Revive Hope

Happy Thanksgiving...

It’s Thanksgiving and I’m thankful for another year…

I know a lot of people take another year for granted – and I think that’s OK. But I don’t take it for granted, and I don’t think I ever have – and I hope I never do… I knew a long, long time ago that I was not destined to be on this beautiful planet as long as most people – and I’ve been here a lot longer than I’d ever imagined. And I’ve been liking it.

Sometimes I look at little ones struggling, or adults struggling, and I feel that it’s not fair – that life is not treating them fairly – and I wish their lives were so much better… Yet, I struggled too – and though there were plenty of struggles, I would not trade a day of my life with any “normal” healthy person. I struggled, but sometimes I think that gave me a greater appreciation for life. And all of my life I’ve been surrounded by such incredible love. I’ve been handed so many reasons to keep on living and keep on struggling. So many of us are handed those reasons and we may not always see them – today is a good day to recognize them.

I’m not struggling nearly as much any more – and that usually just doesn’t happen. When you have a chronic illness like mine, you so often get worse, then you get worser, and then you die. I didn’t. And after going downhill for almost 40 years, the gift I’ve been given freakin’ blows my mind. It’s been over eight years and I think about it constantly.

I’m thankful for my family and my old friends and my Laura – the family and friends who have surrounded me with the love I mentioned earlier… The family and friends who I don’t spend nearly enough time with. I’m thankful for my new friends, and friends I haven't met yet. I’ve spent time with so many of Kari’s friends this year – they are all so very precious to me and I adore all of them. I have so many friends who help people like me. I got to hug donorcycle this year. I met several incredible donor families this year and heard about the loved one they lost, and I shared my donor with them – and I hope I let them know how we feel about the heroes in our lives…

In the morning, we’ll watch them set up the Chicago Thanksgiving Parade – it’s set up on the streets surrounding our building. Several friends from our building will go to Starbucks, wander around a bit, then I’ll make breakfast for all of us. In the afternoon, I’ll be with my sisters. (Mom’s in Arizona…) I’ll get turkey and stuffing and cranberries. I’ll eat more pumpkin pie than I should, but I’ll take more insulin. And all day long, I’ll breathe. And I’ll think about that – and about her…

I know that it goes without saying, particularly to anyone who knows me, but I’m thankful for a beautiful girl from Iowa, and for her family. I’m thankful for Kari.

More on the Spirit of Giving

What have you given? It’s very easy at this time of year to find ways to give back to others. Just this week I was grocery shopping and noticed the “bell ringer” from the Salvation Army. Because I was in a hurry, I ran past her while trying to hide in my coat hood. Upon entering the store, I noticed a pile of toys being collected for a toy drive. Then, I started to think. Why run past these opportunities? Suddenly the irony hit me. Here I was buying food for myself, knowing that others don’t have any. And, I was in the perfect situation to fix that problem by just dropping some change into the “bell ringers” red kettle.

I continued with my shopping -- thinking more and more about the holidays, the crowded store, the sold out pumpkin filling. Naturally, I started thinking more about Chloe’s family and their deep sadness, how it must be intensified when her chair at the Thanksgiving table is empty. How every good moment in their life is different now because she’s not there. I walked out of the store and this time, when I passed the bell ringer, I looked at her big smile, dropped in some change and smiled back thinking about the frozen peas that will now warm a hungry belly. But, a more meaningful gift was waiting for me at my door step when I arrived home.

In an attempt to do our best to remind Chloe’s family how deeply grateful we are for their gift and for Chloe’s life, together with our friends, we donated 14 roses to represent her 14 years of life to the Donate Life Float that has been talked about on this blog in Light bulb, Light bulb, pearls, pearls, Stars of Life Twinkle Part I and Part II, Who are They.

They will be lovingly placed, each with a personal message, in the Family Circle Rose Garden - a living memorial atop the float. Steve, if you see the roses when you are there, blow them kisses from Chicago. The package had a certificate acknowledging the rose dedication and some other items in it, which I will forward onto her family. I can never heal their pain but hope that this gesture will in some VERY small way, help them through this time of year. Maybe it will give them peace that the life she gave me is worthy of her memory.

Everyone asks what they can do to help me and I simply say, Just Remember. Remember Chloe. Remember to register to be an Organ Donor. Remember to act on the Spirit of Giving. It’s so easy.

Salvation Army: Donations provide Christmas dinners, clothing, and toys for families in need. Financial assistance also helps with basic necessities, along with seasonal aid.

Donate Life Float Family Circle: The Family Circle reserves donated funds to create exciting feature projects dedicated to support and honor families touched by donation.

The Spirit of Giving-Part I

We all know the story called The Gift of the Magi, but let me give a little synopsis, from Wikipedia for those of our readers who have not heard of the story, or who have just forgotten.

Jim and Della Dellingham are a young couple who are very much in love with each other, but can barely afford their one-room apartment opposite the elevated train due to their very bad economic condition. For Christmas, Della decides to buy Jim a chain for his prized pocket watch given to him by his father. To raise the funds, she has her prized long hair cut off and sold to make a wig. Meanwhile, Jim decides to sell his watch to buy Della a beautiful set of combs for her lovely, knee-length hair. Although each is disappointed to find the gift they chose rendered useless, each is pleased with the gift they received, because it represents the other's love for them.

The true unselfish love that the characters, Jim and Della, share is greater than their possessions.

Click here to read the entire The Gift of the Magi.

In the spirit of the Holidays let us remember this beautiful story and remember the importance of giving. Yes, presents are nice, but are they always necessary?  Especially now, in the turbulent economic struggle...think of those who need assistance.  Over the coming weeks we will provide you with ideas of giving and organizations who would appreciate financial, or volunteer support.

The first non-profit I'd like to introduce is the My Angel Foundation. As many of you know, this is the non-profit that sponsors Revive Hope.  My Angel Foundation is dedicated to inspiring hope through compassion, educating the community about the importance of organ and tissue donation, and supporting those touched by organ and tissue donation.

Ted Cochran is the President and founder of the foundation. He was blessed with a life saving kidney transplant almost two years ago. His mother not only gave him the gift of life once, but twice, by giving him one of her kidneys. After transplant, Ted knew that he wanted to pass on his gift by honoring his mother. Because of Ted's dream hundreds and hundreds of people in Iowa have been introduced to the importance of organ and tissue donation.  Please help his dream grow by donating monetarily or by becoming a volunteer.

 

Water...

I want to tip my hat to Scott over at “I am. Are you?” He let me debut my little video, then he posted a very nice follow-up, subtitled “It’s been a long time coming,” that made me feel very good.

And now, about the whole “water” thing… Laura and I (and Paul & Ruth & Sharon & half our freakin’ building) joined the health club that opened across the street from our building… I joined it mainly because I’d like to start swimming again – and get in better shape.

In my yoot, before I met Laura, I used to swim to try to clear my lungs. I would swim three or four times weekly – not any huge distance – maybe for 40-50 minutes. Right after a hospital “tune-up”, at my healthiest, I could swim three laps without resting (in a relatively small pool) before hauling myself out and sitting on the end of the pool coughing my guts out with everyone else around the pool wondering whether I had the plague. (Most of them came to know me and my cystic fibrosis and just made sure I was OK…) My health would quickly dwindle down to being able to swim two laps, where it stuck for maybe seven or eight months if I was lucky. Then I’d really start going downhill – I could only swim a lap, then a half-lap before I was coughing too much – then I’d check into the hospital for my next “tune up”… I did that for five or six years before I met Laura – I remember doing it, even though I really don’t remember ever being without Laura…

Back then, I was 115 pounds with very little body fat and a very strong core – my abdominal muscles were like steel from almost 40 years of coughing. I could haul my skinny fanny from the pool as if I weighed 10 pounds. Gradually, swimming became inconvenient and too difficult at times as I got sicker.

I’m back swimming – and boy am I not-so-much in shape! Where I could easily do two or three laps before a rest, I struggle with one – but I know I’ll build up. A pony-keg has replaced my six-pack and my upper body not nearly as strong because I haven’t had to cough like a maniac for over eight years now. And I’m 40 pounds heavier. Pulling that not-nearly-as-skinny fanny out of the water is a totally different experience. But I’ll get there…

I do like soaking in the hot-tub a little before and after. My co-worker and I have kinda decided that a public hot-tub is really just people soup, or people broth, so I don’t hang around in there too much…

Today, on the way out of the club – a trainer who takes care of the climbing wall saw my big Hawkeye coat and started busting my chops about Iowa beating Penn State and handing Joe Paterno his only loss in his final season. I don’t know nothing about football – I leave all that to the one who wears the pants in our relationship – but I did have the opportunity to pull out my wallet and explain to him why I’m wearing Hawkeye clothes. I think I left him a little drop-jawed.

I’ve only been there four times since it’s opened. I’ve only been swimming four times – and really not all that many combined laps yet!  But it’s not even the swimming… It’s walking out into the street that is amazing. Those first, full, deep, clean breaths of cool air in my beautiful lungs – I can’t even explain it – I can feel it in my toes and fingertips and my chest feels so open and clear. I think that, maybe, you’d need to live almost forty years with lousy lungs to understand this. Four times, before I got to the end of the block, my eyes were filling with tears…

I can feel her smile every day – but somehow, right then, it’s just a little brighter.

Who are they?

Matthew Bemis

Bud Collins

Kelly Kline

BJ Miller

Alexis Porta...

Who are they? They lived a full seven decades or only a matter of months. Many were students in high school or college. They hailed from 25 states, from as far away as Alaska, Hawaii, Massachusetts and Florida. And they all share two things in common: the decision to give life as organ, eye and tissue donors, and a tribute in the 2009 Rose Parade honoring their legacies that saved and healed more than 1,000 lives and give hope to countless others in need.

Together with Steve and other organ recipients they will ride on the float in the form of a Floragrpah which will be decorated by members of their family. Meet one organ donor who is a Star of Life.

Dustin Bauer

Organ, Eye and Tissue Donor
Age 22 ~ Lutherville, MD
Date of Donation: 3/12/08
Hospital: University of Maryland Medical Center

Eight weeks before 22-year-old Dustin Michael Bauer was set to graduate from Mount Saint Mary’s University with a double major in Sociology and Criminal Justice, he accidentally fell 15 feet from a landing in his apartment complex onto his head.

Dustin was a strong, healthy, athletic young man, but he never recovered from surgery. He was pronounced brain-dead on March 12, 2008. His parents, immediately understanding they could transform his passing into something positive, opted for organ donation. They donated his kidneys, liver, pancreas, corneas, and heart valves. Today, all of the recipients are reported to be doing very well with Dustin’s gifts.

Read more stories about other "Stars"!
*Information for this entry was obtaine at www.donatelifefloat.org

The Circle of Life - My Video...

Scott, over at “I am. Are you?” and Donate Life Illinois, has been producing a series of videos featuring Illinois residents with personal ties to organ donation. I’ve posted most of them here.

This particular video is one that I’m pretty proud of – because it’s about Kari, and about me, and about her gift to me. Scott titled it “Steve’s Organ Donation Story – The Circle of Life”

I get to speak to groups about organ donation, and about Kari. Much of what I said in this video is how I begin every talk… I “introduce” people to Kari – then I try to help them understand what she’s done for me. Much of it is on my little website. It means a lot to me that Scott and Donate Life Illinois have put this in a format that will last a long, long time... Longer than me... It’s important to me that I’m still telling people about Kari long after I’m not me anymore.

At around the 1:30 mark – I’m holding a piece of art called a “lithopane.”  I met a family like Kari's family – an incredible family who lost their precious son and brother, Chase – I wrote about them in a post titled, “Swim, Bike, Run, Chase…” Chase’s Dad, Buck, made that lithopane of Kari for me. He also surprised me with one for Kari’s Mom & Dad too… It’s something I’ll treasure for the rest of my life – and I know they will too.

I’ve led a pretty charmed life so far… Sure, there have been highs and lows. And some of the lows have been scary… But the highs have been beyond explanation – falling in love with Laura, having my life saved, learning about Kari and meeting her family and friends, even opening up a package from a guy named Buck with gifts, not only for me, but for Kari’s Mom & Dad… I’ve met so many people involved in helping give others life…

I hope I honor Kari with this little video – in my heart, I honor her with every breath.

This is what organ donation does for others. I hope you live a long, fruitful, happy life – and when you’re done – be someone’s hero.

Her Soul in the Sky

I've been in contact with my donor's family only through letters, however I do know that her organs were given through the Carolina Donor Services.  I found this out when the organization sent me a waiver asking me to release my personal contact information to them directly - which I did without hesitation.  If the time comes, we will do our best to receive well, always remembering their pain.  In life, you have to give well but you also have to receive well.  We will remind them that Chloe lives on and has given me a life back. A life that now involves long talks with college friends, family traditions still carried out with my presence, and last week - my first business trip since my transplant.  Ironically enough, we flew through Charlotte, NC - maybe close to her home?  It just so happened to be right around sunset and I think Chloe's soul was up there with me, dancing through the clouds with joy over the fact that her heart was back home.  It reminded me of the following bible verse:   Revelations 21:4-5  - "In eternity we will not need our earthly bodies: Former things will pass away, all things will be made new."

 

Seeing the great sky above Chloe's home state was a spiritual experience and I wondered, was her soul up there or was it back in high school, watching over her friends?  Maybe it's at home, snuggled up to keep her mother warm from the chill of her loss?  For now, I do not know but one thing is for sure, I will celebrate National Donor Sabbath this year which takes place 14-16, 2008. This celebration is an annual observance intended to raise awareness, through religious communities, of the urgent need for organ and tissue donation.  (This photo was taken from my seat in the airplane)

 

 

No matter your religious views, if you have been effected by organ donation or transplantation I hope you can relate to the following quote from Chaplain Joel De Fehr, Director, Pastoral Care, Integris Southwest Medical Center -

Transplantation isn't a rare or experimental procedure anymore, but it is still a miracle every time it happens. Obviously, it is a miracle of new life for those who are dying, but I believe it is also a miracle for those who give. Most of those who donate are doing so in the midst of profound sorrow and pain, and yet, they are still able to think of the needs of others and to give when all they feel is loss.

What can you do to help with this mission? Find out here!

THANK YOU!

I have not been the best at posting lately, and I'd like to apologize. I should be a more regular poster in the coming weeks as I wrap up fall semester! 

Anyways, I don't have a super long post today and I really won't be mentioning organ and tissue donation too much, but if you'd like more information click here.

I'd like to take today to say THANK YOU to all of our veterans. THANK YOU, for all the sacrifices you made so we can have the freedoms we so often take for granted!  THANK YOU, for the time you spent, away from your family and friends, to allow us to be with ours!

I know that we don't voice it enough, but THANK YOU! I know that we all have different opinions about Iraq, just like we did about the Gulf War, Vietnam, Korea, WWII, and WWI, but we should put our opinions aside today and say...THANK YOU. We should say THANK YOU, not just for today, but for yesterday and tomorrow!

Because of ALL our veterans (and current soldiers) we have freedom! Freedom to live, laugh, and love.  Freedom to enjoy life to it's fullest!

Becoming an advocate for organ and tissue donation, I've learned to never take life for granted.  I've learned to never forget to say "I love you!" I've learned to appreciate the small things too! Most of all I've learned that life is a precious gift!

So, don't forget to THANK the veterans you know, today and everyday.  Thank them for their sacrifices they made to allow you to appreciate your precious gift...LIFE!!

Stagehands...

Thursday, I spoke at a conference sponsored by Gift of Hope… It was a collaborative conference titled, “Connecting the Dots… Hospitals in Action.”

At these gatherings, we’re speaking to people who touch lives, and save lives… There were dozens of people from Gift of Hope there – and a few hundred people from hospitals all over Illinois and Indiana… People from ICUs, surgical and medical ICUs, ERs and trauma centers – a lot of nurses and chaplains – a lot of people who deal with families in crisis… They deal with families who will likely have the opportunity to donate…

At these conferences, they often have a donor family member and recipient telling their story… I had the honor of speaking with Tim Joos – a donor Dad who lost his precious daughter, Samantha, five years ago. I’ve partnered with Tim before and I posted about that back in July in a piece titled Samantha…

I think that, more often, Tim speaks to “regular” folks and students – his presentation is powerful… And after asking the question, “what would you do with your body?” he shows us what his beautiful, precious daughter wanted. And he showed this group how special it is to know some good came out of a heartbreaking tragedy.

There’s a part of me that knows that I should be telling “regular” people about Kari – but I tend to do that more on a one-on-one basis… I do that when I have the opportunity to start a conversation, or start small talk, that turns into much more than “small talk” when I find any lead in to tell them about Kari and the gift she gave me… Someone only has to ask, “Where ya from?!?” The answer always starts with, “Part of me is from Iowa…”

After Tim told them about Samantha – I got to tell them about Kari. I often start by reading Jenn’s poem – to give them an image of Kari through the eyes of one of her friends – just to set the mood, for both me and them… And then I tell them what she did for me, and how I feel about Kari and her family and friends… I hope that Tim and I show them why they do what they do…

These are people who work to save our lives…

So many of them are dealing with the painful side of organ donation – they’re caring for potential donors in trauma centers, ERs, ICUs, MICUs, SICUs… They may have just lost a patient – but they’re continuing to care for them because they know that person and their family may have the opportunity to save another life – or two, or three, or seven – and help countless others with tissue donation.

I haven’t met many nurses, or medical personnel, who don’t care deeply for the patients they watch over, or the families of those patients… I don’t know what it’s like to lose a patient – but I know it’s not easy. For so many of them – they only experience the dying and giving side of organ donation. I hope I showed some of them the receiving and living side of organ donation… I hope I showed them how amazing this gift truly is…

I have a lot of friends who have spent time on that side – my nurse Penny, who I adore, worked for Gift of Hope approaching donor families – my friend TC over at donorcycle did as well… TC wrote the most beautiful thing I’ve ever read about Kari, that also touched on the sometimes-complicated path to organ donation. TC came out to climb the Hancock with me last year… I’ll adore TC forever too.

For almost 40 years before my transplant, I’d spent so much time in hospitals – in my late teen years through most of my adult life, I spent 7 to 10 days once, sometimes twice yearly because of my cystic fibrosis for my “tune-ups” – along with a number of more critical stays… Over the years, those stays were at four major medical centers. I’ve been in emergency rooms, the ICU, the MICU, and regular rooms. And I’ve had so many nurses & doctors & therapists & techs & housekeepers take such good care of me… I wish I could find every single one and give them a hug and show them how alive I am now… And let them know that they had a hand in keeping me alive. I’m sure a lot of them, if they remember me at all, think I’m long gone. I’m not long gone – because of them.

I know I’m also “not long gone” because of Kari – and she is always on my mind… But they took care of me… They carried me to her door.

I can’t thank all of them because I can’t find all of them… But when I get to speak to a group like this – I’m thanking all of them vicariously through the group I’m talking to… And I’m thanking the group I’m talking to on behalf of all of the people who didn’t get the chance…

Here is a draft of my presentation (Word doc)...  When I get to speak to hospital and OPO folks, I usually slip this little thought into my presentation:

Take a look at her – isn’t she beautiful?!?! Well, take a look at my face now! These cheeks are a lot fatter than they once were – and a lot happier. I would not have “met” Kari if it weren’t for people like you… I think about that… I think about the people who took care of me for so many years – I also think about the people who took care of Kari, the people who tested, and kept her organs viable… The surgical teams who were with her – and with me… The people who tissue typed her kidneys… The folks who processed the mountains of paperwork... It’s just an incredible dance of life, brought to me by a beautiful girl, and an incredible family – and a group of dedicated and caring stagehands like so many of you…

We had the honor of speaking to a lot of stagehands on Thursday…

Sorry sorry sorry...

It's Thursday evening and my post is not up yet.  And I always like my posts up first thing Thursday morning...

I spent a wonderful day at a "Connect the dots" collaborative meeting sponsored by Gift of Hope - I was invited to speak along with Tim Joos...

Tomorrow I'll post about that, and why I find it so special to speak to groups like this...  But I hate the idea of missing my usual Thursday post so this is just a place holder...

(Melissa skipped yesterday -- she's at a conference in Florida...)