Reality Bites

Reality is merely an illusion, although a very persistent one.
--Albert Einstein

Albert was a very smart man, but I think he got this one wrong, at least as to the first part. Reality is no illusion. Should you start to think so, should you start to live in a world of supposition, speculation, and fantasy, reality will be sure to remind you of how real it actually is. This was made painfully aware to me on two separate occasions over the holiday weekend.

Neither instance had anything to do with Ayden. He continues to exceed even my most optimistic expectations (the pacing study result today did not change that). In many ways, though, that is really the point. As I have said before, he has done so well that the challenge is staying grounded in the reality of his illness and the challenges that he will continue to face. The statistics are (slightly) in his favor, but there is no guarantee as to which side of the statistical line he will ultimately fall (or stand) on. Anything can happen, at any time. At least two families have learned that. The hard way.

Yesterday afternoon I was in Ayden's room in the Acute Care section of the hospital. This area is for cardiac patients who no longer need intensive care but are not yet ready to go home, like Ayden. Being out of the PCCU does not mean that a child is out of danger. This was made painfully obvious yesterday. A mother came out of her child's room suddenly, screaming for someone to come help. She was frantic. One nurse went into the room. Then a second. Then a third. Someone went and retrieved the "crash cart" and placed it outside of the room (thankfully, that's where it stayed). Someone else started making phone calls. The mother continued to be inconsolable. I could not see her, but I could hear her easily from the other side of the pod. She repeated several things, over and over: "he looked so perfect", "what happened?", "how could this happen?", "please help him". The hospital staff never went into full on crisis mode - no "stat" call went out over the intercom - but the little one was taken back down to the PCCU.

I do not know how he is fairing, currently. I do know enough to appreciate that the outlook is certainly not as the family would prefer (a potentially gross understatement, I'm sure). About an hour later a family member of the child had a cell phone conversation directly outside of Ayden's room. I could not help but overhear some of what was said. I will not get into specifics, but it is sufficient to say that his heart is not doing something that it needs to be doing and, sadly, it's possible it may never be able to do so.

Needless to say, seeing this all go down was troubling. Hearing the terror in that mother's voice is something that will stick with me for a long time. I found myself just standing in the doorway to Ayden's room, trying to process what had just happened and what my own reactions to it were. Obviously, I could empathize with her. If you recall, Ayden had his own scary episode while he was in the NICU. The main difference? Allison and I did not learn of it until after the fact. Before we even knew what had happened, we knew that he had made it through safely. We were not in the room when it started. We did not have to see the nurses and doctors scramble to help him. We did not have to wonder whether he would make it. That mother had to go through all of those things, and completely out of the blue.

Empathy was eventually replaced with something much darker - I realized how grateful I was it wasn't Ayden who had suffered the breakdown. I know this is a completely natural reaction to have, and that there was no malice in it on my part, but I nevertheless immediately felt guilty for having thought it.

The final thought was the reality wake up call. There is nothing I can point to that explains why this happened to this other child instead of Ayden. As I said, there's nothing to guarantee that something similar won't happen. I cannot explain why Ayden is "safe" while that child is struggling.

The second instance from this weekend is even more sobering. I previously wrote about Ayden being the third HLHS baby born at Vanderbilt in three consecutive weeks. Despite being the last of the three to have surgery, it was repeatedly intimated that Ayden's recovery was outpacing that of the other two. I asked the Army to include those two other special children in their prayers for Ayden. I was told today (and have not verified) that last week an HLHS baby in the PCCU died. I know nothing more. I do not know if the child was one of Ayden's counterparts (I never knew their names and have heard nothing of their progress since we left the PCCU), or was one that was born later.

This produced the same wave of emotions and thoughts as what happened yesterday, except that I could not empathize with the nameless and faceless parents of that child. I can relate to the unmitigated fear they felt about the very real possibility their child's stay on this Earth would be short, but I can in no way comprehend what it is like to actually have that fear realized.

So, reality has made its presence felt, in a very direct way for those two families and indirectly for me. With all due respect to Albert, living a life on the basis that reality is an illusion is living a life on the basis of a delusion.