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,