Unyts Blog

I planned to have this blog begin, “Greetings from Pasadena!” but throughout our Rose Parade journey our days, brains, and hearts were filled to overflowing so that I could not properly express myself. To say our California vacation was once-in-a-lifetime is an understatement. My husband, Jerry, son, Nicholas, and I could return another year and see 50 glorious flower-covered floats, but the privilege of riding in that parade will never happen again.

First the logistics of building this year’s “Journeys of the Heart” Donate Life float. It was 55’ long, 30’ high with 30,000 flowers and 32 riders—by far the largest riding contingency in the 2013 parade. It had more than 40 individual floral items from poppy seeds to thousands of traditional “pink” roses which Jerry & I helped separate into five distinct shades of pink. Over 18,000 of the flowers on our float were in individual water vials. All others were glued on the float one-by-one. Nicholas hauled pallets and pallets of flowers—gerbera daisies, roses, irises, and show-stopping, heart-shaped anthuriums—and meticulously apply black seaweed to the DONATE LIFE sign. I couldn’t have been prouder of him. We worked one of the eight-hour decorating shifts in a huge pavilion which housed 11 of the parade floats and were immersed in natural beauty. Two of the roses in the 8’ heart on the front of the float were specifically dedicated to my donors, Maureen Wirth and Joseph Albers. Over a thousand other roses—more than a heartful—carried personal dedications to loved ones.

Throughout all the Rose Parade festivities we were surrounded by the Donate Life family: 32 float riders and their families; 72 floragraph honorees, each of whom was an organ donor. Some sadly died in “typical” medical fashions, other died in tragic—often horrific—ways. Additional volunteers came from across the country, many of them donor families and recipients who just wanted to be a part of the celebration.

At our Float Rider family dinner, we recipients told our individual stories of medical “issues” and how successful transplants have saved our lives and our families. Hearts, lungs, livers, kidneys, bone…without them most of us wouldn’t have been there. I was a “fortunate” sick person as I was able to maintain a reasonably normal life on peritoneal dialysis while awaiting my kidney. Some of my fellow transplant riders told their story as if in the third person as they were literally comatose from sudden infections ravaging their bodies. A few were children at the time of their surgeries, including a beautiful pregnant mom whose first heart transplant happened when she was 17 days old.

Every donor families told heart-aching stories of their children/spouses/parents/siblings taken way too soon: a son who was a newlywed and suddenly died of an aortic aneurysm; a family celebrating the 4th of July at a party with fireworks and gunfire…until they saw their 11 1/2 year old daughter lying in a pool of blood, shot by a “reveler.” A sister honoring her brother who died in a family house fire; another sister still raw with grief honoring her police office brother. He was on videotape just having bought cookies for a little boy at McDonalds. Five minutes later he was stopping a car where the driver looked to be in distress. He approached the car and the driver shot him in the face! In the midst of these ungodly tragedies, these courageous families thought of others and agreed to organ donation. These are just a few of the life-changing stories Jerry & I now carry in our hearts every day.

Judging Day was New Year’s Eve and is a dress rehearsal for the parade as well as the first time we could officially climb on board the float. Unlike other entries, our float had hundreds of spectators standing in a huge ring and holding hands. When the judges approached, the crowd went stone-silent and parted hands to create an opening for the judges, much like the residents of Whoville did for the returning Grinch. Our theme song, Phil Collins’ “You’ll be in My Heart” started playing and the riders as well as the entire surrounding Donate Life family silently waved and cried and smiled for five minutes until a single clear bell rang out. Judging was over; wild cheering began! We were ready to roll!

Families make it a tradition to camp out in the streets of Pasadena on New Year’s Eve to secure there parade-viewing location. Everything from folding chairs and office chairs on wheels to cots, air mattresses and a real double bed complete with headboard! It was unseasonably chilly so many families had propane “camp fires,” played card and board games, and just hung out together. EVERYWHERE! I needed a few more layers for the chilly morning parade so we spent our New Year’s Eve heading for the closest Target store. One was on the parade route, so after finding two more shirts to wear and a pair of gloves that matched my Donate Life colors outfit, we headed out onto the street to take in the atmosphere. Our host—and the brains of this massive operation—Bryan gave us souvenir float pins to “go out and make friends and spread the Donate Life mission.” I decided to hand out my pins to several groups gathered on what was going to be my side of the float. I introduced myself, asked them to be my friend and to cheer for our float and its Donate Life mission.

Early on parade day, the meticulously planned and executed schedule ran into a snag when the bus did not arrive to transport the riders from the hotel to our breakfast stop at a fun grocery store. Our leaders asked if we could walk—sure!—about six blocks to get there. No big deal for most—just point us in the right direction—but for some recipients with multiple heath issues walking would be difficult. One float rider, Rick, a living organ donor who is the pitching coach for the Washington Nationals baseball team, insisted that Sue, a kidney recipient, hop on his back for the trek. We had everyone from the produce manager to grocery store employee’s wives find cars and help transport many riders the final four blocks to the start of the parade route. Our incredible hosts were quite upset but we reassured them that between the donor families’ grief-filled days and the recipients’ lives of medical setbacks, not getting a bus one morning was not a big problem in the greater picture of our lives’ experiences.

The Float Rider family dinner was beautiful, meeting these souls for the first time; the Gala Dinner of more than 500 Donate Life champions was a celebration of life after misery; the actual parade was a dream. As we rode the 5.5-mile route, the spectators cheered and cheered for our float. Some stood out of respect, many waved, others shouted “thank you, thank you, thank you.” Of course I wanted to point at my new friend, Patty, a donor mom seated right in front of me. She made the decision to donate and help strangers. I am one who must shower thanks on donor families. So, I smiled and waved my heart out, often holding high the photo of my donors, Joe and Maureen. My mission was to let everyone see that 1) the choice to donate is the right one, 2) the gift of an organ and new life will be cherished and honored, 3) I will always live my life true to my best self while living half a life that my first donor, Joe, never got the chance to live, 4) to tell Maureen’s selfless story because she won’t toot her own horn, 5) to also promote living donation because IT WORKS!

During the parade, when we neared the “Target section” of the parade route, I heard shouts of “AMY!” and waved at my new friends from the night before. They got others in the crowd to cheer even more loudly for our float. About a half a block later, again we heard, “AMY!” After the third time, my friend Patty said, “How do these people know you?” I explained my pin giveaway, and almost on cue we heard “AMY!” again. This time it was a nurse, Judy, from Wisconsin, wearing her Packers gear. She assured us she’d take the pin and the Donate Life story back to her hospital. The last shouts from our new friends in the crowd came from a couple. The woman said she would remember my name, because it’s her sister’s name, too. I can’t tell you how great it felt to have made more friends along the route, seeing that they, too, took ownership in our float. (And the Target gloves turned out to be an inspired choice; many family and friends quickly spotted me—or at least my gloves—on TV.)

If I can only maintain one memory into my old age, I will forever cherish the looks in Jerry’s and Nicholas’ faces when we spotted each other on the parade route. Jerry and I held eye contact and waved our hearts out to each other. He was seated next to a discourteous grandstand sitter who thought it would be best to use half of Jerry’s seat for his backside and wouldn’t budge an inch. We laugh because Jerry got three photos of this knucklehead’s elbow, two of the ground, and one of the sky. None of the float. Nicholas’ smile was so big, I thought his heart would burst…I know mine was at that moment seeing him. He waved and waved as is evidenced in his video of the float passing by when you see his hand continually popping in and out of the frame. It’s precious! I was so happy to have our nephew Scott with us, too; excellent waver and photographer! When we reached the end of the parade route and a bus was waiting for us, we were feeling higher than helium balloons. We arrived at the post-parade reception to the cheers of our waiting family. Nicholas ran out of the restaurant to grab and hug me. I will never forget that! I was proud mom and SO happy to have my family together.

OK, so that’s the short story. It may be little out of order, but I’m trying to condense it while hoping it remains logical. I could fill a book! I hope this gives you a small flavor of the incredible celebration of life we were privileged to be a part of. If you ever want to be around millions of flowers at the same time…head to Pasadena on New Year’s Day! And if you’re ever feeling alone as a donor family, transplant candidate, medical professional dealing with pre- and post-transplant patients…trust me. You’re not alone! The Donate Life family is supportive and caring and enthusiastic. There was more love in the people we met than in all the flower petals in the parade. I’m alive and loved. I am blessed, and I am grateful.

Post-parade appearance on local morning TV show, Winging it in Buffalo, to promote Donate Life: Click Here

Blog post by Amy Nash. Amy is a double kidney recipient, diagnosed with End Stage Renal Disease during her senior year at The University at Buffalo. She received her first transplant at age 23 from a 20 year old organ donor killed in a car accident. Years later, Amy was once again placed on the transplant list after her renal function fell below 20%. This time, an old childhood friend was a match.

Amy has been invited to Washington, D.C., to speak with Congressional staffers in an effort to ensure passage of the 2008 Medicare Health Act. Amy speaks to groups all over WNY, about the importance of organ donation.