my tongue revealing a tantalizingly familiar hint of seasalt that keeps me going back for more. I realize that it won’t be long before my teeth start to resent me for the kernels that are guaranteed to get lodged in between almost every tooth. And my body will surely have words with me for blatantly ignoring the suggested serving size and instead opting to enjoy the entire - gulp - seven serving bag. But for now, I will sit here and and savor each sweet and salty bite, hoping that it really isn’t true that once you hit thirty your body changes and you just can’t eat like you used to. Because let’s face it, that means I only have two years and one month to eat like a champ. But that, dear friends of Tricia, is a story for another day.

My tongue mulls over a kernel, while my nose takes in the faint scent of the calming lavender essence evaporating from the candle neighboring my laptop. My ears listen to the wooden candle wick that crackles over the music quietly streaming through my iPhone. From the corner of my eyes I can see the iridescent flame softly dance against the silver votive. And in front me, the bright screen on my laptop stares back at me, expectantly, each key of my worn, but well loved computer anticipating the gentle strum of my tired fingers. Keys that are blind to the inner workings of my complicated mind. The vast white canvas that is my very blank, very untitled google document, unaware of the words that are about to be carefully, selectively ingrained into its pixels. But, perhaps most ironic of all, is how my very own mind is completely unaware of what will soon be tumbling out of it, through my fingertips, appearing on my screen for all of the grateful lifers to absorb.

There are many times when I turn to my computer to empty my mind, feed my soul, nurture my heart, but there are just as many times when I turn to my computer for the sheer fact that I am lucky enough to write, without purpose, without cause, without reason. Tonight is one of those times. Tonight, I will sit back and enjoy the ride that my hands are about to take me on. I do hope you enjoy. 

The thermometer in the car read a balmy, beatiful 68 degrees. Actually, it really only read 68, but my five senses naturally registered balmy and beautiful. Obviously, my left hand immediately gravitated toward the power switch for the front windows. No part of my being could be tempted to press the snowflake button on the control panel that would pump out man made air conditioning. Not when I could drive with the windows down and feel the warm breeze caress my skin and whip the springy strands of my pony tail back and forth. I was running a bit late, in very tried and true typical Courtney fashion, so I could have - should have - taken the maintstream highway that is 101. But knowing my cousin would be beyond understanding of my belatedness, I took the more panoramic route of 280. The slightly lesser frequented highway that I always favored when travelling to and fro my favorite cities. 

Within minutes I was driving past what I once upon a time coined the “palm tree community” upon my first sighting a few years back. Envision dozens upon dozens of sky high, picturesque palm trees literally soaring above quintessential terracotta roofed houses and, ladies and gentlemen, you have my version of paradise. The canopy of emerald fronds that extend off of the champagne skyscrapers allow for the perfect amount of space for the sun to glisten through and reflect off of the poppy hued earthenware of some of my absolute favorite abodes. I let my mind drift into the infinite abyss of my surroundings and head north. Rather than being thrown into the hustle and bustle the paralleling highway would take me through, I drive full speed ahead into a gallery that seems to exist at that moment in time for my pure enjoyment. There are no distractions of urbanization, only shallow valleys nestled between vast rolling hills. The pastures are still boasting their lush green colors before the summer drought sets in and slowly transforms the fields to shades of pistachio and then a season long complexion of ecru. But even when this happens, I know I won’t mind, for the rustic colors provides a sense of nostalgia that inherently bring me back in time. In a few more miles, I drive past the massive landmark Stanford radio telescope off in the distance and I am brought back to the day I ran the ever so popular dish route favored by Stanford students and visitors to the Bay area alike. I see the strapping cows lazily dotting the landscape, and remember their sinewy muscles taking me by surprise as I once ran among them.

I breathe in deeply and am reminded that I was lucky enough to call this geographical simplicity my backyard only a few short years ago. I know that in a matter of miles I will come across the the most outlandish architectural home of route 280. Unofficially known as the “Flinstone House,” I took it upon myself to change its name to the “Dr. Seuss house” when I would point it out to guests. An eyesore to its neighboring residents, I find myself looking forward to driving past the whimsical, brightly painted orange house that looks like it was transplanted straight out of the Lorax. Its quirkiness is a not so subtle reminder to not take life so seriously all the time. 

It’s only been forty minutes, but the warmth radiating from my forearm tells me that I have been kissed by the long, graceful rays of the warm, California sun and I know it will only be a matter of miles before the fog of the San Francisco Bay will cast down upon me. Aside from the astounding beauty offered by route 280, the looming fog is the one constancy I can always count on as I make my way toward the city. Although it temporarily conceals the stunning azure backdrop of the sky, its vast encapsulation transcends serenity to its visitors. When I emerge on the other side of the thick, cool fog, the serpentine reservoir that snakes its way through the valley on my left is as scintillating as ever in the renewed sunshine. I feel myself smiling, knowing that the familiarity of this drive will never get old. 

I watch the thermometer drop a few degrees and know that any second the infamous “South San Francisco: The Industrial City” sign that is tattooed into the hillside by large concrete letters will appear. My eyes are hungry for what awaits me. Miles upon miles of pastel colored houses erase any familiarity of the vernacular I am used to back home. For some, the dense population is overwhelming, but for me it is quite the opposite. Layers upon layers of homes decorate the hillsides with their unique features and I am simply humbled to have the opportunity to drive through such adornment. 

By this time, the landline that my iPhone has become, has died and I am left to my own knowledge of the city to arrive at my final destination. So, of course, I get lost. But any negative connotations that typically accompany “getting lost” are uninvited and stay at bay. For being lost in San Francisco is akin to being set free. I know that I am severely overdue for my arrival at Tricia’s, but there is no hesitation in my mind that she will not only understand, but would have encouraged my exploration of her - and my - favorite city. And so, rather than sweat with trepidation, I embrace the exploration that awaits. And explore I do. I find myself freely rolling up and down the massive hills that are unique to the city, admiring the masterpiece that is the architecture of San Francisco. Not one for fully being able to appreciate all forms of art, I know that this city truly is a one of a kind gallery that can cause anyone to step back and say...Wow. The victorian rowhouses, with their pointed rooftops and exquisite woodwork take me back in time, the narrow breezeways between buildings and sporadic, but astounding courtyards and parterre’s of Twin Peaks fill my lungs with a deep breath of fresh air. Over and over again.

The sun is starting to surrender to the enticing evening fog and I ask for directions. A few genuine smiles are exchanged and I am on the final leg of my journey. Before I know it I am driving in time with the antiquated cable cars and MUNI until I am surrounded by the hip twenty and thirtysomething population of the Marina district of San Francisco. I park my car along a familiar road only a few blocks away from the bay and peer up at the magnificent bay windows that frame each of the houses in this aspiring neighborhood. As I walk to my cousin’s most adorable apartment, my eyes and ears continue to absorb my surroundings, taking note of the carved fretwork; steep, winding staircases; and palms that may not be native to the city, but complement it quite nicely.

Within minutes I am embracing my dear, sweet cousin Tricia, who I prefer to call my friend, as our friendship is something we have chosen, and I know that my love affair with California never quite ended. For the journey that I took several years ago into the vast unknown of California was merely just the beginning. And the drive I make from the heart of one valley to the heart of one city is a simple, but beautiful reminder of this. 

With Gratitude from a Jersey born girl,

Courtney.

29 August 2013

Humbled by love.

I practiced the bridesmaid speech I drafted for my dear best friend's wedding one time and one time only. And I use the word practice very loosely, as it was 4 in the morning, and my tired eyes were in no condition to do anything beyond skimming. I should also point out that I absolutely detest practicing before I do any form of public speaking, professionally or personally. I'll stand up in front of a hundred people and talk my little head off before I willingly stand up in front of an empty room to practice. Although, while we're on the subject, I could easily talk to a wall if presented with the occasion, and probably enjoy it (read: cheaply entertained). But that's different. Talking to a wall is totally different than practicing to a wall. 

As I skimmed over my words, I actually wondered if I would cry when it came time to share my speech with Saadia and Mohsin. Now, mind you, hindsight is 20/20, and I could have won millions had I placed a bet that I would cry. It's what I do. As much as I fight it, I'm a natural born cry baby. And in my 29th year of life, I've fully accepted and embrace what I refer to as my beautiful ability to express my emotions in the form of an essential natural element (read: I've accepted the fact that water will flow out of my eyeballs at anything provoking any type of emotion without a moment's notice). The more I fight it, the more I cry. Le sigh. However, in my delusional state of mind at 4 in the morning, I practically laughed at myself when I pondered if I was going to cry, even going as far as rolling my eyes in typical Courtney fashion. Of course I wasn't going to cry. What was there to cry about?

Ha. 

Back to that hindsight. After introducing myself to Saadia and Mohsin's family and friends, I dove straight into my speech. I should have worn my swimmies. Within thirty seconds, the tears were streaming down my face so quickly that I was at risk of drowning right there in the middle of the ballroom if I didn't pause and resurface for a breath of air. Insert super quick pep talk that went down like this: Get your shit together Courtney! You have 180 people staring at you, already wondering who in God's name is this white chick rocking a sari and now you're blubbering away. This isn't a funeral for the love of God, this is the happiest day of your best friend's life! Fortunately, this enthusiastic self talk scared the hell out of my tears and they temporarily subsided. For the rest of my speech, I was able to keep most of the tears at bay, with only one or two escaping the thick mascara adorning my eyelashes. 

So, why, my dear reader (readers?) am I sharing this moment with you? My answer is simple. I want to look back in ten, twenty, thirty years and remember the way I felt during the five minutes I stood in front of my absolutely stunning best friend and her equally gorgeous husband (side note: they will make the most beautiful babies ever known to mankind to the point that it's really not fair...I'm serious), with tears running down my face. I want to remember the gratitude I felt for being part of a wedding so humble, so true, so perfect. I want to remember looking into the eyes of two souls becoming one and praying that one day I will find a love as deep, as rich, as genuine as theirs. 

And, so, without further ado, I'd like to share with you what I shared with Saadia and Mohsin on their Wedding Day...

It was quickly approaching the early hours of dawn, and I was still staring at an untitled document on my Macbook, the cursor impatiently blinking at me, completely underwhelmed by my lack of words. I had been sitting there for hours, praying to the powers that be that I draft a speech that captures the very essence of my relationship with my beautiful best friend, Saadia, who I met 8 years ago, almost to the day. I had pondered what to write for days, ever since Saadia said, "you know, Court, I want you to speak at my wedding," to which my immediate response was a giddy "Oh my gosh, really?!" while secretly thinking, "Oh my gosh, I had no idea there were speeches at Pakistani weddings!" And yet another obvious lesson learned in our multicultural friendship. 

Eight years ago when I walked up the two flights of stairs to our Townhouse on TCNJ's campus, I never would have thought that I'd be standing here today, taking part in one of the most important days in Saadia's life.  Saadia and I were randomly assigned to the same townhouse, when I was a senior at TCNJ and she a junior. It was practically impossible to not become friends with Saadia, even if one of our initial interactions was when she chided me for waxing my eyebrows (clearly my white girl ways were simply not cutting it) and insisted that I try out threading (I'm sorry...what??). Mind you, it took my anxious mind almost an entire year before I let her place her hands within a ten inch radius of my upper eyelids. And, to this day, as Saadia can certainly attest, everytime I lay down to have my eyebrows threaded, I not only break out into a cold sweat, I turn into a bossypant wearing demanding diva that only Saadia would have the heart to deal with. But, alas, enough about my eyebrows.

Fast forward 8 years later, and a quote from one of our favorite books comes to mind...“a true soul mate is a mirror, the person who shows you everything that is holding you back, the person who brings you to your own attention so you can change your life.”

As I stand up here today, my heart is overflowing with love and gratitude for the person I truly believe is my soulmate in this crazy, but beautiful world we live in. Over the past 8 years, Saadia has become so much more than a best friend to me. Her presence is akin to the very relationship I share with my own sister, which has solidified my belief that everything happens for a reason. You see, I believe that Saadia and I were placed in each others lives not by chance, but by the grace of God, so that we can learn from each other, laugh and cry with each other, share our innermost secrets and deepest thoughts, even the unspoken ones, lean on each other during times of hardship and sadness, and grow together. Saadia has been there for me in my darkest hours, lifting my spirit up, and reminding me that everything will be okay. With Saadia, almost more than anyone else, I can fully be myself, which means she gets the best...and...worst of me, both of which she fully accepts with open arms. 

Saadia’s family has also welcomed me into their home with open arms, to the point where I feel like maybe I have a little bit of Pakistani running through my own blood. I mean, my Punjabi vocabulary grows by the day. I know that dudh is milk, ande is eggs, doi is a large wooden spoon of Ami’s that I covet, and aja can make Ambreen come to me. Need I go on?

Saadia, just as our friendship was meant to be, I fully believe that your marriage to Mohsin is meant to be. Love and cherish your husband with your entire being, with the knowledge that your relationship will be more beautiful than you could ever imagine.  Open your heart to Mohsin the way you have opened your heart to me. Live in the moment with each other. Uplift, support and encourage Mohsin the way you have done for me on so many occasions. Be humble. Be gracious. Be honest. Be you. 

Mohsin, I will have you know that I am very possessive of my friendship with Saadia. Two nights ago before my last sleepover with Saadia, my own mother warned my sister to not impede on our time together, stating that “Courtney will want to spend time with just Saadia before her big day, so make sure you don't hang out with them for too long.” But, from this day forward, I am willing to share my dear friend with you, under one condition. Love Saadia with your entire heart.  Even on the worst of the worst days, know that there is no one else in the entire world you’d rather have by your side. Trust me. And when you get in that first argument with each other, know that Saadia is humble, but stubborn and however stubborn you may be, know that it is no match for her, but more importantly, no argument is worth sacrificing one second of the love you two will grow to have. Trust me on this one, as well. 

Saadia and Mohsin, may you remember today as the first day of the rest of your life together as one. Never stop seeking joy within each other and the love you two will share. Be patient, be forgiving, be compassionate. Have faith in each other, in love, and in life. Let your passion and love for each other light up the lives of your family, friends, and loved ones. I promise that the life you two will discover together will exceed all of your expectations. 

16 April 2013

thoughts on a plane.


It is with very sleepy fingers, no, scratch that, very sleepy everything, that I write tonight. I'm currently 38,000 feet in the air somewhere across the great divide of the east and west coasts with the hopes of sleep somewhere in the near future. I find myself mindlessly twirling my hair, hair that desperately needs a good shampoo after spending the early hours of today in the pediatric emergency department followed by a day of intense traveling - three trains and two planes. Not that I should be complaining, after all I am en route to my second favorite domestic destination (first obviously being hawaii). It's a nice change of pace being up here, completely unconnected from society, if only for a few hours. Yet I find myself being frustrated…with myself…for I have the perfect opportunity to throw myself at my keyboard and write freely, but I'm having such a difficult time. I haven't written in what feels like months, well, actually, it has been months, but I can't stay focused for more than a second, which makes me wonder what the heck is actually going on inside my itty bitty brain. For starters, I feel like I'm being watched. Actually, that statement sounds a bit presumptuous, if not completely paranoid. It's just that I'm trying to get my zen on (something I've been actively working on!) and I can't help but feel like the darling passenger next to me is eyeballing my screen, which makes a usually unaffected me very self-conscious (Is she enjoying my rambling or is she wondering who this crazy girl is or is she now self-conscious as I just called her out?). Of course, I'm now only flattering myself thinking that she has any interest in my meager writing. I'm simply saying that if my fellow american airlines companion was punching away at her computer as I am currently doing, my interest may be piqued and I may or may not sneak a glance or two in the utmost subtle of manners. Which, knowing me, wouldn't be subtle at all. I'm also supremely distracted by the mini cadbury eggs that are practically begging me to eat them. I literally write a sentence, glance down at my overflowing purse, its contents toppling over, think about whether I should indulge, decide that indulging is a must, pluck a chocolate out of the makeshift easter basket my awesome mom packed for me (complete with fake orange easter basket grass), and practically swallow it whole as if I've been chocolate deprived my entire existence. This sequence will naturally repeat itself over and over again until the eggs are gone or my tummy hates me. Actually, who am I kidding, my tummy will definitely be hurting in two sentences time, but my indulging shall continue. Clearly my tummy thinks in the now, unlike my brain. Speaking of the now, the flight attendant is literally an inch from me getting ready to serve up a delish cocktail to 9E that I wouldn't mind indulging in myself if it weren't for its New York City pricetag. Two seats over in 9F I spy my new friend hating his life as he watches his CPA Exam Review brought to you by the one and only Becker (Actually, we're not friends, but in my mind our two minute connection over the dreaded CPA exam instantly made us best friends for life. I also really don't know if he's hating his life, but I would imagine he'd rather be doing anything else besides studying). But, alas, back to my own personal woes of my worrisome mind and why I can't write. This frustration is such an absurdity to me, as I've always relished in the simple joy of losing myself to my computer. It's not as though I have nothing to write about, I think perhaps I have *too* much to write about and simply don't know where to begin. Which is silly, as I am only writing for me (and, now, of course, the passenger next to me…maybe?), so who really cares where I start, what I leave out, what I choose to include. I find myself thinking back to the only time I've ever been self-conscious of my so-called "blogging." I briefly dated a guy last spring who "wrote" professionally. I use that term loosely, as he was more of a social media "writer," who seemed to skip right over the word "humble" in the dictionary and actually made me feel silly about my writing. Feeling this way was, of course, my own fault as my mom raised me to be a much stronger woman than to succumb to the weakness of worrying what others think of me. But, for whatever reason, I fell prey to his pompous regard toward my "hobby" of writing - the equivalent of child's play, which ironically is supremely imaginative and creative - and put my writing aside. Of course it didn't help that I had just began my nursing program at Rutgers, found..and lost..love in someone else (he's an entirely separate post), and cultivated a brand new life for myself. To say the least, I've been exceptionally busy, perhaps the busiest I've ever been, so I've let writing fall to the wayside. I find this to be bittersweet; bitter as there's so much about the past year I want to share with my future self and be able to remember not simply through memories which fade in time, but through my own words and reflections; and sweet because perhaps this is a reminder that my writing is my own passion for me to turn to whenever my little heart desires. Because, truth be told, my mind never stops writing…whether it makes it to big screen of my MacBook Pro really doesn't matter..when the time is right, I will write…

...Something to think about, I suppose...

22 November 2012

A lifetime of gratitude.


When I was younger (read: 18 or 19...which is totes a far way off from my wise, ripe ole age of 28), I'd make a list of things I was grateful for and post it up on my AIM Away Message every Thanksgiving...these were the days before the iPhone, Facebook, Twitter, and the like...you know, when AIM was cool.  My list would start off pretty generically...I'm super grateful for my family. An obvious statement. I'd then list out a few of my closest friends. My MKA sisters. And rather than digging beneath the surface, I would move on to the more materialistic items I was just oh so grateful for...things like my down comforter (because we all know that I love my sleep, so naturally my bed needs to be akin to paradise), my straightener (because how else would I tame my unruly wavy locks), pumpkin pie (because obvi that's not only a turkey day staple, but basically a slice of heaven in my mouth)....the list went on. and on.

Now, don't get me wrong...Am I still grateful for my hair straightener on the days (which may be few and far between) when I actually want to pull myself together? Obviously. And will I still be uber grateful for the 6 pumpkin pies my mom makes every year without fail? Do I even need to answer that?

But, what am I really, truly, from the bottom of my toes to the innermost core of my heart grateful for? So.freaking.much.more.

Since only God knows if I still have access to AOL instant messenger, I thought it'd be most appropriate for me to write my annual "I'm thankful for..." list in a place that has captured some of my deepest thoughts, stories, worries, and memories over the past couple years.

Exactly one year ago, my cousin passed away at the entirely too young age of 27. I saw him less than a week before his untimely death...and then again one last time the morning of his passing. Unfortunately, we never had a final conversation. I was able to give him a tearful kiss goodbye and asked him to send my love to our grandparents in heaven. But there were no words to be returned to me. I think his heart and soul were already with my grandparents during my final goodbye. Fortunately, many of his loved ones, including my parents, were able to talk to him before he was taken away. While I have no idea what most of those conversations entailed, I do know what he told my parents and I will never forget my mom sitting my sister and I down as she replayed parts of their conversation. With my parents sitting by his bedside, he asked them to send his love onto us. He stressed how important it is to know that everything happens for a reason. And above all else, family and love come first. It is for this understated, simple message that I am thankful for. 

It is this message that I remember when life gets tough. When not everything is black and white and I ask God why? I remember this message when I'm having a bad day - the kind where you think the whole world is turning against you and you have the worst luck ever. Those words give me hope, inspiration, and comfort. But I don't just remember this during the off times. I remember this when life seems absolutely, so amazingly perfect. It is this message that reminds me to be thankful for those times too. It is so easy to take happiness for granted, but when we take a step back to express our gratitude for those times, it makes the tough times...a little less...tough. 

So as I sit here and reflect on the past year and all that has changed in my life in such a short time, I realize all that I am grateful for...not just for today...but for yesterday and for tomorrow. 

So on this Thanksgiving Day, before I head to my hometown to celebrate a day of gratitude with my family, I'd like to share my annual "I am grateful for list." 

My girlfriends. Without you, I quite honestly don't know how or if I'd be able to navigate through this thing called life. You are the very reasons why I have expanded my definition of family. Ashley, the sheer fact that I can ring the doorbell to your house and you can embrace me in my tearful moments means more than you could ever know. Saadia, Being able to fall asleep next to my best friend knowing that I am loved and will always have someone to listen to me...over and over..and over again is something I will never take for granted. Tram, Christine, Tricia, and Jess, knowing that we can go weeks without talking and still pick up where we last ended is quite simply the best. Natalie, who else can I facetime at 6:45 in the morning and ask to call me back in fifteen minutes to make sure I get out of bed and start my day?! Kate and Emily, I don't know anyone else who would put up with me as a roommate. Mtk, I wouldn't want to crash a vacation with anyone else but you. My nursing school friends, my luna girls, and all of my girlfriends, whether you are in my life for a short period, or here to stay, I am thankful for you.

My sister. We fight...a lot. And I can only guess that we always will. But no one makes me laugh the way you do. I am so grateful for you and Bryan and your absolutely over the top, 100% hands down out of control, completely inappropriate shenanigans. You two remind me to not take life too seriously and I thank you for that. 

Connor. Oh Con Con. If you only knew how much you have changed my life...I am literally tripping on gratitude for you. I secretly thank your mommy and daddy for bringing you not only into this world, but into my family, on the regular. 

To those who have shown me what it means to find strength from within...and when that's not possible to know that it's okay to lean onto others. My little Avery and your family. My cousin and her family on this first Thanksgiving without her brother. To my patients at the children's hospital, your resilience and unabashed personas are beyond refreshing. 

Karen and Julie and the rest of the Shuberts. I am so beyond grateful to be surrounded by people like you. I can only hope that I follow in your footsteps. Your strength is unparalleled, as is my admiration for Julie's journey at such a young age. 

To the two homeless men who *just* knocked on my door asking for money. I'm naive and vulnerable to those who ask for help. But the sheer fact that you offered to work for money by raking my yard is something I am grateful for. While some may scoff at this or scold me, I appreciate your humbling words.

My parents. Your support during yet another life change of mine over the past year is undeniably unwavering. I simply could not be more grateful.

...and on that note, for my pseudo father, Andrew. My gratitude for your guidance can never be fully expressed.

To all of the kind people in this world who volunteer their own time for whatever cause is worthy to them. Living in a world where people give back is the only kind of world I want to live in....for this I am thankful. 

For the friends who have entered my life this past year...you know who you are. I don't know what the future has in store for me or for you, but I am thankful for your presence in my life this year. And for all my friends who have been with me through thick and thin. I love you.  

I am grateful for the experiences that have defined this past year...Watching my first C-section delivery and being able to bring a newborn to his parents could not have been more of a sign that I am in the right profession. The words of gratitude expressed to me by these new parents warm my heart to this day....Knowing that I have a physical therapist who is helping me to run again after years of misuse and overuse brings a smile to my face. So thank you, skinny chicken legs for putting up with me and my refusal to quit. Who knew that you could teach me the value of patience. And thank you to my chiropractor for instilling more wisdom within me than you'll ever know.

I am also thankful for being able to spend this past summer with a truly amazing person who will always have a piece of my heart. You have taught me so much about love. 

And, of course, I am thankful that on even the toughest of days, I can go home to little Molly and Mia and they will be waiting to greet me with a million kisses. 

And finally...thank you to little ole' me. I appreciate the patience I have learned to have with myself and my ability to let go, let love and light in, and most importantly, be kind to myself. 

...To my loved ones in heaven, Brent, Grandmom, Pop, Pop Pop, Mindy Lou and everyone else...Happy Thanksgiving from here on earth :)

28 April 2012

happily ever after.



I fumbled for the zipper of my down jacket and pulled the hood of my sweatshirt close to my face, its fleece lining softening the sharp edges of my cheekbones. I didn't remember it being so chilly when I walked to class just a few hours ago. When the golden embers of the sun were still cascading through the tangled branches of the oak trees that lined the familiar sidewalk to class. The dark curtains of the evening sky were drawn now, the icy stars replacing the little bit of warmth offered by the sun earlier in the day. With very few people out and about on campus, I suddenly felt very alone. I quickened my pace and hurried to my car where the allure of warmth and security awaited me. I slid into the drivers seat and caught my breath, watching each exhale dissipate into thin air until my breath was finally concealed by the heat blasting ravenously through the air vents. As I drove away, I found that the feeling of loneliness wasn't as fleeting as I'd hoped it would be. 


Truth be told, I didn't really know where I was driving to. All I knew was that I was done with school for a few days and I didn't have to be anywhere in the world. And what a remarkable feeling that is. To be free. Independent. Alone. 


So I did what any single, unemployed 27 year old with no obligations would do. 


I went to the nearest supermarket. 


(Oye Ve. That's the best place you can come up with, Court? The supermarket?!)


I will whole heartedly admit that I loooove me some serious grocery shopping. When a store is hustling and bustling with elderly people slowly pushing their carts; couples in love, walking lazily hand in hand; women being followed by mischieveious husbands sneaking junk food into their carts; young moms and dads with toddlers pitter pattering down the aisles to the beat of their own drum; I am oddly at ease. I will spend a solid hour (or two...yup, I am that girl) walking up and down each familiar aisle, surveying new products, sampling fresh produce, and relishing in the simple joy of exchanging a smile, hello...even the excitetment shared by two strangers over a new flavor of hummus. It gets me.every.time.


An unfamiliar supermarket is different. You walk in and haven't the faintest clue where anything is. There's no familiarity for your mind to resonate with. And with no glasses to peer up at the signs that seemingly float above each aisle, that feeling of loneliness embraced me again. I didn't even know what I was doing here. And so I wandered absent-mindedly up and down each aisle. I had drifted over to the frozen food section, an empty cart in tow, and passed an elderly man slowly making his way down the aisle. He was 70, maybe 75, if I had to guess. And, he too, was alone. Other than this small observation, I didn't pay him any attention. I suddenly became aware of my craving for something sweet and opted for ice cream as my dessert for the evening. Being that I was smack dab in the middle of Lent and I had faithfully agreed to give up chocolate, I knew I'd have to settle for a less than satisfactory flavor (read: anything without chocolate is subpar in my book). Chiding myself for giving up all forms of chocolate, I peered through the frosted glass panes, hoping that I'd find a pint, no, actually a half gallon, of ice cream that was uber delish. I was on my way to inspecting my fifth or sixth carton (none of the flavors were speaking to me!) when my eyes made contact with the eyes of the gentlemen I passed earlier in the milk and orange juice section. Chuckling, he asked if I too was looking for mint chocolate chip ice cream. "Oh, no," I replied, "Sadly, I gave chocolate up for Lent. But if you're looking for mint chocolate chip ice cream, you must go with Turkey Hill. It's the best!" To which he replied, "that's actually the kind I'm looking for!" Suddenly I became a woman on a mission determined to help my new found partner in crime find our favorite kind of ice cream. If I couldn't indulge in the delectable goodness that is Turkey Hill mint chocolate chip ice cream, than surely at the very least, this elderly man could. "I promised my wife I'd bring her some home," he cheerfully stated as I dug through the cartons, making a complete disaster of the perfect arrangement of ice cream concoctions. "She just had heart surgery, you know," he continued. "And all she wanted was mint chocolate chip ice cream when we finally got home. I figured it was the least I could do for her." I looked up at my new friend, offered him an understanding smile, and he continued to tell me about his wife. Her heart surgery. The stents the surgeon had placed in the heart of his one and only. His other half. His better half. As he spoke, I listened and realized that his words were not meant to evoke my sympathy, or even my compassion. He spoke these words for himself and I happened to be a bystander...a recipient of his innermost thoughts and feelings. Right there in the middle of a grocery store with a backdrop of dozens upon dozens of ice cream varieties, I was the lucky ticketholder to a happily ever after monologue.  


The love this elderly gentlemen had for his wife of 50 plus years was intoxicating. Refreshing. Inspiring. Suddenly I didn't feel so alone anymore. You see, where there is love, one can never truly be alone. The genuine, palpable love shared between two people - even if they were strangers to me - erased my feelings of loneliness. Their love radiated to the depths of my own soul so that it was impossible for me to feel alone.


My friend and I eventually parted ways, him with two cartons of ice cream for his wife (just in case she didn't like the first one we picked out) and me with my nonchocolate subpar peanut butter swirl. 


This story happened months ago. And now, as I lay here - alone - in a plush, sensual bed, clad in nothing but pure white linens, in a gorgeous hotel in romantic Monterey, California, I think back to this story.


Tomorrow my west coast best friend will be marrying the love of her life. Her soul mate. Her other half. Although the love that is shared between her and her today-fiance, tomorrow-husband is still so new and fresh, I am reminded of my once upon a time friend in the ice cream aisle at a local grocery store. Although I am laying here alone - quite literally - I don't feel so lonesome, for I am surrounded by the love and romance of a very fabulous friend and her fiance, family, and friends. And when I close my eyes and think of my friends, Tram and Raj, exchanging their vows tomorrow afternoon, I think of a love that is raw. Real. Timeless. But most of all, I think of mint chocolate chip ice cream and the happily ever after that will follow today and forever into their future, just as it did for my pal in aisle 12 at the grocery store. 


Congratulations, Tram and Raj. The bond you two share will provide you with a lifetime of happiness, laughter, and love. I am so incredibly happy for your future together. I love you. 

29 March 2012

it's a small world.

"It's a world of laughter
A world of tears
It's a world of hopes
And a world of fears
There's so much that we share
That it's time we're aware
It's a small world after all."

It was my favorite ride at Disney World growing up - It's a small world, that is. I was fortunate enough to experience this ever so popular musical boat ride on numerous occasions as a child, but was perhaps too naive to truly understand just what exactly it meant to be living in a "small world." So instead of concentrating on some underlying theme, my eyes would widen with fascination at the myriad of colors, costumes, and imagery that only Disney could create.

As I grew older, the phrase "it's a small world" became less about the whimsical Disney attraction and more of a common idiom I'd use when I encountered people in the most unsuspecting places. How many times have we each exclaimed, "Oh my goodness, I had no idea you live in this town! You know her, too?! It's such a small world!" Of course, at the ripe old age of 27, I now understand and appreciate the meaning of "it's a small world" and its universal application to international unity and world peace. Only now this phrase hits closer to home than it ever did before. It strikes fiercely within the depths of my own heart at a level that doesn't necessarily parallel world peace and it certainly surpasses the superficial unexpected encounters we have with random people we bump into at the local grocery store. As I sit here tonight, the time quickly approaching 3:00am, I reflect upon the past few months and think to myself...there’s so much we share, that it’s time we’re aware it's a small world after all.

And this is where the story of Brent begins.


[brent]

At the innocent age of 12, my cousin, Brent, was diagnosed with Crohn's disease, an inflammatory disease of the intestines that may affect any part of the gastrointestinal tract, and Primary Sclerosing Cholangitis (PSC), a chronic liver disease caused by progressive inflammation and scarring of the bile ducts of the liver. With no family history of Crohn’s, there really was no rhyme or reason as to why Brent was diagnosed with an autoimmune disorder that has no cure. But in the typical Brent fashion we all knew and loved, Brent was a trooper and battled the onset of Crohn’s, not allowing it to triumph over his daily life.

Fast forward 10 years later and Brent survived more challenges and complications from his Crohn's disease and PSC than most people will face over a lifetime. And despite all of this, Brent still could not catch a break. In July of 2010, at the age of 26, Brent was diagnosed with Cholangiocarcinoma, a cancerous growth in the ducts that carries bile from the liver to the small intestine. So why does a 26 year old get diagnosed with a supremely rare cancer that typically affects those older than 65? While it's not certain, studies do show that patients with cholangiocarcinoma plus PSC seem to have a higher prevalence of Crohn's disease.

In April of 2011, I participated in a 200 mile relay to raise awareness for organ donations, as there will always be a question of whether or not fate would have changed its course if a liver had been available for Brent. At this time, Brent was defying the odds, undergoing chemotherapy in a two week on, one week off cycle, and proving to the world that nothing could stop him. And nothing did. For the 17 months following his initial diagnosis, Brent fought the good fight. And he did so with a complaint free, positive attitude that we should not only admire, but start adopting. (Writer's note: I can't remember the last time I went a day without complaining). On November 22, 2011, God chose to stop Brent's suffering, end the pain, and lift Brent's spirits to a far better place. With tears stinging the corners of my tired eyes, I can confidently say that Brent did not quit in his battle against Crohn's, PSC, and Cholangiocarcinoma. God knew a cure was not to be found and freed Brent of his struggle. A concept that has brought infinite amounts of heartache to Brent's loving girlfriend of 8 years, as well as his siblings, parents, aunts and uncles, cousins and friends.


It's been 4 months since that fateful day and not a day goes by where I don't lift my face to the stars and search for the light of my cousin shining down on the hundreds of lives he touched. It's hard not to think of how life would be different if Brent was never diagnosed with Crohn's disease. And it's nearly impossible to find a silver lining in something as tragic as the death of a loved one at such a young age. Yet, I like to think that I have.

And this is where the story of Chris begins.


[chris]

I met Chris the day Brent passed away. Brent was one of Chris' closest friends and Chris was one of Brent's closest friends, both incredibly active, selfless volunteers of the Hopewell Fire Department. Within minutes, I easily discerned the palpable bond shared by these two men, which added more weight to my already heavy heart. To observe their brotherhood - like that of so many of Brent and his friends - dissolve was absolutely heartbreaking for even the toughest of hearts. Over the next week, during Brent's funeral arrangements, I became more acquainted with Chris and learned that he, too, has Crohn's disease. After four years of being misdiagnosed, Chris was finally *and* correctly diagnosed with Crohn’s disease by the doctors of UPenn in 2008 at the age of 29. Complementing the right medication, Brent was able to guide Chris through the crappiness that is Crohn’s disease (pun intended), allowing Chris to be who he is today, which is one kickass guy. I know this, because with the passing of time, Chris and I managed to stay in touch (huge shoutout to Facebook!), for which I am utterly grateful. Although Brent and I were incredibly close for the first 18 years of our lives, we naturally parted ways after high school. Having a connection with Chris, a person who knew the Brent I didn't fully know for the last 9 years brings warmth and comfort to my heart and soul.


And it just so happens that Chris introduced me to a very special little girl and her fabulous family.

When I quit my full-time job in January 2012 to go back to school for a second degree in nursing, I knew I would need some type of income (the Bank of Courtney is ummm....let’s see, how do I say this...non-existent?), so I reached out to my friends/family on what else but Facebook (seriously, if you don’t have Facebook, get on the bandwagon already!). Within minutes, Chris messaged me and said his friend, Mark Bovenizer and his wife, Amy, were in need of a babysitter for their two girls, Paige, 5, and Avery, 2. And just when this world couldn't seem smaller than it already is, Chris informed me that Avery has Crohn's. Through Brent, a Crohn's patient, I was introduced to Chris, a Crohn's patient, who was now about to introduce me to the Bovenizer's and their darling little girl, Avery, who is also a Crohn's patient. Pardon my French, but Holy Sh*t, if that's not a small world, than what is? I am an avid believer that God, the universe, or whatever higher being you choose to believe in, opens certain doors for us. What we do or don’t do with these doors is up to nobody else, but ourselves. And so it was my choice to start babysitting Paige and Avery, for my heart was absolutely positive that Avery and I were destined to meet.


[avery]
I have been babysitting the Bovenizer girls for 3 months now and I am.in.love. They are, without a doubt, two of the cutest little girls I know (and no, I'm not biased. Okay, maybe a little). Quite simply, they tickle me pink. Confident, sassy, and beautiful Paige is so very protective of her younger, fearless, firecracker of a sister, Avery, now three. I don't think of babysitting the girls as a job, but rather as one hell of an awesome playdate, where I am humbled by the honesty, compassion, and imagination of two remarkable little human beings. And yet, a part of my heart is torn each time I see strong, little Avery with a tube running from her tiny back, across the soft curve of her left cheek, into her itty bitty button nose. This tube is essentially Avery's lifeline. After months of blood tests, endoscopic procedures, and doctor consultations, Avery was diagnosed with Crohn's disease. This nasogastric (NG) tube provides Avery with the formula, medication, and probiotics that are necessary for mitigating any signs of inflammation and bowel problems and keeping Avery a very happy, little girl. Although Avery is very accepting of her disease and the accompanying NG tube, I promise you there is nothing more heartbreaking and soulwrenching than consoling a toddler as you force a tube into her nose.


[paige and avery]
After I accepted the fact that I would not be able to participate in The Relay this spring, I started searching for another run...another cause. So when my mom handed me a brochure for Team Challenge, the Crohn’s & Colitis Foundation’s endurance training and fundraising program, I obviously knew that the universe was knocking right on my front door (Have I mentioned how much I love when the universe opens a new door for me?!). Through Team Challenge, individuals can run or walk 13.1 miles or train for a triathlon or cycling event while helping to find a cure for Crohn’s disease and ulcerative colitis, two chronic and often debilitating digestive diseases that impact 1.4 million Americans, three of which are near and dear to my heart. After a few e-mail exchanges, I was on my way to signing up for my first half marathon (woot. woot!).

But, first, just for good measure, apparently I needed to see just how very small this world is.

And this is where the story of Andre begins.


[andre and shane]
I was making my way toward Starbucks in a local mall to meet with the Team Challenge Endurance Manager and heard someone yell out my name. I spun on my heals to see two of my former Ernst & Young co-workers, Jim and Andre, headed in my direction. It's amazing how deceiving time can be. It had been quite awhile since I had seen these guys, but it was as though no time had lapsed at all. It was as though we were all back at Ernst and Young, joking around, enjoying our lunch breaks together during the good ole days. As I excitedly told them I was about to sign up for my first half marathon, something clicked in my brain and I recalled that Andre once told me that he had Crohn’s. Andre, now 34, was diagnosed at the age of 21. Happily married, him and wife are getting ready to celebrate the first birthday of their firstborn (I have not met their baby, Shane, yet, but based on Facebook pictures alone, I seriously want to gobble him up, he’s so stinkin’ cute!). And, just like Brent had to, and just like Chris and Avery have to, Crohn’s is a demon lurking in the background that Andre will always have to deal with, as, sadly, it will never go away.

As we parted ways, agreeing to meet up for lunch in the very near future, I closed my eyes and thought of Brent. My heart will always have a scar from the void left by his passing, but it now has the footprints of three new people. Three incredibly awesome, strong, empowering friends who don't let the harsh realities of Crohn's disease define their lives, just like Brent didn't. I opened my eyes and made my way to Starbucks, thinking to myself...this really is a world of shared hopes and shared fears. It is *such* a small world.

I would like to thank each and every one of you who took the time to read my story. Really, Brent's, Chris', Avery's and Andre's story. In an effort to celebrate each of these individuals, I am participating in my first half marathon on June 2nd, in Loudoun County, Virginia. It is my goal to raise over $3,000 to support research funding, educational material for newly diagnosed patients, and "space safe" for pediatric patients. I completely understand that times are still tough (hello, I am a full-time student, with full-time bills, and *no* full-time job), but please know that every penny counts. Even a $1 donation helps make a difference.

Please visit my fundraising site @
https://www.active.com/donate/virginia12newjersey/NJCWilson
for more information and how to donate. From the bottom of my heart, the heart of every person diagnosed with Crohn's disease, and from their loved ones, I thank you. My heart is full of gratitude for you.

With infinite amounts of love in a very small world,

Courtney