By Bob Aronson
This is a story about a remarkable woman, her family and her incredible spirit. It is a story that has no ending because it is still unfolding. It is a story that is guaranteed to make you
experience every possible emotion. It is the story of Claire Connelly of San Diego, California. A divorced mom of three — Sara, Pete and Paul Neves. Even her name has a story. When she was divorced she took her original name Connelly back because so many who held the name had died and she wanted to extend its life. That’s Claire, she is all about life and living.
My first contact with her was by email where she goes by the name “Pete’s mom RIP.” That alone tells you a little about her and about a son who is no longer with us. But that’s only a fraction of the full story, a story that is bound to make you smile, cry and then smile again. It was a difficult story to write because there is so much to tell and so little space in which to do it.
“The Agony and the Ecstasy” was a 1965 film about the great artist Michelangelo. That title came immediately to mind after speaking with Claire for the first time. She has gone through incredible agony and it lives on, but her actions have also allowed her and others some ecstasy, much of which is still to be experienced.
I’ve only had email, text and phone contact with Claire, but it is easy to see that she is a vibrant, fun, upbeat woman who loves life, but has suffered losses few could survive and maintain their sanity. Most importantly, Claire Connelly has given life in more ways than one. She is an absolutely remarkable woman who willingly shares her story so that others may benefit. Prior to our interview Claire warned me, “I’m a crier,” she said. After the interview my tears flowed with hers.
Pete was Claire’s middle child. She speaks of him with intense love and pride. He was a model child, neat, organized and truly gifted. When we talked
she described the young boy who would select what he wanted to wear to school before he went to bed at night. As he grew up he decided that his life’s goal was to become a U.S. Army Ranger.
The U.S. Army Rangers are a very tough outfit. Few who apply for Ranger
training make it through the program that’s been called the “toughest combat course in the United States.” Pete made it through with flying colors and got into Special Forces, but a back injury ended his career. Disappointed, but still wanting to stay in the Army Ranger Family and connect with other Rangers he returned home and started a U.S. Army Ranger website where he sold Ranger T-shirts, caps and other items.
When the second Iraq War started Pete signed up as a contract soldier, his Ranger instincts were still alive and he wanted to help, but despite his excellent physical condition he found himself weakening. He could no longer make long marches or sustain extended
periods of physical activity. Something was wrong. He returned to the U.S. and was diagnosed with fourth-stage Medullary thyroid cancer. Pete was treated at the M.D. Anderson cancer center, but without success and his condition slowly worsened. Claire, in tears when she talks about his hospitalization and upbeat attitude said, “The worst thing he could say was, “Mom, I’m not having a good day.” He never complained, he soldiered on. He was in the battle of and for his life, but the odds were just too great and Pete succumbed on October 13, 2008 at the age of 46 leaving a wife and daughter behind. Claire remembers Pete every minute of every day. Thoughout her home she has Pete memorabilia and each year on the anniversary of his death she finds a new way to honor him, like going to the beach and tossing something into the ocean for him.
Needless to say Pete’s passing was a devastating blow for Claire, but she’s a strong woman
and let her memories of Pete sustain her. Claire went on with her life, but never forgetting October 13. As the years passed she mourned, but enjoyed contact with her remaining children Paul and Sara. Then on an otherwise happy day, Claire got the phone call no parent ever wants to receive. “Come to Sacramento right away,” said a hospital nurse who explained that Paul had suffered a massive stroke. He was found on the sidewalk by his house unconscious. It was estimated he had been there for three hours or more before he was discovered and now a web of wires and tubing connected him to the technology that kept his heart beating and his lungs working. Claire remembers that phone conversation as though it took place an hour ago, “When I got the call that my other son, Paul, was on life support and could I please come up to Sacramento to sign the necessary papers for his organ donations, I put the phone down and let out screams I didn’t know I had inside of me.”
While he was rushed to the hospital there was nothing that could be done; the time between the stroke and his being found was just too long. Claire hurried to be near her son, her “Baby” as she called him.
When Claire arrived at the hospital she was told that Paul showed no brain activity. He was what is commonly known as “brain dead.” Shortly after she was approached by the Organ Procurement Organization and told that Paul’s driver’s license indicated he was an organ donor. Claire, also an organ donor, immediately agreed to honor Paul’s wishes. She was informed that he was in such good physical condition that all organs that were transplantable could be donated, but first they had to find recipients. That meant Paul would be kept on life support for several more days. Days in which Claire sat and stared at her immobilized son, tubes and wires still attached still breathing and warm to the touch of a mother’s hand.
Finally she was told that recipients had been found and it was time to take Paul off of life support. There cannot be a more terrifying moment for a parent, than to be called upon to end the life of an offspring. What pained her most is that they never got to say goodbye. “When Pete died,” she said, “it was terribly sad but we had a lot of time to talk and say goodbye. With Paul it was so sudden, “I never got to say goodbye,” she sobbed. But the worst part of the story is that Paul’s passing on October 13, 2013 was exactly five years to the day after Pete who died October 13, 2008.
Claire is still stunned by the fact that her two boys died exactly five years apart and she still grieves. Parents are not supposed to outlive their children, but there is a bright spot in this story and it is the lives saved by the donation of Paul’s heart, liver, lungs and kidneys.
For a while after Paul’s passing Claire waited to see if she would be contacted by recipients of Paul’s organs, but nothing came so Claire being Claire, decided to write to them. Her letters were passed on by the local Organ Procurement Organization (OPO). Here’s what she wrote.
October 16, 2013
Please know that your recent gift of an organ came from my son who died suddenly, leaving all of us bereft, were it not for his generosity in wanting to be an organ donor at the end of his life, which we all hoped would be many years down the road, at least well after mine. The last thing he wanted was to be hooked up to any machine, but that is exactly what happened. We feel that because that was necessary to keep his organs going to fulfill his wish of organ donation, he would have approved being monitored by banks of machines, and being poked and prodded endlessly for three days in order for that to happen.
He was a give-you-the-shirt-off-his-back kind of guy who loved the great outdoors, loved to fish, camp and ride his wave runner, and was thrilled at the sight of any wildlife, be it raccoon, elk, mountain lion or bear. He loved Yellowstone National Park best of all. He cherished life and we are comforted by the fact that parts of him will live on and our prayer is that you take good care of and appreciate what you have been given – a central piece of him – his ultimate gift. The fact that he was able to donate so many of his organs speaks to the fact that our family is blessed with good genes and we hope and pray that your new organ will serve you well, with every beat of his heart and every breath that you take, and that you think kindly of him from time to time. I can assure you that he, as well as you, are in our thoughts and prayers every day.
Perhaps one day we can share our thoughts in person, if you are willing. Our family is hoping for that possibility and look forward to the day when that can happen.
The mother of the donor.
Again she waited. Months went by and then one day, a letter arrived (edited to protect the identity of the recipient).
Dear Mother of the donor,
Your heartfelt letter was received at a perfect time of my life. Before I continue any further allow me express my sincere thank you to the mother and family of my heart donor. I would also like to thank the young man who is responsible for my being alive today.
It is because of you and of course your loving son that I am alive. Please know that each time I feel my heart beat I think of your son. It is amazing to me that your son (my donor) and I have so much in common. I was blessed with receiving a new heart. I will never take that for granted. Please be assured that I am taking very good care of myself and that I am getting emotionally and physically stronger and stronger as each day passes. I look forward to meeting with you one day and am overwhelmed with the thought of that meeting.
God bless you and I’m looking forward to talking with you soon.”
The recipient has asked that his identity not be revealed.
Claire is excited as well because the meeting date has been set for December 12, not long from now. While it is not unusual for donor families to go public with their stories, it is also not common, but Claire Connelly is not your average person. I asked her why sheagreed to an interview and to have me publish a blog. Here’s what she said.
“My purpose in telling my story, and I believe I am speaking not only for myself but for other donor families as well, is to convince even one organ recipient to take a moment out of their busy day to send a word of thanks to the donor family. If I can do that, then this effort would have been worthwhile.
For the organ recipients who feel they don’t want to remind the donor families of their loss, my wish is that they begin thinking of it in a new way. Most donor families are ALREADY still feeling that loss, and it might give them some comfort to know that their loved ones hearts are still beating, or their eyes are still taking in the wonders of this world, or their lungs are being appreciated with every breath you take.
From this donor mother’s perspective, perhaps they are wondering why the gift of life that their family member provided has not moved the recipient enough to say thank you and to let that donor family know that you appreciate the generosity it took for their loved one to sign that donor card to leave their organs in such a profound way to total strangers. They are left to wonder if you truly appreciate the generosity it took for that family to agree to a procedure with which they may not totally agree, and to go to the hospital every day to keep a vigil for the brain-dead body of their family member, while potential organ recipients are researched, measured, weighed, matched up, scrutinized and finally, all scheduled to be prepped for the exact same moment. While it was heart-wrenching to see my son for the last time as he was wheeled out of his room to the O.R. just down the hall for the recovery of his organs, it was so rewarding to hear directly from his heart recipient how much he appreciated the gift and to hear to what lengths he goes to protect it, to take care of it, to monitor it, to faithfully keep his checkup appointments, etc. I can only say it did this mother’s heart good to KNOW FOR SURE that Paul’s heart beats on, is appreciated, and cared for.
Paul’s heart recipient and I have agreed and are looking forward to meeting in person on December 12 when he can thank me in person and I can feel and hear Paul’s heart beating within his recipient’s chest. We have already shared photos and he calls me, “Mom.” I don’t want him to think of Paul as “some dead guy”, but as the generous fabulous person he was. Toward that end, there are things of Paul’s that I want to give to him, and things about Paul that I want to tell him. Nobody, except another donor family member, could even begin to imagine what this experience will be like. Will it be emotional? Certainly. Would I miss it for the world? Not a chance. The willingness of his heart recipient to contact me is what will make this possible. While it won’t bring Paul back, it will go a LONG LONG WAY to give me the peace of mind in knowing what a difference he has been able to make in this man’s life and that he appreciates it each and every day and that he is taking every measure and precaution with Paul’s heart. And THAT does this mother’s heart good
While I have not heard from the recipients of Paul’s two lungs, two kidneys, nor liver, I still wonder about them, but that is outweighed by knowing, at least, that his heart is still beating within this kind man’s chest and who cared enough to write a thank you letter.”
Claire Connelly is a unique person who told this story to help others. I know she’d like to hear your thoughts and you can send them to her through my email address email@example.com and I will pass them on.
And one more thing. If you are an organ donor, that’s great. If you aren’t, register at donatelife dot net and get your family and friends to do the same.
Dr. Seuss said it best, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”
Thank you Claire and most of all, thank you Paul for your gifts of life.
*Note. Bob Aronson the author of this blog is a 2007 heart transplant recipient. He is the founder of Facebook’s Organ Transplant Initiative a donor/recipient/caregiver/donor family and friends support group of well over 4,000 members.
Check the index on this blog for other posts that may be of interest to you, there are nearly 300 of them on almost as many topics related to transplantation/donation issues.
If you are a member of Organ Transplant Initiative (OTI) on Facebook or if you become one at any time (it’s ok to belong to any number of other similar groups at the same time) we invite you to take advantage of this exclusive offer. It is a challenge to get people to work harder on increasing organ donation. Too many people are dying while waiting.
If you will arrange for a two speaking dates to an audience of your choice on the subject of organ/donation transplantation, I will provide you with a factual, hard hitting, convincing PowerPoint presentation (one you can edit to fit your own style) visuals included at no charge. I will also offer you professional advice on getting and keeping the attention of an audience, motivating them to do what you want them to do, how to use your voice properly, how to breathe, body language and so much more. but, the coaching offer only stands if you use our presentation (we will very carefully research each fact offered). As a stand-alone the coaching will apply to many other areas of your life and it’s up to you how you use it.
All you have to do is volunteer to make two presentations during 2012 about donation/transplantation to the audience of your choice; family, service club, dinner group, church group, as the featured speaker at a banquet or anywhere else. You will be responsible for seeking out and securing those speaking dates. I can’t promise that I can give you perfection, but in a few short minutes or hours I can help you become a more confident, powerful and convincing speaker. All you have to do is send me a personal email at firstname.lastname@example.org and say, “I’ll do it” and we can work toward arranging the proper communication vehicle to help refine your skills. If you just want the presentation and no help from me…that’s fine too. You may use the presentation I write without permission as long as you give attribution to the Organ Transplant Initiative for having provided you with some assistance. You do not need to mention my name.
I know public speaking can scare the bejeebers out of people but for many there is good sound advice that can help you through that. One thing for sure the advice you get will help you in many ways that go well beyond talking about organ donation. The skills you learn will be applicable in job interviews, courtroom and/or regulatory agency testimony, media interviews, sales presentations, regular conversation, and even giving a talk to co-workers about any subject (sometimes it even works with teenagers and spouses).
I spent all of my working life in communications including owning a firm with clients around the globe many of them in the Fortune 50 of top corporations. I don’t know why the good lord gave me this modicum of talent but I think he’d like me to share it to help save some lives, hence this offer.
I am already working on developing a slide show and hope to finish it within a month or two. Once done I will share it with you and we can begin the process. I’m hoping that eventually this will turn into a sort of national OTI speakers bureau with resources in every state and a message that is powerful, consistent and heartfelt.
I hope many of you will find it in your hearts to commit to this. With under 50% of Americans signed up to be organ donors there is ample opportunity to make a difference. Please become part of it and I promise I will do everything I can to make you successful because if that happens, we are going to save a lot of lives.
You may comment in the space provided or email your thoughts to me at email@example.com. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.
Please view our two brand new video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.
Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.