Revive Hope

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.

Mom-Moo

Monday was my mom's birthday!  Happy Birthday Mom - a.k.a Mom-moo.  I'm sure some people reading today have mommies who have been through jungles and up mountains doing everything imaginable to make it in this life.  Some of those mom's have been featured on Revive Hope like Emily's Mom and  Chase's Mom and Ted's Mom and Steve's Mom who he says he should "call more often."  Today wanted to tell you a little bit about my mom but this is of course only a tiny glimpse of her and me and all that she is...

Below are excerpts from a letter I sent to my mom only 8 months after my transplant on Valentine's day - a day that is celebrated with the symbol of the heart.  It perfectly describes the jungle she went through to help me stay alive before the transplant and after.  She is my hero.   

"You are remarkable but what you have done this past year is the biggest victory of your life so far.  Everyone that hears my story expresses how hard it must have been for you and dad-doo to watch a child through such an ordeal.  I think in some ways, what you saw was harder than my fight.  Only because I had the help of modern medicine to get me through, whereas, all you had was your inner strength and faith, and probably Rachel and Andrew too (my siblings)."

"You never gave up on me and you never doubted me even though I told you that I thought you'd have to bury me.  Now, you give me reasons to go on and you give me so much to look forward to.  And, you have more energy than any mom I know!"

"I miss you every day but have gotten better about not tearing up every time I look in the guest bedroom (where mom stayed when caring for me).  So many of my memories in life have you in them.  I'll never forget when I got home from the hospital to the cheering crowd of neighbors with balloons and banners welcoming me in.  Not to mention my house which sparkled because you had spent hours disinfecting and cleaning to make sure that I was safe and could start off on a healthy foot with my weak immune system." 

"You raised me with the knowledge, confidence and resources to get through challenges in life and I think you succeeded since I'm doing so well today.  You did your part as a parent both in raising me to fight and in being there to care for me in my sickest day." 

"Family is life and without it, there is nothing else."

Mom, without you there would be no reason for me to keep on going and no reason for me to write today. 

P.S.  Peas and Carrots and Love Always

Jade

When I count my many blessings, I include my dear friend Lizzie who is one of the reasons I kept on fighting even when it was tough.  Believe it or not, I have some wonderful memories of being in the hospital because of the warm visits from Lizzie.  She’d tell me about her parents building a new home and what was new in celebrity gossip.  She kept our group of close friends informed about my progress every step of the way, which was a wonderful relief to me.  After all, I was too exhausted to tell the story over and over again and relied so much on her positive attitude to comfort all of the   other people I love and she loved – all of the people that were friends but they were really almost family. 

 The few times I did sleep in the hospital I’d dream about her and me going to that new house of her parents and swimming in their pool.  I’d dream about us as mothers, playing together with our children in the park. 

 

   

She knew everything about my past and there I was, dreaming and hoping for a future, wondering if I would make it to those moments.  Life’s moments I call them…such as Lizzie’s wedding which was only 4 months from that time.  I told her “I will be in your wedding, mark my word.”  Sure enough, I made it to that day and started realizing that those dreams I had were now my reality. 

Lizzie mentored me during my entire recovery process, listening to everything from the detailed medical jargon to the emotions I had about my donor and ultimately she encouraged me to write to Chloe’s family just before their first holiday season without her.  Since then a few letters have been exchanged, each pouring a little bit of light onto  the window of life that we look through.  I imagine that their window is a little foggy since their loss and mine sparkles every time I hear from them and learn a little bit more about my brave Chloe.     In their last note they said that Chloe was adopted from Guatemala.  Ironically enough, Lizzie’s family has ties to this country since they have done mission work there for many years.  It’s funny how things cross over in life – Lizzie’s connection to me and now to Chloe’s family who had at one time long ago, ventured to Guatemala for their little girl.

 

Last night I met Lizzie for one of our typical four hour dinners with endless talking about topics that even the most seasoned conversationalist would have a hard time following.  Around my neck was a beautiful heart shaped necklace from Lizzie, made out of Guatemalan Jadeite Jade which is considered sacred to Mayan culture.  It is only produced in two countries and is as unique and as beautiful as I know in my heart, Chloe was. 

 

  

A card accompanied the necklace with a trademark stating:  “Jade…a treasure from the past…an asset for your future.”  Could they have summed it up any better?  Chloe’s heart from Guatemala is most certainly an asset for my future.  And did you know, the more you touch Jade and wear it next to your skin (heart), the more beautiful it becomes?

 

 

(Photo 1 - Melissa & Lizzie at her marriage to Beau, Photo 2 - Lizzie & Beau in Guatemala, Photo 3 - Jade necklace from Guatemala)

 

  

Iowans, and half-Iowans in Pasadena...

Ted warned me about Michael & Tara – he said they are very special people… He didn’t tell me how special… They lost their precious 10-year-old daughter, Emily, a year and a half back – and Emily became a donor… And they became advocates of organ donation. Emily had a floragraph on our float* – way up at the top – near the tip of the tail – close to heaven… Laura and I don’t have children – but like Kari’s Dad & Mom, and Michael & Tara, I couldn’t fathom the pain of losing one… Kari and Emily, and their families, have touched so many lives…

Michael always seems positive and upbeat – like someone else I know… Tara confirmed that’s his standard attitude and she had a few good chats with Laura wondering how these two goofs they love can be this way all of the time… I got a note from Tara the other day – she said when Michael brings us up in conversation, he says “you know, Breathin’ Steven…” and it makes her smile… Thinking about them makes me smile too…

And I got to spend not-enough-time with Julie Stern and her family… Julie is from Iowa Donor Network, and though I didn’t know it at first – she was my first Iowa contact when I exchanged anonymous letters with Kari’s family… The initial letter that I sent through my hospital in Illinois, and the response Kari’s family sent months later – went through Julie. I learned of her when Kari’s family and I opted to fill out all of the paperwork and establish direct contact. That was when Julie said she was very happy for us – but that she would greatly miss reading the heartfelt letters that went back and forth…

I got to hug Julie years later and I’ve been with her at various speaking engagements Iowa Donor Network brought me to – and at several Iowa Donor Network galas… And I got to spend way-too-little time with her at the events surrounding the Rose Parade…

Finally, I stumbled across a journal posting from a lady I met the day Laura and I did our Family Circle rose dedication placements – her name is Virginia and here is some of the beginning of her entry:

We became members of the organ donor family ourselves, back in February 2002. That is when our son Caleb died. There is strength and healing in being among members of the organ donor family. Last January when I heard about the Donate Life float, I knew I wanted to be part of their team.

On the late December day we were scheduled to work, we got up early and piled on warm clothes. Even sunny California is cold at 5AM! And warehouses are always cold and damp, but when millions of dollars worth of flowers are at stake, you can bet the temperatures need to be cool or the flowers will wilt and die.

We fueled up on coffee and got acquainted with the staff and team-members while we waited to start our day on the job. As I stamped my feet to keep circulation going, I was grateful for the hot coffee warming my hands. Soon though, I was totally engrossed in the stories people shared.

These were not ordinary float volunteers.

They were organ donor families with stories to tell and hearts to heal.

There were about 75 volunteers on our 8-hour shift - they were either recipients of the gracious gift of an organ (or perhaps a cornea, skin, etc) or they were part of a family who had given such a gift. The Donate Life staff circulated and shared even more stories.

The hours flew by as we worked and listened to people spell out how organ donations changed lives in very personal and profound ways. There was lots of laughter but there were tears too. The stories unfolded, hugs were shared, and the float was built.

People who know me, know that I have more Iowa Hawkeye clothing than most alums (and a smattering of Iowa State and UNI shirts are among them…) I wear the colors specifically for the reason outlined in what followed in Virginia’s post:

One of the people I encountered was "Breathin' Steven" (Steve Ferkau).

"I'm from Iowa," I yelled, waving my hand and smiling at a volunteer sporting an Iowa Hawkeye sweatshirt and an Iowa jacket.

“Well, I’m half-Iowan” the stranger replied as he made a beeline toward me.

Before I knew it, I was wrapped in the warm embrace of a very grateful organ recipient. “My lungs are from Iowa,” he said with a laugh. “I’m from Chicago”

In moments Steve drew me into the story of how he re-gained his life all because of a sweet young woman from Iowa who became an organ donor.

We stood talking for a long time. Steve’s story was engaging. Being an organ recipient changed his life in more ways than most people imagine. There is a sense of guilt among recipients, a sense of not being worthy somehow. Fortunately Steve grew beyond that feeling and has found ways to put his new life to good use. He is making a huge difference in this world. (Read about Steve Ferkau's story at www.ClimbingForKari.org and read his blog at www.ReviveHope.com )

Virginia went on to post portions of my story in my website about Kari – and told her readers to visit my site and read about the amazing things I’ve done… She continued about the 1,000-plus dedicated roses to donors, and her experience at the parade a few days later:

The morning was cold and the crowd friendly. By the time the parade began, the sun was bright and it was a perfect story-book California day.

As we watched the exuberant marching bands and admired the beautiful floats, I thought about my mother. She would have enjoyed being there. This was an event my mother always longed to attend. I was glad to be there. I was there, in part, because of her. She planted that seed many years ago.

As the Donate Life float went by, I looked down and among the roses I saw my half-Iowan friend “Breathin’ Steven” waving at the crowd. I smiled and thought about my mother and Caleb. My smile grew bigger when I heard Faith Hill’s voice waft up to my ears. She was singing “There You’ll Be.” (See lyrics below). And there they were…

Faith Hill: “There You’ll Be” (chorus)

In my dreams
I'll always see you soar
Above the sky
In my heart
There will always be a place
For you for all my life
I'll keep a part
Of you with me
And everywhere I am
There you'll be
And everywhere I am
There you'll be

Thank you, Virginia… I won’t forget meeting you, or hearing about Caleb. And I’ll never forget being there with Michael, Tara and Julie either… I’ll always feel that being around other Iowans with my half-Iowan self is very special…

*photo of Emily’s floragraph by Scott Weersing

Coming Soon...

Check back on Friday to hear from me...and to read my post for this week! 

Grape jam...

If you haven’t seen it – check out Melissa’s post she wrote yesterday, with the beautiful pin… If you’ve already seen it – check it again.  I’ll wait right here… I’ve got time…

Melissa is embarking on an amazing journey that I’ve been on for the past 7+ years… She’s learning about the precious young girl who saved her life, Chloe…

It’s a special journey – and I’d like to live it over 100 times… Though I’d never want Kari’s or Chloe’s family and friends to live it over once… There is pain and grief involved for us too – though not nearly like their families and friends… And there is an incredible understanding of love and compassion when you receive a gift like Melissa and I have received… I hope Melissa’s journey is as amazing as mine has been…

I’m a little short this week – Laura and I are grieving the loss of someone special to us…

I lost my Auntie Gloria this week – we’re going to her visitation today and her funeral is tomorrow…

Aunt Gloria was diagnosed with cancer about 14 months ago – back then they told her she likely had a few months to live… She lived a lot longer… She really struggled through this past week – knowing Auntie Gloria, I have to imagine she wanted to be with Uncle John and her daughters just a little bit longer. She passed away in hospice care at home.

Her daughter Lori keeps her own blog, marimbaandice, and the past few weeks she has been posting about her Mom and keeping friends and family in the loop…

She adored her daughters, Annie & Lori – and their husbands, David & Steve… And she adored Uncle John… She made that so easy to see… And all of them adored her… She and Uncle John were married over 40 years – they had such a wonderful, easy banter together… There are just some people in the world who you can see how deeply they love one another – Uncle John and Aunt Gloria were two of those people… I hope I’m like them when I grow up.

When Auntie Gloria loved someone – when she cared about someone – you knew it loud and clear… The first time Laura took me to meet the relatives – Aunt Gloria made me feel like family… I always felt comfortable and loved around her…

We spent a number of summer weekends at their cottage – I learned how to water ski there – never on one ski – drank way too much water when they tried to teach me that!  But it was even more fun just sitting around chatting with Aunt Gloria and Uncle John, and Annie and Lori when they were up there with us…

A dozen years ago, they watched me get sicker and sicker – and they knew how sick I’d gotten when I was listed for a double lung transplant… And they rejoiced when Kari and her family saved my life (way before we knew it was Kari, but we still knew there was a special person and family out there somewhere…)  Lori told me that her Mom admired my fight – I hope I influenced her fight… I wanted so much for her to win… She won a lot more time than many expected – except me… I thought she’d win the whole battle. But still, she won all of our hearts…

Her daughters, Annie and Lori, have climbed in my Hustle teams – Lori is on my team again this year… Besides climbing for Kari, we’ll be climbing in memory of her Mom.

Welch’s has vineyards surrounding their cottage by Gravel Lake in Michigan – after the harvest, the locals are welcome to go pick up any of the concord grapes left… Almost every year, Aunt Gloria used to proudly present me with a few jars of grape jam – she knew how much I loved her grape jam… It was so good on toast, or on a PBJ, or chocolate chip cookies, or even on vanilla ice cream. Sometimes just on a spoon…

Auntie Gloria made the best grape jam…

Sweet 16

When I wrote to Chloe's family telling them about our decision to dedicate roses to Chloe on the Donate Life Float, I never expected to hear back from them - knowing that the pain of the holidays without her and another year turned, without her would weigh heavy on their hearts.  They are truly good people, not only for their gift but believe it or not, they wrote back!  I'm very lucky to know her name, hear their voices speak to me from the words on the page, telling me a little more about their beautiful daughter. 

What's more?  To make it even more special they gave up a memento of Chloe, and asked me to have it.  It's a silver heart pin which they assumed was given to Chloe by one of her many admirers.  This new treasure of mine will be worn over my heart on special days.    Days when I'm thinking of her more than usual...like when I'm able to physically Hustle up the Hancock with Steve with her heart.  I'll wear it when I celebrate my "heart" transplant anniversary and of course when my wedding anniversary -- five years this September!! - rolls around. 

And now, it's January so I'm wearing it today and every day this month.  Because her parents did tell me that her 16th birthday is in January.  This past weekend Dave and I went to Florida and thought that would be a good time to say, Happy Birthday Chole.  So we did, with the tide at our feet. 

  

There's nothing you can make that can't be made.
No one you can save that can't be saved.
Nothing you can do but you can learn how to be in time
It's easy.
All you need is love, all you need is love,
All you need is love, love, love is all you need.

Taking a breather...

I didn't post today - well, except for this...  I'll never forget last week - I'll never forget so many of the people I met...  The parade was awesome, but it wasn't about that...  It was the people.  I already miss them...  The pictures below ain't even an eighth of the people I met...

There are a few OPO and transplant professionals scattered among them - but most of the people below are recipients, donor family members, a future recipient, floragraph families or fellow float riders...  I've got stories to tell about a number of them, and pictures of many others - but I'm taking the easy way out today...

In a note to Kari's Mom, I mentioned to her that it was good that I have girlie lungs now so that I can blame the crying on something.  I'll admit, I cry a lot now - but I don't know if I could count the number of times my eyes were full of tears with these folks - sometimes in grief, most often in joy - but it was always good...  A long time ago I fell in love with Laura.  Not so long ago, I met Kari's family and friends...  Now this.  Beyond the first two - I don't know if anything can ever top this experience...

I knew them less than a week - and I could have spent the next year chatting with them.  (Laura would tell you that I can spend the next year chatting with anyone - but this was different...)  By the time I left, it felt like I'd known them forever.  The ride on the float was incredible, but it was the whole deal - the whole week...  The OneLegacy and other OPO folks were awesome - and the recipients and donor family members I met will be in my heart forever.  Maybe that's why it didn't hurt as much to leave as I thought it was going to - because that goofy song keeps playing over and over in my tiny mind - I've kept a part of all of them with me...

   

 

 

 

 

 

 

 

   

   

 

   

 

   

 

   

 

Parade Day!!!

I think it truly was the ride of a lifetime…

These pictures and videos are from my side of the float – we were sailing the port side of this ship… The other side was the “media side” that faced most of the cameras (for the benefit of those of you who didn’t see my mug on TV and began to doubt the story of my journey!!!) Here’s a blurry shot of us walking from our bus to the float on New Year’s Day morning – Number 16 is Kim, and that’s all of us ahead of her and around her… Here is video of us getting to the float on New Year’s morning:

Here’s me with the picture of Kari that they made for me. They made and framed photos of our donors, or in the case of donor family members, of the loved one they lost…

Here were the people to my right – left to right, this is Eric, Mel and Jose – in the back is Julie and Dave… Immediately to my right, out of the picture, was Denice…

Here were the people to my left – left to right this is Lauren and Debbie (with the camera…) You can’t see them, but behind Lauren and Debbie are Jim and Mandy and Bonnie… We were all on the off-camera side because they didn’t want us showing up the flowers…

We met a lot of people along the route, like these two very early in the parade… People who made a point of telling us that they signed – that they were organ donors… Here is some video of our ride:

It all happened so fast – we were in Pasadena for a week, but it went by in no time and went out with a bang… I met so many people who I would have liked to have spent years getting to know – we all touched each other’s lives in ways we’ll never forget… It was hard to leave all of them – but I know they’ll be in my heart forever…

I’ve got more stories to post – about shopping at Von’s before the parade – about so many of the people we met while we were there – about some of the amazing things that happened during the parade… This is an ongoing saga – but this little post covered much of the reason we were there – to ride a float!!!

Donate Life Float - Judging...

Laura and I are home now. I can’t believe how many beautiful people I met over the past week – I can’t believe I had to leave them. I wanted to stay with them forever. I know, in my heart, that they’ll be with me forever.

I had so many grand plans for picture taking, videoing and posting – well, that didn’t happen the way I imagined. Every day was overwhelming – more emotionally than physically (I’m breathing with beautiful, athlete’s lungs, I can do anything I want physically!!!) But I’d flop into bed exhausted and get ready for an early day the next day… But, I ain’t done yet – I believe that I will be posting quite a bit over the next week or so, beginning today.

Here is a picture of me with Bill. He drove this amazing creature! He sat in this little pocket in the side with no view of anything except a little of the pavement below. He was directed by another guy sitting in a similar pocket in the front, looking out of a screened-in hole in the front, right side of the float. Bill has been doing this for 18 years – he and the other guy work nearly on a psychic level to keep the float going where it needs to go. We all felt safe with him – but I kinda let him down… I promised him I would bring him a donut in the morning and I forgot. He forgave me.

Here are two videos – the first one is a few minutes long and shows us getting ready for judging… It’s a “dress rehearsal” and we wear what we wear at the parade, and do and act in whatever fashion we’ll be acting during the actual parade:

Here is the second one – this is during the actual judging. (I apologize for the weird metalic sound, it's not on the original and may be due to the YouTube conversion...) Laura took both of these and you can hear her supplying some narration… It’s a little long, but it’s special – and you can hear our little group erupt when the judging is over. Please forgive some of the jumpy filming – Laura was trying to video and take still shots at the same time. What you cannot see is that we’re waving at quite a crowd of Donate Life people sitting before us – and the guy Laura pans over to a few times is Bryan, who coordinates this entire event for us:

Bill, our float driver, also said we would get bored silly of the song blasting in our ears by about the fifth time… Eighteen years of experience apparently hasn’t crossed his path with the likes of me… Throughout the five miles, probably for about 3+ hours, we listened to Faith Hill’s “There you’ll be” over and over and over and over… Here is the chorus:

Faith Hill: “There you’ll be” chorus

In my dreams
I'll always see you soar
Above the sky
In my heart
There will always be a place
For you for all my life
I'll keep a part
Of you with me
And everywhere I am
There you'll be
And everywhere I am
There you'll be

Bill was wrong. Fifty feet from the end of the parade route – surrounded by all of these incredible people – and waving to over a million spectators – “And everywhere I am, there you’ll be” still made me well up… It did the first time I heard it on our local country station – it did after a few hundred times driving slowly down Colorado Boulevard… It’s how I feel every single day – I can feel her… Everywhere I am, there she is. And I know it’s how so very many of us feel – whether we’ve received, or given… I met so many beautiful people over this past week who feel this way too…

Over the next few weeks – I promise I will post about many of the other amazing donor family members, and recipients I met this past week… In the meanwhile – Here is a picture of all of the float riders taken by our official photographer (and awesome guy) Scott Weersing:

Epilogue:  The Donate Life Float received the "Queen's Trophy" for the best use of roses.  We're all very proud of that and I know that Laurie, from OneLegacy, is thrilled.  There were over 1,000 roses dedicated to donors from all over the country on her Family Circle Garden in the beautiful, golden stars leading the float including flowers there for Kari, Chloe and Chase.  Laurie is a donor sister, and though this float and our "Queen's Trophy" means so much to so many - I think it has a little deeper meaning for her.  Congratulations, Laurie - and everyone who helped.