Before we were discharged, one of your transplant doctors asked us "What are you most worried about?" I can only assume she expected us to be afraid of the big stuff (rejection, heart failure, messing up your ribcage, infection, or some other catastrophic medical scenario), but what really scared me was the most mundane. I'm terrified of you catching some totally normal illness like a cold or a stomach bug, and I have no idea how I will be able to recalibrate myself to work properly outside a hospital setting. Oddly, I'm almost less anxious about you than me. If you get sick - even a teensy bit - we have a dozen people we can call who will tell us exactly what to do. You have safety net upon safety net, whereas I have been essentially left to defend myself. If (when) I find myself panicking about something - your health or safety, my ability to fit into non-medical conversations, being a full-time teacher again, or what have you - there is little I can do.
I might be more shell-shocked than I thought I was, though, because I walked back into the building feeling painfully self-conscious. Of course, no one else has been through exactly what I have, but even those who have been dragged through some serious shit haven't been through it as recently as me. I always feel painfully awkward around people who have experienced major trauma, and part of me assumed that others would treat me differently somehow. Even at the hospital, you stood apart from many other kids because of your age and the severity of your problems. Critically ill teenagers are sad, but critically ill (really cute) infants whose parents are displaced from home and financially in danger despite being educators? Who knows what to do with THAT? It feels like expressions automatically soften, topics of conversation shift, and voices go a bit maudlin when I join a conversation. I'm sure much of this is in my own head, but Hudson, it seems impossible to ever feel completely normal again after such a dramatic interruption.
I feel like a war veteran. I don't have flashbacks, per se, but the last four months of my life have been completely saturated with minutiae that are genuinely unrelatable and often scary to others; I don't really have anything to talk about that isn't generally about you. Despite this being an election year and my generally caring about politics, I couldn't tell you a single thing about what has happened in the campaigns during the last four months. I can, however, rattle off pretty much every medication you've ever had, recite the details of a pre-op consent form, and I have stories upon stories about people in and around the hospital. Everything is you, Boston, cardiology, or hospital.
Walking out into the world - whether that be into a grocery store, work, bank, whatever - I feel labeled. I know this borders on hubris, but I feel like anyone I encounter can see on my face that there is damage under the surface that I still haven't reconciled. Grocery shopping feels untoward; how can I do something so utterly mundane? Shouldn't I be home hovering over you, or talking to a doctor, or responding to some kind of crisis? (Isn't there a crisis?)
I recently read through the entirety of a blog written by another mother whose child - a girl - received a transplant at around the same age as you. The girl had a long, complicated recovery and required almost constant care. The mother consequently took months off of work, ultimately leaving her job. The whole way through, she kept a positive perspective to the point of almost being gushy despite the fact that her life was literally crumbling around her. She embraced having a "transplant kid" to the point of reshaping her personal identity; put simply, she reveled in the label rather than feeling self-conscious about it. I'm still not sure how you will bear the burden of being so intrinsically different, especially since I'm bucking the distinction in a way I never expected.
Some people attend veteran rallies and hang out at VFW halls...others do their best to forget they were ever in combat. I knew from the beginning that I would be the latter more than the former, but I never realized how forcible the decision would need to be.
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