On Monday, April 21st, we celebrated Sarah’s first heart birthday! It’s incredible that it’s really been a whole year since she received her new heart.
Early in the afternoon, we had a visit from a news reporter that did a story about Sarah’s celebration. It was featured on the news that night, right during her party. We had to wait to watch it online later, but we were very happy with the story. She highlighted the journey, the importance of organ donation, the celebration, and our invitation to “pay it forward” for Sarah’s anonymous donor. It was good for me to remember emotions and events as I told the story again, to someone who hadn’t heard it before. Talking about Sarah’s donor’s family brought strong feelings of gratitude back to the surface again.
Our celebration was small and special with our family, Grandma and Grandpa Dixon, and some special friends. We appreciate everyone who came and celebrated with us, and those who celebrated on their own by “paying it forward for Sarah” that day, or during the week. We received many messages and a few phone calls congratulating her and wishing us a happy celebration. It’s so wonderful to still be in people’s thoughts and prayers. A whole year later, we still feel so much love and support from family, friends, and even strangers all over the world. Thank you to all of you.
The balloon release was definitely the highlight of the evening. (Although, we did enjoy all of Sarah’s favorite cookies, too!) After we passed out the balloons, Steve shared some feelings of gratitude and sweet words on behalf of our family. Then, after the countdown, we sent the balloons to heaven for Sarah’s Heart Angel (as Rachel so poignantly put it). It was so exciting, and fun for all of us. After everyone left, we completed our pay it forward gift. (Sorry, I can’t post what we did, because we want it to stay anonymous. But, the person who helped us was grateful and assured us that the gift would be very appreciated.) I think we all agreed, it was a perfect ending to a really wonderful day.
Sarah’s annual biopsy and heart cath was on Friday morning, not quite as early as usual. (We were grateful for that this time. Reporting at the hospital at 7:30 in the morning is so much kinder than 6:00.) It was absolutely amazing to witness how much my daughter has changed through this last year. She walks through the hospital like she kinda owns the place, without so much as a wince She requested her j-tip prepped IV with the blood draw (so she doesn’t have to be poked twice) and even tells them where to place it. She told the anesthesiologist exactly what she wanted and needed to get through it. She laughed and joked with the nurses and techs in the cath lab. And she hugged me goodbye with a smile on her face. She’s even so spoiled and assertive that she got to have her favorite doctor perform the procedure. (The scheduler called us three times to reschedule so she could have the doctor she loves most). And in that attitude, everything went well, just as she expected. Her pressures are great, her coronary arteries are clear and beautifully healthy, her stent is still in great shape and the blood flow and pressures are balanced, and all looked perfect. She had to lie flat for 4 hours after the procedure, but that wasn’t too big of a deal since she was pretty sleepy with the anesthesia. She received some IV mag because her magnesium levels were reading unusually low. That kept us in recovery a little longer, but they did the echo right there, too, to save us some time.
We got the biopsy results back while we were waiting to go home, and plans had to be changed. The absolutely wonderful news is that her cellular rejection is all “cleaned up”. It’s down to a 1 now (which means none), and just like they said it would, it got better. But…now Sarah has some antibody-induced rejection (level 3, which is still considered mild), that will require different treatment than the other kind. They kept her overnight to start the six monthly IVIG treatments she will need to help calm her antibodies down and “trick” them into thinking there are enough of the right kinds already, and all is well. The IVIG is a blood product taken from a pool of over 1,000 donors. It’s just a dose of generic antibodies that the “mean” ones then glom onto, and then they don’t attack her transplanted organ anymore. She had a few crazy antibodies show up just prior to transplant, and then after, there were some more “donor-specific” antibodies that showed up. After her IVIG treatments, they disappeared. I have every reason to believe that will happen again. They’re talking about setting up the next five infusions closer to home so we don’t have to go to Utah for them, which would be really nice. I don’t know for sure when they’ll biopsy again, how often we’ll be checking things out, or how long it will actually take for the rejection to get better. But, with this kind, her meds stay basically the same, and they told her to go on living her life just like she was—active and happy, and not to worry too much about it. So…we won’t.
We hope you will join us in honoring Sarah’s donor’s family and “Pay it Forward for Sarah”. We had the opportunity to “Pay it Forward for Abby” last summer while staying in the Ronald McDonald House. It was exciting to develop our plan and so wonderful to do something nice for other people…just because someone else had done something incredibly unselfish and wonderful by giving life to our friend. Someone may leave an extra large tip for the waitress at their business lunch. Others may work as a family in their neighbor’s yard. Some of Abby’s friends paid for the car behind them in the drive-through. Maybe someone you know is lonely and needs a visit and a friend. It doesn’t have to be expensive, and it doesn’t have to be grand, but it should from your heart. We thank you ahead of time for your service in our behalf. We are so excited to hear about what you do to “Pay it forward for Sarah”. Please comment and share your stories with us! If you’d like to leave a little card explaining your service or gift, please feel free to click on the one below, print it out, and pass it along. Maybe, somewhere, somehow, her anonymous donor’s family will have someone do something kind for them, and they’ll be able to feel loved during such a hard time in their lives. Thank you so much!
I recently wrote this article for our Dixon Family Newsletter. It’s something I’ve been pondering for a long time, but more intensely lately. I thought it applied really well to the decisions and perspective we’ve tried to keep throughout our journey with Sarah, so I wanted to share with a little larger audience that has, perhaps, a little more interest in my thoughts. And, I hope, through sharing it I might be able to help someone else out there to take a look at the tough things they’re going through just a little bit differently.
Gifts of Adversity
“Life’s greatest gifts often come wrapped in adversity.” —Richard Paul Evans
Steve and I have been reading and discussing a very thought-provoking little book by Richard Paul Evans entitled, The Four Doors. On the cover, it’s described as “a guide to joy, freedom, and a meaningful life”. In the chapter we recently finished, it talked about adversity and how our challenges are what compel us to rise up and become. He said, “Most of the greatest learning experiences of our lives come from our adversities. In many cases, we do not succeed in spite of our challenges and difficulties, but precisely because of them.”
At some time in our lives, we all have challenges, difficulties, losses, worries, fears, and struggles that seem to consume us, and cause us to lose focus on the things that used to bring us joy. Sometimes we get stuck in the “why me” stage of our struggles. Evans explained, “We can spend our days bemoaning our losses, or we can grow from them. Ultimately, the choice is ours. We can be victims of circumstance or masters of our own fate, but make no mistake…we cannot be both.” So, we choose….
When Sarah was little, I had a conversation with Grandma Law about enduring trials. During that conversation, I realized that just simply enduring (waiting them out, or simply existing until they’re over) wasn’t enough for me. I wanted to endure them WELL. So I decided then that no matter what happened, or how hard it got, I would always find a way to endure the struggle, the hardship, the pain…the best that I could, and that I would emerge victorious. I would learn something from it, find joy somewhere in it, or become someone I hadn’t previously been. I’ve always loved the quote by Elder Marvin J. Ashton that says, “We must be more concerned with what we do with what happens to us than what happens to us.” (Oct. 1974)
All that stretching, growing, learning, and becoming is most often a very painful process, but one that’s absolutely necessary for us if we’re to become the people we’re destined to be. Evans tells of a time when he lived in Chianti, Italy. The view from his bedroom window was postcard perfect…beautiful rolling hills ripe with blushing grapes. He was surprised one day when he commented to his winemaker friend that they must have very fertile soil to produce such famous grapes. He said, “No, we have terrible soil. Good grapes do not grow in good soil.” So, he did some research. He wrote, “It turns out that grapes are lazy. If the soil they grow in is too fertile, the grapes do not need to extend their roots deeply, which results in mediocre grapes that are used to make cheap table wine. Because the soil in Chianti is poor, the grapevines develop large, intricate root systems that stretch deep into the ground, extracting not only what they need to survive but many other nutrients and minerals as well. The result is a sweet, delicious grape. The metaphor is obvious and thought provoking.” What kind of grapes do you want to grow?
I’m sorry that you’re hurting, struggling, worrying, scared, lost, or sad. But I’m not sorry about what it will do to help you grow, if you decide to let it. I’m not at all suggesting that we shouldn’t feel pain in our trials. And please don’t think for a minute that I’ve figured it all out and can handle anything. Despite more recent difficulties, I’m still learning much even from things that happened a year ago. But isn’t that the point? To keep learning, growing, and stretching out those roots to do more than just survive?
The view is always so much clearer at the other end. We are often even grateful for the experiences we had and the ways we grew as we traveled through our most difficult times. I love what plane crash survivor and burn victim Stephanie Nielson said at a recent women’s conference in Evanston. The reporter said, “At the end of her presentation, after gently and humbly sharing the horrifying months and years of recovery she has endured and will continue in some form to deal with for the rest of her life, she said this: ‘I would get back in that plane again, to become the person I am and what I’ve learned.’” We are so blessed to have a Savior who knows our pain and how to strengthen and succor us in our trials; our spouses, our families, and our friends to listen, offer perspective, and lift us when we are in the depths; and even professionals to help us deal with our pain so we can grow through our challenges. When things are hardest, try to think of your adversity as a gift. It could be just the one you didn’t know you needed at this particular time in your life.
I was so happy yesterday that the leaders of this great little community I live in realized that organ donation is important enough to create an event and proclamation to recognize National Donate Life Month. It was really a neat event, so it made me kind of sad, that not many people knew about it. We’ll call this year a good start, but I think next time we’ll have to do something about that… 😉
The videos from yesterday are uploaded and ready for you to see! Just click on the links below…
Big huge bonus… My sweethearts made the paper! (At least those who read the paper will know….) I kind of figured there would be something, with all the picture and note taking going on behind me yesterday. Here’s the article about Pocatello’s National Donate Life event from the Idaho State Journal. (Sarah’s name is spelled wrong, but we’ll forgive, since it was a pretty good article.)
Photo: Doug Lindley/Idaho State Journal Steve Brown watches as his daughter, Sara, speaks at the Pocatello City Hall about her trials of getting a heart donated for her and how there was a need for donated organs.
POCATELLO — Just shy of a year since his daughter Sara received a lifesaving heart transplant, Pocatello City Councilman Steve Brown said his role in celebrating National Donate Life Month on Wednesday was “personal.”
Based on his perspective as a person dramatically affected by organ donation, Brown said he would seize the moment to express an opinion not often extolled.
“Our donor program should be an opt-out program, and not an opt-in program,” Brown said, often becoming emotional when he spoke. “If we can influence one person today, then this event has been successful.
But you need to know that one person is not enough.”
Brown was speaking in the Pocatello City Council Chambers Wednesday afternoon during a ceremony that marked the city’s observance of Donate Life Month. It included raising a Donate Life flag which will fly beneath the U.S. Flag at the Pocatello City Hall during the month of April.
On hand were two dozen observers. They included Brown’s daughter, Sara, Lance and Diane Peck, who own Downard Funeral Home in Pocatello, representatives from Intermountain Donor Services, and Megan Moore, Miss Treasure Valley, who is advocating for organ, eye and tissue donation during her reign.
Alex MacDonald of Intermountain Donor Services, the entity that oversees organ and tissue donation throughout Utah, Southern Idaho and the Southwest corner of Wyoming, started off the event by letting those in attendance know just what it is they are up against.
“Right now we’ve got 121,000 on the transplant list waiting for a life-saving transplant nationally,” he said. “Everyday 18 to 20 of those people die waiting because there is not enough transplantable organs to help everyone. That’s what we need to end.”
Representing that tragic reality was Miss Treasure Valley Moore, who lost her brother last year. She explained that in April of 2012 her family was told that her brother had a liver ailment that would require transplant and he was given a seven-year window.
“We were told seven years and we were cut short six because he unexpectedly took a turn for the worse,” she said, fighting back tears. “Every day people are in need of some sort of organ transplant and each day people are dying because there are not enough organs available. Unfortunately, my brother is one of those who didn’t make it.”
Prior to Moore and just after her father spoke, Sara Brown talked about her ordeal. She shared some of her personal likes and favorite foods, saying that she “could not live without music.” She also said that when told she would be getting a heart transplant, she was on so many medications she simply can’t remember the moment.
“But I do know how grateful I am for my donor’s selflessness,” she said. “I do know that I wake up every day hoping that if I live life to the fullest and find some little blessing in it. I hope that that will some how be a way to thank that special person. I do know how someone else’s decision saved my life. I can now wake up feeling wonderful and go throughout the day and go to bed feeling just as fantastic.”
Sara was born with several heart defects. The surgeries and medications she endured and the weakened state she was often left in also led to the development of a condition that prohibited her body from absorbing protein.
The condition left her gravely ill during the latter part of 2012 and early 2013.
MacDonald said that two opposing stories summed up the difficult nature of what he did and that with each happy ending, there are also many sad ones.
The Pecks were on hand in their role as advocates for organ and tissue donation. Diane frequently speaks on the topic. Lance said he too sees both sides of the issue. He says organ donation is a topic families should discuss before the need to make a decision arises.
“I often see how families are approached about organ and tissue donation,” he said. “Many times, the family hasn’t given it any thought. Unfortunately, many times, because people don’t give it thought, they decide not to donate.”
Brown talked about the day Sara’s cardiologist came to their room and said she would get a transplant.
“We never expected, in Sara’s life, to be able to have a transplant,” Brown said. “To have that news delivered was grateful jubilation. In that moment that we received that news, it only took a second to realize that another family had heartbreak and tragedy in their lives. We continue to pray earnestly for that family. I will never be able to adequately express the complete love and appreciation and gratitude for this most special gift.”
Moore said her brother’s story and his sudden death for the lack of an available donor is what led her to take on organ and tissue donation as a platform.
In just a sentence or two, she may have best summed up the need and the simple solution.
“I don’t think anyone really understands the importance of organ donation,” Moore said. “Did you know that to become an organ donor, all you have to do is check yes when signing up for a license? Who knew it was that simple?”
Moore also said that although her brother was not able to be saved through organ donation, he was an organ donor.
“Within 24 hours, he was able to give sight to two others,” she said.
Thank you for taking time to watch the videos and read the article. Organ donation means so much to our family, as I know it does to many of you. Thank you to those of you who share our posts, who have talked to your families and friends about this, and have become organ donors. Just like discussions about life insurance, wills, and funeral arrangements, it’s an uncomfortable topic, and nobody really likes talking about it. But just like those things, it’s important to make the organ donation decision ahead of time. I really didn’t think about it much since I checked “yes” on my driver’s license so many years ago…until it mattered to me. This is me (someone who loves you) just encouraging you to make the decision, before it matters to someone you love.
~Julia
Oh, just a few last things (because of some discussions I’ve had) and then I’ll leave this subject…(for a bit).
If you’d like to register as an organ donor, here’s the link:
The City of Pocatello, in conjunction with the “Yes” Idaho! Organ Donor Registry coalition and Intermountain Donor Services (IDS), held a wonderful awareness event at City Hall today including a city proclamation, awards and flag raising. Steve (in the capacity of city councilman) was asked to read the proclamation in the mayor’s absence. He was very honored (in the capacity of Sarah’s dad) to be involved both on a city level and a very personal level. In 19 days, it will be one year since Sarah was given the gift of life because someone said “yes!” What an amazing gift and legacy to leave behind. I’ve urged you many times to become a donor, if you’re not already. I realized that many of you, despite the amazing things you’ve “seen” happen for Sarah through organ donation, might still have questions or concerns that are causing your hesitation. Did you know that you can still be an organ, eye and tissue donor even if you have health issues? We’re happy to answer your questions, if you want the encouraging (though possibly slightly more skewed) version of those answers. Also, the links above are wonderful ways to learn more. (It’s also important, once you’ve made your decision, to make sure your family and loved ones know your wishes. Simply having it on your driver’s license isn’t quite enough. They will will ultimately be the ones to sign the release forms, and give the final ok.) Whatever you decide, we still respect you and your decision. And we will always love you.
Besides Steve’s comments and reading the proclamation, Sarah spoke for a few minutes, and another sweet young woman, Megan Moore (Miss Treasure Valley), also spoke about losing her big brother who was waiting for a liver transplant. Sarah and Megan helped raise the flag, and they, along with Lance and Diane Peck were recognized and given a thank you “teardrop” award symbolizing the gift of life and hope. It is given in honor of the donors, the recipients, and families that organ donation affects. Sarah was given one to thank her for her part in spreading the word and teaching people about organ donation through her blog and opportunities like today. Megan’s goal during her rein as Miss Treasure Valley is to save at least one life because of her efforts in education people about organ donation. The Pecks are very involved with IDS and have given countless hours educating people in this community and helping families with both sides of organ donation. It was pretty touching.
Here are some pictures I took at the event today. I also had some video clips of Steve, Sarah and Megan sharing their thoughts, but we can’t get the video to work right now. I’ll post them as soon as I can. Promise!
~Julia
Steve, Sarah, Megan Moore, Alex McDonald (director of Public Education & Public Relations for IDS), and Diane & Lance PeckExplaining the “teardrop” award before presenting it to SarahRaising the flag…. The wind was strong, and the rope was slippery wet. The officer is kneeling on the ground to anchor it so the girls can pull.
Megan and Sarah ~ Thank you to The City of Pocatello for their awareness efforts!This journey makes fast friends.
