Welcome to my website...HOPELOVELIVE.COM!
This site was started in the Spring of 2015, three years following a catastrophic ocean accident my husband suffered in Maui in 2012.  I turned to writing as a way to heal, and process the devastation and loss that occured after such a tragic event.

​LOVE and HOPE were the two basic elements which guided us through the darkest of days, and helped us celebrate the victories and triumphs that happened on my family's road to recovery. 


​My essays are a window into my heart and soul, and are a reflection of my the spirit and attitude my husband, my children, and I have chosen to exemplify.

You will see that while everything changed with every aspect of our day-to-day life, nothing changed with regards to the incredible love we have for eachother and our children. 

I hope you enjoy reading them as much as I enjoyed writing them.  There is a special story in my list of essays that was written by my son. I'm hoping to make it into a children's book. It just might bring you to tears.

I also share some information which you might find of value, including how to navigate through the medical industry should you or a family member ever fall ill.

To read any or all of the essays I have written since I began writing in 2015,
​please click on button below...

For those who have graciously given your time to caregive, I have a special "Caregiving" section for you too.  To learn some special tips, such as travel or transfers, please go to the "Caregiving" tab or click HERE

  Each summer, during the mid 1970’s through the early 1980’s, my grandparents took my siblings and me to Marine World in nearby Redwood City, Ca. for a day of fun and adventure.  Back in those days Marine World didn’t have roller coasters or water rides to keep us satisfied and entertained. Instead, it was the performances by some of the marine mammals, and other animals typically found at the zoo, that captivated us and kept us on the edge of our seats.  Our trip was not complete unless we got seats for the very-popular, and always sold-out dolphin show.

  To the beat of silly, bluegrass music the well-trained dolphins jumped through hoops, danced in circles, and splashed water upon those brave enough to sit in the first four rows. For thirty minutes the trainers, and their trainees, captured our attention creating an image of wonder and excitement. The annual trip to see the dolphin show at Marine World became my favorite part of summer.

  In time, after our many visits to Marine World, I became pre-occupied and obsessed with anything and everything dolphin.  I checked out dolphin books at the library, wrote reports about dolphins in school, hung dolphin posters in my bedroom, doodled dolphins on scratch paper, even lounged in “dolphin” shorts every day in summer.  I was drawn to those effervescent, & seemingly friendly creatures, and aspired to a career working with them in some form or fashion.

  By the fall of my senior year in high school, during the time college applications were due, my friends were applying to as many colleges as possible or to as many as their family’s budget would allow. I, on the other hand, had a different mindset.  Like many teenagers filled with hope and aspiration, I didn’t give my college choice much thought beyond what my heart had already desired. My naivete had a full grip on my thought process, without heeding any guidance from mediocre report cards or SAT scores. Ultimately I would put all my eggs into one basket. I applied to just one school; the school I believed would advance my dream to work with dolphins. For me it could only be: UC San Diego & The Scripps Institution of Oceanography, or bust.
  
  During the later-half of my senior year, after an agonizing four-month wait, an envelope from: “The Office of Admissions at UC San Diego” had finally arrived in the mail. Inside the envelope was a letter with mixed news: I was accepted to their campus under three conditions: I had to maintain my GPA for the remainder of the year, get an “A” in Advanced Biology, and at least a “B−” in English. I felt confident that getting an “A” in Advance Biology was achievable, considering it was the subject I liked most, taught by a lenient teacher who routinely offered extra credit to bump up grades. On the other hand, earning at least a “B-” in my English class, which was taught by Mr. Larry Johsens-one of the toughest teachers at Saratoga High-would be much more challenging. 

 Mr. Johsens was a rare combination of likability and toughness. On the one hand he was very laid back and easygoing. During book discussions he leaned back in his chair, hands clasped behind his neck, legs stretched out in the center of the room. The timbre of his baritone voice matched his cool and collected demeanor.  On the other hand Mr. Johsens was strict. He set high expectations and standards for his students. He was unimpressed with fancy book-report covers, or essays filled with superfluous word count. He valued excellent writing skills, rewarding quality over quantity.  He was considered a tough grader by nearly every senior enrolled in his classes. It was rumored that only two or three students were able to earn an “A” in his class each semester. I was concerned that my lack of enthusiasm for reading and writing, coupled with Mr. Josen’s strict grading policy,  might sink my chances for getting that “B-” or better in English.

By mid-April things were going swimmingly in my Advanced Biology class, but unfortunately things weren’t going so well over in my English class.  No matter how hard I tried, or how much extra time I spent doing homework, I was getting one “C” after another…after another.  The sting was made even worse knowing that my older brother sailed through Mr. Johsen’s class the year prior, and was the recipient of one of those coveted “A”s.

  With a sense-of-urgency that couldn’t be quelled (and bordered on panic), I went to see Mr. Josens after school hoping for answers. Choked up and teary, I sat and listened.  He explained that writing a good essay was tough. It wouldn’t always come easy.  Some students have “it”, most don't. The "it factor," as he called it, was the ability to write in such a way where everything flowed together from one sentence to the next.  Having "it" (he gestured using air quotes) wasn't necessarily a reflection of effort. He told me that quality was more important than quantity. He couldn’t care less if I turned in a ten-page paper, if I could get it done in two he would be more impressed. “Be succinct...engage the reader.” he said.  Although I asked for a solution and a remedy to combat those chain of “C”s, he could only give me advice. He knew I was frustrated, but the art of writing wasn’t going to happen overnight.  He told me, “Never Give Up. The best thing you can do for yourself is keep writing, and read an hour every, single, day.” He predicted that if I followed his simple advice, one day a light bulb would go off in my head. It would be the point when I could write freely without thinking about formulas and writing steps. It would be an epiphany, and I would just know when I had obtained the “it” factor.  As much as I appreciated the time he took to meet with me, I didn’t have time to wait for that “epiphany.” I needed to get my grade up NOW, for time was ticking away.  

  For the next month-and-a-half I poured my heart and soul into the final, heavily-weighted,  persuasive essay.   Every day after school I went to the library to research and take notes about the health hazards associated with smoking cigars and cigarettes. Resorting to the style I knew best, and against the advice of Mr. Johsens, I settled for quantity over quality. Plowing through a stack of 100 flashcards, and investing at least 30 hours of time, I turned in my 25-page persuasive essay after a night with no sleep. Because of the time it would take my teacher to read and grade over 150 papers, I wouldn’t know the results of my final grade until after I graduated.

  In early July, nearly a month after graduation, my last report card finally arrived in the mail. The direction I would take in the fall would hinge on this one piece of paper. With nervous anticipation I peeled open the report card, hoping for the best. The first grade at the top of the list was for Advanced Biology.  I was relieved I got that much-needed “A.” My eyes skipped over the new few subjects...Civics, Physics, Orchestra, and Auto Shop...and locked onto the last subject of the last row: English 4A.  I took a deep breath and hesitated. Eventually I found the courage to look right at the column of grades. There it was in big, bold, font..C+..."C+?...This can’t be right! There had to be a mistake!" I screamed. But in reality there was no mistake. The grade was the grade. My heart sank, I was shocked and devastated. What about all those sleepless nights working on that persuasive essay, or that long discussion with Mr. Johsens, or all those days thinking about and worrying about my English grade?  At the end of the day it didn't matter, because ultimately I came up short by a half-grade.  It was only a matter of time that the official denial letter from UCSD would follow.

  In the blink of an eye my world came crashing down. I ran to my bedroom, threw myself onto my bed and cried non-stop for the next few hours. I was crushed.  Up until now I hadn’t asked myself the “What if you don’t get in?” question. I had no Plan B, or Plan C, I simply had no plan.  As a result, the proverbial basket where I had put all my eggs, was now full of broken shells and dashed dreams.

  For the next 24 hours I allowed myself to grieve. But when the tears dried up, and I got tired  listening to the same Journey and Foreigner songs over and over, I put an end to my pity party.  Crying about it at this point would just be an exercise in futility.  Dreams awaited me. I wasn’t willing to give up. There might be another way, I thought. I could give it another shot and appeal the decision, but an appeal would only be viable if I could get that lousy C+ raised to a higher grade. The person who held the key to that possibility was none other than Mr. Johsens.

  Immediately my sense-of-urgency clicked back into high gear. I needed to get a hold of Mr. Johsens ASAP. The next day I woke up early and drove down to the school hoping for an opportunity to talk with him.  Although the school office was open, the door to Mr. Johsen’s class was locked. Panicked, I ran back to the office. The administrators told me Mr. Johsens didn’t teach summer school, and was on summer break until early September. That was too late! I poured out my soul and told them my story of woe. I asked for his phone number, but they declined. Giving out private information wasn’t allowed. No matter how much I begged, no matter how many tears streamed down my face, they wouldn't budge. But seeing how upset and anxious I was, they at least agreed to give him a phone call to let him know I was trying to get in touch. They warned, however,  there were no guarantees, he was on his summer vacation after all.

The next day, much to my surprise, I received the much-anticipated phone call from the man who I both admired and feared.  After hearing the plight of my situation he agreed to drive 45 minutes “over the hill” (Silicon Valley lingo indicating he was coming from Santa Cruz), to retrieve my final essay and final exam that were stored inside his classroom. He would look them over to see if there were any grading errors. “No guarantees” he said, mimicking the same admonitions from the front office.  

  A few days later I got yet another, unexpected, phone call from Mr. Johsens. He told me he took the time to read over both my final essay and final exam. He didn’t say anything beyond that, other than he wanted to meet with me and the principal at the end of the week.

  The day of reckoning had finally come. By now it was mid August. Some of my friends were already packing up to leave for college, while I was stuck in no-man’s-land, dealing with grade changes and appeals.  I sat outside the principal’s office fidgeting in my seat for nearly an hour, while Mr. Johsens and our principal were behind closed doors discussing me and my situation. I didn’t know what they could be talking about for this long, but what I did know was this was the most nervous I had ever been my entire life.

  Eventually I was asked to join Mr. Johsens and the principal for a very long discussion; a discussion I will never forget, one I hold near and dear to my heart, but one I will forever keep private. Keeping true to himself, Mr. Johsens never sacrificed his integrity.  I respected that then, and even more now.  Without divulging the details of that special meeting, I walked out….er skipped out... of the school office that day as happy and joyful as I could have ever imagined.  I was given a second chance, and the opportunity of a lifetime. Shortly thereafter my denial was overturned, and my acceptance to attend The University of California, at San Diego & The Scripps Institute of Oceanography was granted.

  Fast forward to my junior year of college. On the first day of my Comparative Physiology class the professor announced that each of us had to write a research paper, due by the end of the quarter. I thought back to my senior year in high school. The memory of that persuasive essay/ C+ grade debacle  was not lost on me.  I was nervous that history might repeat itself.  A few months later, after investing an enormous amount of time in the library researching the hibernating patterns of a Dormouse, I began the writing portion of my project.  Instead of the usual dread that came with writing essays, something felt different this time. Somehow my pen was moving quickly across the paper. The words flowed from one sentence to another.  I knew when it was time to expand on an idea, or when it was time to indent and start a new paragraph.  The topic sentence, the supporting paragraphs, the conclusion...they were all there in perfect order, executed with the same ease as riding a bicycle for the 100th time. A light bulb went off in my head.  It dawned on me that the ease of writing on this particular occasion was the “a-ha” moment Mr. Johsens had talked about. Perhaps the volume of reading I invested as required by my classes (far exceeding the “one hour” a night rule), and overcoming my writing phobia by writing letters to family and friends several times a week, had finally paid off. There was no doubt in my mind that I had finally gotten "IT."

Not long after my epiphany,  I wrote to Mr. Josens thanking him for all he did for me, and letting him know I had reached a sort-of writing “nirvana.”  His sage advice and insights helped shape me and my future. Leading by example he taught me not to settle for mediocrity or complacency. He encouraged me to challenge myself and the process. He helped me find the answers, not by feeding them to me, but getting me to think outside the box and reinforcing the notion that you have to put in the time. But it was the qualities of determination and resolve that Mr. Johsens reinforced and ultimately rewarded, that I came to appreciate most. For every dream I have followed to fruition, for every success or accomplishment I have earned, and for every battle or cause I have fought or continue to fight, there is no other element that has been more valuable to me than perseverance.

Although I never became that dolphin researcher that I had longed to be when I was sixteen, it was my journey with Mr. Johsens, and the life lessons he imparted on me, that became far more important.  Although after college I never saw or heard from Mr. Johsens again,  and only recently did I learn of his passing, I will never forget the gifts of opportunity and hope he bestowed on me back in the summer of ‘82. Rest in peace Mr. Johsens. Rest in peace...

​

​At the beginning of April during my morning routine of opening the back door and letting the dog do his business, I was met with flapping wings and the fluttering chirp of a startled bird.  By the third day of this unexpected commotion, it dawned on me that there must have been a bird’s nest in construction somewhere nearby. Sure enough, after searching for signs of a nest, I noticed some twig and twine poking out from a decorative wall fountain that hangs next to our kitchen window.  
 
 It was only two years ago, this same time in spring, that a finch found a perfect nesting spot inside the wreath that hung outside our front door. Although I was mad at myself for not putting away the last of the Christmas decorations, I relished the opportunity to watch the babies develop each day while peering through the door’s glass inlays. To keep disturbances to a minimum and lower the chance for nest abandonment, I put up signs for the mailman and instructed visiting guests to use the garage door instead.
 
This year was made even more special, for the nest that was under construction belonged to my favorite species of bird…the dove. For the 20 years I’ve lived here in Clayton, there is nothing that brings me more peace and calm than hearing the sounds and coos of the doves that frequent our backyard. From what I’ve been told, doves mate for life. Invariably, every time I see one dove, I see another.  Doves are symbols of peace, love, and loyalty; a reflection of the precepts I identify with most as it relates to my own relationships and marriage.  And given my admiration and appreciation for the life of a dove, it is no wonder how upset I get each year in the days leading up to September 1st, the opening of dove-hunting season.  For me, there’s nothing sadder than seeing or hearing the cry of a lonesome dove.
 
In the first few weeks after I discovered the nest, I avoided going out the back door to give Mama Dove her space. I found creative ways to spy on her and track progress, whether it was attaching a mirror to my selfie stick or leaning out the upstairs bedroom window to catch a sight from up above. On Good Friday she laid one egg, and then a second a day later-- a laying pattern typical for most doves. Additionally, in a dove’s brood, the first egg laid is always a male, and the second always a female. This was yet another similarity as it relates to my life: my son was born first, and my daughter was born second.
 
The dove built her nest atop a mesh screen that covers the fountain’s water basin. There was no overhang, no shelter, and no shade. Mama Dove was fully exposed to all the elements in a month that had its fair share of wacky weather, including an excessive amount of rain, high winds, and temperatures that got as low as 40° and as high as 93°.  Unlike Mother finch, who spent a great deal of time leaving her babies unsupervised in her very-sheltered and protected nest, Mama Dove spent nearly every waking moment in her nest, even during the most adverse conditions.  
 
As the days and weeks rolled on I became more attached to Mama, and she became more comfortable and trusting of me. Eventually I was able to open the back door without her flapping her wings or fleeing her nest. I greeted her every day, and told her what a good Mama she was to her little ones. Although I was curious to see the babies, I didn’t get too close out of respect for her and her growing brood.
 
After roughly three weeks in their nest, I finally got a glimpse of the two, fuzzy-headed babies while watering some plants and flowers outside. They looked so innocent and were as cute as a button, but surprisingly they were almost as big as their mother!  How was it that they grew up so fast? It was just yesterday that the eggs were laid. I was proud of Mama for taking good care of her babies. She sat in that nest round the clock, through wet and dry, cold and heat. She was the epitome of strength: dependable, loving, caring, and committed.
 
The next morning while making coffee, I slowly opened the back door, ready to greet Mama and the babies. But as I opened the door, and looked towards the nest, my heart sank. Mama and the babies were gone! Sometime between seeing the babies for the first time and the next day, the babies had spread their wings and left the nest. I was shocked, and feeling bummed.  I was experiencing “Empty Nest Syndrome,” and those babies weren’t even mine!  I missed Mama the most, perhaps because I saw a little of my mother in her, and her in me. I missed the opportunity to tell her, “Job Well done.”  Although I was feeling a little verklempt, I was happy she came into my life to serve as a reminder: appreciate all the precious, little things in life.
 
The timing of Mama coming in and out of my life, and the approach of Mother’s Day was not lost on me. It allowed me time to reflect and appreciate the sacrifices, the care, and the incredible love my mother bestowed, and continues to bestow, on me and my siblings. She set the gold standard, and hopefully by following in her footsteps my kids will one day feel the same way.
 
In honor of Mother’s Day I tip my hat to all the mothers in the world, animals included. Thank you for your sacrifices, and for the everlasting commitment of love and care. Thank you for weathering the challenges, while keeping your children safe and protected.  Thank you for your patience, and teaching the values of trust and trustworthiness.  And when the time comes, and it’s time for the chickadees to leave the nest, thank you in advance for your guidance and support!
 
To my beautiful Mother, the light of my life: “Thank you Mom, for a Job Well Done!”
HAPPY MOTHER’S DAY!!
XXXOOO
 

 For anyone who knows us by now, we have one golden rule: Never call, text, or knock on our door before 10:00 in the morning!  Although my family and I are night owls, living a lifestyle more in line with vampires and less with farmhouse roosters, for ME life wasn't always this way...

Back when I was working in pharmaceutical sales, I was up every morning at the crack of dawn. After dropping the kids off at school, I was in my territory to begin a full day of nursing in-services, product presentations to physicians, and juggling appointments for forty hospitals in Northern California to which I was assigned.  Although there were physical demands associated with the position--including walking the equivalent of 3 miles each day in HIGH HEELS-- it was the mental part of my job that was most taxing.  By 10:00 at night I was fast asleep on the couch, resting the brain that hit sensory overload hours earlier. Although I missed out on many of my favorite shows, there was comfort knowing I could shut my eyes at a moment’s notice.  

Suddenly, and tragically, my husband was injured in an ocean accident on a family vacation to Hawaii in August of 2012 and was rendered a quadriplegic. In an instant our lives were turned upside down. Without hesitation I left behind my career in pharmaceutical sales to embark on my new role as "Giver of Care."

 Each day, in-between bouts of 10 minute cries or contested phone calls to our insurance company,  I plowed through my caregiver duties, giving everything I had to give.  It was an endless cycle of lifting, pulling, bending, and reaching.  By the end of each day, my body was wrung-out like a marathon runner hitting the wall at mile 18. What was once end-of-the day fatigue, earned by thinking and long-winded conversations, was now complete and utter exhaustion due to the physical demands and emotional fallout that plagued our new situation. I no longer had the privilege of falling asleep on the couch during a Giant’s baseball game, or an episode of Survivor; for duty called 24/7. The luxury that I was once afforded, one that I seemingly took for granted, became a thing of the past.

Due to the my husband's inability to move, it was imperative that I wake-up in the middle-of-the night to re-adjust his position in bed. This nightly ritual of shuffling pillows and switching sides, was crucial to prevent the dreaded bed sore-one of many complications that can plague spinal cord-injured patients. 

As the days and weeks rolled on in the first few months after my husband came home from the hospital, my body was growing more weary.  By 10:00 each night I was wiped out.  All I wanted to do was go to sleep, knowing I would be back at it only four hours later. Yet every night there seemed to be a battle of wills: I wanted to go to bed, and my husband wanted to stay up and watch TV.  Honestly, I couldn’t understand why he wasn’t just as eager to go to sleep and get a respite from the nightmare he was living on a day-to-day basis. But every night it was the same old story...we negotiated, we bargained, eventually settling on a time somewhere in-between. In spite of the compromise, my sleep debt was mounting.  I was inching closer to falling off the edge of the proverbial cliff.

One day I finally reached my breaking point.  I sat down with my husband and went on a long spiel about sleep debt, raccoon eyes, and a concern that I was living the life of a zombie. I insisted that for the sake of my health and overall well-being the TV had to go off by 11:00 pm; no ifs, ands, or buts.  I set down my foot and said, “NO MORE!”
I expected a sympathetic response, but what I got instead was silence and a very long pause. He looked sad and dejected. His eyes started to well-up.  I didn’t know what to think. Gosh, was I being that harsh? I figured he would understand...
​
 His lip starter to quiver as he spoke.  “Swede (we call each other Swede), the reason I want to keep the TV on is not because I want to stay up, it’s because it sucks to go to sleep. When I was in the hospital for three months, I dreaded bedtime. I was sad and lonely.  It was dark, I couldn’t move, and because of the ventilator, I was unable to talk.  It haunted me to go to sleep, because I was trapped in a room without the ability to communicate. To cope I had the nurses keep the TV on so that I wouldn’t feel alone and afraid. I watched TV all night, including all the late-night shows. Those were the only shows that got my mind off of things, and lowered my anxiety. Eventually I was able to fall asleep.”

At that very moment every brick from my wall of weariness came crashing down. I had no idea how much comfort those late-night shows gave my husband. Somehow my lack of sleep and demands for “lights out” seemed so trivial and inconsequential compared to the loss of security that would be yanked from a man who had already been stripped of life’s basics functions.  I knew this wasn’t a time for insistence.

In the spirit of the motto: “If you can’t beat them, join them," I decided to hop on his
late-night bandwagon. We would trade “Good Morning America” and “The Today Show” for “Late Night” and “The Tonight Show.” We adjusted, scheduling therapy sessions and other appointments for the afternoons. We already had one life-changing event, what was one more?

And so began our daily, er nightly, routine of burning the midnight oil with the Late-Night comedians. During the long stretch when we were unable to get out of the house and do meaningful things, we at least had Jimmy Fallon and Seth Meyers to look forward to. They brought laughter to our days, which often times were filled with pain and sadness. Never before did I become more attached to a celebrity figure than I did Jimmy Fallon, my favorite among the late night comedians.

Three years after the accident my desire to see Jimmy Fallon in person skyrocketed.  I wanted to go to one of his shows and see the man in person. After doing some internet research, however,  I learned that getting tickets to The Tonight Show would be hard to come-by. In spite of the odds I decided to go for it anyways. I had great hopes that I would be able to check a "biggie" off of my bucket list.

 I completed all the required steps necessary to have a chance at getting tickets.  I had to register with the outside agency that handles free audience tickets. I figured the more information I shared about myself, the better my chance for scoring tickets. I handily shared links to my Facebook, Instagram, and Twitter accounts. I shared as much information as possible about myself, even disclosing my height and weight!  I would have handed over my first born child if it afforded me the opportunity to see Jimmy back stage! (J--K--!)

Fast forward to the morning of March 3rd...

While biting my nails and tapping my feet, I sat in front of my computer anxiously waiting the release of the show's April dates. At exactly 8:30 am I refreshed my page and voila...I got into the ticket website!  I tried to maneuver through the process as quickly as possible, trying to get tickets before they were all gobbled up. Lucky for me I was able to secure three potential dates for Jimmy Fallon, and one for Seth Meyers! By 8:35 am all tickets were sold out.  These weren't actual tickets, however. They were only "wait list tickets". We would be notified by email if any of our "wait list" tickets converted to a real ticket within two weeks of showtime. 

The more I thought about it, the more nervous I became about this whole process. There was a high probability that we wouldn't make it into the show. Was I just a silly dreamer like most of those kids buying cases and case of chocolate bars in "Willy Wonka and The Chocolate Factory?" hoping to find the golden ticket, only to walk away with dashed hopes? What if we got lucky? How would someone like us out-of-staters have enough time to plan?  Despite all my worries and fears, I forged ahead to keep hope alive. 

Fast forward a month later to April 5th... Bored and restless while waiting (yes waiting, always waiting) to be seen by our doctor, I was scrolling through email messages on my iPhone when, much to my surprise, I noticed an unopened email from “Late Night With Seth Meyers."  I felt like the Senior in High School who nervously opens the envelope from desired college, praying that what's inside is an acceptance letter.  With hesitation I double clicked the message. All I remember seeing next was the word, “Congratulations!” I squealed in delight! I reached over and shook my husband's arm, “WE GOT THE TICKETS! WE GOT THE TICKETS!”  Granted, these tickets were for Seth Meyers and not Jimmy Fallon, but it was an opportunity to see another late-night comedian nonetheless. In an instance my “Jimmy or Bust” attitude quickly softened, and before we got home we were already talking about seeing this through.

It was 2 1/2  weeks til showtime and we had nary a trip itinerary, let alone a hotel or airline reservation.  All we had were two tickets for the April 28th, “Late Night with Seth Meyers” show. What was I thinking? Had I lost my mind?  How the heck was I going to execute this plan on such short notice? Due to the complexities of a spinal cord injury and all the planning and scheduling that goes into travel, the words “spontaneous” and “at the drop of a hat” were concepts that were removed from our vocabulary. 

My organized self told me to reject this idea of going on a trip in such a short amount of time. I wasn’t twenty anymore, when I could hop on a plane at the snap of a finger. Things were different now. I was packing for not only myself, but a person who had a travel checklist that was two pages deep. Then I thought about the trip logistics: Would Vaughn be okay waiting by himself in the airport while I parked the car? What would happen if the Airport van got into an accident, or something bad happened to me? He would be stuck sitting outside of the airport with no way of knowing. What about the luggage? How would I push his wheelchair and carry our four bags of luggage at the same time? What about the people on the other end?  Would the taxis stop for us, especially if they saw all of our luggage AND the wheelchair? Would we get lost in the city? Do the subways have functioning elevators? The questions kept coming. The more I thought about it, the more I was getting anxious, and the more I was trying to talk myself out of the trip of a lifetime.

But then there was my inner voice…”Don’t let life pass you by because you are afraid. You’ve been through a catastrophic nightmare.  You’ve witnessed horror and someone on the brink of death. You have dealt with far worse for over three years and you are still here to tell about it. You can do this!”  But it wasn’t until Vaughn showered me with sensibility and encouragement that I finally pulled the trigger:
      “I’ll be fine waiting at the airport terminal for the 20 minutes while you go park the car. No one is going to steal me, I assure you!  As for the baggage? We’ll get a bellhop. The taxis in New York? Let's Fuhgettaboutit and ride the subway! We’ll find our way around the city. We can do this! Now stop worrying and let’s get on with it!”

Get on with it we did. We scrambled to make all the necessary reservations. Two weeks later we were sitting on a plane headed for New York, wearing our badge of courage while holding Seth Meyer's tickets in hand. We were going to throw caution to the wind and make this the best trip ever.

The start of the trip went off without a hitch.  We spent every day squeezing out as much fun as possible. We went to Central Park, Times Square, The Rockefeller Center, walked the Brooklyn Bridge, took a ferry to the Statue of Liberty and Ellis Island, saw a Broadway play, and braved our first subway ride. I was pleased how everything was unfolding. We were seeing and doing more than I had ever imagined.  But by Monday, April 25th- the halfway point of our trip-I got the first of three emails stating that we didn’t get the Jimmy Fallon tickets. The whole reason I wanted to go to New York in the first place was to see Jimmy Fallon, and now we had lost our chance.  In spite of all the wonderful things we had already seen and done, I couldn't help but feel a little empty. I was let down. I was bummed.

But when things don't always turn out the way I want,  I try to avoid the "cognitive dissonance" trap, refusing to embrace the notion that "things always happen for a reason." Instead, I carry on and do what I do best:  I re-group, I try, I execute. Even though odds were not in our favor, I knew there was still a way to see Jimmy. All I needed was some guts, a positive attitude, and the buy-in of one person: my partner in crime.

When I first told Vaughn of my new plan he said, “Swede, are you kidding me? Do you REALLY want to do that?”
With pucker-lip protruded 3” from my face, I nodded my head and bashed my eyelashes. I swooped in close to his face. “Swede, you know it’s been my dream all along to see Jimmy. I don’t want to go home without trying. I don’t want to live life with regrets. Pleeeaaassse Swede?”  
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I knew my plan would stretch the Night Owl out of his comfort zone, so I did what he always taught me to do after you ask the last question in negotiations….you shut up!       You wait. The first person who speaks loses. So I sat there waiting, hoping and praying. After 15 minutes of tortured silence he finally spoke.
      “Okay Swede, I’ll do it. I don’t want to be the one to keep you from your dreams.”
I stood up and looked at him in disbelief. I shook his arm like I did a few weeks earlier.
     “Really Swede? You’ll really do it for ME?”
 I was so excited imagining the possibility of maybe seeing my number one idol, that I started skipping around the room.

Then he asked, “Well what time will we have to wake up tomorrow?”
Gulp...Ruh Roh...
I winced and said in a hushed tone, “Ummm, 4:30am. But I’ll get ready first and then I'll...”
“WHAT??” he roared. “Are you kidding me Swede?”

I knew it. I knew this wasn’t going to sit well with him...the idea that we would have to get up early and go stand in the cold to wait for standby tickets. So what did I do? I did exactly what he taught me NOT to do when you negotiate. I started talking...
      “Well maybe I can get you up closer to 5:00 am.” I said sheepishly.
He stared at me and said nothing.
     “Okay, maybe I can get you up closer to 5:15 am.”
He said nothing. I was starting to sweat.
      “How about 5:25 am? I’ll just throw some pants and a shirt on you and we'll be out of here by 5:30 am!. Okay Swede-els?
He won the time battle, but he rolled his eyes and let out a heavy sigh anyways.“Alright.”
      "THANK YOU SWEDE!!" I said excitedly, but inside I was feeling a little uneasy. I had it in my mind that we would be out the door by 5:00 am, but because of my terrible negotiation skills we were going to leave well past the time I thought it would take to secure a standby ticket. Previously I told him I only needed 5 minutes to get him up and out the door by 5:30 am, but in reality I knew darn well that it would take at least 15-20 minutes to get him dressed and into the chair, and that was sans the wash-up.  We were really pushing it, risking the execution of my whole plan, but I had to tread lightly or else this whole thing could blow-up in my face.

As we were getting ready for bed I was feeling really nervous about our time schedule, concerned that a 10 minute delay could ruin our chances for getting one of the coveted tickets.  Just as I was losing hope Vaughn said, “I think I’m just going to sleep in my clothes and shoes tonight and be ready to go. That way you won’t have to deal with all that in the morning and it will save a lot of time.”

I couldn’t believe it!  It was music to my ears! He came through like a champ. But this is how he always operates.  At the end of the day, he ultimately puts me first, even at the sacrifice of his own comfort. I knew it would be uncomfortable for him to sleep in not only his clothes but his shoes too, but he insisted, because he knew how much this opportunity meant to me. This large gesture would save us some crucial time, perhaps enough time to make my dream come true! 

By early the next morning we were out the door by 5:35 am, headed for the standby line five blocks away. I ran while pushing my husband's wheelchair as fast as humanly possible without knocking into anything or anyone along the way. We made it under the NBC studio marquee by 5:50 am. By the time we got there 16 other people were already in line, including the two girls in front of the line who were fast asleep on their blankets and pillows.  Supposedly the girls arrived at 1:30 am!  Although we were further back in line than I had hoped, I figured we still had a chance.

So here we were... waiting in line at the wee hours of the morning. We were incredibly tired and worn out, for it was just 5 hours earlier that we had gone to bed (and that was after a day walking all over Lower Manhattan)!  I was feeling a little guilty that I had dragged my husband out of bed for this silliness, making him sit in his wheelchair for hours in the cold. I would be feeling even worse if we didn’t get the tickets.

For the first hour I snuggled up on his lap in an effort to keep us both warm.  By 7:00 am
I was talking to the people in front and behind us in line. The couple right behind us were from Idaho, taking another stab at standby tickets. They missed the cut-off the day before by one spot. Like me, they didn’t want to leave New York without seeing Jimmy, so they were back at it for a second day. 

At 9:00 am an intern came out to the line and checked all of our IDs, and issued numbers according to the order that each of us were in line.  We were numbers 17 and 18. We went back to the hotel, took a 3 hour power nap, showered up and were back to the NBC studio promptly at 3:30 PM to find out if we had made it into the show. The only way we would get into the show is if people with tickets didn't show up.

We lined up inside the NBC gift store in the same order that we were waiting earlier that morning. One-by-one the others came in too, finding their spots and looking much better and more refreshed than they did earlier that morning. We were happy to see each other, fist-bumping and hugging one another as if we had been friends for a long time, but in reality we were simply linked together by the strong desire to see one of the funniest men in showbiz.  

At 4:00 PM, after thirty minutes of great anticipation, a gentleman walked over to Vaughn and said, “Okay Sir, we are ready to take you upstairs.” (Because of the wheelchair we needed to go first and get situated). I looked over at my buddies in line, smiling from ear-to-ear. I mouthed the words, “OH-MY-GOD!”  The 16 people that were in front of us in line started cheering, for they knew that if we were going in, they were going in too. As we exited the room I looked over at the couple from Idaho and raised my hand with crossed fingers. “Good Luck Guys. I really hope you get in!” I shouted. I prayed that there wasn’t truth to the saying, “Nice guys finish last.”  
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After going through security and the check-in process, we finally made it into Studio 6B. As we sat in our chairs I looked around, taking note of all the studio details: the lights, the TVs, the place where the Roots play, and the stage where Jimmy would soon perform. I was thrilled to catch sight of that couple from Idaho. We made eye contact and gave each other the "thumbs-up" gesture.  I was so happy that after a two-day wait, they finally made it in. I sat there, soaking it all in. I tried my best to remember everything as I saw it. I repeated to myself, “Remember this. Remember these moments,” for I knew, as was the case with the day of our wedding, time would fly by in warp speed. Before long the show would be over, and all I would have left would be a wrist band and a collection of mental snap shots-that would eventually fade to memories.

The moment had finally arrived. At the top of the hour Steve Higgins (Jimmy Fallon's side-kick) announced, " Ladies and Gentleman...Jimmy Faaaalllllonnn!!" The curtain swung open and my idol enthusiastically walked out on the stage.  Everyone rose from their chairs, cheering with thunderous applause. The energy in the room was so incredible it could light up ten football fields on a Friday night.  

 As always Jimmy was funny and entertaining, delivering jokes with his trademark giggle and silly laugh. Steve Higgens, The Roots, and all the other guests, including Chelsea Handler...they were but icing on the cake. It didn’t matter who the guests were that night; they could be stuffed animals or wooden sticks, and I would be just as happy. I was here to see Jimmy and he didn't disappoint!

At the end of every show Jimmy walks up one aisle, and back down the other while lending "high-fives" to the audience members along the way. This is his signature ending. During the show I couldn’t stop thinking about the fact that I was sitting in an aisle seat. I was beyond thrilled that I had the opportunity of a lifetime. Although I was excited for me, I was a little bummed that Vaughn was in the wheelchair zone, unable to participate with the audience as they stood-up and cheered. He would also miss out on any opportunity to high-five Jimmy. 

As the show was coming to an end, I was getting excited, anxiously waiting Jimmy’s arrival. He made his way up the far aisle,  giving "high-fives" along the way.  When he got to the top of the stairs, he walked around the back of the studio, but before he started down my aisle he did something that blew me away: He walked over to the wheelchair section where Vaughn was sitting, and said to him, "Hey Buddy, how are you doing?" He extended his hand and gave a fist-bump to my Swede-the person who was unable to high-five, or stand, or clap, or walk into the studio, or do most of the things we all take for granted. Jimmy was every bit the gentleman that I had envisioned. I was overjoyed and on the verge of tears. THAT moment was the highlight of my trip. 

Finally the moment arrived...after Jimmy greeted Vaughn, he turned around to head down my aisle.  I knew it was my turn.  Within a flash of a second there he was...right in front of my face-my favorite person on TV, my idol, my dream come true.  Instead of putting my hand up for a “high-five,"  I spontaneously stretched open my arms gesturing for a hug. He smiled, opened his arms, and as he was giving me the best, teddy-bear hug ever, he said, “Ohhhh, wasn’t that a beautiful thing?” referring to the amazing, yet poignant and emotional, tribute to Prince, that was sung by musical guest, D'Angelo. Ironically, Jimmy's words captured the essence of my night and the special gifts he had unknowingly given to me and my husband.  I hadn’t felt this kind of happiness since my kids were born!  Could life get any better than this? I didn't think so!

After the show, we went back to the hotel and collapsed on the bed. We were utterly exhausted, but mentally and emotionally charged and satisfied.  I leaned over and put my head on Vaughn’s shoulder. I thanked him for his sacrifices and his patience, for without them today would not have been possible.  As we turned out the lights Vaughn uttered his usual end-of-the night salutation, “Sweet Dreams!”
To which I replied, “They already came true!"  To which he replied, "Not completely...
We still got Seth on Thursday!"

           “All our Dreams can come true if we have the courage to pursue them.”
                                                             ~Walt Disney​

A few weeks ago, in the wake of what seemed like the passing of one great musician after another,  my husband and I had the pleasure to watch the 3-hour documentary: “History of The Eagles" shortly after the sudden death of Glenn Frey, the co-founder and leader of The Eagles, one of the most successful rock bands of the 20th century.  Somehow in the span of one week, we re-watched the documentary four times. We identified with not only the music of The Eagles and that era, but we were inspired by some of the incredible messages conveyed in the documentary by some of the band's members, most especially lead guitarist, Joe Walsh.
​
In spite of the toll the many years of partying took on him, and the goofy albeit endearing personality that he projects, Joe offered a heart-felt insight into the rise and fall, and the eventual reunion of The Eagles, and the profound impact it had on him and his band mates:
         “You know, there’s a philosopher who says, ‘As you live your life, it appears to be anarchy and chaos, and random events…non-related events...smashing into each other and causing this situation or that situation, and then…this happens, and it’s overwhelming. And it just looks like what in the world is going on? And later, when you look back at it, it looks like a finely crafted novel. But at the time, it don’t.’”

Although Joe never identified the philosopher referenced in his interview, it's been speculated he was speaking to the essence of Taoism; a philosophical system evolved by a Chinese philosopher (Lao-Tzu) advocating a life of complete simplicity and of non-interference with the course of natural events, in order to attain harmony and a happy existence.
  
Recently, while the kids have been away at college and things have quieted down, I’ve taken time to reflect back on our version of “it," as reflected upon by Joe Walsh. The chaos and the “random events” that seemed to endlessly smash into each other during the aftermath of my husband’s accident, was less like the energy released from popping open a bottle of Dom Perignon, and more like the explosion that ignited the beginning of time.
 
In the midst of all the madness, nothing made sense. How could life be so beautiful and satisfying one moment, as was the case up until the moment my husband’s head slammed into the sand, and then suddenly, so harsh and unbearable at another?  As I reflect back on not only the past three years, but at the times in my life when I've been put to the test, there appears to be an inevitability that life will eventually smooth itself out. Peace eventually sets in, the madness wanes. And life carries on in harmony, reaping benefits from the events that preceded it, much like the phenomena of a robust and sustained forest.
 
During its development a forest thrives in its quest to grow and expand. With energy from the enriched soil combined with the elements of sun and rain, seeds become sprouts, sprouts become plants, and small trees grow into big trees. Vines and plants flourish, carpeting the ground at a break-neck speed. Eventually the forest, in all its glory, becomes a mosaic of various colors, shapes, and sizes; a masterpiece of life and vitality.  But there comes a time when the resources and space available to keep growth unfettered, is diminished. In a matter of time, the forest begins to suffocate from the overgrown foliage that is choking its existence.  Out of nowhere lightning strikes, engulfing the rich timberland into flames. The once bucolic setting would turn into a wasteland filled with embers, and trees stripped of their dignity.
 
Unselfishly, the trees that had grown into magnificent beasts make the ultimate sacrifice, and in their last breath, release the seeds of new beginnings from the cones that once showcased their beauty.  The seeds sprout into a new generation of spectacular greenery that rivals the original. Slowly, as nature would have it, life emerges from the ash. The charred and crippled trees that remain standing, represent the resilience and determination of a species that refuses to vanish. And together with their younger counterparts, each having made contributions to the greatness of the forest, restore the ecosystem back into balance. 
 
Often times we don’t really appreciate what we have until it is lost, or when our failures outweigh our successes.  Life will always throw us a curve ball, or test us when we least expect it.  Life has its ups and downs. Life just is. What is important is that we get inside the gyroscope and allow life to play itself out around us. Strive to appreciate the moments when times are good, and don’t let the losses and failures define us, but enrich us and those around us instead.  Doing so might just make that finely crafted novel a bestseller! 

“You kids need to get to bed now. Santa isn’t coming until you go to sleep.” I said as I unpacked our luggage into the spare bedroom of my parent’s home on Christmas Eve. Ever since my kids were born my family and I have spent every Christmas Eve and Christmas night at my parent's house in Saratoga.  We had just come from my brother’s house celebrating the Christmas Eve festivities for 6 hours with the entire clan, and I was anxious for my kids to get to bed so that I could do what I needed to do in preparation for Christmas morning.

Forty-five minutes later the kids were still up playing with their grandfather and I was still urging them to get to bed.  My Dad, better known as “Grampy” to all the grand-kids, is the consummate jokester and instigator of child’s play. He turns everything into a game and has a knack for bringing out the fun in any situation, sometimes when the adults would rather he didn’t. I pleaded more with him than I did my children to stop goofing around so that Vaughn and I could carry on with our parental duties.

It was 1:15 in the wee hours of the morning and the kids were finally settled in bed. My Dad turned his attention towards decorating a little, Charlie Brown-style Christmas tree that he bought and kept hidden in his work shed. Each Christmas Eve, after my kids fall asleep, he sets up and decorates this little tree with ornaments and lights. He places the tree in front of the fireplace next to the spot where Santa brings his presents for my son and daughter in the middle of the night.  Upstairs in the living room making as little noise as possible was my Mom. She was putting the final touches on the display of gifts and presents which enveloped their 8’ tall, heavily-flocked, Christmas tree.  Both of my parents had more hours of preparation yet to do, with the prospects of minimal sleep, in order that the Christmas they were going to provide for their children and grandchildren would go off without a hitch.

While waiting for the sounds of slumber and the thirty minutes of sacred quiescence to pass, my husband and I tiptoed out the front door and hauled in several bags, disguised as “garbage”, into  the house ready for assembly and display. Tired from the long day of packing, travel, and celebration, our goal was to get everything put together, displayed, and into bed by 3:00am.  

While Hubby was busy putting together a barbie playhouse and I was opening packages and sorting presents,  I noticed that our son’s most-wishful request wasn’t in the bag.  I frantically looked underneath the torn, discarded-boxes and in and around the bags.  I ran back out to the truck  to see if somehow it fell out and may still be in the bed of the truck.  But the present wasn’t there. I soon realized that were a few other missing items that were also nowhere to be found.. My heart was pounding. Perhaps the bag flew out the back of the truck on our 2 hour drive down to the South Bay earlier in the day.

I was choked up with tears thinking about this being the nightmare that all parents think about at some point in their lives-a Christmas without toys. What was I going to do? I suspected that my son, a very bright and logical being, had already lost his belief in Santa. He never said so out loud, but the signs were all there. Yet he never let on, even if he did stop believing. My son was by no means greedy or selfish and would certainly understand if I pulled him aside and told him what happened, but for the sake of perpetuating the magic of Christmas for all involved, including my daughter who was still a full believer, I had to come up with a solution and a plan on what the heck we were going to do this late at night with all the stores closed.   

While I was thinking about what to do next, a light bulb went off in my head.  I remembered that in the garage I did place a box next to the luggage and the other garbage bags full of presents just before we packed up the truck before our departure. But it wasn’t me who packed up the truck. I ran back inside the house and asked my husband if he grabbed the box that was next to the luggage. He remembered seeing a box but he assumed it was one of the many boxes of clutter we kept in the garage.

Somehow in the chaos of hiding presents in bags, packing the car, getting to church on time, and driving away to celebrate a most treasured holiday, we had forgotten the box with the one item that was supposed to be the big surprise to await my son on Christmas morning.

By now it was 2:00 am. We weren’t even finished with the rest of the set-up and there was a very important box that sat alone in our garage 70 miles and a 90 minute drive  away.  “I have to go back and get it” I thought. “Sleep be damned.”  There was no question as to what the right thing was to do. I wiped my tears, grabbed the keys, and told Vaughn and my parents that it was important that I go get that box.

Without hesitation my husband, who too was burning the midnight oil assembling gifts, grabbed my hand and said, “I’ll go with you Swede. We will do it together.”  I told him that he didn’t need to lose his sleep too, but he insisted.
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So off we drove, exhausted from a long day of making breakfast, opening presents, packing, going to church, driving a long drive, celebrating for 6 hours and preparing for the one day of the year that gives us so much joy.  We rolled down the windows and blasted music to help fight off the weariness that was starting to set in. We talked about everything under the sun and before we knew it we were pulling into the driveway at 3:30 am.  As the garage door opened we were relieved to see that the package was still there.

On our way back to my parent’s house I looked over at my husband and thanked him for stepping up and being the best partner even in the most trying of times. He smiled and said, “I wouldn’t have it any other way.”

At 5:00 am we walked back into my parent’s house dreading the unfinished project that awaited us.   All the lights were turned out except for the mini lights that bedecked the little tree that my father had finished decorating while we were away. We were elated to see that the Barbie play house was completely assembled, another gesture of kindness extended by my father even at the sacrifice of his own rest.  We finished setting out the presents and stuffing the stockings and were able to finally get to bed by 5:30 am.

A few hours later I woke up to the sounds of Bing Crosby and the smell of a freshly-brewed pot of coffee. I slipped out of bed and went to join my parents who were busy getting the house ready for the arrival of all of their children and grandchildren.   “Proud of you kid,” my Dad said as he wrapped his arm around my shoulder with a knowing hug. He could empathize with me because he had gone to bed at 4:00 am and had been in my shoes many times before.

It was finally time for us to give the green light for the kids to come out of their bedroom and see what Santa had brought .  With coffees in hand my parents, my husband, and I-each with our own level of exhaustion and sleep deprivation-relished in the moment that was infused with magic and anticipation. The kids ran past us and found the spots where they put their stockings the night before. My daughter squealed with delight as she poured out the contents of her stocking and opened her presents.  My son on the other hand, is much more quiet and stoic. He carefully opened the coveted gift-the one he wished for the most, and unbeknownst to him the very gift that we had just spent three hours driving for to retrieve from home.  He immediately looked over at me and my husband and flashed us a boyish smile that showcased the deep dimples that ever enhances his smiling face.  He looked at us and quietly whispered with a gesture of warm gratitude, “Thank you. I’m so happy I got the one thing I wished for the most.”

In that one moment my heart swelled with so much happiness and relief. It was confirmed once again that it was far better to give than to receive.  The sacrifice of sleep and the gift of time, by not only my husband and me but my parents as well, was a small price to pay for the love and happiness that was bestowed upon my family that Christmas morning.  

I think about this story often because it reinforces the value of incorporating the precepts of generosity and sacrifice into each of our lives. It has helped shape my approach to life and the situation we’ve been faced with in the past few years.  I’m reminded by the message of this story that sacrificing one’s own needs for the betterment of others is fuel for the heart and soul.  Choosing the path of sacrifice will always leave you feeling full, and without a doubt it is far better to give than to receive! ​

It’s interesting how most everyone operates with regards to the things that matter most to them or to matters that directly impact their world. Some people do as much as they can to help fight a cause that has shaken their world. When someone loses a loved one or has seen a loved one suffer due to an affliction or a disease, that affliction or disease is now a part of their world, their vocabulary, their efforts, and their cause. Some people, often in the name of someone they lost or know who is suffering, will work tirelessly on a cause in order to make a difference so that others will not have to suffer the same fate.  Is the motivation really to make a difference in this world or is it to alleviate some of the crushing pain that lies within the heart and souls of the surviving friends and family members, and to keep a loved one’s memory alive? Or all the above? The reasons are varied, but the commonality that strings together everyone’s stories is that some person or persons has taken the time to draw attention to a much-needed cause in order to make a difference in this world.  There is a saying from the Talmud that "whoever saves one life, it is as if he [or she] has saved the whole world."

 You recognize the names of those who have dedicated their lives to making a difference...You can probably remember what the cause they fought for just by seeing their names: Mark Klaas, Jerry Lewis, Betty Ford, Oskar Schindler, and Christopher Reeve.  Then there are the causes you associate with by brand recognition: the pink ribbon, the AIDS quilt, the telethon, and the ice bucket challenge-a clever and brilliant marketing approach that brought so much money and awareness to ALS, better known as Lou Gehrig's disease.  

What about the lesser-known diseases and the people who work tirelessly to bring attention to their cause? These fighters may not be in the national spotlight but their efforts in some way or another are making a difference.  I have a friend whose daughter suffers from Rett Syndrome, a debilitating and unrelenting affliction that almost always affects young girls. Although it is a rare disease, affecting 1 in every 10,000 female births, it is still a disease that has brought so much pain and challenge to her daughter and her family. She has spent endless hours organizing stroll-a-thons, raising money for Rett Syndrome, and sharing as much news and updates on this disease as she can. Not only has she brought awareness regarding Rett Syndrome to our community, she has also been genuine with her feelings. We feel her pain, but we also get to see how her beautiful daughter, with the 1,000 watt smile, can bring so much joy and happiness to a mother, her family, and our community. Through her and the efforts of her mother, we are all learning the life lessons of humility, care, love, and acceptance.

September is National Spinal Cord Injury (SCI) awareness month. What exactly does that mean? Perhaps it may be something as simple as thinking of someone who is paralyzed and praying for their recovery.  For others, it may entail making contributions to a recovery fund or spinal cord research.  As the wife and caregiver of a spinal-cord injured person it is my commitment to bring continued awareness to an unforgiving affliction.  As you know 17 months ago I started my blog/website, Hopelovelive. Although what inspired me to write was a need to heal through the power of words, I have come to learn how important sharing our story has been for others. What was unexpected was the extent to which my blog has been read by people all over the world. I’ve had many people write to tell me how my blog has helped them in so many ways. It has given them hope and a sense that even in the face of desperation, things will turn out okay. And I will keep writing, because sharing is caring. There is enormous comfort and satisfaction knowing you are helping others in their desperate time of need. 

In honor of National Spinal Cord Awareness month and my continued efforts to bring awareness and acceptance to this cause, I wanted to share 5 points to keep in mind when interfacing with those that are injured (plus their family).

• Understand that the person in the wheelchair wants to be treated like everyone else. It is important that they have a voice, an opinion, a vote. If you have a question to ask the person who is injured, ask them directly instead of asking the person to their left, a spouse, or caregiver. So often when we are dining out at a restaurant the waiter/waitress asks me what my husband wants to eat instead of asking him directly!  
  
•  Thank you from the bottom of our hearts for inviting us to join you in having some fun. Sometimes we might not be able to make it if the circumstances are not ideal, but we will do our best (& get creative)  to be there, even if it’s for just part of the time. It is so much better to have the choice to participate, than to not have the opportunity at all.
  

• We might be a little late. It takes time to get someone with a spinal cord injury ready for the day. Putting on pants and a shirt for someone laying in bed is tricky. Getting a person in and out of the car and their wheelchair into the trunk takes an additional amount of time and effort.  We are working as fast as we can, but even slating an additional two hours to our routine may not be enough. Thank you for holding us a spot and clearing our path for when we get there!

• Know that with spinal cord injuries comes pain and discomfort. There may be times that we have to cancel  at the last minute due to medical flare-ups, or dealing with a body that might be a little grumpy and achy. Understand that we would rather be with you having fun, than taking a pass and resting at home.  Have a drink in our honor, because we will probably be having one in your’s!

• When we do see you we welcome your greetings, handshakes (even if they aren’t the best), hugs, and love!

Lastly, I hope that with increased awareness and funding for research, a cure for paralysis will happen sooner than later, and hopefully within my husband's lifetime. Godspeed!  

As I walked into the room I looked over and saw my Dad standing next to my Mom’s hospital bed and my brother Gary standing at the rear of the room with his hand underneath his chin looking at the numbers on the monitor.  The room was filled with equipment, IV lines, nurses and a Medical device rep.  I could feel the urgency and fear in the room. All eyes were on the monitors. It was a balancing act-giving just enough of one medication without causing another set of issues with another.  We were in crisis mode following a massive heart attack, and the odds were not in our favor.

I was immediately catapulted into a world from which I had just recently emerged.  Those emotions and feelings that I recently filed away, quickly rose to the surface.  I was overwhelmed with fear and the uncertainty of how this would all play out.  I wasn’t ready for this. I wasn’t ready to lose my Mom—the matriarch and the heart and soul of our family.  I wasn’t ready to read monitors and take notes. I didn’t want to engage in scientific conversation about cardiac output and arterial pressures. I just wanted to think about my Mom and pray that she make it to the next phase-which at this point was the 12 hour, followed by the 24 hour mark post incident.  I was desperate to tell her that I love her and how much she means to me.

I lasted about 2 minutes in her room and then had to leave. Three years ago you couldn’t peel me away from the room and the crisis level was just the same, if not worse.  Was it was because she was my Mother? Was it because I was tapped out and had not yet recovered from the 111 hospital-days of advocacy I had just invested with my husband? Or perhaps it was because my father, together with my brother Gary— one of the smartest people on the planet---was at the reigns.

The knowledge and medical understanding my brother gained while working in the hospital as an Orderly coupled with his experience working in the healthcare industry as an analytical chemist, would be the perfect combination in order to make sense out of the situation.  He was keeping track of all the numbers as each minute ticked by, and although my Mom was making only an ounce of progress, I was comforted and encouraged by his choice of words, “Progress is progress.” And when I was scared during a critical point early in her hospital stay and asked the question, “Do you think she will pull through?” I was comforted to hear him say, “If anything looks off, they (the docs and nurses) will take a step back. Low risk.” 

And then there was my Dad. For the first day-and-a-half he didn’t leave her room except when he was told to leave for shift changes. He stood vigil, holding my mother’s hand, stroking her hair. Even though she was sedated, I’m sure she heard his voice urging her to fight the fight. He hadn’t slept in nearly two nights. His body swayed back and forth in a rhythmic fashion, a sign that he was growing weary with exhaustion.  He too was fixated on the monitors, smiling each time a number went in the right direction. He’s the one expected to be there first thing in the morning and the last one to leave at night. He’s the one who has to hear all the updates-good, bad, and ugly- from the physicians and nurses, the therapists and the ancillary staff. I felt for my Dad, for I know what it was like to be in his shoes—the person who is on the front line of the battle, taking shots, shielding and protecting.  He’s scared inside but keeps a strong front for others to lean on; his children, his friends, and most importantly- my Mother. The love he has for his wife trumped his need for rest, food, and comfort.

At the end of the first day I had to text some important medical information given from a nurse to my Dad, my sister, and my three brothers for safe keeping.  This group message, as it turned out, was a godsend as it served as a vehicle for us all to be connected to the situation and each other in what would be one of the most critical times of our lives.  My Dad learned how to text and was able to give us all updates throughout the day. Each of us chimed in with questions, input from our own visits with Mom, a bit of humor to break up the tension, and above all love and support. Although my heart skipped a beat each time my phone beeped with a new text message, almost always the news was better than the text before. I never felt more connected to my Dad, brothers and sister than I did over the coming weeks through a simple group text message.  Everyone’s personalities surfaced…Gary kept his input to numbers and data, giving each of us a sense that things were moving in the right direction. My sister Renee and I inserted our  “I love you guys” and “Way to go Mom” comments, lending virtual hugs at all times.  My brother Roddy was the quiet charmer, giving a positive vibe to our group, and always up for getting together for lunch or dinner after our hospital visits. Then there was my brother Randy…the ultimate sarcastic jokester.  When the air was getting too thick with tension, I could count on him to break it up with some eye-rolling humor.  He made us laugh at a time that was draped with fear and anticipation.  Last but not least there was my father. For the first time, he used texting as a way to communicate. He would spend a half-hour creating a message that was grammatically perfect. He didn’t understand some of the lingo that we were using. It was so cute to see him write, “What does ‘TMI’ or ‘LOL’ stand for?” Every morning I would wake up, look over at my phone, and inevitably there was a message awaiting each of us from Dad. “Wake-up everybody…Mom looks great…”  He proceeded to tell us how she was doing, and what the day had in store.

For the next few weeks, the routine stayed the same: text updates, visits to the hospital, restaurant dinners, and a daily Miller Manhattan toast to my mom. We finished the night singing our traditional German song, “Ein Prosit, ein Prosit, der Gemütlichkeit.”  The meaning of Gemütlichkeit is hard to explain, but in essence it means good cheer, happiness, and warm tidings.

My Mom’s odds of survival the day of her incident were very low.  But somehow, I believe that the spirit that lives in my family (which also includes my nieces & nephews, my in-laws, my aunts, and my husband & children), our closeness, our commitment to her and one-another, and the tidal wave of love that was showered upon her over her two-weeks stay in the hospital brought her back to life.  A phenomena my brother Randy refers to as the “Miller Bounce.”   It was the same force that helped my husband recover in the hospital nearly three years ago.

Now that my Mom has made it home safely, I am able to look back at these past few weeks with a sense of pride and gratitude that I am lucky to be a part of this amazing family.  My Mom has committed her whole life to my father, her 5 children & their spouses, her 12 grandchildren, and 2 great-grandchildren (with one on the way).  It really hit me just how much my mother means, not just to me, but my father, my siblings, my nieces & nephews, and my husband and children as well.  I could read it on their faces, I could hear it in their voices, I saw it in their actions.  Our Mom, our Grammy…she’s the heart and soul of this family.  I am so blessed that we all get to tell her in person just how amazing she is!

On behalf of my family, we would like to thank everyone for their prayers, cards, flowers, and well-wishes.  Most especially, a big thank you to my Auntie Judy who without pause stepped up to the plate, and is currently helping my Mom  recover at home.

And to my Mom…I love you more than life itself.  Thank you for being the ideal mother, loving each of us unconditionally, and sacrificing your comfort so that others may have theirs. Now it is your time to sit back and relax. Here’s to a quick recovery and a lifetime full of Gemütlichkeit!

XXXOOO

A few weeks ago, while preparing for my daughter’s high school graduation celebration, I had the rare opportunity to be myself and sort through a mountain of pictures that I had collected over the years.  There were boxes and boxes of photos taken from family vacations, school events, and all the sports that my children participated in over the years.  I started with the early years, when we only had photographs, and moved my way over to the computer where all the digital images from 2003 to present were stored.

As I looked lovingly at each and every photo I couldn’t help but feel a sense of pride, not just for the girl with the unbridled spirt, but for the family of four who made being together a top priority.  The bonds that developed between parent and child, brother and sister, and husband and wife were seamlessly tied together, leaving no doubt that we would put each other first…no matter what.

As I got to the latter part of 2012, I noticed that there were fewer pictures.  There were no more soccer, softball, or diving pictures. Gone were photos from the family golf outings or pool-side vacations. Painfully, there was only one picture of me and my daughter—at the Christmas tea in 2013, because we no longer had the opportunity to get out and do things as most mothers and daughters are able to do.  It was clear that the most recent archive of pictures and memories had somehow been lost.

My daughter was a gifted athlete ever since she was little. The local newspaper did an expose on her when she was just 12 years old, highlighting her ability to excel at every sport she tackled, from softball to soccer to golf, running, and skiing.  

Yet she gave all of that up-a most incredible sacrifice-in order that she could spend precious time with her injured father.  It was more important to her that she be at home than at the diving pool or on the soccer field.  We encouraged her to continue on with her outside activities, but instead she selflessly gave her time to her loving father; a choice that she made from day one.

She spent every weekend at her father’s bedside during his 3 month hospital stay. When he eventually came home from the hospital, she accompanied me on every emergency room visit, even if it was in the middle of the night.  And every day after school she rushed home, spending hours with him, giving him her undivided attention, comforting him when he was in pain or feeling low, and being a beacon of light in a world that was shattered with darkness.  She missed out on many football games, school dances, and opportunities to be with her friends. But if you asked her, she wouldn’t have it any other way.

And now…as I prepare to say “Goodbye” to my youngest child as she goes off to college, I am left with an incredible feeling of gratitude. I am grateful to have been blessed with children who, at an early age, have embraced what it means to sacrifice, endure, put others first, to hope and most importantly, to love.

The turn of events of 2012 did not break a family. Although we have fewer pictures to share from that moment on, the life lessons that we have gained and that which is indelibly etched into our hearts and souls, is more important than any picture that we have tucked away in a box.  Memories are not lost, and the beat goes on…

XXXOOO

So I felt compelled today to just vent and get something off of my chest that has been bothering me for the last few years. Lord knows we all have bad days and a list of things that get under our skin. Yet there is something that I witness on a regular basis that makes me so mad I want to “spit nails” (famous words my Mom used to say when she was mad).  That “thing” is the abuse of the handicap placard.

  You know who they are.  You’ve seen them. But rarely does anyone speak up (including myself) and say anything to these people for fear of retaliation, verbal abuse, or simply that you just “don’t want to get in anyone’s business.”  The people who are abusing these spots are in fact not disabled nor traveling with the person for whom the placard is intended. They just want a spot closer and more convenient to their destination, or in some cases, free parking. In some areas (such as California)  a handicap placard trumps a metered space, and parking is free. It is the disabled advocacy groups who are trying to change that so that everyone pays. Great idea. That's only fair.

Do you realize that as of November of 2013 there are over 500,000 issued Handicap placards in the Bay area alone?  It’s as if there are more handicap placards than there are parking spaces.  Are there really that many people who are in need of those spaces or has the poorly-designed system lured in fakes and abusers?

Sure, my husband’s type of injury-quadriplegia- is a slam dunk for qualifying for a placard, but for us there is a reason why we need those special spots. In our case it’s really not about being closer to our destination. I’ll be the first to admit that as the pusher of the wheelchair I can certainly stand to get some extra exercise, so parking a bit away isn’t the issue. It’s all about having enough space, which the disabled spots provide, to open the car door all the way in order for us to get my husband in and out of his chair. That simple.

So when you see a 17 year-old pulling up in a handicap spot at Guadalajara Grill in order to get their take-out order, or a 25 year with 6” stiletto heels pulling up in front of Jamba Juice to quickly get in line at the expense of someone else’s opportunity to park there-such as ourselves, who need the spot legitimately---I have a problem with that. 

Who is eligible for a placard? An authorized medical provider has to verify your impaired mobility and eligibility requirements. They are:

• Your mobility is severely disabled because of a disease or disorder

•  You’re restricted by lung disease, specifically with a forced expiratory volume (FEV) for 1 second, when  measured by spirometry, is less than 1 liter or your arterial oxygen tension is less than 60mm/hg at rest.

• You’re missing or lose the use of one or both hands. 

• You have a significant impairment, are missing or lose the use of one or both legs.
• You have vision issues, such as low vision or blindness.

·        (Your doctor will also have to provide detailed descriptions of your disabling conditions when noted on              the application.)

Do you think everyone who is parking in those spots suffers or is transporting someone who suffers from the above?  Just because you are in possession of a placard doesn’t give you the right to use it if you are not disabled or are not transporting someone who is. I never park in a handicap spot when my husband isn’t with me, and others shouldn’t either.

So what are we to do? You can’t assume that the person who is parking in the disabled spots isn’t disabled, because maybe it’s not apparent (as would be the case with someone suffering from lung disease or a heart condition).  Even when it is apparent that someone is abusing the spot, confrontations don’t accomplish anything.  They may claim that “I had hip surgery awhile ago and I need that spot.” Our hands are tied. In terms of financial penalties, the only person who can do anything about it are the enforcement agencies.  I rarely see a car parked in a handicap spot that doesn’t have a placard hanging from the rear-view mirror or with a handicap logo on the license plate. People are smart enough to at least do that. But what about the story behind the placard?  If agencies responsible for enforcement took the time to verify that the placard matched the person who was issued the card, the coffers would be so much more full, and the spots would be readily available.

As for the doctors (and that includes, surprisingly, midwives and chiropractors) who readily hand out the forms…ask yourself…does the person for whom you are authorizing the placards really need it? Do they fit the description of someone who is entitled?  Those blue placards allows the person to enjoy the privilege for two years before it has to be renewed, 6 months for the red placards. The buck stops with you, so please as a favor to those who are in desperate need of those spots, show some restraint.

As for the rest of us…Teach your children, your friends, your family, that it is not okay to use Grandma’s placard to get a coveted spot at the movies, or a free spot in a metered spot in the downtown area.  Show some consideration and compassion for those who are severely disabled.  They don’t have much, please don’t take away one more thing away from them…

Ever since I was little, the section of Reader's Digest Magazine that I always turned to and read first was "Quotable Quotes."  I love reading what genius, and insightful things other people have to say. It makes me stop and think.  Sometimes I learn from them.  Other times it validates what my brain already believes, and makes me feel good that I am not the only one out there thinking the same thing.  I came across the above quote yesterday during our first day in Maui.  I don't know who authored it, but boy did it send chills up my spine when I first read it. 

Without a doubt that statement has held true for me. It's easy to believe, it's even easier to hope, but the struggle comes with trust.  It takes time. It takes proof. It takes a leap of faith

When I walked off the plane two days ago, at the very gate that I departed from on August 14, 2012, something very powerful came over me. We were the last off the plane. My son was in front of me pushing my husband's wheelchair, and I was fumbling with all the bags. After I strapped the bags over each shoulder and started walking,  I glanced over to the very spot I sat when I was ready to come home to an unknown future. Unexpectedly, the tears started flowing. I kept dabbing my eyes, not wanting anyone to wonder why I was crying, but the tears kept coming. I could hear Hawaiian music play in the background, which only triggered more tears.  At one point my son turned around and noticed I was crying, and asked what was wrong. I didn't know.  I just knew my body was releasing some of the toxic poison that had built up over the past two years.  I needed to shed the blanket of despair that had cloaked my spirit for the past two years.

We had come so far to get to this moment in time. We have been to hell and back, painfully deprived of some of those sweet moments life has to offer.  We came back to the island with hope, and the belief that some good will come of this trip.  We have to trust that it will, for we have a life that needs to be lived. 

When I was talking with a friend 11 years ago on New Years Eve, I was inspired by the t-shirt he wore- a souvenir he earned from running the Pamakid's Half-Marathon race earlier in the year. For me, running a long race was something I had yearned to do for a long time. The idea was very appealing, but also very intimidating. I was afraid to stretch out of my comfort zone and run farther than my usual 4-6 miles. My friend encouraged me to train for the annual race, which was just but a month away. I followed his advice, and with some guts and a bit more training, I was able to finish the Half-Marathon that was held on the very rainy Super Bowl Sunday of 2004.

Shortly after the race I couldn't help but think about the next big step in a runner's world. I wondered if I was cut out to run a full 26.2 mile marathon. I knew training for a marathon would be a huge undertaking. It would take a lot of effort and discipline, and would certainly eat up an enormous amount of my time. But after several months of careful consideration, I finally made the decision to go for it. I started training in early September 2004, and ran the race three months later on December 5th with a respectable time of 4 hours and 20 minutes. I was proud that even in the face of fear and doubt, I was able to achieve a lofty goal I had set for myself, and finish what I started. It is by far the biggest fete I've conquered in my lifetime.

 About a year ago, as it was with my half-marathon race, I had a strong desire and encouragement from my family and friends to start a blog. It was a way to not only share Vaughn's progress and document some of our crazy stories that went along with our situation, but was a means to heal through the power of writing.  It's been very therapeutic and helpful to me as well as to people around the world, who have reached out to me and been faithful readers of my blog.

There is so much more to write, and many more stories to share.  I've decided after much consideration that it's time to take it to the next level, much like my decision to run a marathon, and write the book that I've thought about writing for a long time now. It will be a huge undertaking, and I don't know how long it will take or if it will ever be good enough to publish, but whether it does or doesn't happen, I owe it to myself and to the legacy of our story to go all the way.  And  hopefully some day I will be crossing the finish line with book in hand.
I hope you will enjoy an excerpt from one of the chapters I've already written. Please give feedback if you like...

Sunday, August 12, 2012:
The routine remained the same…in the middle of the night at 3:00 am, the door would swing open and a team of graveyard shift-workers would maneuver a very, large portable X-Ray machine that would bang and clank as it rounded the corners into our room.  These coffee-infused nurses and technicians moved aside chairs and tables to make way for the machine that, without fail, jolted me awake each and every night at a most ungodly hour.  

            “Time to wake up.” they said to me as they hastily drew the curtain that gave us if only a bit of privacy.  I was already awake, never really allowing myself to enter into the deeper stages of the sleep cycle. I was on guard at all times, like a British Beefeater assigned to protecting the crown jewels. 

As I squinted and shielded my face from the blinding, fluorescent lights, I asked if I needed to exit the room, hoping that the answer might change just this once. With each passing night, my body was growing more weary; tired and run down from each battle I was facing.  Every day it was a new challenge… from fighting with the insurance company, desperately trying to get my husband off of the island, to sparring with the physicians, who wavered in their approach to my husband’s care.  Any moment that wasn’t occupied dealing with all of the logistics, was dedicated solely to being bed-side with my husband. My sleep debt was mounting, owing more hours than there were to give.  

But as I suspected, the nurses weren’t going to bend the rules just so I could get more sleep. I wasn’t of their concern.  As it should be, their focus was dedicated strictly for my husband. I was just lucky enough to occupy space in his room, which under normal circumstances wasn’t usually allowed.  It was imperative that I leave the room to avoid any unwanted radiation exposure.  It was hospital protocol. 

A week spent in the ICU, an absence of physical activity, assisted breathing from a machine, and aspirated water from the Pacific Ocean…all risk factors that could lead to any number of complications, including what I feared most for my husband: pneumonia, “the captain of the men of death.” Thus, those inconvenient, early morning awakenings, and x-rays that could easily detect a brewing infection, were imperative.

The nurses woke me up, yet again, at 6:30am that morning to tell me that I needed to leave the room. That was routine as well, only it was mandatory that I not return until 8:00am. Shift change. At that time, they relayed the results from Vaughn’s X-rays that were taken 3 hours earlier. Things weren’t looking too good. There was an accumulation of fluid in his lung, an indication that he may be developing an infection. His heart rate was up, and his oxygen saturation rates were dropping.  It was as if he was drowning all over again, only this time it wasn’t from the ocean.  It was determined that he would have to undergo a mini procedure- a bronchoscopy- to remove as much of the fluid and debris that was accumulating and blocking the flow of air into his "dirty" lungs.

The nurses hesitated to tell me this latest round of bad news, because it meant that Vaughn would have to undergo a procedure I was so scared for him to have. It also meant he would have to go yet another day with a breathing tube in his mouth. It would translate to another day of him not being able to speak. Another day of pointing to letters, and nods of yes or no.  Another day of frustration. Another day of sadness, and dashed hopes.

I picked up what little belongings I had (all of my luggage was sent back with the kids) and walked down the hallway to the lone bathroom wearing the same pair of sweats, tee shirt and socks that I had been schlepping for the past four days.  By now, it was Sunday, August 12th, the day after my son’s 18th Birthday.  I was all alone. My kids were gone, and my brother-who came out to the island to lend support-had flown back home the day before. It seemed like an eternity since the accident, yet we were only 7 days into what would become a long journey of pain and despair.

 It was as if we were characters in the book, “The Divine Comedy”; stuck on the first circle of The Inferno, desperately trying to pull ourselves out. Yet like Dante, we were “falling into a deep place where the sun is silent.”

That lone bathroom became my safe haven.  I was able to lock the door and through a mountain of tears, unload just a fraction of the stress that was strangling my existence. When I looked in the mirror I saw someone who was reminiscent of the lady in Dorothea Lange’s picture: ”Migrant Mother”- the classic picture depicting the toll  The 1930’s Dust Bowl Era had on the working poor.  I had already earned some battle scars that were etched in every facet of my face. My eyes were swollen, dark circles framed the eyes that seemed to defy any sort of happiness or good feelings.  I hadn’t eaten in nearly a week.  The weight loss was already evident. I talked to that person in the mirror.  “You need to pull yourself together and get through today.  He needs you. You need you...”

The story doesn't end there. I don't want to give away too much, but that day turned out to be one of the worst days of our journey, most especially for me. 
I will continue to write my blog, even while I work on the book.  As always, I thank you for your continued support and kind words.
XXXOOO
Denise

One day, when my husband was 75 days into his hospital stay, I walked out of his room to get food at the hospital cafeteria. When I was walking down the long hallway, I passed one of the Rehab nurses. She stopped, extended her arms and gave me a big hug. She reached down and grabbed my hand and said, “You have no idea how significant it is that you are here every day supporting your husband.  I just wanted to tell you that, and thank you for hanging in there during this very difficult time.” 

 I didn’t think much about it at the time, but came to appreciate what she said to me that day.  She relayed to me that families with spinal cord and traumatic brain injuries are at “high risk.” There is a higher risk for abandonment, and for relationships and marriages to crumble under pressure. Being a nurse in the Rehab Unit she witnessed many a family fall apart due to the incredible stress that is inherent with these kinds of injuries. For some, the magnitude and prospects of living life with an injured partner may be the precipitating factor. For others, it may be a struggle with image--wheelchairs and catheters, effort and inconvenience. There are even those cases where the dissolution of the relationship is initiated by the person who is injured, because that person doesn’t want to be a burden to their family.

The fact is we all have choices…both the able-bodied and the injured.  We can leave and unchain ourselves from all of the responsibilities that comes with a catastrophic injury, or we can stay and choose the path of endurance, effort, loyalty, and commitment.

For me, the choice was simple.  There was no pondering or hesitation. There were no regrets or second guessing. It wasn’t even a struggle. It was the quickest and easiest decision I’ve had to make over these past two years.

 Isn’t everyone ultimately in search of the same thing in life…to be happy?  Don’t we all strive to find that person who will love us unconditionally and accept us for who we are? Don’t we want someone who will make us smile and laugh and share in all of life’s greatest moments? For me, I found that person over 25 years ago.

Other than the fact that my husband's body doesn’t quite move the way it used to, he hasn’t changed as a person.  He is still the same, wonderful, loving, funny, and generous person as he was before. Everything I've ever wanted in a person is right in front of me. I have a partner who is here; someone who is not distracted, someone who is engaged 24/7.  He listens. He shares. He believes. He loves. He is.

Undoubtedly we have indeed experienced heartache and stress, that is and was to be expected. Yes, we have had many a crazy day. But even on our darkest days, my loyalty and commitment to Vaughn and our marriage is unwavering. Our experience has both strengthened and reinforced our relationship when it easily could have torn it apart.

And it is my wish always that for those that are faced with similar circumstances, that they find the strength and hope that they so desperately need and deserve, to move forward with peace and clarity.

                                      “Love recognizes no barriers.
                        It jumps hurdles, leaps fences, penetrates walls 
                                to arrive at its destination full of hope. "
                                                 ~Maya Angelou

Here I sit on the evening of January 4th, 2015---feeling like I always do just after the start of a New Year.  I feel a bit sad that the holidays are over and am forced to wave goodbye to the fairy-tale month of December.  I’ve always loved the time between the Eve of Thanksgiving until the last moment of New Year’s Day, because it’s a time I’m guaranteed to spend with my family and my friends, and am able to witness the good intentions and generosity of people.

  You can say I am a traditionalist.  Although changing things up a bit and doing things for the first time can be exciting, for me I find far more comfort with consistency, routine, and tradition. I do relish in doing the same things over and over with the same people in the same location.  I look forward to it. I depend on it. I need it.  

Somehow the month of December is set up perfectly to satisfy my desire to both enjoy and perpetuate those traditions that are near and dear to my heart. But those traditions don’t always come so easy.  Sometimes it’s easy to let annual events or celebrations fall by the waist-side due to time, or lack thereof.  Often when you skip one year, it’s so much easier to skip the next year and the year after that and so on…and before you know it you've lost a connection to your past and sometimes connections to others. You can only look back and say, “remember when we used to…”  I don't want to fall prey to that. Traditions help bridge yesterday to today and today to tomorrow. Traditions are important in that they unite and bring people together, which is something I don’t take for granted, now more than ever..

The month started with our annual trip to The Clayton Valley Tree Farm to pick out our Christmas tree.  While we anxiously waited for our tree to be cut and bailed, Jenelle, Kyle and I soaked in the moment knowing that this day would be the start of many good times to come during the Christmas season.  We gleamed with happiness in anticipation for our upcoming evening that would be filled with tree decorating, egg nog, Christmas music, fun and laughter.  Although Vaughn wasn’t able to get out of the car to help us pick out the tree due to logistics (his wheelchair wouldn’t be able to plow through the sawdust and the mud), he sat in the front seat and watched from afar. We took turns keeping him abreast of where the tree was in its process of being picked, bought, cut, and bailed.  It was important to each of us that he partake in the tradition as best as he could, for it was only two years previous that he was forced to miss out on this important occasion due to the fact that we were trapped inside our house with no way to get him around with his electric chair. At that time we sent the kids forward to get the tree, while Vaughn and I stayed behind and did our best to think happy thoughts even though we couldn’t be a part of something that meant so much to us.  We vowed that we couldn’t allow this to happen again, and that we would do anything to ensure that we would be together to celebrate and enjoy all the traditions we spent so many years to create.

And as it turns out, the joy of our trip to The Christmas Tree Farm, which actually took place the day after Thanksgiving, was only the beginning. I couldn’t wait to pull the boxes down from the attic and decorate every corner of our home. For the past three or four years I wasn't as excited to decorate as in years past, and only felt like I was just going through the motions in order to check the box that I had fulfilled all expectations associated with Christmas. But this year was different.  It was as if my mind woke up from a long hibernation. I longed to feel excited about the joy of Christmas and all the good feelings that come with each day leading up to the big day.  I relished in every moment—whether it was laughing with my girlfriends at Henfest, or watching my little niece get so excited opening her Christmas presents on Christmas Eve.  The feelings were intense, warm and unforgettable.

I can’t help but think that the turn of attitude had something to do with our situation.  It’s written about often that after people go through devastating times, they learn to appreciate the small things in life.  Life’s special moments are all the more sweet.  I can honestly say that I never enjoyed the Christmas season more than these past few weeks. It was like the movie “The Grinch who Stole Christmas.”  Although I would never describe myself as a Grinch, I definitely felt my heart swell with good tidings. And in turn, those good feelings flowed outward to others. The night of December 23rd was a good example of that... 

 It has been our family tradition on December 23rd to go to Union Square in San Francisco and have dinner at John Foley’s, an Irish pub a block over from The Square.  This was to be our first time back to partake in this tradition since before Vaughn’s accident, two and a half years ago.  As always, Vaughn and I had a few “Miller Manhattan’s”-a family drink that my Great-Grandparent’s created a long time ago.  Each of us took turns toasting to the year and saying something kind about one another. My heart was full of pride and love and I can declare that this was my favorite evening of the Christmas Season.  But the evening didn’t end there.  When the waitress came to give us our bill, she told us that someone secretly paid for our drinks. It was a “pay it forward” gesture.   We felt so honored to be the recipient of such a kind gesture from a mysterious person, as this never happened to us before.  We immediately felt the need to pay it forward ourselves and ended up with an exchange of our own with a man who lived near the freeway and was truly down and out financially, mentally, and emotionally.  

And so it goes...happiness engenders tradition, and in turn tradition engenders happiness.  I am happy to say that this hold trues for me now more than ever. 

Thank you 2014 for being kinder to me and my family, and thank you to all the supporters of my blog for continuing to read and giving me reason to write.

Happy New Year to you all!

Every Thanksgiving my entire family comes together to celebrate what has become my favorite holiday. It is our tradition every year to take turns saying what we are thankful for.  It takes a long time as there are usually 25 of us, but it is such a treat to hear people say what they are grateful for and what has made them happy over the past year.  There are always tears, a lot of laughter, and a sweet feeling of family camaraderie. This year, a few of the speeches weighed heavily on me and made me reflect on what really matters in life.

My younger brother started the evening off with an announcement that he and his wife, Sally are expecting another little one in May.  This was the best news of the night, especially since it was only 5 weeks ago that he nearly lost his only child in a freak accident that still baffles my mind.  My little niece is a joyful addition to our family and we count our blessings that she not only survived but is happy, healthy, and continues to be a bright light in each of our lives. 

When it was my son's turn. I choked up with what he had to say, because I didn't realize the profound impact the Isla Vista shootings, that took place Memorial Day weekend this year, had on him and his classmates. The impact of that night was far-reaching. Although he knew people who witnessed the shootings, he is so grateful that he and his friends were not physically harmed. 
 
But the best speech of the night, in my opinion, was the one my daughter gave. In addition to saying what we were thankful for, each of us had a different question to answer and the question she had was "what is your favorite family memory?"  If she had been asked that question three years ago she might have said that her best memories were those that happened in Europe or Hawaii.  Now, she says that some of her fondest memories were those that took place with her father when he was in the hospital for three months. It didn't matter that she was inside the walls of a hospital-an inherently sad, and depressing place-she was just grateful to spend some quality, one-on-one time with her "Diddy."   She summarized by saying that it isn't what you have or where you go that matters, but who you get to spend your life with...that is what really matters. 

It dawned on me that each of the people who's speeches impacted me the most were the people who nearly lost a loved-one or someone dear to them, and much like myself came face-to-face with what could have been a devastating loss.  But what was special was the epiphany each of them had about what really matters. Sometimes it's the small and simple things shared with those that we love, that can give us the most gratification. I know for me my "bliss" is as simple as snuggling up with my family talking or watching a TV program that we all enjoy. That's what make me the happiest...something so simple, yet so beautiful.
I think that is the way it is for most people.  Once they figure out what is truly important to them, and they live it, then happiness is sure to come.

I didn’t realize how fast time is flying by, because it’s been nearly three weeks since my last blog post.  I haven’t been writing these past few weeks, not so much due to being busy with day-to-day living, but due to the heavy celebrating that has been going on during this most, beautiful month of October.  Selfishly, most of the celebrating has revolved around a milestone birthday that has been bestowed upon me.

I really didn’t prepare myself much for this occasion, because I was too busy living life as a ‘49er, never thinking much about the fact that eventually it would be my turn to actually have a birthday.  Most of my high school friends already hit their 50th birthday's throughout this past year.  Growing up with an October 17th birthday, I was always the youngest amongst my peers: the last to turn 16, the last to turn 18, and more important, the last to turn 21. I was always so bummed that everyone in my grade was older than me, hitting the "fun" birthdays before me. Heck, I was only 17 when I went to college!  Yet as I got older and those “fun” birthdays came and went, I was glad that I was the younger one.  It gave me a chance to see how my friends handled hitting their milestone birthdays' (30, 40, and 50), and allowed my brain a chance to prepare itself for the fact that I was that much further from the cradle.

As each of them hit 50, one thing that I noticed (on Facebook and in person) over and over, was that no one was freaking out. No one cried. No one had sad face. No one complained.  Everyone smiled, and took their birthdays in stride. I was hoping that I would do the same. I remember my Grandpa Rudy telling me once that he thought the best age to be is 55! I asked him why, and he said because at 55 you are young enough to enjoy life, and old enough not to care what others think or say.  So 50? No biggie, right? I still have 5 more years before I am supposed to have the best year of my life!

A few weeks before my actual birthday, a group of my closest friends treated me to a wonderful birthday weekend in San Francisco. They kept all the events a secret until each event unfolded. I was made to feel like a princess with flowers, presents, dinners, cocktails, a champagne cruise, Beach Blanket Babylon, a tiara, sash, and gold shoes. I had a blast, and without a doubt had one of the best times of my life.  I laughed all weekend and came home tired and with a hangover, but with a refreshed soul and memories to last a lifetime.  Yet, during all of the celebrating, I really didn't feel like I was turning “50” because I still had two weeks to go. For me it just felt like one gigantic party and I was at center stage!

A few years ago before the accident, Vaughn and I talked about my 50th birthday and our 20th wedding anniversary, which took place in 2013. We decided that we would combine the two big events into one and take a trip back to Italy to revisit Venice, my absolute favorite city in the whole wide world. But unfortunately that trip wasn't to be, at least not this year. Although it is my dream to get back to the city of love and romance, it will be postponed until Vaughn is ready.  That day will come. That is our hope and dream, anyways!

In keeping with the spirit of Venice, I was lucky enough to spend my actual birthday and the days to follow, at The Venetian in Las Vegas with Vaughn and Jenelle (Understandably, our son Kyle couldn't make it due to midterms and college). Though The Venetian wasn't the real thing, it was close enough, and all that mattered was that we were together.

I decided that I would squeeze every last ounce out of being 49, and every ounce out of the actual birthday itself.  One hour before the clock struck 12:00, Vaughn, Jenelle and I went down to the casino area. I figured that if I was going to hit the jackpot, now would be the time. I played a few slots ($20 worth) but unfortunately it took a grand total of 10 minutes for the machines to chew up my money. I wasn't really into playing the machines, and didn't feel like playing cards at $15/hand minimum either. All I wanted to do was be with my family and toast to the passing of the decade. 

Ten minutes before the hour, and on our approach up to the casino bar to order a “birthday shot”, I had a funny feeling come over me. It was the first time I actually felt nervous to be turning 50. I didn’t know what I was afraid of.  Perhaps turning 50 meant that I was actually that much closer to the end. I was already half-way there if I was to live to 100.  That thought scared me. I didn’t want to be on the back end or the tail end of anything…who wants to be there?

I didn’t have time to think about it much longer, because the shot was in front of me and I didn’t want to waste any more time being scared about the inevitable. One minute before the clock struck 12:00, I stood at the bar with my daughter and husband there to watch me drink the “birthday” shot, which actually seemed double in size.  I spent the last minute nervously shaking my leg as if I was about to jump out of an airplane, and honestly I don’t know what I was nervous about. Big deal that I was turning 50.  My friends did it. My husband did it, as did my sister, my brothers, and my parents.  They all survived and are all doing just fine.

Jenelle and Vaughn did the count-down, and when the clock struck 12:00am on October 17th, I downed the shot and decided that all I really could do was to embrace this time in my life, to love it, and most importantly to live it!

When I was finished with the shot and they were done saying “Happy Birthday”, we walked back through the casino towards our room. Vaughn asked if I wanted to play some more machines.  No…I don’t need to play anymore.  I already hit the Jackpot.  I have wonderful friends; incredible parents & siblings; and a husband, son, and daughter, I love more than life itself.  So here’s to being 50…May it be all that it can be, and much more!

XXXOOO

Denise

It was just over  a week ago that our twenty-year old son, Kyle left to start his Junior year at UC Santa Barbara, a college that is located on the beautiful Pacific Ocean, in sunny Southern California.  The beauty of this college town-including the people who are happy to attend there- has taken the sting out of saying, “Goodbye Son” each late September these past few years.

Before the accident, in the summer of 2012,  Vaughn and I talked a lot about the day we were going to drop Kyle off at school for the start of his freshman year. We knew it was going to be tough.  I kept reviewing in my head how I thought it all was going to play out:  

•  I figured that in the month before his departure, Kyle and I would hit the Mall several times to shop for clothes, bedding, and any other item necessary for dorm living. We would go from linen store to linen store looking for the right-colored bedspread with matching sheets and pillows. 
  
•  I would take him out to lunch once-a-week, and have long conversations about college life.
  
•  We suspected he needed glasses for long-distance reading in lecture halls, and he would be evaluated by our town's most reputable ophthalmologist. 
• When it would be time to leave, the family would drive down to Santa Barbara a few days early, hang out on the beach, and  go out to a few dinners.   We would help unload his stuff and help carry it to his dorm room.
•  I had visions of making his bed like they do at hotels, with the corners tucked neatly under the mattress and the bedspread folded back, adorned with many pillows of various shapes and sizes. 
•  We would exchange hugs, I would cry, and we (the proud parents) would walk away with bittersweet feelings--excited for him, but sad to say good-bye.  
  

But as you might expect, the send-off (as well as the month of prep before-hand) went nothing as expected due to the aftermath of the accident, and the enormous amount of energy that was re-directed to coping with our situation...

• The five days of shopping I envisioned to get Kyle fully armed for college, was pared down to less than two hours while we waited for his eyeglass prescription to be processed from a Lens Crafter located at the Mall closest to the hospital.  
• As for all those lunches? We had ONE---at a local deli, and it wasn't the lunch that should have been---one where I talk to him about how much I loved him and how proud I was of all that he accomplished to date.  Instead it was a lunch filled with tears, sadness, and feelings of guilt that I wasn't giving my son the proper attention he so earned and deserved. 
• As for the 3 day adventure to Santa Barbara we had slated for my family? It wasn't to be...
  

Yet, the “Goodbye” that we had to settle for-one that was unconventional and did not go according to plan-turned out to be one of the most love-filled, and heartbreaking moments I will never forget..

It was Sunday, September 23rd, 2012... the day after my parent’s 50th wedding anniversary as well as the party they threw to celebrate their special occasion with all of their family and good friends.  They were all there except for one important person: Vaughn, who unfortunately missed out because he was still in the hospital.

So there we stood---our family of four--- in Vaughn’s hospital room, squeezing out every last moment of being together before I (with the company of Jenelle) would drive Kyle down to Santa Barbara to start college. Eventually the clock struck 11:00 am-the time we had to leave.We strung out the morning as long as we could and when we couldn't stretch it any longer, Jenelle and I took turns giving Vaughn our hugs and kisses. We went first, because we would be back the next day.  I was dreading this moment, not so much for me, because I had at least 8 more hours to be with Kyle, but more-so for Vaughn. I ached for him thinking about the emptiness he would feel when we left.  I figured that this would be yet another sad day in our version of a “series of unfortunate events.”

Finally it was Kyle’s turn, and the last to say “goodbye.”  I knew Vaughn was savoring every last minute with his son, for it would be until Thanksgiving before he would see him again.  It wouldn't be the goodbye that Vaughn always talked about. It would be much different.  Instead of Vaughn fulfilling his vision of being the Dad who helped his son carry his things to his dorm room, he would lay helplessly in bed, dreams dashed, left to watch his family leave without him.

Kyle inched up to the side of the hospital bed, reached out and placed his hand inside Vaughn’s hand, which at this point in his recovery hadn't moved since the accident. There was silence and a quiet connection between the two of them.

Given the moment and all the surrounding circumstances that were soiling Vaughn’s dream, I expected Vaughn to break down and cry, and Kyle to console him, and tell him, "It's okay Dad.”  But that’s not what happened…

Even in the face of incredible sadness, Vaughn stepped up and pulled through like a champ. He  showed incredible strength and courage. He said all the things he wanted to say in a voice that was so comforting and reassuring. He let Kyle know how proud he was of him. He also gave sage advice about taking advantage of the four years ahead, to continue to make good choices, and to set himself up nicely for his future.  He didn't leave anything unsaid, and said everything he had to say with the most loving look on his face...no tears, only strength.

 I sat back with tears rolling down my face, because I was so proud of my husband.  Although he wasn't on the sands of Santa Barbara saying goodbye to Kyle,  he was able to embrace the moment and deliver one of the most heart-felt speeches of his life.
  
Kyle stood there, lip quivering, with tears rolling down his cheek. He bent over and hugged Vaughn for a long embrace and told him, “I will make you proud Dad, like you already have for me.”

At that very moment, the uncertainty that I had built up in my head---that my child’s love and comfort had some how been damaged by the accident and all the craziness that followed---assuaged my concerns.  I knew that if anything, the love we have for him and him for us was solid, and that the bond we had developed over all of these 18 years could not be broken by one untimely wave.

As painful as that moment was, we had to leave and let our son go. We hoped he would thrive and do well, and without a doubt he has done that, and even more.

And now, when Kyle is asked how he feels just before he leaves back to college, he always says,
 “It’s bittersweet... I’m excited to go, but sad to leave.”

 I had a blog post almost totally written when my computer decided to be testy. That's okay, because I keep a lot bottled up in my head and much to share.  The other post I started to write will have to wait for another day. Perhaps it was better this way, because something came up that made me want to write about another subject matter today. 

A friend of mine has suddenly been thrust into the dark world of cancer.  One day she goes in for tests, the next day she says she needs to start chemo ASAP. That beautiful, long, mane of hair that has forever been her trademark had to be cut.   It made me sad to think of her trip to the salon and all the thoughts that might have been swirling in her head.  I could identify with her, because I've always had long hair ever since I was in middle school and it too has always been my trademark. 

She would be saying goodbye to her hair---a part of her that was there for all of the important memories in her life---the vacations, her wedding, the birth of her children, their graduations, etc. Although it's just hair, and hair does grow back, it was a part of her--a symbol of happy times and good things.  Of course it isn't just about losing the hair... it's so much more, and the turmoil such an awful disease can bring on its innocent victims.

It wasn't long after I started thinking about all this when I saw, on Facebook, some pictures of my friend's new hair cut. She looked great! But what struck me more was her smile. Her smile reflected strength and someone who was being a good sport.  I was so proud of her to see her be so brave and strong.  I can only imagine what she might have been feeling inside. More than anything I want to be there for her and her family while they navigate through the rough waters that may lie ahead.

In the beginning, after something like this happens, everyone wants to get involved and be a part of the story in some way.  It's what I love about people.  Instincts are good.  People have good intentions. They want to be supportive and show that they care.

After living through an unimaginable ordeal myself, I want to take all the good things that I learned and observed and pay it forward to the next person who is in need.  There were some people who were absolute stand-outs and made each of my days and that of my family's a little easier than the day before. They are the people I want to emulate...

They are the people who have great instincts, AND act on them. They don't ask a lot of questions, they just do.  These are the people who spearhead the calling trees, and organize the meal drop-offs for the families in-need. They wipe your tears, drive you to the hospital, and rub your back when you are praying to the porcelain goddess.  They give the biggest and longest hugs. They were the people who reached out every day in some shape or form. It may have been as simple as a text: "Hi Honey, thinking of you. Hope your day is going better than yesterday.  I’ll call you later." They know when it's okay to ask questions, and when it's better to just listen and be that shoulder to cry on.  They know your pet needs to be walked and fed...they take care of it.  They know your plants need to be watered.  They take care of that too. They know that there are other members of the family that need attention and love as well; if not more...they reach out and give each of them that.  They know that as time passes by and attention to the story wanes, people will start dropping off.  The phone rings less, the mailbox is emptier. Yet, they are still there for you rain or shine.  They continue to write you those notes that say how proud they are of you, and how much you mean to them. The phone continues to light up with bright thoughts in the middle of the night. These people are a rarity, and if you have someone like this in your life, cherish them. 

There were so many other great people who stepped up and made such a difference in our lives, and for that we will forever be grateful. So many people brought meals, helped out with Jenelle, and lifted our spirits with cards and messages.  It was never expected, but always appreciated.

One thing that I learned early on was that people truly want to help out and make a difference.   I remember my brother telling me early on that people want to help out. He told me it was a time in my life I needed to be selfish and let people in.  By letting them help me, I was actually helping them. People want to be useful, especially when others are suffering. It fuels their souls and makes people feel good about themselves.

Some of the things I really appreciated that people did for me and my family, and I in turn hope to do for others are the following:

• My friend Kim signed up with Lotsa Helping Hands and got our community involved with helping our family.  Lots Helping Hands (there are others like it) is a website that allows people to sign up for meals and other designated needs (for example, in our case driving my daughter to and from school). It was such a gift to have people bring us meals and it allowed people a chance to poke in--even if for a few minutes--to say "hi" and after the hospital stay was over, a chance to see my husband. 

• Gift cards to restaurants.  This was such a treat and never expected. We really enjoyed getting out of the house and getting our minds off of our situation. This is always a great gift to give those who may be confined to their homes and would appreciate a special night out now and again.

• Gas cards.  One of our dear friends gave us some gas cards, which really was a clever idea.  I did so much driving to and from the hospital and it was at a time when gas was at an all time high.  This is a wonderful gift, especially if you know someone who is going to be doing a lot of driving to hospitals, rehab, or infusion centers.(It's also a great gift to give college students!)
• Walking the dog or visiting with a pet: Often times it is the pets who take the back seat during tough times.  I had some friends volunteer to walk Chico (even house him) during all of the madness.  Often times I would join the friend just so I could get some fresh air.
• Walking with a friend: The gift of time is one of the gifts I cherished the most. Once a week for two hours I had it on my calendar that I would walk with someone; usually someone different each week. They knew walking would be good exercise and therapeutic for my mind.  It really helped me get away from our situation and talk through all a lot of what I was going through.
• Cards and Notes: I loved it when we got cards--most addressed to my husband--from people who took the time to express their thoughts and good will.  I put every card we got on the windowsill in the hospital so that he could look at them each day. It was a reminder of how many really cared. In this day and age of social media, it is so nice to get back to the old fashioned way of expressing thoughts.  I plan to do this more often.
• House cleaning: A few of my friends surprised me and came in and cleaned my whole house. I cried when I first walked in the door, because it was so special.  I've thought about this a lot since and I was thinking that gift certificates to house cleaning would be another great ideal to give some one, especially if privacy is a concern.
• Other thoughtful gifts: One of my friends gave me a gift card to get a facial.  It was so sweet because she knew a little bit of pampering would go a long way, and she was right.  I didn't get to spend a whole lot of time on myself, and the time I got during my facial felt like heaven.
• In this day and age of crazy-busy schedules,the thing that goes a long way is just poking in and letting someone know you care and that you are thinking of them. I still--even two years after our accident-- get people surprising me with emails or texts or phone calls letting us know that they are thinking of us and sending lots of love.  Sometimes it's that simple.  I've learned that taking a few moments each day to let someone know you care goes a long way.   

 We now want to turn our attention to those in need and pay it forward. The biggest life lesson I have learned over these past two years is to never live life with regrets, and never miss an opportunity to reach out and express yourself to someone you care about.  You will be glad you did, and I guarantee you the person who needs it most will appreciate it more than you will ever know.

If you ever want to get a dose of humility, and a reminder of just how incredibly lucky we are to have bodies that operate under the power of our will, take the time to visit Sci Fit or any other spinal cord rehab center near you.

I'm humbled every time we go to therapy as I have the privilege of watching all the other SCI (spinal cord injury) patients during their workouts.  I see the same faces each week...all putting an incredible amount of effort into their workouts, desperately trying to get their bodies to move and behave as they used to before each one of them suffered an unimaginable, catastrophic accident.  

Based on my observations, most of the clients are young and athletic.  Although there are some females in the program, most of the clients are male. Some fell victim doing something they enjoyed or doing best: snow boarding, body surfing, climbing, swimming, diving, cheer-leading, or riding bicycles, motorcycles, and ATV s.  Others are victims of car accidents (one by a drunk driver), slipping on ice, gun violence, or slip-n-slide mishaps. A few suffered a stroke, have cerebral palsy, or suffer from some form of spinal cord malady. Others were injured on the job...faulty cherry pickers collapsing, or having ones legs cut off by machinery in the workplace. 

Some come to therapy in electric wheelchairs, some in manual chairs; some with walkers, others with canes. Some can operate their chair on their own, others with the the help of an assistant or family member.

Some come in mobility vans, others in cars, and I've even seen one client drive his electric wheelchair several miles across town to get to therapy.

Some live close-within miles of Sci Fit, others several hours away. Some even have two residences-one near Rehab, and their permanent residence which may be as far away as Redding or Fresno.

Most have the majority of their movements in their arms. Others (as is the case with my husband) have the majority of their movements in their legs. Some have movements in all four limbs, some only two, and some none at all.

Some are driven to therapy with their assistant or hired caregiver; others with a friend, spouse, parent,child, or other family member. Some even have the ability to drive themselves with cars that have been refitted with adaptive devices. There are a few who's only accompanying companion is their dog.

Some patients come two days a week, most three, some four. Some come for one hour, most two, some three, and rarely four.

Most patients are young-usually in their twenties.  The oldest is around 70, and the youngest is a young boy with cerebral palsy who comes to rehab after school. 

Yet even with all the variation and differences among the clients, there is one common thread...these patients and their family members are committed.  They are committed to recovery, they are committed to regaining muscle movement, and are committed to returning to the activities that they so love and miss.  They are committed to some level of normalcy in a world that is often lonely, and that which has been stripped of movement, convenience, spontaneity, and fitting-in.

The effort I have seen put forth by these patients is out of this world.  If everyone invested the same amount of time and dedication into their work-outs as the patients at Sci Fit, we would all look like Arnold Schwarzenegger. Yet these patients are lucky if, with all the time they put into their rehabilitation, amounts to anything more than feeling a new tingle in their leg. Recovery is painfully slow, and time put in never equates to the gain going out. 

I only get to see these folks for a few short moments before or after their sessions, but one thing I've noticed over and over are the smiles and warmth that glows from their faces when I speak to them.  It is genuine.  I get more satisfaction talking with them than I do most people.  They could have a lot to complain about, but they don't.  They are grateful for the time allotted to them, and for the time you spend getting to know who they are and what they are all about.  They are kind, gentile, and they have taught me a lot about the human spirit. They make me happy!

I feel blessed to be a part of the SCI community.  They are my peeps, and I hope and pray that each one of them will achieve the goals that they have set up for themselves.  They absolutely deserve it.

My last thoughts...if you ever see someone in a wheelchair....be kind to them, smile at them, reach out and get to know them.  Assist them when they need you, talk to them when you have questions (and not the person standing next to them), and pray for them.  They are all human beings, they have feelings, goals, desires and they all deserve to be treated with respect.  They have been dealt a lousy hand of cards, but I hope and believe that in their lifetime they will be standing tall and running like the wind!!


XXOO
Denise

  















As the sun hits the window, I'm stirred awake.
 I want to sleep a tad more, but there's none to take. 

 I tiptoe past his bed, he's as still as can be. 
I only need a few minutes to concentrate on me. 

 Most days those moments may be a minute or two, 
I take what I can get before I start my to-dos.

 I sip my coffee, and pet the pup.
 He clears his throat, he's waking up.

 I'm greeted with a smile, and "I Love You, Swede!" 
"Thank You for being my partner, and fulfilling my needs."

 His shoulders ache, his eyes sting and burn.
 I gently wipe them with a tissue, I don't want them to hurt. 

We allot three hours to get ready for our day.
We choose to do it together, we wouldn't have it any other way.

Most days by noon we are off to Sci-Fit.
 It's part of our routine, because he'll never quit.

It takes approximately an hour to get to Rehab.
We pack in a lot of talking, it's never a drag. 

The therapists encourage him to give it his all, 
and over the past year, they've helped him stand tall.

 It's never easy, but he lets down his guard.
 They stretch him to his limits, they push him real hard.

 After each session we drive through McDonald's and get our Frappe's
 It's something we look forward to, cuz it makes us happe'!

 Due to commuter traffic, the drive home takes much longer.
 Yet it's the time we have fun, and are silly...it's made our marriage stronger. 

We spend our evenings watching TV and getting real snug,
and when the kids sign off for bed we still give them a kiss and a hug.
 
 I wrap up the day's chores with a ritual of getting Vaughn comfortable in bed.
 It takes four pillows including the one for his head.

 I push our beds together at the end of the night.
 I kiss his sweet head and thank him for fighting the fight. 

 Although we have our challenges as most people do, 
I tell him before the lights go off, "I only want to be with You." 
~Denise Stephens