Revive Hope

Four Christmases… And Erika Desireé Schwager

Four people and their families are celebrating this holiday season… Whether those four people are celebrating Christmas, Hanukkah, Kwanzaa, Solstice or some other observance – I do not know… But I do know that they’re able to do so because of a beautiful, 16-year-old girl from Iowa named Erika.

With Scott’s help – I’ve been yipping about Annie and the Chana family and their upcoming Rose Parade adventure – and now I’d like to tell you about a donor from Iowa being honored with a floragraph.

Erika Desiree Schwager lit up the room with her bright brown eyes, her endless energy and her contagious laugh. She was a competition squad cheerleader who loved to dance and express herself through a variety of different music. She loved to perform in plays in auditoriums full of onlookers or before a group of peers. She was also a beautiful artist. Erika used her creative hands to captivate the minds of art enthusiasts with canvas, paper, and clothing. Her artistic tendencies were even evident in the way in which she applied cosmetics, recalled her mother, Bette.

On November 20, 2006, the car 16-year-old Erika was in collided with a fire truck. Despite tremendous efforts by firemen, emergency medical technicians, nurses and doctors, she died six days later. Her death gave four others a second chance at life through organ donation, and helped numerous others through tissue donation.

Erika decided that she would donate her organs after she passed her driving test. “I remember vividly her exact first words when she walked confidently into the house after getting her driver’s license, ‘Look mom! I’m going to be an organ donor!’ After her accident, her father and I facilitated her wish. She was able to donate both of her kidneys, liver, pancreas, bone, tissue, and skin and heart valves,” said Bette.

  In a note to us, Bette proudly explained:

On January 1st, 2010, Erika will be honored and remembered in the 121st Rose Parade in Pasadena California. A picture of Erika’s face will be transformed into a floragraph; a portrait created with floral material and displayed on the Donate Life Rose Parade Float. (Above: Bette holding Erika's floragraph.) The Donate Life 2010 Float entry will feature 76 floragraphs of organ and tissue donors from across the country. The Donate Life Float themed “New Life Rises”, is represented by the mythical phoenix, a symbol of life emerging from the ashes of death.

Prior to the parade, I will have the opportunity to decorate this inspirational float. My family will attend the Donate Life Gala Dinner, and sit in the grandstand seating to watch the Rose Bowl Parade.

Since Erika’s death three years ago, Erika’s parents have been going out and talking to young people about the importance of putting “yes” on their driver’s license for organ donation – and for all they do, Iowa Donor Network nominated Erika to be one of the people featured in a floragraph on the Donate Life Float in the Rose Parade on January 1, 2010… Here is a little YouTube tribute to Erika and her life that shows her fun and infectious smile:

Erika’s Mom explained how Erika made the decision to become an organ donor – but that’s not magical – that doesn’t just happen – and it doesn’t happen by accident… Like Erika did, the beautiful 17-year-old Iowa girl who saved my life, Kari, told her family how she felt about organ donation – and the way Erika and Kari felt about organ donation didn’t just magically appear in their precious minds – it certainly had a lot to do with their mothers and fathers and the way they were raised, and perhaps, the influence of the friends who surrounded them…

Erika’s parents, and her two brothers, will be in Pasadena on New Year’s Day to see their beautiful daughter's and sister’s floragraph passing by on the Donate Life Float. I can tell you, personally, that it’s an incredible and emotional experience to be there, surrounded by so many donor family members, recipients and transplant professionals – to see someone honored that you care about so deeply…

I can also tell you, personally, that the parade is nothing compared to the emotion of celebrating the holidays with your family – being alive, and hugging and laughing and singing with them – when in the not-too-distant past, you didn’t know whether you were going to survive to the next holiday; and knowing that there is a person, and a family out there somewhere, who are directly responsible for you being alive, and hugging and laughing and singing.

Four people and their families are celebrating this holiday season – because of Erika, and because of her family… This holiday season, if you happen to watch the Rose Parade and see the Donate Life Float with Erika’s floragraph passing by, take that opportunity, like Erika did, to discuss with your family how you feel about organ donation…

I'm thinking 'bout it...

 

I'm thinking about posting...  I really am!!!  I always try to post on Thursday mornings and I pretty much blew through the day with a few ideas, but not an actual post!  I've got quite a bit on my plate right now and some of it I just need to get off my lazy fanny and get done!

Last Wednesday, I got to speak to "Team Hope" - the monthly meeting for so many of the staff at Gift of Hope.  I got to tell them all about riding the Donate Life Float at the Rose Parade!!!  And I got to thank them for letting me be the one they sent...  I did create a little chronology of posts about my journey, and I'm pretty sure I'm not finished yet - there are still to many people I want to tell you about.  It was an experience I'll never, ever forget - mostly because of the people I met.

In just over three weeks, my team "Kari's Klimbers" will be hauling our fannies 94 floors up the stairwells in the John Hancock Center in the "Hustle up the Hancock".  I have 100 people on my teams this year, and I'm so proud to have them with me...  And I have a handful of Kari's friends and volleyball teammates coming along with me.  Anyone who knows anything about me, knows how I feel about Kari.  You might think you can imagine how it feels to be close to people who knew and loved her.  You can't.  It's more.  And I have so many people who have stood by me and supported me through different parts of my life who climb with me too...  And, I have our Melissa climbing with me too!  She'll be climbing to honor her precious heart donor, Chloe...  And Megan and John will be climbing to honor their lung donors...  And I'll also be climbing to honor some of the chicks climbing with us, who help deliver these gifts to us, like Jennifer and Susan...  You can read about my climb, and there are links to pledge me and any of my team members at www.ClimbingForKari.org

In another area of my life, Scott over at I am. Are you? wrote about the launch of a new transplant community network that seems like it will be pretty cool!  You can connect to the Donate Life Illinois Organ & Tissue Donation Community...  Check it out -- there are recipients, donor family members, living donors, organ donation and transplant professionals, and just people who want to promote the cause.  Both Melissa and I have joined...

Finally, there is another site that is up and coming.  The name of the site is "Heroes Ripple" - I think it's a cool name.  It's still in the design stage and the person responsible for its creation is standing next to me in the picture to the left.  Her name is Kim Morsching.  I was forwarded a beautiful letter she wrote about riding the Donate Life Float - here is a paragraph from that letter:

I had read all of the stories on the DonateLifefloat.org website.  I cried over every one of them.  Their stories of loss, life and contribution are so empowering.  These individuals can and are changing our world for the better.  I was so humbled to be included amongst them.  I wanted to meet each person and soak up their gifts.  I have learned a new level of enthusiasm from Steve, community outreach from Jose and Theresa, fearlessness from Susan, gentleness from Mary, connecting with people from Sergio, facing and accepting life experiences from Randi, friendship from Ruth, Ron and Peter, inclusiveness from Lily, kindness from Jim and strength of family from Eric and Jenna. I can’t imagine what else I would have learned given more time to connect with the rest of the donor families and recipients.

I promised Kim that I will write about me and my hero, Kari, for her website. Kim lost her 21-year-old son, Kevin.  Kevin became an organ donor.  You can read about Kim and Kevin at the Donate Life Float website, or at her developing website. 

You can read about her, but earlier this month, I got to hug Kim.

As long as my heart is beating...

Jenn and Ted and I often post newspaper articles here about people impacted by organ donation – sometimes we’re lucky enough to post an article where we have an intimate knowledge of the people involved in the story… This is one of those times.

She was a go-getter, a happy-go-lucky kid who was good at sports, school and band, living in Algona, Iowa. Her mom describes her as head-strong and passionate. School came easy to her, and she was a member of the National Honor Society. Volleyball was the love of her life. At 5-foot, 9-inches and 150 pounds, she was a powerful middle hitter. She enjoyed running and staying in shape.

I never met her, but I’ve learned so much about her – and I’ve come to love her, and her family, and so many of her friends…

He was in Illinois, born with cystic fibrosis, a progressively debilitating disease that causes the body to produce unusually thick, sticky mucus that clogs the lungs. He was very much in love with his wife, Laura, and they had been married more than 11 years. He loved walking and golfing, but in 1997, at the age of 37, he was on supplemental oxygen 24 hours a day, unable to work or do the things he enjoyed. He needed two-hour physical therapy sessions four times a day to clear his lungs.

He is me. I’ve known him all of my life.

This story was written by Mindy Baker and published in the Algona Upper Des Moines paper and it’s titled “Remembering Kari.” It’s about pain, and about joy – and about leaping tall buildings with very special friends.  Check out the "photo gallery" under the main picture in the story - there are a few pictures in there...

Remembering Kari

March 6, 2008 - Mindy Baker published a little follow-up story in the Algona Upper Des Moines paper (with more pictures) titled "Nearly $30,000 in Kari's name..."  Thanks, Mindy!!!

Leaving Dinosaurs... Standing on Rainbows.

A few months ago, a chick I adore over at Iowa Donor Network named Eve sent out a very excited email about a donor Mom named Rachel who she met at a learning conference. Rachel spoke at the conference - she told them about her son, Nate. Nate passed away in 2002 and became a donor. A few weeks later, another chick I adore over at Gift of Hope named Roxane was excited to let me know that she had heard Nate’s Mom Rachel as well.

One of the things that Nathan liked to do was to leave his own little bit of graffiti around the town where he lived – he superglued small, plastic dinosaurs in random spots around town. At the conference, his Mom passed out plastic dinosaurs and asked the participants, when they came across somewhere interesting, to leave one and take a picture – and send the photo and a quick note to her.

Eve comes out from Iowa to do the Hustle up the Hancock with me in February – this will be her third time she’s climbed with me… Eve said she’s bringing her plastic dinosaur with her to take a picture on the 94th floor.

I emailed Rachel and asked her about her son.  I told her I wanted to post a little something about her and about Nate, and about leaving dinosaurs.  I was all set to write a fun little piece and tell people to send Rachel pictures of toy dinosaurs in memory of Nate… Then Rachel sent me a little story, and the beginning of an essay written by Nate that made me cry:

INTRODUCTION

My son, Nathan Jillson, moved to Portland during the summer of 2002. His journey had taken him from his home in Wichita, Kansas, to Boulder, Colorado for a year, to a few month stint in San Francisco, and then to Portland.

After a long and discouraging job search, Nate obtained employment at Ken’s Artisan Bakery at 21st and Flanders. He had also enrolled in a creative writing course and a Psychology course at Portland Community College, Cascade Campus. He loved Portland, and was connected with the world.

Nate’s professors supported and encouraged participation by their students in the PCC Service Learning Program. In the program, students were to find volunteer service positions in the community, and incorporate those experiences in their class assignments. Nate decided pretty quickly that he wanted to volunteer at an elementary school. When he went to the first school to apply, he was rejected. It may have had something to do with his abundant ADHD energy and his very tattooed left arm. Nate would be rejected by nine more schools, but he persisted and found his place at Buckman Elementary. It was a perfect match.

While at Buckman, on December 9, 2002, Nate suffered a massive brain stem hemorrhage. Without regaining consciousness, Nate died five days later at Legacy Emanuel. Nate had been clear about his wish to be an organ donor, and he was the first DCD donor in Oregon.

In Nate’s belongings, there were a number of standard black and white Mead Composition Books. On the front cover of one, Nate had written: “Some Words And Stuff For Things”. Looking at the first page, it became clear that this was a notebook he used to keep track of assignments for his classes, and a variety of other writing. It was in that notebook that I found the draft essay that is transcribed below. I hesitated transcribing Nate’s Essay, because it was not a finished final piece. In fact, it was an introduction to a class paper addressing the tragic lack of funding for Public schools. After many requests for the essay, I determined that it was alright to transcribe it as long as it is accompanied by this history and introduction. I would request that if anyone wants to share this essay with others, that they keep the introduction with it.

Thanks, Nate’s Mom, Rachel

Nate’s Essay

A little girl hugged me today. I think maybe I’m on the right path. I’m not sure if I like where the path might lead, but it is a really nice path. Is it possible that we, as a culture, focus too much on the light at the end of the tunnel, the pot of gold at the end of the rainbow. Isn’t it enough to realize you’re standing on a goddamn rainbow.

I’ve not been at the school for long, maybe three weeks. I go in on Mondays to work in Activity Center, an after school program for students at Buckman Elementary. So far I have won at Candyland twice and stacked the deck once to make sure the quiet little boy with snot always hanging right at the edge of his nostril won once. I have built a Lego robot with four double rockets. I’m not sure what four double rockets really are, but I was assured my robot, our robot, had them. I have removed Sam’s organs many times in Operation.

I don’t know what I’m going to be when I grow up. I don’t even know if I will grow up. I prefer being called a boy to a man. I still want a tree house. I’ve been focused on some form of regression for a long time and now I’m back in elementary school. I love it.

I’m not sure where this path leads. To become a teacher turn to page 65. To drop out and bake for a living turn to page 14. To build longboats in Norway turn to page 21. I sometimes feel like I’m trapped in a Choose Your Own Adventure style book. If you don’t like one ending you can backtrack and start over. That’s why I’m back in elementary school.

A little girl hugged me today. I was walking out the front door of Buckman Elementary School and was chased down and hugged. It was Disneyland and Circus Peanuts and Star Wars Toys. I damn near cried. I’m not sure where the path I’m on leads and I don’t care. It’s a really nice path.

Several people are alive because of Nate. Maybe someone understands that they’re standing on a rainbow because of Nate. Maybe someone got a hug today because of Nate. Maybe someone realizes that they’re on a really nice path – because of Nate.

I think I would have liked Nate. I’m 47 ¾ and I too think of myself more as a boy than a man. And I think I’d like a tree house too.

And I think I understand it better than many, but I like being reminded that I’m standing on a rainbow.

And circling back to the original motivation for this post - In honor of the gifts he's given others, and in memory of Nate, Rachel would love to receive pictures of toy dinosaurs in front of fun places wherever you are.  Here's one of the pictures I've sent Rachel - it's a little dinosaur in front of "the bean" in Chicago.  I think Rachel plans to create a little website including these pictures in memory of Nate.  I'm sure I'll post about that when she does!  You can send them to Rachel@LeavingDinosaurs.com  I think it's a neat idea and a beautiful little tribute to a very special young man! (And his Mom...)

Words of a Donor’s Mother II

Another very touching write up from a loving mother…

When I was expecting my second child my doctor told me that I was having a girl who was due the first week in December. I was surprised on Nov. 3, 1990, a month early, when I gave birth to my SON, Brent, and in total shock when his twin brother, Nicholas, was born 18 minutes later.

They were typical twins, complete opposites. Brent was the fearless leader and Nick was the cautious, protective follower. Brent was all sunshine. He totally embraced life, believing that he knew everything and could do anything, that nothing was beyond his grasp. He found only the positive in even the worst situations and would do or give anything he could to help others or make them happy, very often putting their needs and happiness before his own. He understood and enjoyed the true spirit of giving. It is with these thoughts that I made the most difficult decision of my life, but one that I have never regretted.

On April 13, 1998 Nick came home from school and announced that Brent had been hit by a car. Nothing could have prepared me for the shock of finding my 8 year old son, lying in the street 90 feet from the crosswalk. We found out later that a woman, already an hour late for work, accelerated through a red light and barely missed Nick but hit Brent.

Brent was such a fighter and loved life so much it never entered my mind that he wouldn’t survive—even when he was airlifted to the hospital or when my family was led to a private waiting room, away from others. When we were told that he was brain-dead I understood what it meant but didn’t want to accept it. When we were finally allowed to see Brent I could actually feel that he was no longer with us. I knew that “the organ donor people” would want to speak to me and I didn’t want to see them, but I did.

Lisa from [OneLegacy] was extremely compassionate and patient. She made sure that we understood what had happened to Brent, the organ donation program and procedures and the options that we had. My husband and I had agreed on organ donation for ourselves but never imagined we’d have to consider it for one of our five sons.

We needed time to think about it. While discussing it with my family, my sister Terry pointed out that Brent was such a giving child she was sure he would want to leave this last gift. It reminded me of when Brent learned that my friend’s toddler was blind and asked if he could give him one of his eyes so the child could see. I also asked myself how I’d feel if one of my children NEEDED an organ—I’d certainly hope it would be available.

We decided to donate Brent’s major organs and have never regretted it. In fact, it gives me a sense of peace knowing that Brent did not die for nothing. Brent’s organs helped five people. We have met and communicate often with one of Brent’s organ recipients and occasionally write and speak to another. I feel very close to them because we share something very special – Brent.

I believe that losing a twin is worse than losing a child. I doubt that Nick will ever feel whole again but knowing that five people are still alive because of his twin has helped him to find some peace.

Brent once wrote that he wanted to help people when he grew up. He didn’t get the chance to grow up but he did get the chance to help some very special people by giving the most precious of gifts.

May God be with you ALWAYS,
Toni Adams and “Angel Brent”

Source: OneLegacy Transplant Donor Network

The first "Words of a Donor's Mother" posting.

Words of a Donor’s Mother

I want to share with you a very touching write up by an organ donor’s mother. It’s a little long, but please take the time to read it. You will be glad you did!

Lisa, Donor mother
Texas

July 4th, 1998, my 24-year-old son James called to check up on how I was doing (my mother had died suddenly two days earlier). Oh God, if I had known this would be our last conversation; I would have memorized each word and burned it into my very soul!

Before going into work to wrap things up, he let me know he had arranged to take off the rest of the week and would see me later....If only I had kept him on the line longer...or shorter...if only!!! This will forever haunt me...I told him I loved him.... he said he loved me...and we said good-bye...and hung up the phone.

In less then an hour, our lives would be shattered forever by an 18-wheeler that was stopped and straddling two lanes on the highway. James' car went under the truck; another car hit him from behind. Our son was airlifted to the hospital with a 5-inch gash across his forehead down to his cheek, three skull fractures and every facial bone broken. He already had irreversible brain damage, which kept getting worse as his brain continued to swell. The doctors tried to prepare us on how he would look...but no amount of words could ever have described how he looked when we walked into that ICU room. My handsome son, who had been so intelligent and musically gifted, who had graduated school with honors, now lay so still and barely recognizable. Tubes were coming out from everywhere and in the background we heard the sadistic whoosh of the ventilator softly mocking us. An array of lights danced overhead on the monitor's screen. I was to learn what each number meant...and as each hour and day went by I dreaded looking up at the changing numbers, yet I dreaded not doing it either. James' brain continued to swell, his cranial pressure climbing. He was in as deep of a coma next to brain death as you can be.

THREE WEEKS EARLIER, while on the way to get his kittens their rabies shots, James and I had talked about a little girl on the news that was waiting to have a liver transplant and how important organ donation was. I had commented how terrible it had to be for her parents not knowing whether their child would live or die. "Look at how many people die every day in the United States," he said to me, "and I bet there would be one of them that could be a match for her. It's not like they need them anymore".

On July 9th, 1998 James was declared brain dead. There are no adjectives to convey my feelings on how I felt. No word too awful, or invented to explain to others my agony. To grasp how tormented you are seeing your child, once so alive (ALIVE!) well, you just can't.

We had already spoken to our other children on their feelings on donating James' organs and we were all in agreement. We requested for the hospital to get in touch with the transplant coordinator for us. After friends and family said their good-byes to him, I stayed in the room with him until the organ recovery team would get there in a few hours. I talked to James. I sang to him old and familiar hymns. I touched his face, his chest, his hands, knees and toes. I told him how we loved him so very much and how he was so special. I laid my head down on his chest and listened to the beat of his heart. A heart that had once been growing inside me and grew up and lived too short of a life. I felt the warmth of his body and knew it would not be too much longer. I wanted time to stand still, or at least go very slowly...it went all too fast. Then it was time for me to leave the room...forever.

While the story of James' life on earth ends here, for others the stories will continue, thanks to organ donation and transplants. As he had helped others during his life, James will continue to help others through his death.

• A little six-year-old boy regained his eyesight and an ex-fireman has a younger and healthy heart.
• I have corresponded by mail and e-mail with the 37-year-old man who has one of James' kidneys. I hope someday we can meet each other, but right now we live too far away to do that.
• Last year at the annual Giving and Living Celebration at the Southwest Transplant Alliance, we met a woman who was 47 and near death when she received James' liver and other kidney. She told me when she was in her coma for over two months, she felt like she was on a ship in the middle of an ocean alone. She could hear people talking but they were far away. How can I adequately describe the feeling when we met? She was like meeting a long lost relative that I had never met before. It was wonderful and overwhelming. She is a precious lady who has had to battle with a tremendous amount of physical problems and has a young child at home.

Since James died, this shadow of sorrow sits on my shoulder, always there, whispering in my ear that he is dead. No one "gets over" the death of his or her child. We learn to live with the pain and adjust to this new normal way of life. I learned to work the computer, joined a monthly grief support group and joined an online support group of other donor moms. I also have become close friends with another mother whose 19-year-old son died two years ago and was also an organ donor. There was an instant bond between the two of us that bereaved parents all share. We had talked on the computer for seven months and then met each other last year at the Giving and Living Celebration, not knowing the other was going to be there.

I cried with her on the second anniversary of her son Jason's death out at the cemetery where he is buried, and now I am going to be able to rejoice with her at her up and coming wedding.

I am able to give newly bereaved parents a ray of hope that someday they will learn to smile again, for in the beginning it is impossible to believe.

Like many awaiting a transplant, or receiving one, my friend battled with guilt about the way she would get a kidney and pancreas (which she did, a year ago and is in wonderful health today) I told her it is not like she was praying for God to be a hit man and kill someone for her. It is just that when the inevitable happened, and someone died, that they would be organ donors and be a match for her. I told her my son James would have died whether or not we had donated his organs or not.

Donor families don't want recipients to feel guilty. Our family never hesitated with the decision to donate James' organs. Even if someone signs a donor card, it is ultimately up to the family whether or not their loved ones organs are donated. James' spirit was gone out of his body and his organs were now no use to him. I could not see burying organs that could help others to have a long healthy life, and keep their families from going through the pain of seeing a loved one die.

Love like you've never been hurt
Sing as if no one was listening
Dance like no one was watching
And live each day as if it were your last

Source: James Redford Institute for Transplant Awareness