T.J. had his semiannual Duchenne Muscular Dystrophy clinic visit on Monday. His heart and lung functions are holding steady. He is doing great in other areas as well. He is learning to navigate his own complex medical needs.
One of the goals in 2023 is that TJ learns tests that are run on him and why. Before starting the ECHO, we discussed details like how often he gets this one done and why. We were talking about what the test results indicate about his heart.
In the 11+ years we’ve been doing this, between doctors’ appointments and clinical trials, I’ve lost count of how many times I’ve watched his heart on a screen. It never ceases to amaze me how little these reports reflect the true nature of the spirit of one’s heart.
There isn’t a test that could reflect T.J.’s generosity, kindness, and determination.
It is difficult to articulate the feelings I have each time I sit in that darkened room, listening to the “swish, swish, swish” coming through the muted speakers while the technician gently directs T.J. to breathe a certain way, move his arms, or just lay still. I’m not listening for anything in particular, nor was I diligently watching because I think I will be the one to catch an abnormality. I don’t know what I’m doing.
I only know that I first heard his heartbeat when I was about two months pregnant. Little did I know I would listen to his heartbeat frequently throughout his life. I used to dread his echocardiograms. I hated what they stood for – that the technicians, nurses, and doctors were looking for signs of deterioration, scarring, and malfunction. However, I have decided that these appointments are blessings in disguise.
Granted, we would skip them if we could, but I choose to thank God for the opportunity to listen to his heartbeat and reflect on how such a small organ can hold so much resilience, empathy, strength, and fortitude.