This afternoon, after the second line was put into Ayden's arm, our pediatric cardiologist did an EKG to clear up a few remaining questions. What she saw was unremarkable, so I won't even bother to discuss it. Instead, what is worth mentioning is a portion of a conversation between her, myself, and the NICU's attending physician (subtitle: head honcho), a neonat0logist (he was there to tell me about the day's fits and starts with Ayden).
The cardiologist mentioned that Allison and I asked more questions than most of the parents she has consulted with over her career. Example: in the 20+ years she has been doing this, I am the only parent to ever ask her what the worst case scenario is, assuming he survives all of the surgeries. She feels like we have a better "understanding" of the situation than most. She also said no one has ever had to sit her down and tell her what she has told many parents over the years - that their child has a life threatening heart condition. She makes no claim to "understanding" what that must be like.
I thought about all of this for a moment, then told them that "understand" is the wrong word for the latter use. It's really not about getting to the point where you understand. That's a fool's errand. There's no way to "understand" why something like this happens, why it has happened to you, why it didn't happen to someone who has no business procreating. We all have known, seen, or read about some sorry excuse for a human being who has neglected, abused, abandoned, or murdered his or her child. Don't get me wrong. Allison and I are not saints, by any definition of the term, but we are stable, responsible, and will genuinely love and care for our child. Why does the mother having her eighth child by the eighth different father get a perfectly healthy son, when she can't even care for the first seven? What about the abusive father who has already lost his parental rights to one child? What about the irresponsible teenagers who want all of the "benefits" of unprotected, premarital sex but have no interest in the little child that results? Why do they get something they do not deserve while our son is saddled with an abnormal heart? There can be no understanding here. I will never understand why this is something we must face, why it is our child this has happened to, why he might die.
I told them you can never understand why this has happened. Instead, you can only work your way through the overwhelmed stage, get your head wrapped around what is happening, and then deal with that the best that you can.
I don't know what the right word is to use. I only know "understand" isn't it.
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