Book Debut of "Confessins of a Kidney Transplant"

Well, I never, ever thought this day would EVER come, but here it is! 


***DRUMROLL PLEASE***

It took approximately 6 years to write, revise, and write and revise some more of over 550 pages of 30 years of my life in my book, but FINALLY, my book, "Confessions of a Kidney Transplant Recipient" is available as a hard copy book!!!
"Confessions of a Kidney Transplant Recipient" in the United States!

YES!! REALLY!!!! FINALLY!!!!
Can you sense the excitement?! 

Here is all the information to buy a copy of the book if you are interested and to share with others:




"Confessions of a Kidney Transplant Recipient" in France!

"Confessions of a Kidney Transplant" book in Germany!


  • Lastly, I'm also in the process of finishing up a Kindle version, which will have more details to follow in roughly a month or more
***I WELCOME YOU TO WRITE A BOOK REVIEW ON AMAZON.COM, AMAZON UK, AND/OR AMAZON EUROPE...GO FOR IT!! :-) :-) ***



My ultimate hope is to get this book out to as many people as possible to help those who are suffering from chronic illnesses and their loved ones, those who just feel alone and need dosages of inspiration about life, the power and heroism of organ donor families and their decision, and for the public to know to then register as an organ donor, so please do not be shy to share about my book and its many purposes!

With the money made from purchased copies of my book, I want contribute some of the proceeds to something super terrific in the organ donation and transplant community, so please do buy the book or at least share the information with others.  I just haven't figured out WHAT some of the proceeds will go to in the organ donation and transplant community, but I know it will come to me and more details of that will follow soon enough.

I just want to thank each of you for all your support and encouragement when you read "Confessions of a Kidney Transplant Recipient" as a blog either word for word or glimpsed here or there, or when you told someone about my advocacy work and this book blog, or just for being there. 

All of this made such the positive difference.  One person and our actions can do so much and so many lives are touched and affected in the best of ways.  I couldn't have done any of this without you.
Thank you, Thank you, THANK YOU for all you have done and will do going forward to get the book yourself or share this book with others! 


Keep Smilin',
Mary :-)

"Confessions of a Kidney Transplant Recipient" coming to a bookstore near you....!

Well, I never thought that this would ever happen but....

**DRUMROLL PLEASE***

Exciting, Fabulous, Wonderful, Thrilling, and Super Terrific News to report that "Confessions of a Kidney Transplant Recipient" will finally go live in hard copy format in bookstores, Amazon.com, Amazon Europe, and libraries by March/April 2013!! Just imagine...in your hands to flip through and read the actual pages and the actual scent of the book....yipppeeee.....!!!

Here's a very small preview of the book cover in the making as I write this:


 

The writing of "Confessions of a Kidney Transplant Recipient" was from 2007 to 2009 and finally went live on the Internet as a blog in 2009. I never intended to share "Confessions of a Kidney Transplant Recipient" when I originally wrote it out of self-consciousness about my life and writing, but I now have the utmost purpose and confidence that it is no longer about me and it is finally meant to go into hard copy format to inform the public about the organ donation and transplant community to register as an organ donor and help reach out to more individuals and their loved ones who deal with the physical, mental, and emotional side effects.

Spread the word about the book so people will know about the amazing and extraordinary organ donation and transplant community and sign up as organ donors to help save the lives of over 116,000 individuals who are presently waiting for a life-saving organ.  Please email me at mwu82@yahoo.com  with any other questions or concerns.


 
Always remember and know that you have the power to save a life by making your choice  known both on the registry and especially telling your loved ones. 

Please go to www.donatelife.net  registry to sign up as an organ donor. 

Let the countdown begin and get ready for more details to come, including evites, a book party bash, website launch, book signings, and many more informational and inspirational experiences and exposures to come!! :-) :-)

Thank you all and always for all your support!  We can make a difference together to get the word out to save more lives!! 

Epilogue: The Last Confesion

It was my 26th Birthday.


There was an unusual and almost autumnal breeze on that sunny birthday of mine. My family and I scurried as a pack through the Upper East Side avenues, weaving in between hurried New Yorkers and skipping over subway vents. I had no idea where my family and I were going. My Dad and Stepmom’s facial expressions revealed nothing, while my sister’s eyes twinkled like a little girl. She kept saying: “It is a surprise! It is a surprise!” to my pestering: “Where are we going?”


Finally, before us was a massive family Italian restaurant. It was infamous for oversized pasta plates drenched in rich red and chunky vine-ripened tomato sauce and crispy calamari drizzled with tart lemon juice. As soon as the menu was handed to me, my stomach gurgled over the wide assortment of pastas, pizzas, and breads. My family and I started on an abundance of crusty, warm bread and fruity and neon-colored drinks with umbrellas. We ate our way through bowls of pasta and seafood, patted our tummies, and could feel the beginnings of a food coma.


The royal purple ponytail holders that held my two plaited dangling long braids matched my swirled purple dress with turquoise beads. When I opened my sleepy eyes, my sister’s smoldered and mischievous eyes met mine. That is when I knew that another surprise was in store.


Before I knew it, a perfectly squared cut and large Tiramisu cake was presented before my very eyes with a single striped pink and white candle embedded in the center. As we aged, the candles became less and less. A higher number was somehow seen as a daunting truth that we were just inching closer to our demise when birthdays were a celebration of life and what was learned and experienced in that particular year. Another year older, and another year wiser. I felt wise beyond my 26 years and counting of life.


I met the eyes of my Dad, Stepmom, and sister who all stared back at me with bright and sparkly eyes that beckoned me to make a wish. They sang “Happy Birthday” along with the tall, dark-haired, stubble-faced, and handsome stranger waiters who clapped their hands and stuttered to remember my name in the song.


I grinned widely. I shut my eyes. The camera flash blinded me. This time, I did not make a wish. I could not make a wish, because I had everything I needed then with my family right by my side and at the pinnacle of good health.


This time around, I rewound to my years of life and living and asked myself as the flame of the candle tangoed back and forth that lured into a hypnotized trance: “Mary, if there was a way to take all your minefield of health episodes back or make them disappear as though they never existed, would you take it? If there was a way that I could wave a magical wand to have been born physically healthy without even knowing the word or the functions of the kidney, would I grab it? Do you want a different life? ”


The answer was as clear as that beautiful day of my 26th birthday: “Absolutely not.”


I was aged from one life experience after another. I was a child that found the most simple as the most special that made me giggle or laugh until my stomach hurt and I was breathless. I was a child at heart with an old soul. I was lucky and blessed to have learned so much in such a short amount of time that I was alive. I had fallen in love with my unpredictable and adventurous life that brought me joy, sorrow, anger, laughs, smiles, and tears. In life, everything happened for a reason, and yet sometimes there was no reason but to learn to take actions, live with those actions and decisions, and become better. Life was a combined balancing act force of fate throwing unexpected curveballs at us, but also taking what was given to us and soaring above and beyond with our very own choices and actions.


If I had never gone through and faced my health problems along with the social and familial ramifications, it would not have made me the person I was today. I understood now that nothing and no one defined me, but me alone. I only held a million and one blessings for my attained and maintained health, for these experiences that made me stronger, for my organ donors and their families and their own decisions that had kept me alive and living, for my family, for all the people I met, left, and stayed to teach me life’s greatest lessons as well as joined along on my journey through all my health battles, and for my desires and passions to help and do more for others and the world.


My one breath exhaled from my mouth blew out the flame. The flame vanished and an eruption of claps, cheers, and laughter deafened me. A single strand of smoke floated and disappeared into thin air.


My last confession is that I would not take back anything in my life, and that I would live every single painful and beautiful experience all over again to have met the people I met and learned the lessons I learned. Yet, there are still so many countless confessions that I can share with you, but for now and just for this moment, these are my truths. These are my stories and experiences. Please take with them what you will.


These were my confessions as a kidney transplant recipient.


August 31, 2008: My 26th Birthday



August 31, 2008: My 26th Birthday




Chapter Thirty-Three: The Search

May 5, 2005 was the 10th anniversary of my second kidney transplant. On my 10th anniversary, I was celebrating. I was 22-years-old, finished with university, lost over 60 pounds, had discovered the girly and fashionable side to me, and had embarked on the reality and thrills of the work world. On my organ donor family’s 10th year, I could only imagine that they were grieving.

Every single year since I received my second kidney transplant, I thought about my organ donor and her family. But, my 10th anniversary was different. I could not stop thinking about my organ donor and her family in an obsessive and compulsive way. I kept thinking about my organ donor and my own life. How would the life of my organ donor unfolded if she had lived? What would her family have been like? If she had lived, what would have happened to my own life at 12-years-old? I would have naturally begun hemodialysis, but for how long until I would perhaps have met with death and my own organs and tissues given to so many others who awaited life to begin again? How would my family and friends have been without me? What would this world or life been like without me in it?

Then, thoughts of my organ donor would attack me. In 2005, my organ donor would have been 14-years-old. She would have been only a couple years older than when I received my second kidney transplant. She would have just started high school. Maybe she would have been excited and embraced the new school, classes, possibilities, and people. Maybe she would have been the most popular and loved girl that the other girls wanted to be like and other boys wanted to be with. Or maybe she would have been a nervous wreck like me who was wrapped up in shy and awkward ambivalence. What kind of experiences would she have had from 4-years-old to 14-years-old? She had died before losing her first tooth and tucking it under her pillow for the Tooth Fairy to slip money under there. She had missed out on childhood favorites of learning to tie her shoelaces and riding a bicycle. She had died before even starting kindergarten to paint pictures, build blocks, make friends, and tease teachers behind their backs. What would she have looked and dressed like? Who would she have been?

On the anniversary of my second kidney transplant, I came to the conclusion that time went by too fast. When I was younger, I impatiently waited for the days to go faster and faster and now I was catching fallen stars to hold on to time and wishing it just a little bit slower and a little bit less restless. The years that went by from May 5, 1995 to May 5, 2005 were always nerve-wracking and on edge that perhaps another kidney rejection would occur. I was convinced that it was too good to be true that this second kidney transplant had lasted for a decade. Surely, something was going to go wrong. But, then the day after my 10th anniversary came. I exhaled. I felt a renewed sense of living and of life that I had gone through one whole decade and was now about to truly begin a whole new time of my life. At the same time, an ache and wonder flooded me with constant thoughts about my organ donor family and my organ donor’s kidneys that pumped life into me every single day that I breathed and lived.

This is when I knew what I had to do. I had to contact my organ donor family.

It had been ten years and counting since my second kidney transplant, so I was uncertain if my organ donor family could even be found. However, in 2005, the boom of the Internet, technology, Google, and the obsession and love over such social media sites as Facebook and Twitter had taken over and created a whole new communication and web-based social interaction phenomenon. I started googling such words as “1995 deaths of 4-year-old girl who donated organs in New York.” Search results were convoluted and unrelated to my own plight of searching for my organ donor. I quickly reasoned that I had to return back to basics to try to find my organ donor family.

I contacted the Transplant Center at Westchester Medical Center where I received my second kidney transplant and was put through a transplant coordinator by the name of **Katherine. I actually met Katherine before at Transplant Support Organization meetings that I only went to sporadically when I had the chance and was not knee high in college work, exams, and projects. Katherine was a patient, matter-of-fact, and cheerful lady with short, cropped, and stylish honey brown hair and warm light brown eyes.

Nervous, anxious, and sweaty, I stammered to Katherine, “I am searching for my organ donor family from my second kidney transplant. It has been 10 years. Do you think I can find them? How do I go about trying to find them?”

Katherine cleared her throat and she explained, “Well, let me try to break down the process of trying to find your organ donor family first. To begin with, you need to write a letter to the family. It has to remain as anonymous as possible and extremely general. No specifics of where you live or are from and only your first name. I will send you some information of what can and cannot be in the letter. Once you are finished with the letter, mail the letter to me, and then I will try to find the family and forward the letter to the family’s organ procurement organization. If the family agrees to read and receive the letter then their organ procurement organization will give the letter to the family. If the family does not agree, then the contact stops there and I just hold on to your letter. In many cases, the letter correspondence lasts for a long time and eventually the organ donor family and transplant recipient meet and become an even bigger and extended family. Do you want to go through with it? I can guarantee that the letter will get to the family’s organ procurement organization, but not to the actual family if the family refuses the letter.”

I slowly digested the process in my mind. Without realizing it, my body had stiffened and I was breathless. I let out a breath and finally said, “Yes. Please send me the information about what I should write in the letter. I will write the letter and let you know when I mailed it out to you.”

“Okay. Obviously, I know the transplant center is Westchester Medical Center, but just remind me again the date of your second kidney transplant. I need that information to try to find the family’s organ procurement organization and to track the family down.”

“May 5, 1995,” the words escaped from my mouth, and I knew the process to find my second kidney transplant organ donor family had officially commenced.

In less than a week, I received a pamphlet from Katherine that had puffy white clouds and a light blue sky background with the bold and italicized words of: “Writing to your Organ Donor Family.” Inside the neatly tri-folded pamphlet were suggestions of “Do’s” and “Do Not’s” of the letter from the transplant recipient to the organ donor family along with the entire process. The process was matter-of-fact and emotionally detached. I was not the transplant coordinator that had to hunt, search, and sweat blood and tears to find my organ donor family. It sounded so simple because all I had to do was write this one letter. Only one letter. Since I was 10-years-old, I spent my days writing in my journal, letters and cards to family members, and short stories, so I could surely write this single letter to my organ donor family, right? Wrong. Guess again. I took a beating for that letter. I wrestled with that letter as though it were a king-sized sumo wrestler that pinned me to the ground. “Thank You” was not enough and “Sorry for your loss” was heartless. It was mind-boggling to me that the words that had always been my best friends and sources of solace and escape were now transformed into pesky pains. I moved paragraphs, agonized over words in the dictionary and thesaurus, played with punctuation marks, nibbled on my pencil until I tasted rubber and wood in one, and had to go for one too many walks to escape from that letter but then throw myself right back into it.

I wrote the letter in my spiral notebook that I carried around everywhere and that contained my deepest feelings and free writes. I then typed everything word for word, but I made sure to sign my name. When my supposed masterpiece letter was done, I was frozen, empty, and expected nothing. It was now over ten years and in the eleventh year and counting. I always had a feeling that my second organ donor family was somewhere here in New York, but maybe I was wrong and maybe the family had moved to a foreign country or lived all this time in some other U.S. state where they did not want to be found. Maybe they had moved forward and forgotten through force or maybe they wanted to know and were waiting after all these years for every single detail and fact about the recipients who had received their daughter’s organs. Hearing from me was bound to be like a ton of bricks that hit them when they chose to receive and read my letter. I just hoped that my letter gave a shred of closure rather than a surplus of anguish, and that maybe they would interpret from my letter that I was a decent person that tried to do good things and impact people in the best of ways all because of their one decision to give me my second chance of life. I hoped they knew from my letter that I carried their daughter’s kidneys as prized possessions when I traveled the world, connected with the most inspirational and interesting people inside and outside of the transplant community, spent time with my family and friends, and when I was set on working in the social service field with passion and personal knowledge and experiences that only made me stronger. Hope. Maybe. Perhaps. Possibly. What if? I panicked, analyzed, and scrutinized incessantly, but when it came time for me to tuck the letter away in an envelope, an enormous relief and peace washed over me. Now, all I could do was wait. And, I was accustomed to waiting. Waiting for my transplants. Waiting in doctor offices at scheduled appointments. Once I signed, sealed, and delivered my letter to Katherine, that is exactly what I did—wait.

Days went by and I heard nothing. Every night, thoughts of my organ donor family and organ donor intensified. My organ donor filled my head in the bright daytime and sleepy nights with her pretty smile and wide and innocent eyes. As an instant response to these thoughts, my hand traveled to the scar of my second kidney transplant on the lower left side and pressed there for a silent moment as the link among her, her faceless family, and me.

The days turned into weeks without a word from Katherine. I worried that my letter had not reached them or, even worse, my letter had offended or hurt them. I hoped so hard and prayed within everything in me that my organ donor family was found and that they would not hate me for the painful reminder of their daughter whose life was cut much too short at 4-years-old. The worries manifested into anger that I had waited a decade to contact and try to find them. How could I have waited so long? They probably thought that I was some ungrateful and heartless brat for waiting this long to finally give it a go to find them! I wished so hard that I could go back in time and that I had written to them much sooner. I soon followed up every other week or so to see how Katherine’s hunt for my organ donor family or at least their organ procurement organization was coming along.

She was a woman of few words: “Sorry, Mary. Nothing.”

Months went by. I started working by then. My obsession to find my organ donor family had waned, but was still there in the back of my mind. I felt bad for constantly pestering Katherine with a follow-up, but I could not let go.

I continued to call again and again with a pitiful: “Any word?”

Katherine sighed “I’m sorry, Mary. Nothing. You have to understand that it has been over ten years, so it is very difficult to find them. Patience is a necessity.”

Yes, I understood. I really did, but knowing this did not make the wait any less difficult. It was the not knowing if they would ever be found or if my letter would ever reach them that throbbed my insides with pangs. It was as though I was destined to only know my organ donor family through my fantasies and dreams rather than reality.

A year went by. Nothing. The catch about time is that it just keeps moving and moving, and we eventually get so caught up in the routine or often chaos of life. Eventually, my initial contact to Katherine turned into a distant memory and I gave up this silly notion of finding them.

Another year went by. Katherine and I lost communication. I moved on with my life. Then, the lucky thirteenth anniversary of my transplant anniversary came and went in a blink of an eye. I was no longer a quarter-of-a-century years old, but now 26-years-old. Time was marching forward at warped speed. My organ donor family that had wafted around in the back of my mind was drastically thrust to the forefront. They had never left. They were never forgotten and always there, but they were fading—and that scared me. I could not and would not forget them, because it meant betraying them and the life I was leading and living. I decided to start all over again.

This time, I took a different route.

I purposefully did not go to Katherine at my Transplant Center because I reluctantly reasoned that she was not even an employee there when I received my second transplant. Instead, I went through the National Kidney Foundation who I had begun to volunteer for and grown a kinship to due to my TransAction Council membership. The National Kidney Foundation referred me to the New York Organ Donor Network (NYODN) and explained: “New York Organ Donor Network is the place for you to go to try to locate your organ donor family or find out about the ins and outs about writing a letter, because the New York Organ Donor Network is your local organ procurement organization.”

I paused, and recalled what Katherine had told me that my letter would go first to my organ donor family’s organ procurement organization. Wait a minute. The lightbulb was turned on. I reasoned that maybe my letter going to the New York Organ Donor Network (the organ procurement organization) could just as quickly and easily go to the organ donor family’s organ donor procurement organization rather than Katherine as the transplant coordinator.

When I contacted New York Organ Donor Network, I was introduced to the Family Services department and a specific family coordinator by the name of **Yolanda. The Family Services department had responsibilities of follow-up care of organ donor families after that decision of organ donation of their loved one was made as well as bringing together organ donor families with their transplant recipients and vice versa. Yolanda was a soft-spoken and slow-speaking Hispanic woman who immediately relaxed and settled my concerns and nerves I had about trying to find my organ donor family this second time around.

With a soft and gentle voice that was like a sweet lullaby from parent to a newborn baby, she said to me: “Mary, I can’t make you any promises that I will be able to find your organ donor family because it was thirteen years ago. But, I will make you a promise that I will do everything I can to find them and make sure that the letter that you give to me is touched by their hands and read by their eyes.”

A couple weeks later, I received Yolanda’s mail of yet another brochure that contained suggestions of what to write to my organ donor family, what not to write, and how to write the letter. Memories of three years ago when I first reached out to Katherine, received a pamphlet of “How to Write to your Organ Donor Family” from her, and my struggle with my first letter came back to me full throttle. I was starting to believe that second time was a charm for me with two kidney transplants and now my second go at writing this letter. History was about to repeat itself again as I looked through the brochure that Yolanda mailed to me countless times until it was all creased and folded over. A brochure could only give so many tips and so much advice. I had to do this my way yet again while following the basic rules of not including the state I lived in, my home address, and my last name and keeping the letter as general as feasible.

Instead of wrestling with the letter as I did the first time, I took a different and even reversed approach with my refusal about typing a letter. No, this letter was going to be as personal, genuine, and me as possible with my hand writing. This approach included speckled colored construction paper, smiling stickers, multicolored markers, and glitter pens. I decorated each and every single sheet. I typed what I was going to write as my rough draft and, strangely, avoided a war with words as I did the first time around. I carefully hand wrote every single typed word on to each colored paper. I wrote in the letter how difficult it was for me to write this so to make this letter less awkward, I was going to tell my organ donor family about me. With my forehead creased in concentration and forcing to steady my hands, I wrote carefully that their selfless gift was a privilege that allowed me to spend invaluable time with my loving family and friends. I told them about my new job at a cancer hospital. I told them about my hobbies, interests, likes, and dislikes. I told them all that happened in my life and all I did from the way I treated people to the way I lived my life to the fullest was because of their decision and their little girl. This letter was not a battle. It was not a fight. It flowed freely to tell them that I had this second chance at life and “Thank You” was never enough. I ended the letter with confessing that I thought about them and their daughter every single day, and hoped I could do something (anything) to let them know just how much they meant to me. When I slipped the colorful and personalized letter into the envelope, I was peaceful and calm yet again with the knowledge that this letter was from my heart and soul. The wait began again as soon as I mailed this letter to Yolanda.

While I waited, I continued on with my life. Unlike the trepidation and anxiety I had when I first completed and sent my letter to Katherine, I was relieved and felt a strong tug in me that Yolanda would find my organ donor family. I imagined my letter received, read, and resulting in even more letter exchanges with my organ donor family and then us finally meeting and bonding over their precious daughter. I excitedly shared with my loved ones that I was waiting to hear from my organ donor family that I felt so close to, though we had not met. I was shocked and stung when my family members and friends were not pleased or rather nonchalant with this search. My Stepmom and sister, as usual, fell into the nonchalant category when they said: “Okay. That is interesting that you are trying to find them.”

My Dad’s reaction took me by complete surprise. His lips set in a firm line and his eyes hardened with a mixture of worry, concern, and fear. He said to me, “Why would you do that? Why can’t you just let go of the past?”

Stunned and hurt, I replied: “After all these years, aren’t you curious about who gave me this second chance at life? I would not even be here if it was not for my organ donor family’s choice to donate their daughter’s kidneys.”

My Dad inhaled sharply and finally said, “I just don’t want you to get hurt, and I think you are going to get hurt either way. If they are not found, you are going to get hurt. If they are found, what is that going to prove? What if they don’t want any contact, and you are just bringing up bad memories from the past? Sometimes, you have to let go and keep things in the past. You are not a parent yet, Mary. You don’t understand what it could mean to a parent to lose their child and then hear from a recipient that has moved forward from their child’s death.”

I swallowed hard, and bit my lip. I began to worry that I had opened up a can of worms rather than a new chapter of positive possibilities with my letter. Could my Dad be right? Oh, no, what had I done?

I turned to **Claudia about me reaching out to the New York Organ Donor Network to find my organ donor family. Out of all the people closest to me in my life, Claudia would understand because she had received two corneal eye transplants. Certainly, she must have wondered every now and then about her organ donor family, and thought that what I had done with contacting my organ donor family late (but not never) was commendable and about time.

Claudia paused in response. I could tell she was struggling with what to say without hurting my feelings. “Just be careful and don’t get your hopes too high about them being found and what their response may be.”

I gaped at her. It was not that I was wounded by her words, but I thought she would have been a bit more enthusiastic. Claudia was always the voice of reason that I trusted and listened to.

I asked her, “Aren’t you curious to find both your corneal tissue donor families?”

“I am, but what if it hurts them too much? They have already been through so much with losing someone they love. Sending them a letter may bring back all those painful memories, and how would that help anyone or anything? Sometimes, it is best to leave well enough alone.”

I suddenly felt selfish and guilty for contacting my organ donor family. What if Claudia and my Dad were right? What if I was just a ghost that they had worked so hard to let go of, and I was not allowing them to let go? Why was I even contacting them in the first place? Was I contacting them for myself and to try to undo my mistake of not thanking them after all these years or was I doing it for my organ donor family? Why was everyone suddenly telling me to let go? I spent these past thirteen years letting go, as if nothing had ever happened and as if no one had died so I could live. Wasn’t it time to give thanks and face up to the past to then move on towards my future? I was clueless, answerless, and dismayed at the wary responses of my closest friends and family. I purposefully avoided the topic of trying to find my organ donor family with my closest friends and families anymore, and focused instead on my TransAction Council Members who were actually my newest cheerleaders of enthusiasm, encouragement, and unwavering hope that I would locate my organ donor family.

I journeyed on with my wait and search. This time, I kept in touch with Yolanda at least once a month or so to find out the progress and if my organ donor family was found. She told me the very same thing as Katherine said to me: “Many years have went by, Mary. It is difficult to track them down, but I promise you that I am trying very, very hard, and am not giving up. We both cannot give up.”

Then, about six months later, I received ‘the call.’

It was a hot, sultry, and steamy summer day that was meant for ice cream sundaes and sweetened lemon iced tea that tickled the tongue. It happened to be Staff Appreciation Day; Each of my colleagues and I were treated to a boxed lunch of our choice and staff members from a famous ice cream company out in Long Island (or was it New Jersey?) made ice cream sundaes of our choice. I had just finished slurping up my creamy and filling ice cream sundae and was heading back to work from my lunch break when my phone buzzed.

I saw I had missed a call from Yolanda. My heart beat rapidly in my chest. Yolanda never called me. I had always called her to follow-up. This has to be the call I was waiting for about finding my organ donor family. A million thoughts zipped through my mind. How did they feel about my letter? What were they like? Were we going to meet? A negative thought never crossed my mind. Rejection was never a consideration.

I forced myself to finish the rest of the work day. As soon as the work day finished, though, I called Yolanda back with bubbling excitement that my organ donor family was finally found and maybe they would want more letters from me, or maybe they even wanted to meet me.

Yolanda asked: “Mary, are you sitting down?”

I nodded with anxious energy like a puppy dog and whispered: “Yes.”

“Mary, I have good news and bad news. Which do you want first?”

Without a doubt, I wanted the bad news first to get it over with and have some good news to look forward to. I giggled nervously and said: “Bad news.”

But, Yolanda’s bad news was not just bad news. It was the worse and most devastating news I had ever received. She slammed me: “The bad news- your organ donor family did not wish to receive your letter. The good news- we found your organ donor's mother, and she wanted me to wish you the best there is in life."

 

Wait!!! –my mind screeched. My thoughts raced at lightning speed. I shook my head to shake the thoughts out of my head. This was not supposed to happen. It did not occur to me that my organ donor family would not want to receive my letter from their organ procurement organization. I was supposed to reach all the steps in that explanation that Katherine originally told me about three years ago. I was supposed to someday meet with my organ donor family and live happily ever after with them. They were supposed to envelope me in their arms with a big hug, and me thanking them until my mouth and throat were sore when I met their tear-filled eyes.

This was a rejection unlike any that I ever experienced. The kidney rejection that I experienced just a couple months after my second kidney transplant and that I was convinced was my worst moment paled in comparison to this.

I still had not muttered one single word to Yolanda. I did not know what to say to her.

Yolanda hurried to the good news just before I could let this crushing news sink in. The good news was that my organ donor family was finally found. It had taken her months, multiple databases, and even more phone calls to locate them. She said that the family had relocated for sometime outside of New York state, but they were now were apparently back. My original feeling and thought was right that the family was somewhere here in New York. It was unbelievable to me that they were floating around somewhere in the state I lived in as well. Had we crossed paths? Had we even met face-to-face? Maybe I had spoken to them or met them and never even knew about it.

I was numb from the news, and could not think straight. On one hand, I was thrilled to pieces that my organ donor family was actually found. After all these years of waiting and wondering, I had almost given up hope that they would ever be found. They were not a dream. They were real. But, then, why did it hurt so much to know that they did not even want to receive my letter? I should have been happy. I should have been dancing on the tables and in the streets at their existence. However, as the news slowly sunk in, I concluded two things. Number one was that the fairytale image I had of my organ donor bringing her family and me together and hugging like a sitcom family was not going to come true. Number two was even more devastating and hurtful than my organ donor family not accepting my letter was the truth that hearing from me and my attempt to contact them had hurt them and brought back bad and painful memories. I was that ghost that haunted them. when all I wanted to do was thank them.

All the dreams, hopes, and images I had about my organ donor family whirred in my head like a spin cycle on repeat. Maybe my organ donor family was not the happy family I imagined them to be. Maybe my organ donor came from an unpleasant family situation just like I had. Perhaps my organ donor and I were more alike than I had ever thought and that is how she and I ended up being the perfect match in body, blood and tissue types, and soul. But, no, I did not see my organ donor family as bad. If anything, I was the bad seed for bringing the past and pain back at them. I could only guess that they spent all these years trying to forget the unforgettable that their daughter had died and was never coming back, yet I and others were still alive because of her demise. I suddenly felt utterly, completely, totally, and absolutely horrible. The most horrible and stupid person ever. I never should have tried to contact them.

I think I muttered a “thank you” and “you are amazing for finding them” to Yolanda. Before I was on the verge of cutting the conversation and hanging up on her, Yolanda said to me simply and softly: “I know this is not the news you wanted to receive. I know you wanted to find them AND keep in touch with them or even meet them. I am just as saddened and disappointed as you because your letter was the most heartfelt and personal letter that I have ever received before. There are so many organ donor families who would be blessed and so honored if you were their recipient. But, please, don’t take this as you stopping to write letters. So many of the organ donor families are unpredictable. They will say forever that they do not want to receive any letters or correspondence from their organ procurement organization and their transplant recipients, and suddenly, just out of the blue moon, they will want to receive every single letter and correspondence. Suddenly, they will want to know every single thing about their transplant recipients as their link to their loved one who died.”

I think I mumbled, “Okay.”

Yolanda said, “So, don’t give up, Mary. You can contact me any and all the time with more letters for your organ donor family and I will contact your organ donor family’s organ procurement organization each time that you do. And, just know that even if you never write any more letters, I still keep in touch with the organ procurement organization of your organ donor family.”

Her words echoed in my mind, but they held little meaning and comfort to me. Tears filled my eyes. I brushed them aside angrily. I shut my cell phone with a hard click, dejected and rejected. Claudia and my Father were right. I knew now that their precocious reactions were them trying to protect me from this biting and caustic pain of dismissal. It was not the fact that they were right that made me ache and hurt the most. It was me behaving like a fool and grasping on to false hopes so high only to fall to pieces. I did not wish to hear their: “I told you so” and see their knowing nods that this was going to happen, so I turned to **Harry.

I texted him: “Heard back from my organ donor family. They don’t even want to receive my letter.”

Minutes later, my phone rang. It was Harry.

“What happened?” He asked.

Refusing to and not cry, I choked out the story to him.

“Listen, Mary, it was probably just a huge shocker to hear that a transplant recipient had tried to contact them after over ten years. It just is not the right time. They probably need thirteen years and counting time. It is too painful for them. Give them more time. Just don’t lose hope or give up because they probably will want to have contact with you someday. Just not now.”

I feebly said, “Yes, I know you are right.”

Just as quickly as I hung up with Harry, he sent me a text: “Mary, anyone who meets or knows you is so lucky. If they don’t want to have contact with you even after you contact them then it is their loss.”

I could not help but think- Yes, their loss. But, hadn’t they lost enough with the death of their daughter?

This was a fragile situation with no right answers and solutions.

Factually, I understood their grief and pain. Not only had they encountered someone they loved succumb to an unpredictable and horrific death of a mirror crashing, but it was their own daughter’s death at the fresh and just budding age of 4-years-old. Life was not supposed to work that way that a child died before their parent, but that is what had happened to them. I never expected them to forget and the grief to come to a finish line. To me, grieving was not necessarily a process, but grief of a loved one stayed with us and we could only hope that the grief would subside just a little bit as time went by.

Emotionally, I did not understand how they could turn away from my letter. All these years, I reasoned that they were the most selfless people for choosing to donate their daughter’s kidneys and probably other organs in their time of tragedy, so they would want to hear from the recipients to know that their daughter’s legacy lived on in some way. Wouldn’t they? I never intended to bring back all the hurt, pain, and memories. All I ever wished was for them to KNOW how much I loved them, how close and connected I felt to them without laying eyes on them, and how grateful I was for life. All I wished for them was to be well and healthy, to be happy, to experience and love life as I have had the chance to all because of their choice.

It has been more than four years since I first mustered up the courage to write my second letter to them. Since the second letter, my life took on a being of its own with all my organ donation and transplant advocacy work. I wrote at least three more handwritten letters to them. One letter was written immediately after the news that they did not wish to receive my letter. I poured apologies and heartache in this letter to my organ donor family, declaring that I felt awful for bringing back the past but I simply wished for them to know how grateful I was for them and for everything. This letter was my therapy over the guilty feelings that had originally invaded me. I wrote another letter around my birthday, sharing that I had a great birthday and believed that it was them, my organ donor, and I celebrating my birthday all together, though I had never seen them. I wrote a holiday card to them, wishing them the best of holidays. My last letter was soon after I participated in the Donate Life Float as a float rider at the Rose Bowl Parade.

Many times, I inflicted unnecessary aches in my hand and heart with writing each and every word and letter as meticulously and personally as possible. Many times, I believed all my letters and contact were a waste of my time because perhaps I will live the rest of my life with their daughter’s kidneys functioning in me and her faceless family living in my mind rather than in my physical presence. I use to be afraid that if I stopped writing then I would start forgetting that the only reason I was still here on this earth was because of my organ donor and her family. I could not bear to forget them. I was also scared that if I ended these letters to them that I would never find myself. All along, this search was about finding me through them. Now, after all this time, I know that searching for them and possibly finding and meeting them was not equivalent to finding me. And, it was suddenly after fifteen years of having my second kidney transplant that I understood—my chronic kidney failure and two life-saving kidney transplants, all my health episodes, family and friends, life experiences, and my organ donor and her family did not find, define, identify, and/or create me. Instead, I found, identified, and defined me by creating myself from all the life experiences, the decisions I made alone, and for the people that were in my life or had touched upon my life in some way. I created my own future, destiny, and health rather than the reverse.

I continue to write to my organ donor family on a yearly basis as a comfort to me, a bridge to them, and, most of all, a promise to always remember my organ donor, her family, this gift of life, and everything involved with my second kidney transplant. I most recently tried to contact my first organ donor family from 1987, but Yolanda said that finding them would be really impossible because my first kidney transplant was at a time when organ donation and transplantation was just starting and experimental. My first kidney transplant family gave me back my childhood. My second kidney transplant gave me back my teenage years and now my adult years. I will not lie that I still hope that one day I will know both my organ donor families, but I do not hope this to find myself anymore. I do this for both my organ donor families who are and will always be my heroes that saved my life.

No matter what happens to both my organ donor families or to me or if we do or do not meet someday, I believe that we will forever be connected through their loved ones and especially through my second kidney transplant donor and her fist-sized kidneys that gave me the privilege to create and live my life from here on in.

**denotes fake name to protect privacy of individual

Chapter Thirty-Two: The Rose Bowl Parade



“WE ARE GOING TO CALIFORNIA TO THE ROSE BOWL PARADE!!!”


“Dad? Is that you?” I mumbled, half- awake, yet mostly still asleep.


I rubbed my nearly sealed and sleepy eyes, but finally forced myself to open one eye to check my alarm clock. 7AM. What day was it? Was it a week day? Did I not set my alarm clock, and had I missed work?


My Dad was still whooping on the crackled phone line: “WE ARE GOING TO THE ROSE BOWL PARADE!!”

I shook my head, trying to clear the fatigue out of me and reason what was going on. It was a Saturday morning in July. My Father was in Washington D.C. on a business trip. Why was he calling me so early on a Saturday morning when I was going to see him again tomorrow when he returned back? I was starting to wake up.


“Dad? What are you talking about?”


He paused in mid-cheer and his repetitive “Rose Bowl Parade” booming and cheering chant stopped to ask: “Your Stepmom told me about you going to the Rose Bowl Parade.”

I racked my brain to my conversation with my Stepmom just yesterday evening when we had a home-cooked and quiet dinner in the absence of my Father. My Stepmom was a huge fan of sports, and especially of basketball and football. Her usual quiet voice went up a couple octaves and her eyes widened behind her tinted glasses: “The Rose Bowl Parade? As in the annual Pasadena, California Rose Bowl Parade? As in the parade before the Rose Bowl college football game?”

I cocked my head and blinked my eyes a couple times in confusion, not knowing anything about sports. “Is that what it is?”


My Stepmom just shook her head at my supposed stupidity and said: “Wow. I was not born in this country, and even I know about these all-American events! I can’t believe that you don’t know the Rose Bowl Parade and about the Rose Bowl college football game! It is an annual American tradition. Do you even know what an honor it is to be a float rider for the Rose Bowl Parade??”


I corrected her: “I’m not definitely going to be a float rider. I’m just being considered for to be a float rider for the Donate Life Float, which is one out of hundreds of other floats at the Rose Bowl Parade. I spoke with **Roger who is the Chief Financial Officer of UKRO based in Los Angeles, California yesterday and he said he is going to speak with the board members and the founder, **Keith, for me to be interviewed via conference call in the next couple of weeks or so. If, and that is a really big IF, the conference call goes well and they want me then I’ll go to California for the parade with one guest and all expenses paid.”


“All expenses paid?” My Stepmom repeated incredulously.

I nodded.


She shook her head in disbelief and finally said, “Well, just being considered is such an honor. We have to tell your Dad.”


“He’s in D.C. now. I’ll tell him when he gets back,” I paused and then with a delayed response to my ignorance about the Rose Bowl Parade, I said defensively: “And, I most certainly do know about the Rose Bowl Parade and the college football!”


My Stepmom gave me a dubious expression. She knew me all too well. In actuality, I only knew that being a float rider for the Donate Life Float at the Rose Bowl Parade was one of the biggest and most unimaginable lifetime experiences ever. I did not know the part of the Rose Bowl football game, but I certainly was not going to admit that to my Stepmom.


My Dad interrupted my thoughts. “What? Was your Stepmom wrong about the Rose Bowl Parade?”


“I’m only being considered. It does not mean it is going to happen.”


“Trust me,” my Dad said confidently on the other line like a cannon ball, “It is going to happen. I know these things.”


“I don’t want to get my hopes up. I’m trying to go with the flow, and not think too much about it…especially thinking about the conference call,” I said.


“You will do great. Look how far you’ve come already!”


I finally said, “Well, we’ll see what will happen.”


In a matter of a couple of weeks, I was sitting on the edge of a seat in the kitchen with my sweaty hand glued to the phone that was pressed against my ear and with the long phone cord coiled around my nerve-wracked body. I was as prepared as could be for this conference call. I had researched UKRO, which stood for University Kidney Research Organization. UKRO was founded by a famous entertainment lawyer, Keith, who had received a kidney transplant from a deceased donor. UKRO was a Los Angeles-based and non-profit organization that specialized in eradicating and treating kidney disease through ongoing research. I had read up on the January 2012 Rose Bowl Parade and Donate Life Float. The Rose Bowl Parade was officially called “The Tournament of Roses Parade,” and January 2012 would mark the 123rd anniversary. The Donate Life Float was established in 2004 after a double-lung recipient wrote a letter to his local organ procurement and non-profit organization, OneLegacy, about an idea for a donate life float as a part of the nationally broadcasted Rose Bowl Parade in order to show the public that organ, eye, and tissue donation and transplantation worked and was a true testament of life.


As much as knowledge is power, knowing all the facts about UKRO and the absolute magnitude of the Rose Bowl Parade and Donate Life Float by the time I was on the phone for a conference call with UKRO made me a bundle of jittery nerves. I was just beginning to understand the enormity, responsibility, and miracle of possibly being a Donate Life Float Rider. To represent an organization as UKRO and share and show the world the ultimate power of organ, eye, and tissue donation/transplantation from the unbreakable connections of organ donor families and transplant recipients through a float of lively and fresh flowers at the Rose Bowl Parade was beyond my full comprehension and wildest dreams.


I had a tall glass of ice water next to me and kept drinking it to try to clear my mouth and throat that felt laced with cotton. The major staff members of UKRO that were on the phone were Roger, administrative assistant **Vivian, the marketing representative **Molly, and the spokesperson **Victoria.


“How’s the weather over there in New York? Us Californians are such babies when it comes to even rain! I bet you really want to be here in California for the Rose Bowl Parade in December just to get away from that cold and bitter weather in New York! ” Vivian said cheerfully.


I laughed and the layer of anxieties began to shed off of me. The conversation easily transitioned to me sharing my story:

“I always introduce myself as ABC, which is known as American-Born Chinese. I actually just recently learned the truth about my diagnosis of a defected urinary tract and kidneys that began at 7-months-old, which led to chronic kidney failure by the time I was 3-years-old. I was put on peritoneal dialysis immediately at 3-years-old. No one in my family was a match. Also, keep in mind that my parents were not born in this country, so I can’t imagine how it was for them to grapple and try to understand the healthcare system and all that was happening to me when English was not their first language and the U.S. was not their Mother Country. I had my first kidney transplant when I was 5-years-old, but it failed by the time I was 12-years-old. In February 1995, I was put on the national waiting list and was so unbelievably fortunate because I received my second kidney transplant on May 5, 1995 from a 4-year-old girl who died when a mirror fell on her. I received both of her kidneys, and I remember thinking that someone else could have had that other kidney. There are so many people waiting for an organ transplant, and especially a kidney, because of the huge organ shortage.”

I paused for a breath, and pictured the entire UKRO staff huddled around the conference call device listening to my story as the sunshine in California streamed through the windows. I loosened my grip on the phone. The heavy and hurried pounding of my heart slowed down to a normal beat. The July sunshine in the kitchen sliced in shards of heat through the window. Without hesitating, I spoke my thoughts aloud softly: “I think everything happens for a reason. I think about both my organ donor families every single day and how their decision of life and living has given me the privilege to finish high school, finish off university, work, be with and enjoy the simple moments with my family/friends, meet the most inspirational people in the transplant community, experience the highs and lows of possibly falling in love with a soulmate, do all the things I want to do and am so passionate about in the organ donation and transplant community, and just live my life to the absolute fullest.” My eyes started to get wet all over again. No matter how many times I spoke so ardently or thought about my organ donor families, my life, and how there was such a dire need to register as an organ donor, I would always end up teary again and again.


I swallowed hard as the memory of reading my medical records came back to me again and finally said, “I just think me being considered to even be a part of the Donate Life Float is amazing, and it would be the truest and most ground-breaking of honors to be a float rider for your organization that recognizes research as the foundation to finally come up with a cure. I never wish for any one or any family to go through what my family and I went through, but we did and now the only thing to do is pay it forward, make a difference, and try to stop the cycle of over 90,000 individuals waiting for a kidney transplant and over 110,000 individuals waiting for a life-saving organ through research, education, and information.”


Oh, my God. Did I just say all that as strongly and passionately as I truly felt? I was always in awe and disbelief at a whole new persona or person took over me when I was thrown into, spoke about, or wrote about my organ donation and transplant passions. Everyone over the phone was eerily quiet. I grimaced. Maybe I had come on too strong?


Roger, in his lilting British accent, said in an opaque response at the end of our conversation: “Well, Mary, this was a really wonderful conference call. We appreciate the time that you took, and will definitely get back to you.”


I slowly hung up the phone after a couple more carefree verbal exchanges with the UKRO staff members. I was not sure what to make of the conference call. A part of me was convinced that it went so well and I would be the official float rider to represent UKRO on the Donate Life Float, but another part of me nagged at me that I had come off as too aggressive or assertive because of how gung-ho I was about organ donation and transplantation. Only time would tell. I now put my faith in some higher and unknown force or being called “Fate” or “Destiny.” Both “Fate” and “Destiny” had done me well in these past couple of years that revolved around my advocacy projects and work, and I trusted them again to steer me in the direction that I was meant to go towards and forward with.


A week went by. No word. I was disappointed and crushed, but tried to console myself with superficial words of comfort that it just was not meant to be.


Another week was about to finish up when my cell phone tinkled to reveal Roger on the other line. I was still in the parking lot and at my car with two heavy bags of groceries weighing my arms down. My bags of groceries fell in a heap at my feet and I nearly dropped my phone in the process as I hurried to answer it.


“Hello?” I asked breathlessly.


“Mary!” He said jovially.


“Hi, Roger!” I exclaimed. “What’s going on?”


“Well,” Roger said quietly and then his voice escalated to an astounding burst of joy, “Just wanted to let you know that we are finalizing some ins and outs with our founder here, and we want to make sure that you can get the time off from December and January to make it to California to be our float rider for the Donate Life Float and Rose Bowl Parde!”


I did not know what to say, and just blubbered: “Oh, my God! Oh, my God!! I can’t believe this!! Thank you!! Thank you soooo much!! What an honor! I just…I mean….THANK YOU SOOOOO MUCH!!!”


Roger laughed loudly. The next couple sentences exchanged were a complete blur to me. As soon as I got off the phone, I called my Dad and it was now me screaming at the top of my lungs in that crowded parking lot and chanting over and over again: “WE ARE GOING TO THE ROSE BOWL PARADE!!!”


There was never a single doubt in my mind that my Father was going to be my guest to accompany me at the ground-breaking and life-altering Rose Bowl Parade extravaganza. My Father who was the Professor of Molecular Biochemistry to medical students and a champion in science and research would completely and wholeheartedly understand UKRO’s mission, goals, and efforts all too well. But, more than that and most important of all, my Father was the ultimate strength and survivor of raising my older sister and health-challenged me on his own since I was 8-years-old after my Mother left. My Father was the one constant and rock solid supporter in my life who was there for every doctor visit, procedure, and blood work appointment that deemed if my second kidney transplant was still going strong, and he handled all the emotional, mental, and physical side effects and after effects of each medical expedition with grace, a smile, humor, and a calm and soothing philosophical warmth that always motivated me to be better and to fight for myself and others. All my strength, philosophical mindset about life and people, and my positive attitude and smile came from my Father. And, of course, my Father had no disagreements or discord with choosing him accompany me on all the Donate Life Float and UKRO activities when his cheers mimicked mine: “Yeah!!! We are going to California for the Rose Bowl Parade!!!”


From the moment that I was officially chosen in July as the Donate Life Float Rider on behalf of UKRO and for the Rose Bowl Parade, my life was forever changed. Unlike over two years ago when I awkwardly hid in my fearful shell of sharing my lifetime health issues at my workplace, I openly told my co-workers and managers that I was heading to California from December 28th-January 2nd as a Donate Life Float Float Rider for the Rose Bowl Parade. My administrative manager, **Eva, let out a yelp of delight, wrapped me in a warm hug, and then immediately brought me to her manager who radiated with magnanimous enthusiasm and happiness. The responses from just about all my co-workers, friends, and family members were identical:


“Really? The Rose Bowl Parade? You are going to be on TV?!”


My sheepish response was always the same: “Yeah, I can’t believe it!!”


The support and excitement that my co-workers
and managers at my workplace and all my friends and family members had for me overwhelmed, startled, and touched me to such sentimentality that I would often find myself having to catch my breath and stop for a moment to let the reality of all of this sink in for me.


The months leading up until when I would board a plane to California on December 28th were a blur. Just about every week or so, there was an email from OneLegacy with information about the 2012 Donate Life Float and its “One More Day…” theme that illustrated the true preciousness of time, life, and death that organ, eye, and tissue transplant recipients and donor families encountered day in and day out with. When the 28 float riders were announced and finally displayed with candid and smiling photos, I read each and every biography of who was going to be there with me in the “Class of Donate Life 2012” float ensemble. Eyeing each, I said the same thing over and over: “I can’t believe this is happening. Is this really going to happen??” I pinched myself to make sure that this was all reality and not just one of my wild and crazy dreams.


As soon as September 2011 rolled around, the media frenzy and the flower preparation for the Donate Life Float in California that awaited 27 other float riders and me had escalated to a huge kick off. I received emails containing links to articles of random volunteers that may or may not have even been touched by organ donation and transplantation who prepped and fluffed flowers. Their eyes sparkled and their pearly whites shone in the photos that accompanied the articles. On my end of the EastCoast, I had only completed paperwork, booked my flight, read the emails that built up the excitement in me and everyone else in the transplant community, and did whatever UKRO minimally needed from me because I was in New York.


When Thanksgiving had ended, the real work began on my end. UKRO invited me as a guest blogger on their website to the countdown to me boarding the plane for the Rose Bowl Parade along with video clips that my friends helped out with by filming me in all my bouncy and off-the-wall thrills that I was really going to be a float rider. There was also a UKRO media representative that was trying to arrange interviews in New York and I was reaching out to my own media contacts that I had gained from my initial organ donation and transplant advocacy work. In the weeks leading up to me boarding a plane, everything was a dizzying daze with my sister’s return from Hong Kong for the Christmas holiday, my involvement with other organ donation and transplant organizations, at least three newspaper interviews with my own media contacts who graciously and enthusiastically agreed to do a story on the Rose Bowl Parade/Donate Life Float and my involvement, and a TV interview with my local news crew on a torrentially stormy rainy on the night just before I was supposed to leave for California at around 5AM. The TV Interview was a strange and surreal phenomenon because that was the first time I had beams of lights around me and a camera straight in my face. I tried to ignore the camera lens and lights and just focus on the story at hand and the interview with the reporter, but I had to keep digging my fingernails in the palms of my hand to stop from shaking and to force myself to stay calm and collected. When the interview was over with and the reporter and camera man had finished and left, I was immensely relieved, but then wired all over again because the next day was the huge reality that I was heading to California the next day.


Even after every fact known about the Rose Bowl Parade, UKRO, and the Donate Life Float and even after everyone rallying on behalf of me with such infectious and energetic spirit on the East Coast, nothing and no one could have even tried to prepare me for all that was about when I was actually in Pasadena, California for the ground-breaking and once in a lifetime opportunity as a float rider for the Rose Bowl Parade.


From December 28th-January 2nd, my days were an absolute dreamy fog that revolved around a mass of heartwarming, inspirational, and beautiful events. As soon as my Dad and I arrived and picked up our bags off the luggage carousal, we went outside and were hit with the heat of the California sun rather than the cold icicles and frost of New York. It was Roger that came to pick us up and greeted us with a smile that could light up the world. I fell in love with him and his calm and laidback disposition that only echoed California and all its glowing sunshine. Although I was physically exhausted and could have slept like a baby as soon as I collapsed in Roger’s car, I was incredibly and emotionally hyper. I could not stop gazing at the swaying palm trees, closing my eyes to feel the full sun, and listening to Roger and my Father talk. When I arrived at the hotel, I was given my official float rider material that included a 2012 “One More Day” Rose Bowl Parade Commemorative Yearbook, shiny and delicate Rose Bowl Parade pins in an enclosed plastic case, and all the final paperwork details of what my next days leading up to the Rose Bowl Parade were to entail. Needless to say, the next days were absolutely filled to the brim, and I was still pinching myself and in utter disbelief that I was actually in California as a float rider for the Rose Bowl Parade and Donate Life Float.


The next day was a fully packed day of finally seeing the Donate Life Float in the making, float decorating, media interviews, and truly meeting my entire UKRO family that I had only communicated with through email and video chats up until that point. Roger drove us to the biggest warehouse that I had ever seen. My mouth dropped to the ground my eyes bugged out in complete shock at seeing all the massive floats-in-the-making side by side. So many floats, but even more people working on the floats in this absolutely huge workshop warehouse of madness. There were people hanging off scaffolding, climbing up ladders, and gluing flowers on the floats, but then there were people clustered together at long tables like little elves as they fluffed flowers, counted seeds, dabbed glue in a careful circular motion around the base of the flowers, and laid these flowers as gingerly as possible on cardboard trays.


In the midst of all the complete worker bee chaos, I could not tear my eyes away from the Donate Life Float that was in the making before my very eyes. I knew the facts about the float that I was going to be sitting on with all the other float riders on January 2, 2012: the Donate Life Float itself would stand at 33 feet from an anchoring clock tower that had an animated sun and moon dial. There would be 6 floral timepieces that showcased the amazing 72 memorial floragraphs “floral portraits” of deceased organ donors. The theme song that would play throughout the float ride was “100 Years” by the band “Five for Fighting.” Lastly, there was to be a very visible sign on the “Donate Life Float” that read “20 million in 2012,” which indicated Donate Life America’s greatest feat of adding 20 million registered organ donors in 2012 to the current 100 million registered organ donors in U.S.A.



The Donate Life Float "One More Day" theme

The Donate Life Float in the making at "the warehouse of floats"!

But, the facts could not ever, ever capture being right then and there as I stood in front of the Donate Life Float. It was majestic. It was beautiful. Not just because it simply was, but mostly because this float represented the pinnacle of my organ donation and transplant passionate efforts. It was my passions, my heart, my soul, and my purpose all in one in that float. I tried so hard to take one photo after another, but even a picture could not encapsulate the float and especially the significance of what it meant to me and everyone else in the transplant community. My Dad walked back and forth, staring at it in complete awe. He then walked back and forth through the warehouse, turned his head this way and that way to glance at all the volunteers who were busily working on the flowers for each and every float, and finally just shook his head in astonishment. He clapped his hand on my shoulder and said: “Wow. I’ve never seen anything like this before.” I looked up at my Dad. His expression was priceless and indescribable, full of emotion, pride, and stunned amazement. I craved to say to him: “So, this is all the goodness that has come out of all the pain and the bad..” But, for once, I kept my mouth shut just to live in this moment with my Father. I followed the same pattern and movements that my Father had with just walking back and forth and shaking my head in shock. I breathed: “Wow. This is really happening.”


The UKRO team of Victoria, Molly, Vivian, Roger, my Dad and I got to work by fluffing up ruby red carnations with other volunteers who either were or were not touched by organ donation and transplantation. I was particularly intrigued with the volunteers who knew nothing about organ donation and transplantation, yet had specifically requested to volunteer their time for the Donate Life Float.


My Dad and I "fluffing flowers"


Our precious ruby red carnations that went on the Donate Life Float
  


All of us working had on fluffing and prepping flowers to be put on the Donate Life Float

One Chinese woman who eerily looked like my Mom with dark curls that framed her smooth, oval face and her brother who was a man of few words who let out a happy grunt here and there when he finished fluffing a flower said to me: “We have always wanted to volunteer our time for the Donate Life float. We just think what it represents is just so beautiful and meaningful. The Donate Life Float has to be the most significant float that touches you like no other float in the Rose Bowl Parade.”

I was speechless.

Before lunch time came and just as I was getting into the fluffing flower groove, I was suddenly pulled to the Donate Life Dedication Garden event. This event involved anyone a part of the transplant community who wanted to dedicate a rose accompanied by a personal message that was placed in a vial of water to anyone or anything that was a vital part of the transplant journey. Many people dedicated a rose to their organ donor (living, known deceased, or anonymous deceased), a hospital, organ donor family, etc. Each rose in the vial was plucked into an area of the Donate Life Float. I had dedicated a rose to both my anonymous organ donor families and then I was pulled alongside Victoria to dedicate another rose to the UKRO founder, Keith. Molly and a UKRO volunteer were busy zooming in cameras to Victoria and me dedicating roses and placing our vials of roses into the Donate Life Float along with trying to capture float decorating and an onslaught of interviews that we were suddenly bombarded with. The OneLegacy’s Asian community liaison introduced me to interviews by the Chinese newspapers and organizations with my Dad right there to speak Chinese, as I could not speak Chinese fluently and could only understand the language. My Father and I stated over and over again at the interviews within the Asian community that organ donation and transplantation was still a work in progress, and that I was working towards telling my story along with so many other stories in order to register individuals as an organ donor. My eyes were nearly blinded by so many recording cameras and digital cameras going off in my face, my face ached from smiling so much, and my mouth was dry from so many interviews. Nonetheless, I had never been happier or more at home in my entire life.





"The Donate Life Dedication Garden" event. Here are my two roses to two of my
anonymous organ donors and their families.


Placing my dedication roses in the Donate Life Float
That night and the days that followed, I became familiar with my UKRO family, connected with the other float riders at two dinner extravaganzas, and was literally just sailing on a cloud and complete high on life when forging friendships with kindred spirits who understood my plight and who were and are simply the most remarkable individuals that I could ever meet in my lifetime. A select few of the float riders I connected with was a hand transplant recipient, a physician that acted as an altruistic and living organ donor by donating his left kidney to a complete stranger, an organ donor family representative associated with the widespread media coverage of the 2011 Arizona shooting, an aortic valve recipient, and many more. They were strangers I never met, but somehow knew and bonded with just from our life experiences alone.

Float Judging, which was held on January 1, 2012, was probably the most emotional day for me because the Donate Life Float was a final finished product with every seed, flower, and petal in its place. I had just kept staring at the Donate Life Float when I first saw it in the warehouse, but when I finished saw it completely done, I could barely breathe. It was absolutely gorgeous with the floragraphs, clocks, and every single flower that was treated with such gentleness and care. I was assigned to the first seat at the front of the float and next to the tallest gentleman, **Tony, who was a heart-transplant recipient and firefighter from San Francisco. It was all too amusing that I was assigned to sit next to him when he was the tallest and I was the shortest out of all us 28 float riders. Float judging was basically a rehearsal or practice run of the actual Rose Bowl Parade where we found out where each of us would sit and also practiced waving and smiling like mannequins to straight-laced and serious judges who would see our float and determine if we would win an award. The sun was scorching hot and all of us 28 float riders had sweat dripping down our faces as the judges examined our float and all the other floats. “100 Years” by “Five for Fighting” song kept playing over and over again. I grinned and smiled until my face hurt, but when the judges finally walked away with nodding approvals and shining eyes at the Donate Life Float, this deep and gnawing ache began to fill my chest.



Here is the finished product "Donate Life Float" on the day of float judging!

Here is where I found out that I was going to sit!



My float buddy heart-transplant recipient, Tony, who had a deep and base voice that could lull you into a mesmerized state had put his long and sleek arm around me. He asked: “Are you okay, Mary Wu?”

I just nodded. I had spent these days so happy and on top of the world, and now I felt all these moments catching up with me into a ball of exhaustion.


Tony’s arm wrapped around me and into the crook of his arm. He whispered to me: “This really is something, huh, Mary? This really is so unbelievably amazing, isn’t it? And, this is all happening because of our organ donors.” His long fingers clutched protectively to his photo of his smiling organ donor.


That is when I started to cry.


I did not even know why I was crying. I had been on such a happy and hyper high since I landed in California, but the mere mention of “organ donors” made me think of mine. I would not be even sitting here if it was not for them. Memories of when I woke up from my second kidney transplant began to whirr in my head, and the wondering cycle of my 4-year-old organ donor who would actually be 17-years-old at the time of my Rose Bowl Parade experience started up.


Tony’s eyes started to tear up and then our other float rider buddy, **Jose, who was sitting next to Tony said: “Guys, you can’t cry, because now I’m going to cry.” Sure enough, it was a chain reaction, and Jose’s eyes filled with tears. Jose was an organ donor husband. His wife had collapsed from of a sudden brain hemorrhage on the day that she was preparing for their 25th anniversary celebration.


Tony’s arms wrapped around Jose and me, and he just kept saying over and over: “This is too emotional, but to feel all this is worth everything in the world.”


And, that was the moment I knew that this ride of a lifetime that was really going to happen on January 2, 2012 in front of the U.S.A. and was all about both my organ donors and their families.


On the night of January 1, 2012, I was barely able to sleep, agitated, and practically exploding with so much emotion as I tried to remember every person I had met, every flower I had fluffed, every conversation, and just every breath-taking and beautiful moment. January 2, 2012 would kick off with my float ridership on the Donate Life Float and the Rose Bowl Parade, but I was also leaving late after 10PM that night back to New York. So, to every beginning, there was an ending and vice versa. With wide eyes and a clouded mind, I thought of the Donate Life Float and its theme of “One More Day…” To me, it was more than fitting to me that the theme of the 2012 Donate Life Float was “One More Day” because organ donation and transplantation really was all about the preciousness of time, life, and death. I always wanted so desperately to stop the hands of time so I could take in all these treasured moments. But, as we as organ donor families and transplant recipients/candidates especially knew of, time was something we did not have control of and every minute with our loved ones and on this earth either as an organ donor family or a candidate waiting for a life-saving transplant was too precious and often taken for granted. My time in California had went too fast and was reaching the top point of the Rose Bowl Parade about to happen.


On January 2, 2012, I was up at 4:00AM after an extremely restless sleep. I carefully dressed in my Rose Bowl parade day attire, which included a shirt supplied by the New York State Organ Donor Network (my local organ procurement organization- www.donatelifeny.org) that read on the front “An Organ Donor Saved my Life” and the back had a sketch of the New York State Driver’s License with the infamous red heart proudly indicating “organ donor. Also on the front of the shirt were the UKRO kidney bean logo and various U.S. State buttons or pins from my time at the 2010 Transplant Games in Madison, Wisconsin, because the Transplant Games was the first major life-transforming event that had motivated me to become an organ donation and transplant advocate. To complete my parade day attire was a sign that read “THANK YOU- I RECEIVED MY KIDNEY 23 YEARS AGO,” compliments of New York Organ Donor Network yet again when I was invited to and attended an organ donor luncheon event in October 2011. After I finished dressing, I took a deep breath. Yup, I was ready to fulfill my role as Float Rider for UKRO!!


In my Donate Life Float dress attire!

All my Donate Life float buddies, the OneLegacy Crew, and workers at "Vons,"
which is where we stopped at 4-5AM on the day of the parade for breakfast!

Or, so I had thought that I was more than ready to fulfill my Float Rider role, but when I saw all the finished floats and especially the “Donate Life Float” lined up one by one and the crowds and crowds of people walking down to see one float after another with giddy grins and pointed fingers, I did not feel ready at all. So many people stopped by to clamor, ooh, and aah over the Donate Life Float. So many people stopped to talk to us float riders to find out our personal story. One gentleman with sleek and graying hair who looked to be in his late 50’s eyed my sign and then looked at me quizzically and motioned for me to talk to him: “How old are you?”


“29-years-old,” I said.


“So, this sign said you received a kidney transplant 23 years ago? Did you receive your kidney transplant at 5-years-old?”


“I have had two kidney transplants. One when I was 5-years-old and another when I was 12-years-old. My organ procurement organization counted both of them together.”


The woman who stood next to him with long, dark blonde hair said: “This is my brother, and he is waiting for a kidney transplant, too. He’s been on dialysis for years. It is great to have a machine, but life isn’t meant to be lived on a machine.”


I did not say anything, because it looked like both of them wanted to say something more. The gentleman’s hands were gnarled and suddenly took a hold of mine with a tight grip. I inhaled sharply, not sure how to react. His body shuddered with emotion, tears streamed down his face when he said:

“Bless you and these gifts of life that were given to you,” He paused, and his clear blue eyes looked into mine, “You give me hope.”


My eyes filled with tears. I gently squeezed his hands, not saying anything.


His sister turned away, distraught. She collected herself, plastered on a smile that looked all too familiar to my Father’s when I had health episodes, and then took a picture of her brother and me together as we held up my sign proudly.


I finally sat on my designated seat on the Donate Life Float. The California sunshine radiated its warmth. Us float riders and I waited for what seemed like an eternity. All of a sudden, the song “100 Years” by “Five for Fighting” and the wheels of the magnificent and towering “One More Day” Donate Life Float began to move. However, I could barely hear the song when the crowds of people before me on the side streets began to cheer, cry, and scream. I was overwhelmed with a whole blender of emotions. I was filled with humbled honor, joy, vibrant enthusiasm, and tears. All my memories of my Father with me for hospital stays, doctor visits, needles, procedures, and pain flooded me, but then came to a halt when I remembered waking up and recovering from my second kidney transplant that was 17 years ago. My two organ donor families from my first kidney transplant at 5-years-old and my second one at 12-years-old still remain an unknown mystery to me, but on this ride of a lifetime Donate Life Float, they were in my head and heart. I wondered if they were watching, and if they ever thought about who received their loved ones organs. Would they be proud of me and all I had fought for to survive and now giving forward in the organ donation and transplant community and public with ongoing advocacy to increase organ donation awareness, inspiration, and registration? With the sun shining, the bluest skies, and the tallest mountains in the backdrop on this ride, I could not stop smiling, grinning, screaming, and waving like crazy on the outside to all the screaming and waving fans with tears that streamed down their faces, but I also could not stop crying bittersweet tears on the inside for both my organ donor families and for my family, friends, and all the awe-inspiring people that had blessed and come into my life from my health obstacles and challenges. As the wheels of the 2012 Donate Life Float turned and the deafening sound of the crowds and my newfound float friends overcame me, my life and all this extended time that I was too fortunate to have had on this earth from two life-saving kidney transplants from two organ donors who gave in their time of tragedy had never seemed more indescribably and incredibly small and yet large at the same time.


A photo shot of me riding along on the "Donate Life Float"


Crowds and crowds of Californiansholding up their driver's licenses with the infamous p
ink dot that indicates they are proud and registered organ donors!


Donate Life supporters!!



This was my view from where I sat on the Donate Life Float! Beautiful day!



Five miles and about two hours later and as the heat of the sun beat down on us emotional and exhausted float riders, my legs wobbled like Jell-O when I was helped off the 2012 Donate Life Float. I stared at the looming and gorgeous float one last time that had epitomized organ, eye, and tissue donation and transplantation to the world before I shakily stumbled on to the bus that would bring us float riders to a post-reception lunch. I was quietly pensive on bus ride with conversations swarming around me about what everyone thought and how everyone felt. At that moment and the time that has followed post-Rose Bowl Parade and Donate Life Float back in New York, I have looked over and over again at photos and videos to try to find one single word to describe this 2012 Donate Life Float experience as a float rider for the 123rd Rose Bowl Parade, and the only word I can conjure up is “Indescribable,” for this truly was something that has to be experienced, felt, and lived.



How extremely and unbelievably lucky I was to experience this true ride of a lifetime that represented the journey that we all had in this life! How grateful I will forever be to UKRO, my Dad, my entire family, my friends, everyone and anyone, and the health challenges that led me to this absolutely wordless and speechless point in my life. It was a privilege, chance, and life-transforming time in my life that I will remember for as long as I lived, and the days in California that led up to that one day, January 2, 2012, will remind me until the day I die just how powerful time, life, death, and organ donation and transplantation always will be because these connected all of us in ways that were just “indescribable” and ultimately felt inside the core of each and every one of us.

**denotes fake name to protect privacy of individual






Indeed, "One More Day..." theme of the Donate Life Float
 
The "One More Day..." Donate Life Float of the 123rd Rose Bowl Parade