I had great plans to write this post at the beginning of the month, post stories of our new transplant friends to tug on your heart strings and convince you how important organ donation is, and motivate you to register to be an organ donor. The month whizzed past me though, and I fear I have now missed that opportunity. However, I’m guessing most of you who read this blog regularly have already been convinced. Watching Sarah’s journey and the miraculous change that has taken place through her second chance, should be enough proof to help you decide if you were sitting on the fence about registering to become an organ donor.

In observance of Donate Life month, we’ve been flying our Donate Life flag (whenever the weather has not threatened to tear it from its hooks), and been involved in planning the first Dash for Donation in Pocatello to be held the end of June. (More about that in a later post.) Steve called in to his friend Neal’s morning news talk radio show (on KID 590 AM) on Sarah’s heart birthday to talk about the importance of organ donation. (I wanted to post a link so you could hear it, but the sound isn’t working, so we’ll post that later, too.) There are currently more than 123,000 men, women and children waiting for life-saving organ transplants. 18 of those people die every day waiting. Here’s the crazy thing… 90% of Americans are aware of organ donation and support it, but only 30% have done anything about it. Why don’t they? I’m guessing they must have questions, don’t really understand, or simply haven’t cared enough to register.

Here’s a great video by HRSA posted on the Donate Life America website that explains organ donation and transplantation, and how it works. Click here to watch it.

Because someone said “yes” Sarah is living a life we never dreamed she’d have. Because someone said “yes” her little friend, Zack is pretty healthy (though his kidneys don’t particularly like the anti-rejection meds), growing like a weed, and doing all kinds of normal kid things. Because someone said “yes” our friend Abby gets to be a teenager and recently went to her first school dance. Because someone said “yes” Sarah’s blog buddy Lauren is serving an LDS mission in Salt Lake City and sharing the joy and peace that the gospel of Jesus Christ brings. Because someone said “yes” just a couple of months ago, our little friend Alex got another chance–just in time–and is home with his family and doing well now. Because someone said “yes” our cute friend Owen has had a great year and a half to be a “regular” kid. (He’s having some struggles right now, but he’s a fighter, and his angel heart seems to be healing and responding to treatment. Thank you for your prayers.) Because someone said “yes” our sweet friend Shiloh has been given an opportunity to grow up and run and play with her big sister. Her mommy said I could share a little news clip about their family and organ donation. Click here to see the cuteness. These sweet friends are just a few of the many kids we’ve been privileged to know personally and watch the miracle that came with life-saving organ donation. We love them all… and especially the people who gave them another chance.

~Julia

P.S. If you’re not already, the Donate Life America link above (or on the sidebar) will lead you to more information and connect you to your state’s registry. Thank you, from the bottom of our hearts.

 

Sarah’s two year anniversary with her angel heart was last Tuesday. I can’t believe it’s been two years already, and I really can’t believe how well-adjusted and comfortable her new heart has become in the last two years. As we contemplated our many blessings, we overflowed again with gratitude for her donor, and the sweet family that was left behind. With such a beautiful healthy heart, her donor’s life must have ended abruptly, and and we are so very grateful his/her family said “yes” even with such a difficult loss. We had a quiet little celebration with our family that was home (we missed Rachel so much) with a small, yet sparkly, balloon launch. We gathered together in the back yard huddle-style while Steve offered a solemn prayer of gratitude for Sarah’s new life, and comfort for her donor family. As we each took turns sharing what we are grateful for through this experience, we let our balloons go and watched them float to heaven in honor of her heart angel. It was a sweet moment of peace and reflection. I set up a “pay it forward” event on Facebook to help us honor Sarah’s donor’s life, and was completely overwhelmed when in just two days more than 2.5K “friends” had been invited to participate and do a random act of kindness in Sarah’s name on her heart birthday. The tears flooded my eyes to see that almost 100 people had committed to “pay it forward” and many others probably did without even letting us know. Thank you to everyone who did something kind for someone else that day. The greatest gift that could ever be given to our daughter can never be repaid, but it helps knowing that anonymous service and love is being spread around the country (or world?) in a very special angel’s honor.

Sarah’s been home for a week or so after finishing her first semester at LDSBC. She has had so many good experiences there and has made so many good friends. She loves her life in Salt Lake, and can’t wait to go back next weekend for her summer semester. College life looks good on her, and she is so happy. While she was home, we took advantage of the break and tortured her a bit by having her deeply-impacted wisdom teeth removed. She didn’t want to be awake for it, so we opted for surgery at the hospital. Except for the three-try IV placement, all went well. (We sure missed the pro’s at Primary’s during that. Her wrist is almost as bruised as her poor chin is now!) Although she’s a little less “wise” now, she is recovering very well, and has checked off another “normal” young adult experience on her list.

Some of the things we’ve learned…. The world is full of good people with good hearts, who find joy in doing good things. Life is full of good (but sometimes hard) experiences that cause us to stretch, but always to grow. This journey we’ve been on has been full of God’s good blessings and never-ending love. ♥

~Julia

Sarah had another cardiology transplant clinic appointment near the end of February, where all went well and labs, echo and exam looked great. We took a tour of the Cardiology Transplant Department at the UofU in preparation for her transition there this summer. We met one of the transplant coordinators who seemed really nice. (We already met the other one when she was being evaluated originally there for transplant, and she’s excited to have Sarah back.) We learned that if everything looks good at her annual cath & biopsy next month, things change dramatically once she gets to the U. At the adult clinic, (as long as things are going well) they only see you once a year for a full-day of cath, biopsy, poking, prodding, and testing. Beyond that, there are only quarterly blood draws, and simple phone calls to transplant if she gets sick, sees a doctor for anything, has any other health related issues or questions. I’m sure I audibly gasped when I learned that at year 5, the now annual biopsies will stop completely…. Oh, gone are the days of monthly/quarterly clinic visits, check-ups, and periodic reassurances to mom and dad that all is well in Sarah’s angel heart. Pretty incredible and so very exciting, but kind of unnerving, too. Her annual cath/biopsy had to be postponed until May for her wisdom teeth surgery, so that will be on the 11th, and will be our very last appointment at Primary Children’s. Transition to the adult world was eminent, but I think with her choice to do her last annual at Primary’s instead of the U, we’ve managed to suck every last possible moment out of our care there! So…here’s to growin’ up and movin’ on! Wish us… oh, I mean…wish Sarah… luck! 😉

~Julia