Revive Hope

We're Pink!!! HOT PINK!!! Kari's Klimbers 2016

Ain't these freaking awesome?!?!

This is the fourteenth time I will ascend the 1,632 steps, 94 floors of the John Hancock Center in the Hustle Up the Hancock!!! This is the thirteenth time for my team, Kari's Klimbers...

The simple fact that I actually can take the stairs 94 floors up is mind-boggling - when not too long ago, standing at the bottom of a flight of stairs, my oxygen tank weighing on my shoulder, felt like I was at the base of Mount Everest. Actually - it was 15 years, 325 days ago that Kari came into my life and changed all of that...

This is the back of my team shirt... The splash of numbers and initials are people who are very special to me. Almost all of them are people from Iowa who knew and loved Kari - who have come out to be with us and climb with us. Kari was #13 on her Algona Bulldogs High School volleyball team - the top two rows are Kari's volleyball teammates who climb regularly. (#7 is my Alex, who gave me Mabel, her kidney, in May 2012!). The next four rows of initials are Kari's friends, and people who Kari grew up with... The bottom row are not Iowans - they are people special to me, some of whom have climbed with us, who we've lost over the past years because this transplant thing, and sometimes just life, can be rather fragile.

Here are the people behind all of the numbers on my shirt - stopping for a picture on Kari's floor, 13, during the climb a few years ago. I cannot imagine adoring daughters more than I do these girls. I would take a bullet for any one of them. Preferably small caliber and in an extremity - but nonetheless, a bullet. It's been 16 years. Now and then one or two of them miss, apologizing profusely, because, ya know, well - life happens - but most of them are out here every year to be together, and help me remember and honor their friend. Do you have any idea how that makes me feel? (Or how that makes Kari's family feel???)

Since we'd started fourteen years ago, I'd tell you in a heartbeat that I never did this to raise money, I do it to tell people about Kari, and about the goodness of organ donation. But, the money Kari's Klimbers has raised over the past years is probably approaching a half million dollars! I know what it's like to struggle for breath - to be afraid of dying... Can you imagine how many people in my respiratory shoes who we've helped??? I hope Kari would be proud of the people we've helped in her memory, and in her honor.

The Hustle and the Respiratory Health Association also funds lung cancer
research. It gets less press, but lung cancer kills more women than breast cancer, ovarian cancer and cervical cancer combined. Along with Kari - this year our climb is also dedicated to Laura's mom. My beautiful mom-in-law was diagnosed with lung cancer last fall. Much to my Laura's dismay, moms and I were partners in mischief and finding the wrong foods to eat, particularly doughnuts. When she was diagnosed with lung cancer, mom and I had some long chats about options, and the strength it sometimes takes not to fight. She chose to fight. Ironically - the chemo had dramatically shrunk her tumors - it worked. But it was too toxic for the rest of mom and she didn't survive. We climb to fund research so maybe next time - someone else's mom-in-law has a better chance of hanging around and sneaking doughnuts with them.

But to me - this climb will always be about Kari, and the beautiful people who surrounded her. And about Alex - one of the people who surrounded Kari who, years later found out I was in trouble, and let me know she had my back. After 12 years of the drugs that allow me to keep Kari's lungs destroyed my kidneys - four years ago Alex gave me one of her kidneys. Can you imagine what it feels like to be surrounded by people who loved Kari that much???

And about those awesome, hot pink shirts... I didn't know Kari... But on Saturday and Sunday I will be surrounded by several people who Kari grew up with - people who knew and loved Kari... And on Sunday, I will be surrounded by over one hundred people who come out to climb with me, and help me honor Kari and her friends... And we will all be wearing hot pink and neon green shirts - the colors picked out by Kari's beautiful niece, Eva Kari - in the picture here with her brother Garrett. I can't even imagine how much Kari would adore her niece & nephew, Eva & Garrett... And I can only imagine how much they would adore Kari... And I think she would be tickled-pink at the colors her Eva chose for this years climb!!!

As I'd mentioned, sixteen years ago, standing at the base of a flight of stairs with my oxygen tank weighing on my shoulder – looking up that flight felt like I was at the base of Mount Everest. In my wildest, wildest dreams – I could not have imagined a world where I could stroll up 94 floors of stairs – 1,632 steps – without skipping a beat. I could do it every single, freaking day… Seriously! I can do it because of organ donation. I can do it because of two beautiful girls from Iowa – and the inspiration from dozens of their friends and families. And I can do it because of millions of people, like you, over the years supporting people like me… Thank you.

If things are tight, just cheer me on, and think about Kari, Alex and all of the people involved in saving lives like mine… But, if you can spare a few bucks, please consider opening a purse or wallet and donating to me, my team, or someone on my team, or someone you know doing this climb… I know an awful lot of people struggling like I did. You can help me do something to help them – and help me pay forward the millions who have kept me here on this beautiful planet.

Contribute to Steve's climb – click here…

Contribute to Kari's Klimbers or a team member – click here…

To see my website about Kari and what she's done – click here…

To register to become an organ & tissue donor – click here…

THE POWER OF YES: The Power to Heal

Written by Tori Bailey

The morning of August 16, 2010, started out as any other morning. I woke up and got ready for work then stopped to give my husband, Jeff, a hug and kiss. A typical morning routine that we never missed — one that put a smile on my face as I rushed out the door to work.

I realized something was wrong that morning when I called him to join me for lunch. His voice was different. I rushed home to find my husband curled up in pain and scared for his life. After rushing him to the hospital, I learned that he had suffered from a brain aneurysm, and I had to say goodbye to my husband, my best friend, and the man who taught me what it was like to truly love and be loved.

As the day moved on, decisions had to be made. There was no question in my mind that Jeff would want to be an organ donor. When I realized that he wasn’t going to make it, my first call was to his best friend, Jerry. You see, Jerry was on the transplant waiting list for a kidney.

Jeff and Jerry used to work together at Toyota of Des Moines. They had a ton in common, and I hit it off right away with Jerry’s wife, Anna. They were great friends of ours, and it was very hard for us to see Jerry so sick. Anna and Jerry’s situation prompted Jeff and me to discuss our end-of-life plans and the importance of organ donation. I’m thankful we did because when I was faced with the decision, I knew exactly what Jeff would want me to do.

I’m pretty sure the nurses in the ICU at Mercy thought I was crazy because as soon as I found out that Jeff wasn’t going to make it, I started bugging them to send someone from the Iowa Donor Network to talk to me. I knew I didn’t want to lose the opportunity to save another person’s life — especially if there was any way that Jeff’s kidney was a match for Jerry. A day later, Jerry had transplant surgery to receive Jeff’s kidney.

There are many things about Jeff that I miss. We loved riding motorcycles, gardening and watching the History Channel. We shared a passion for all things music; he had amazing talent, and I loved to listen to and watch him create. I am blessed in that I can always go back and find comfort in the music he wrote.

I’ve also formed a strong bond with Anna and Jerry. Watching how they’ve thrived since the transplant has been wonderful for me. They have loving children and grandchildren that light up their lives and bring meaning to my loss.

I am so proud that Jeff felt so strongly about being a donor. Even though his passing was traumatic and sudden, his legacy continues in the gift of life he gave to many people.

To see Tori in the Power of Yes video series, click here.

A Beat Goes On... Ladies' Home Journal

 

Check this out!!!

Our Melissa is in a beautiful spread about organ donation in the June 2011 edition of Ladie’s Home Journal!!!

Melissa’s story in the latest issue of Ladies’ Home Journal is titled, “A Beat Goes On…” There are five stories about organ donation in the article titled, “Lifesavers: Stories of Organ Donation” – four stories about successful transplants, and one story about a Michigan woman with cystic fibrosis who did not survive the wait for lungs… I’m naturally biased, but Melissa’s story is my favorite story in the group. (It’s a lot easier to play favorites when you’ve actually hugged the person…)

In addition to her story in Ladies’ Home Journal – you can also check out Melissa’s website about organ donation, and about her journey at:

 

www.MelissaSimon.org

 

I met Melissa via email back in 2008 – she sent me a note congratulating me when I was chosen to ride in the Rose Parade… I asked her if she could write a little story for me about herself, and her donor, Chloe, that I could post here on Revive Hope. She didn’t have a great deal of information about Chloe yet – but she had exchanged anonymous letters with Chloe’s family – so she had enough information to have an idea what Chloe was like…

Instead of the little story I asked for – she responded with a beautiful, little letter, from her to Chloe… My post about that exchange, and Melissa’s letter is titled, “Open Hearted”…

About a year later – Donate Life Illinois used Melissa’s letter to create this amazing video about her and Chloe:

This video was involved in helping Melissa meet Chloe’s family. Before they knew who Melissa was, Chloe’s Dad stumbled across this video while doing an internet search… After seeing the video – they reached out through their OPO, and made contact with Melissa…

I don’t know what it’s like to lose a child – I think about that quite often – I have no doubt Melissa does as well… But can you imagine stumbling across a video of someone as precious as Melissa, who has your child’s heart beating steadily in her chest – and listening to her reading a beautiful thank-you letter to your child for the gift she received?

There are over 110,000 people listed and waiting for a gift like the one Melissa received – there are so very many of us who have already received that gift… And pretty much all of us are as thankful as Melissa is in the beautiful video above. Can you imagine, many years from now, someone having the same thoughts and feelings that Melissa has about Chloe – having them about you? Be someone’s hero – join your state’s donor registry – let people know how you feel about organ donation…

Reasons...

Last Tuesday I got to bat clean-up at Gift of Hope’s Lifesaving Partners Awards Ceremony… It’s Gift of Hope’s annual event to honor people who work closely with Gift of Hope to promote and accommodate organ donation – it can be people in government, media folks, hospital folks from Emergency Room, the ICU, ethics department and other areas – people who help grease the wheels, spread awareness, educate others, and help make organ donation happen… It’s one of my favorite gigs because I am an ultimate beneficiary of the work they do – and I get to thank them for what they do… And I get to show them how thankful I am for the gift I was given – for the girl and family who gave me this gift – and for the people who helped get this gift from her to me…

I borrowed a little prose from my friend in New Jersey who wrote the most beautiful thing I’ve ever read about Kari and about me on her blog titled "donorcycle", in a post titled Legacy. I wrapped my talk around a few paragraphs from her post… Here is what I said.... (click link to Adobe .pdf file…)

Now – this video has nothing to do with what I just wrote about – but maybe it has everything to do with what I just wrote about (the embedded video doesn't always seem to work, you can try this link...):

View more videos at: http://nbcchicago.com.

So – last week our friend Ruth told us about a news story she saw on TV (the above video) about a young girl with cystic fibrosis who is waiting for a double-lung transplant at Loyola, where I was transplanted.  This young girl has also has been playing the lead in her high school production of “Hairspray” – singing and dancing with 30% lung capacity… She asked me if I knew her – I thought I recognized the name – I know I’ve met her family, but I don’t think I’ve met her…

The next day, I received a Google Alert for “lung transplant” on a story about Julie D’Agostino – the girl Ruth had seen on TV… I remember that I had met her parents at some cystic fibrosis fundraising function…

That day, I found her on Facebook and I sent her a friend request, along with a little note (OK, long note – I don’t do “little”…) I told her that our friend Ruth had seen her on TV, and that I had read a few articles about her. I let her know I was proud of her… I tried to tell her a little about what living and breathing with beautiful, new lungs is like – I told her to keep her eye on the prize and to get through this – and that I hoped that her journey is as amazing as mine has been… I got a beautiful note back from her thanking me for inspiring her and telling me that my words would stay with her forever…

That night, my Mom and my Sisters went to a play – my adopted niece, Lauren, was performing in the play… After the play, Lauren insisted on bringing my family back to meet the main character – who has cystic fibrosis and is waiting for new lungs and is “amazing” – and they introduced her to Julie D’Agostino… And Julie and her family proceeded to tell my family about the note Julie received from me just that day!

On Easter Sunday, Lauren showed me a number of YouTube videos of Julie’s performances – and Lauren was right – Julie is amazing… The thought that she’s up there, belting out these songs – dancing and strutting around the stage – with 30% lung capacity, I find rather awe-inspiring… Check out this video of Julie singing “I can hear the bells”:

Julie is listed and waiting for two lungs – without them, she simply won’t live that long… With all she does with the diseased lungs she’s living with now – I can’t even imagine what she’ll be able to accomplish with a beautiful gift from a special person and family… I tell people about Kari and about the beautiful lungs she and her family gave me – I do that because I want the whole world to know about her, and I want them to feel her smile like I do every day… But I also do that because of people like Julie – so that people understand that there are others out in the world with a desperate need – and when they commit to being an organ donor, at some point, hopefully in the distant future, they will help someone as precious as Julie – and someone like Julie will think of them the way I think of Kari…

I guess that there are a lot of reasons why I tell people about Kari – I never met her, but through her family and friends sometimes I feel as if I know her a little bit – and I don’t want anyone to ever forget her. But I also tell people about her to help people who take some responsibility in accommodating gifts like those Kari gave me and others, understand how precious those gifts are, how precious the giver was, and how special what they do truly is…

 *Chicago Sun-Times photo by Jean Lechat


And then there are people like Julie D’Agostino, waiting for someone like Kari – and waiting for all of these people to leap into action to help deliver a gift to her from a person or family willing to donate… There are over 110,000 people like Julie waiting… I tell people about Kari so that they understand what organ donors do for their fellow human beings. Be someone’s hero. Register as an organ donor on your state’s donor registry…

This one time, she was on time... Jordyn Burkart

Out of the blue, last October, I received a little email from the Library Media Specialist at Denmark High School, Denise, in Denmark, Wisconsin… She described a project where they choose a book – and several teachers read a chapter or two and discuss it with their classes. Then, after the readings, they try to have someone related to the book or subject come out and talk about the book with their students… She told me that this year they’d chosen Reg Green’s, “The Gift that Heals.”

Pretty much at that moment, I knew that I was being offered the chance to go tell several hundred high school students about Kari, and about the gift she and her family have given me. Chapter 19 in Reg’s book is about Kari and her family, and me and Kari’s heart recipient, Sandy…

Then, Denise lays another little surprise on me. After reviewing the book and finding a rather-biased customer review I had posted on Amazon.com and discovering that I lived in Chicago – then reading a little more about me and Kari… She knew that one of their teachers in Denmark used to live in Kari’s hometown of Algona, Iowa – and she found out that Kari was one of his students… And – that he’s married to Kari’s volleyball coach.

Bill and Della are the teacher and coach – I actually got to meet them a few weeks early. Della teaches and coaches at different high school near Denmark. I connected with them via email and on Facebook shortly after my exchange with Denise. And both of them joined my Kari’s Klimbers team and Hustled up the Hancock with me at the end of February! It was doubly neat for me – I’ve climbed with Kari’s friends and her volleyball teammates for six years now – and this time their teacher and coach came along!

So… This past Tuesday I got to speak at Denmark High School. They all read the chapter about Kari and me at the end of last week – and then they told the students that I would be out to speak to them… We saved the part about Kari being Bill’s student as a surprise – along with Bill & Della’s Hustle journey too… I started by reading Jenn’s poem – then I let them know how I feel about Kari and her family, and her friends – and what it’s like to breathe with her beautiful lungs after struggling with my diseased lungs all of my life… Judging by how many glistening eyes I saw looking back at me – I think my message connected…

Then, we had a fun treat – not only was it a surprise to the students and staff that Bill & Della taught and coached Kari – but we got to show them their adventure coming out to climb with us! Bill videoed their climb and Denise edited it into a fun 10-minute presentation… I’ve uploaded it to YouTube – it lost a little quality, but it’s still pretty awesome!

I also had the honor of sharing the podium with Erin Davisson. She is an anchor and reporter at WFRV-TV in Green Bay, Wisconsin – and she is also a 20-year liver transplant survivor. She told the students about her journey, and many of the things she does to spread awareness about organ donation – and she told them about the importance of organ donation. We also managed to make the 5pm news in Green Bay!

At the end of our program, we heard from a Dad… Dennis Burkart. He lost his beautiful, 17-year-old daughter, Jordyn, only six weeks earlier. Jordyn died tragically in an auto accident – and Jordyn became a donor. Jordyn was from a nearby high school – and the staff at Denmark High School learned that she was a donor after she passed away… They reached out to Dennis just to ask if they could mention that Jordyn was a donor in our program – but Dennis told them that he wanted to participate, and he wanted tell them about Jordyn. Her Dad told all of us about how special Jordyn was…

As he spoke, Dennis explained to us that he was very angry when he was approached by a nurse to ask him if Jordyn could be an organ donor – that at a painful time like that, how could someone make that request? But his 23-year-old daughter, Julie, soon told him that Jordyn had spoken to her about organ donation – and that Jordyn wanted to be an organ donor. She had never spoken to her parents about it – but apparently Jordyn and Julie had discussed organ donation… Later, the nurse returned with a document showing that Jordyn had registered her desire to be an organ donor…

Dennis explained to us how Jordyn was rarely “on time” for things… He chuckled when he remembered and told us about her being regularly late for a lot of life’s events and tasks – but that sometime shortly after her 16th birthday, she didn’t tell anyone, but Jordyn registered to be an organ donor… This one time, he said, Jordyn was “on time”… People are living better lives because of Jordyn. Dennis made it easy to see that her Dad is proud of her…

I had an amazing time in Denmark – the students were all kind and attentive… And like I always think about Kari and her family, and so many other donors and families I’ve met on this journey – I will always remember the smile of another 17-year-old girl, and meeting her Dad…

 

Jordyn Lee Burkart

 

Number 13...

 
So… This Christmas I walked up to my co-workers, Jon & Andrea at the help desk… Andrea was knitting a yellow scarf. (There are lulls from time to time at the desk…) I said to Andrea, “That scarf would look really nice with black stripes…” Jon rolled his eyes while Andrea muttered some words that probably should not be printed on a family blog – and Jon leaned over and said, “she’s knitting that one at home – it was supposed to be a surprise…” Andrea gave me my scarf at Christmas – and then she explained to me that she made it with 13 stripes – and each stripe is 13 stitches wide… As you might imagine – it’s my favorite scarf now…

I know it might be subliminal – but often enough, I look up and a “13” catches my eye… Truck 13 from the Chicago Fire Department might be barreling by… I might look up and notice that the address on a building I’m passing is “13”… Walking through a cross-walk, I’ll see “13” flash… Ambulance 41 will cross my path… (OK, that has nothing to do with “13”, but it was the buggy that took me to the hospital when this whole need-new-lungs-thing started…) But anytime “13” catches my eye – and it happens quite often – it’s like she’s winking at me…

I first learned about “13” around October, 2001, when I received a letter from her family, telling me about Kari – they explained that Kari wore the number 13 on her volleyball team, and that her school retired her number… We established direct contact several months later – and, on what would have been Kari’s 19th birthday, her Mom sent me a shirt that Kari’s volleyball team created in her honor… The shirt has a 13 inside of a volleyball printed on the left sleeve… I wear it whenever I’m involved in any athletic activity – I never would have been able to participate in any athletic activity without her beautiful lungs… I’ve put that 13 inside of the volleyball on the left sleeve of all of my Kari’s Klimbers team t-shirts too…

On Sunday – along with almost 100 other members of my team, I will take the stairs 1,622 steps to the top of the John Hancock Center in Chicago in the Hustle up the Hancock. My team is named Kari’s Klimbers. Over the past 8 years – my teams have raised an incredible amount of money for the Respiratory Health Association… We’re approaching a quarter of a million dollars! For the past several years – my friend, Grizelda, at RHAMC has pulled bib number 13 and given it to me for my climb. I feel ten feet tall when I pin that bib on… I know the fundraising is very important to RHAMC – but the most special thing to me is that they’ve allowed me to tell thousands of people about Kari…

There are a bunch of other numbers that have become special to me – 15, 12, 8, 7, 4 and 2 – Tessa, Katie, Wendy, Alex, Kelly and Samara… I will be with several of them this weekend – her volleyball teammates… And this year, the lady that coached #13, and the rest them in high school, is climbing with us too… And I’ve had friends of Kari’s without numbers – Jenn, Kathryn, Christian, Gretchen (Nicole) – climb with me over the years too… I think you have an idea of how I feel about #13 and the girl who wore that number – even though I never met her – I never knew her… Can you imagine what it feels like to be near people who did know her, and loved her – people who she loved?  It’s quite special.

 
 

One of my favorite moments happened a few years ago at the top. I was waiting for the elevator and, as I’m prone to do, I started chatting with the guy waiting in line in front of me… I asked him why he climbed. He told me about his father, who had recently died because of lung cancer – he climbed in honor of his Dad. We talked about his Dad for a few minutes. Then, he asked me why I climbed… The top was full of my team colors – a lot of people were wearing my “Kari’s Klimbers” shirts, but as I mentioned above, I wear the shirt Kari’s Mom sent me so I don’t look the same as the rest of my team… I pulled out my running wallet and showed him two pictures. He said, “That’s Kari!” I smiled and I welled up a little bit – and I told him that I breathe with her lungs… He didn’t recognize me – he recognized Kari – he recognized her smile… That moment has made 8 years and 12,976 steps worthwhile for me… She was so much more, but she was also number 13:

 

Hope and Renewed Life...

 

We always value comments left on our posts here, even though I’ve been posting a little less often than I should be – I’m going to work on that… A donor Mom left me a comment the other day. We later connected and she told me about her daughter, Ava – and I told her about Kari… Ava is pictured above.

Ava’s Mom, Tamara, shared a very nice op-ed piece she printed in the publication she edits – this was printed a little over two years ago, and I think it’s worth sharing with you:

Through loss and death comes hope and renewed life

By Tamara Thomas
Originally published July, 2008
Editor, Wickenburg Sun

About seven months ago while my daughter was home from college for Christmas, she happened to notice my driver’s license.

“Hey! You’re an organ donor,” she remarked. “How’d you get that sticker? I want to do that.” I told her it was as easy as logging on to servicearizona.com and requesting to be a donor.

“Motor Vehicle Department will send you a form, you fill it out, send it in, they’ll register you and send you a sticker,” I explained.

“Cool,” she said. We went on to discuss the importance of being an organ donor, the possibility of saving lives in death. How innocent that conversation was.

Seven weeks ago, on May 21, I found myself at my daughter’s hospital bedside in shock, faced with the hard reality that she would never recover from her multiple injuries suffered in a car accident. I was faced with the decision to “pull the plug.”

“There are other decisions to make,” said a soft-voiced woman, the chaplain who had also lost an 18-year-old daughter to a car accident four years prior. She reminded me that organ donation was an option.

I immediately recalled that casual conversation from last December and, through my tears, said, “oh yes!” I was soon introduced to several people representing Donor Network of Arizona.

Along with the chaplain and the attending medical staff at St. Joseph’s Trauma Center in Phoenix, the Donor Network people were some of the kindest, most caring people I have ever met. They explained things gently, shed tears with me, and asked about my daughter. They even requested that I bring in photos of her to place by her bedside for the remaining time she was there.

“So we can know who this marvelous young lady is, who will be helping to save so many lives.”

So what does it mean to “donate life?” It means my daughter has saved five people. There are five families who are not grieving. There are five people who are living, who are stronger and will be with their families longer, because she gave her organs to them.

Abigail’s heart was gratefully received by a 57-year-old Arizona man, and he is recovering well. He is married and has three children. Her liver went to a 66-year-old woman, also from Arizona. She too is progressing well. A 37-year-old Arizona man received her left kidney and pancreas. He is doing so well that he was able to return home four days after surgery. He is overjoyed to be off dialysis. My daughter’s right kidney was received by a 58-year-old woman from Iowa. Her needs were specialized and the matching was critical, and apparently, Abigail was a perfect match. She is doing well. She is married with six children. The double lung transplant was received by a 67-year-old woman from Arizona. Her recovery has been nothing short of excellent. She has three children and a number of grandchildren. Both she and her family are overwhelmed with the “gift of life” from my daughter.

Abigail’s giving has and will go further as other life-saving tissues will help burn victims, people suffering from tumors and other illnesses where living tissue can assist.

I know many people who, like my daughter, have thought positively about organ donation but have not done anything concrete about it. Make this the time to stop in to MVD or log on to the Web site (servicearizona.com) and click on “organ donor” on the right side of the page. One never knows whether there will be an opportunity to do so tomorrow.

Some facts about organ donation: Although a person has requested to be an organ donor, it is finally up to the survivors – next of kin – as to whether any donations will be made. Should a person suffer illnesses or other issues that prevent organ donation, he or she can still give life and benefit others through full-body donation. Abigail’s body went on to medical research through the International Institute for the Advancement of Medicine, where she will continue to give. Visit www.dnaz.org and www.iiam.org for more information.

Some things have changed since Tamara wrote this piece… More than 40 states, including Illinois, Iowa and Arizona, are now “First Person Consent” states – meaning that your registered decision is binding, and your survivors – your next of kin – cannot override your decision. If you’re from Arizona, you can follow the links Tamara referenced above. If you’re from anywhere else in the United States, you can find where to register to become an organ donor at www.DonateLife.net – if you haven’t done it, think about doing it today.

And, you can find more about Tamara, and about her daughter, Ava, at Tamara’s blog at www.WhereThereIsLife.com

I have been changed for good...

I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you

Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I've been changed for the better?
But because I knew you
I have been changed for good

It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You'll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By loving me so...

Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I've been changed for the better?
But because I knew you

Because I knew you

I have been changed for good *

One of them lived in New York, one lived in Iowa – they did not know each other, and they never knew the impact they would have on one another’s lives… Two moms sang these lyrics to their baby boys…One mom was losing her boy, Jake, when she sang it to him. The other mom sang it to her boy, Beckham, shortly after he received a new heart. Eventually, she would learn that he received Jake’s heart…

I will never know the pain of losing my child like Jake’s mom knows – and I will never know the joy in knowing my child now has a chance to live like Beckham’s mom knows, though my mom knows. I do know the pain in understanding that there is a family grieving out there over insurmountable loss – and I always hope that there is at least some comfort in knowing the gifts and the joy they’ve given others… I also know, as a recipient, the feeling of awe that fills us when we think that some person and some family has given us a gift like this – given us life – given us a strong heart or given us breath…

This beautiful video slide show has several pictures of Jake and his family. The accompanying music is Jake’s mom singing the song above, “For good…”:

Jake’s mom sang this song to Jake and Beckham, and to all of us, at the opening ceremonies at the U.S. Transplant Games in Madison, Wisconsin, on July 31st, 2010.

At the games in Madison, Jake’s mom, Holly, also met the boy who has Jake’s heart – Beckham. The pictures below show the first time Holly held Beckham:

   

Above is the Scadlock family, with their son Beckham – next to the Campbell family. If you’d like to read a little more about them, here are links to stories in The Ithaca Journal, and The NKF Transplant Games website, and editorials in the Press-Citizen and CNBC.

When I look in the mirror – when I look at Laura – when I look at all that is beautiful in my life; I feel Kari’s smile all around me… I’m quite certain that when Beckham’s mom and dad look at him – when they look at all that is beautiful in his life; they will feel Jake’s smile…

* Excerpted from “For Good” by Stephen Schwartz for the musical “Wicked” (with one tiny change…)

Race for Chase

OK, I’m a day late and a dollar short again – but please check out this little news video above that appeared on ABC in Michigan a few weeks ago…

On Saturday, June 12, three brothers and a Mom and Dad and several friends and supporters, rallied over a hundred others to run for a brother and a son they lost just over seven years ago – a brother and son who is missed dearly, and one who saved seven lives after he passed away… I have a few friends who ran with them – both of them have new livers – and I’m reasonably sure that Chase’s heart was there…

I kinda got my butt chewed by my princess because we should have been at that race. We attended our annual Printer’s Row Lit Fair in our neighborhood, which Laura looks forward to every year – so I didn’t bring up the “Race for Chase”… Then I was not-so-subtly advised that she would have been happy to skip the fair. So, we will plan on being there next year…

Since losing Chase seven years ago, the Coleman family has become dedicated to raising awareness about organ donation. Lon, Trevor and Brandon generate excitement about donation through their plans to run triathlons in all 50 states in memory of their brother.

I have the opportunity to think of Chase and his family quite often. In the winter, it’s still dark outside when I wake up – I check my email & surf the web for a minute, and this is what I see when I look out of our window…

By the time I take my shower and start doing all of my medical checks, it’s light outside – and the picture in my window almost magically turns into this…

Though breathing with her beautiful lungs is enough – I surround myself with reminders of Kari and her family and friends – and this little work of art is just one more of them… But seeing it come to life in the light reminds me of more than Kari. It was crafted by Chase’s Dad, Buck, and these photos do not do his work justice… When I look at it I also see Chase and his Dad and his family… And I realize what Chase and Kari have done for me and for so many others.

We all met at a Chicago Triathlon a few years ago. A few days after spending the better part of a day with Chase’s Mom & Dad, Nancy & Buck, Buck asked me for a digital copy of my favorite picture of Kari – I didn’t know what he was going to do, but I obliged. With two actually – because I have two favorite pictures. Not too many weeks later – my lithopanes of Kari showed up in the mail.

I’d exchanged a number of emails with Buck – and then we met at the triathlon – I guess he knew me well enough that if anything as beautiful as the lithopanes he’d made of Kari came into my hands, I would immediately send them to Kari’s Mom & Dad. So, instead of receiving two lithopanes in the mail, I received four – he made a duplicate set for me to send to them. That’s Chase’s Dad. That’s the kind of people they are…

I’ve posted about Chase and his brothers, Lon, Trevor and Brandon in the past in posts titled, “Swim, Bike, Run, Chase…” and “Buck & Nancy’s boys… Chase’s brothers.” And “Trying for Life.” And you can read a little more about them at their Tri-for-Life Triathlon Team website.

If you would like Buck to make you a lithopane from a picture of someone you love, he makes them for a very reasonable price – you can get in touch with him through his website www.familytraditionwwp.com, or link to his lithopanes page…

And if you get a chance next June, and you feel like heading up to Mid-Michigan for a wonderful cause – Join us at the Race for Chase…

What Does Organ Donation Mean to You?

Sometime in 2004, Gift of Hope asked me if I wanted to be one of the pictures on their 2005 calendar… Well, duh… I guess they probably knew that they didn’t have to ask – they just needed to tell me where to show up and what to wear… They scheduled my photo shoot and told me that my shoot was going to be right after they did a photo shoot of a donor wife… I asked them if I could show up early so that I could meet that donor wife. I wanted to give her my perspective of what she and her husband and family have done for someone else – I wanted to give her an idea of what it’s like to receive a gift like they’ve given… It’s one of the things I do, whenever I have the opportunity…

The weather didn’t cooperate – our photo shoots were rescheduled two or three times – and finally scheduled in a way that I couldn’t simply drop in on hers… So one day we just met after work.

That day I learned about Jay, and about Jay’s kidney recipient, Julie – and about her passion for spreading the word about organ donation… She learned about Kari, and my similar passion for spreading the word about organ donation and telling others about Kari – and my enthusiasm about just being able to breathe! We connected – and somewhere between the two of us and Gift of Hope, we decided we would be a good team speaking together about organ donation, from the donor family and recipient perspectives… We are a good team – in 2005, Gift of Hope presented both of us with their “Echo of Life Award” for what we’ve done together.

On New Year’s Day, she represented Gift of Hope on the Donate Life Float in the Rose Parade. I was so tickled that she was selected – I got to ride the year before… She’s done so many wonderful things to promote organ donation. After she lost someone so very precious to her, she’s done so many wonderful things to help people like me get the gifts we need to stay on this planet a while longer. I’m always in awe of donor families – and they amaze me when they stand up next to us, and help us tell others just how special and important organ donation is. She is one of those people who constantly amazes me…

She is Anne Gulotta… Scott and his posse over at Donate Life Illinois just produced a beautiful video about Annie and Jay and their kids, Elizabeth and J.R. titled “What Does Organ Donation Mean to You?”… Please watch it:

They also produced a second video titled, “Thank You – A Tribute to Organ Donation”… It’s a video of a song that Anne’s son J.R. wrote – it turned out pretty awesome as well: