bwiley16

Things have been crazy as ever. My new niece arrived last week, not without complications though. It seems now that the issues might be less severe than we originally thought, which is good. Despite the challenges that may lay ahead she is still the most adorable little thing and incredibly active. She flops and moves and hunches more than any baby I have been around. She's an amazing little thing. When I first heard about the complications I was just floored. It's been a rough go over the last 2 years with my dad's illness and that process, to then learn that my niece potentially has a long, difficult road in front of her was not the kind of uplifting news I was hoping for. I must admit my initial reactions were not terribly enlightened. I thought of other friends and relatives who are currently pregnant and I wondered why this one, why does my niece have to deal with this instead of someone else's child? Not really that nice a thought to have. Then we started doing research, our family are legendary researchers. My father had a stroke in 2009 centered in his brain stem, comparatively rare as strokes go and typically fatal given the magnitude of the damage. The ever optimistic doctors gave him zero chance of improving and urged us to pull the plug. That's not really how we roll and since he had no advance directives we continued to fight and advocate for him until he finally succumbed to infections 15 months later. In that 15 months we learned a whole lot about modern medicine, the current unfortunate state of our healthcare system, and stroke therapy. We diagnosed him with locked-in syndrome weeks before the neurologist sorted that out and we figured out that he could communicate by blinking. Not a fast or efficient form of communication but certainly better than nothing. Ultimately, before he passed, he regained some ability to move his extremities, tempered by months of muscular atrophy, he regained the ability to breathe on his own. He was brought down by infections, not by another stroke or some serious malady. One infection was treated with medication that shut down his kidneys, that infection never went away and was one of the ones present when he passed away.

I'll be the first person to tell you that humans are not meant to live in hospitals or with supportive measures for long periods but I do think given enough time and reasonable therapy that my father would have regained some significant level of functioning. Unfortunately human beings have done a masterful job of creating infections that we can't get rid of, we have turned hospitals into places where people end up dying for reasons other than why they came to the hospital in the first place.

Anyways, my niece is here and while I might not always feel it on the inside I am going to continue being incessantly positive around my sister and brother in law, a cheerleader for what can be achieved if you are willing to work a little for it. I'm not an outwardly religious person, feeling much more comfortable with the practical wisdom contained in the Four Noble Truths and the Eightfold Path than I am with the prospect of sitting in a church every Sunday, but I do believe there is some larger force floating around out there and we might not always understand why things happen the way that they do but we need to embrace that they do happen for a reason.