Returning to our actual home was an entirely different story from staying at the apartment, and a whole new set of challenges awaited us there. There was no safety net. We couldn’t just run up the road a couple miles to the hospital to see the transplant team if something went wrong. We were on our own.
What made matters worse was that my husband and I were both rapidly running out of time off from work, so we had to return to work immediately. Again, as someone who hates taking the plunge, I dreaded being thrust back into my pre-transplant world when so much had changed. What was worse, I was entirely unprepared for the curiosity that awaited us. Thankfully, my immediate coworkers knew the general story, and they were respectful enough to let me approach the subject rather than asking questions. This was not always the case for those outside my office that I still interface with. There were some people who only knew that he “had gotten sick,” and there were even more people who had had no clue that anything had happened. They just assumed I was having myself a joyous time on maternity leave and didn’t want to come back. I didn’t even think to prepare myself for questions or how to tell someone exactly what had happened. So if you have not yet returned to work or to the outside world, I would suggest you start thinking of some prepared and rehearsed responses for when people ask you what happened.
I say rehearsed because it’s easier to give someone a practiced reply than to think of something on the spot. It’ll also help you control the emotions behind your answer. I found that when I didn’t prepare what I was saying, I’d tear up and have to choke down my feelings about it all. This embarrassed me, which made me then want to cry even more. But when I knew ahead of time how I was going to answer, I could screw on a smile and face the questions head on.
Honestly, discussing organ donation with someone who hasn’t experienced it themselves can be kind of a downer. When I tell people for the first time that N had a heart transplant, their first response is a stunned expression followed immediately by some variant of “Oh my God, that must have been so awful. I’m so sorry.” After I assure them that he’s now fine, their eyes fall to their feet, and there is this inevitable pregnant pause as they wonder whether or not it’s socially acceptable to pry into the gory details and ask those questions that natural curiosity sparks. For those brave souls that do decide it is okay to ask away (or for those that just don’t have a conversational filter), I almost always, without fail, get the same three questions.
Question 1: So is his new heart a baby heart? I mean, it had to fit in his chest, right?
This question stabs me with a new pang of guilt each time it’s asked. “Yes. It was a baby’s heart.” Then the knife twists when I see the realization on their face that the “yes” I just gave them means that the donor baby is gone. Cue another awkward pause, and bring on the waves of oppressive guilt. After the first question is asked and the proverbial ice is broken, the flood gates open.
Question 2: Will the heart grow with him, or will he keep having to get new hearts as he grows?
Another devastating blow, and another reminder that his ordeal may not be over. “Yes, his heart will grow with him. But our transplant team says it’s not an ‘if’ but a ‘when’ his body rejects his heart, so he’ll probably need another transplant at some point in time.” Another dawning of realization that more people would need to die in order to donate those hearts that he may eventually need. More guilt. More awkward pauses. And then comes the doozy.
Question 3: Do you know anything about the donor family or how the kid died?
This question almost brings me to my knees every time. I know it’s not meant to be callous, but it feels so heartless. It’s almost as though so long as they’re far enough removed from the situation, they don’t have to think about how inappropriate it is to ask about it, because it doesn’t hurt them. But again, it’s a natural curiosity, and I in no way blame them or fault them for it. But this is where I simply shake my head no and do whatever I can to steer the conversation in any other direction before I sob hysterically. No, I have no idea what horrible tragedy befell that amazing family. I know nothing of the emptiness and sorrow they must endure every day. I can’t fathom how it must feel coming home to the place where their infant once lived, being amongst the clothes and toys that may never be worn or played with again. I can only imagine the heartache and empathize with the grief they must be experiencing.
Now, my immediate family members have had vastly different responses. My dad says people generally avoid discussing it with him altogether. When people asked my dad how N was doing in the ICU prior to his receiving his heart, if he didn’t have good news, they pretty well fled for the hills. This can get really uncomfortable really quickly, so be prepared for people to panic when you start to talk to them. Some people just won’t know how to respond, so they will just end the conversation. Consider this an easy out, not an insult.
On the other end of the spectrum, my husband says the people he talks to tend to focus on N in a more positive light. They appropriately ask how he’s doing and what the next steps are, or they focus on his future. This can be extremely helpful, because sometimes it’s easy to get caught up in daily struggles. These conversations can be a nice reminder that the worst is behind you and vast possibilities lie ahead.
Our friends and extended family have been exceptionally kind and understanding when it comes to asking questions or seeing his scars for the first time. A lot of them actually comment on how they thought it would look much worse or be a lot scarier. The bottom line is, people will be inquisitive. I understand that, and honestly, I expect people to ask questions; organ donation is not something you come across every day, and curiosity is natural.
You just need to prepare yourself for when, and HOW, people will approach you. For example, it absolutely gets my blood boiling when people talk about N’s donor as “the kid.” Our angel wasn’t just some kid. He or she was someone’s entire world; someone’s pride and joy and source of happiness. He or she is a hero and a saint. Some people just don’t stop to think about that. Know that there will be these moments when you want to slap people for their insensitivity, and be prepared to just smile and nod. Or, if you’re comfortable being upfront about it, tell them how their language comes across! As an introvert, my conflict management technique is avoid avoid avoid. So when this happens, I just scream curse words at them in my head while trying not to let it show in my face. But if you’re the kind of person who can approach people confidently in these situations, I applaud you. I wish I had that fearlessness. Perhaps I can work on preparing a rehearsed (and polite, curse-word-free) response to these kinds of phrases.
I asked some of my contributors how they handle these conversations.
People don’t really ask questions… [I] just tell them [I] was born with a sick heart and needed a heart transplant.
– Laura Hofheins, 27 years post heart transplant
I’ve always been very open and honest about what happened with Davis. I feel like God has a purpose in the suffering we went through, and sharing Davis’ story, which is really God’s amazing story, is a way of sharing our testimony and hopefully leading others to Christ.
I love to share the story about how we found out who our donor was. Only God could have written such a story! I’ve yet to not cry when I tell the story which I’m sure gets uncomfortable for the other person, but hey, they asked!
-Amanda and Tucker Boswell, son Davis 15 months post heart transplant