We have not yet met our donor; in fact, we haven’t received any contact from them at all. I am hopeful that some day we will, but I have no idea what to do if and when that day comes. How do you act around them? Do you speak to them about their loss? Do you plan something fun, or should the meeting be somber?
The answers to a lot of these questions are highly situational. How you behave and what you say will depend on how much time has passed, what their demeanor is, and how much contact you had prior to meeting them. I suggest trying to communicate via letters, emails, social media, etc prior to meeting face to face. That way, you can establish a healthy relationship and get a handle on their emotional wellbeing before seeing them in person. That will help you formulate your plan for how to conduct yourself and express your thanks, and it’ll also help you determine where you want to meet. You’ll want to consider locations that are neutral, or that may make them (and yourselves) feel more comfortable. Depending on how well things go, you may eventually feel comfortable with expressing your own survivor’s guilt and talking to them about the emotions you’re facing. It may help to ask how they feel, in return.
A couple of my contributors have met their donors. Laura had this to say:
My parents wrote back and forth a few times and my mom and I met them several years ago. They are like our second family.
-Laura Hofeins, 27 years post heart transplant
Amanda and Tucker also had the wonderful privilege of meeting their donor. You can find their story here. This is what Amanda had to say:
We found out right away who our donor was. Of course, we weren’t 100 percent sure, but everything lined up, and it was later confirmed that John Clarke Perry was in fact our donor. A former coworker of mine messaged me right after Davis’ surgery to tell me that she thought Davis received JC’s heart. At first, I didn’t put much thought into it, but the more I learned, the more I thought JC could really be our donor. All we knew about our donor at the time was that he had the same blood type as Davis and was a plane ride away. We knew that something happened at the hospital JC was at that delayed the surgery. I told that to my former coworker, and she confirmed that all that was true about JC. What I didn’t know at the time was that my former coworker was actually tracking flights, and there was a Children’s airplane that traveled to Monroe, LA that night and back.
At the same time, this coworker was in contact with our donor family. In fact, this coworker’s sister was neighbors with the Perrys! Both families looked each other up on social media, and Jonathan Perry did a Google search and saw many newspaper articles about Davis. A few weeks after this coworker asked if I would be willing to be friends with Holley Perry on Facebook. I said of course! Through Facebook Messenger, Holley and I began a friendship. That eventually led to the exchange of emails and phone numbers. We wouldn’t actually speak on the phone until right before us meeting them.
Last April, I was invited to speak at our local hospital’s Donate Life event. I was telling the coordinators about our story. They asked if I thought the Perry’s might be willing to speak. I said I would ask. To my surprise, they said yes. We met them the night before the event in the hospital chapel. It was like going on a blind date! We were excited to meet them, but anxious at the same time. We wanted them to know how thankful we were, but there are really no words you can say to express the gratitude you feel in our heart. We also didn’t want to say anything that might offend them. After a few minutes of meeting them, all our worries were pushed aside! It was like we had known them our whole lives. We had so much in common and so much to talk about!
Then we got to see them again in September when ESPN did the “Heart of a Tiger” segment for College Gameday. Both families met and celebrated JC and his gift of life to Davis. It was an amazing weekend, and we look forward to seeing again soon!
We communicate with the Perrys at least once a week either through text or social media. There isn’t a rule book or advice book out there to help us navigate how to have a relationship with our donor family, but for us, it has been very easy and worthwhile. They will tell you that seeing Davis and how well he is doing has helped then tremendously in the healing process. In turn, them having peace and comfort with JC’s passing has helped us cope with our survivor’s guilt.
-Amanda and Tucker Boswell, son Davis 15 months post heart transplant
John Clarke’s parents set up a foundation in his honor to provide financial support to families in need of life-changing medical treatment. If you would like to learn more or make a donation, you can visit the John Clarke Perry Foundation page here.
Depending on your child’s age when you meet your donor, you may want to consider talking to them about the situation, first. In Amanda’s story above, Davis wasn’t yet old enough to realize who he was meeting. I think his innocence on the matter made things easier on everyone. There were no strained questions, and he didn’t feel the guilt of meeting his donor’s parents, like his own parents did. However, if your child was older when they received their transplant, or if it’s been quite some time since the transplant when the donor reaches out to you, your child may have some questions or discomfort with everything, as well.
Make sure you talk to them about how they are coping and handling their emotions. Let them formulate questions, and help them prepare for how the meeting could go. Kids are remarkably observant and acutely aware of complex situations, even at ages when we think they aren’t capable of being so. By talking to them about their feelings and how they perceive things, you can help them navigate their own survivor’s guilt and quell their fears. Encourage them to write their thoughts down or express them tangibly, even if just for themselves. Kids need an emotional outlet, too.