A couple of weeks ago we had our one year clinic visit. N is, thankfully, doing incredibly well! We’ve had a couple of bumps in our road up to this point, but it has, ultimately, been an amazing ride.
We were given the word that we can space out our visits from every four weeks to every three months. When I heard this, I was overjoyed! For a moment…
That joy very quickly turned to nausea and intense discomfort. This must have shown on my face, because our nurse quickly assured me that we could come back to them prior to that three months time if we felt we needed to. HUGE sigh of relief.
But it was in that moment that I realized I had lost my safety net again. I had gotten so accustomed to seeing our nurses and doctors at those regular intervals. Of course, our team is always just a phone call away. I know they will always be there for us, without question. But now, it feels so strange to be set loose, again. As they put it, we’ve graduated!
Yet I still feel like we’re in training. We’re still learning this whole transplant-family thing. What am I supposed to do for three months without seeing them? I don’t know how my sanity is going to hold up without their monthly reassurance that he’s still doing well. I have this perpetual free-fall sensation in the pit of my stomach…
This is when taking N’s vitals
so regularly gives me comfort. I know that if anything seems out of the norm, I can go to the team and tell them exactly what is “off,” and they can give us guidance. This is why I so highly recommend tracking your kiddo’s vitals, or at least some baseline parameters (mood, eating habits, any kind of symptom, really). Not only am I able to pick up on “huh, that seems odd..” but I can point to past data and say exactly why it seems different or weird. And honestly, usually it’s me being paranoid. But I’d rather be paranoid than miss something!
The other fun part of this past visit was that we got to show his nurses in his old ward that he is walking completely independently now. At our last visit, he would toddle from person to person, but now he is running amuck completely on his own. And he’s quite the explorer! My favorite part of him walking is watching where his little curiosities take him. Some of the nurses we hadn’t seen in a while didn’t even recognize him!
But there is a bitter-sweetness to these visits. First, I remember what it felt like to still be in his room and see others visit the nurses. Some of N’s doctors would encourage us to talk to those visitors to give us hope of how N could heal and eventually be just a normal kid. But it just made me angry and jealous that we were cooped up in that room and not living a normal life. Now, I’m afraid I’ve become that visitor, angering someone else. I would hate to cause others that same pain.
Secondly, it’s becoming more and more the case that we don’t always recognize people. There is always personnel turnover wherever you go, I understand that. But there are days when we visit that we hardly know anyone. This makes me fear the day that his ward no longer feels like home. Those walls contained and witnessed some of our darkest hours. But what if it wasn’t the walls that made it feel like a safe place? What if it was the people? And what happens when those people move on to other places? Those angels saved us all. How do we cope with losing that feeling of security?
There is an incredible bond forged between you and those who walked alongside you through the trenches of Hell. Our nurses and doctors held us through our tears. They carried us through the most miserable of days. They have shared in our suffering. If you have this same anxiety that I do, my advice to you would be to maintain those relationships; nurture them and invest in their upkeep. Social media is a wonderfully powerful means of keeping up with those who are geographically separated from you, but who still hold a piece of your heart. Don’t let that bond be broken by distance.
Ultimately, though, as Meister Eckhart said, we must trust the magic of new beginnings. Out of adversity, such amazing growth occurs. Embrace your new freedom, and know that one can fear the unknown while still conquering it!