Throughout this blog, we've tried to write in the third person as we share our collective story. While we are sharing this journey together, there are times when we experience things with different perspectives. Tom had some thoughts of his own to share, and so the rest of this post steps away from our usual voice into just Tom's.
I have continually experienced a spectrum between hope and reality, with a slow progression from the former to the latter as this journey has progressed. At the start, it was relatively easy to be inebriated with hope: through the strength of our faith, I could readily find comfort in God's love, mercy, and ability to grant miracles, and I had little knowledge and experience, and there was still time for something to happen. But journeys proceed with slow steps - our knowledge of Caroline's conditions grew, and we experienced watching her without seeing any healing. And there was always the growing reality that time (and opportunity for a miracle) were continually winding down towards the inevitable things that logically must follow. All of these test my hope and, to some extent, erode it.
Sometimes it feels like hope starts to leave, and then only reality remains. There's a helplessness that comes from an inability to fix the problem - something I struggle with, as serving others by fixing problems is not only my profession, but the core of my character. How could I be unable to help not only my daughter, but my wife and family? On the proverbial family road trip, can't I speed up so we all experience the mercy of ending the suffering car ride sooner? And as painful as it is, don't we all want this one road trip to last forever? There's a helplessness being so close to feeling Caroline through each of her kicks, yet so far away from feeling her give those big, smiling hugs his other kids give me. It's part of the helplessness that every father has walking past the broken toys on the workbench, as we have to give our time right now to some other more pressing need. But this is a level of helplessness far beyond that which we are supposed to experience.
There's times where I get too far in my own head - where I think about my own thinking processes (the million-dollar word for it is metacognition), and sometimes I go even further to think about why God designed our brains in a certain way. As that happens here, in this thinking about hope and reality, I sometimes see see hope as God's practical way of helping us through this journey. When there's a lengthy challenge, hope fuels us through the early stages, so that when we get to the later ones, we still have some gas in the tank to see it through.
At other times, I see hope as the mechanism which takes leads our minds to reach beyond to something bigger. In those times, our minds are limited to the reality we see and experience. Hope helps us rise above the current suffering and pain to recognize a higher purpose - from which we find strength to carry forward.
Through Caroline Mary, hope leads me to the higher purpose of supporting life - even if it will be "brief" (9 months + a few minutes) and not of the same "quality" that most get to experience. We hope that God gives Caroline the chance to experience more time on earth, and that God will use our suffering to show love and mercy. But even if the reality we know comes to pass, hope is the strength and faith is the heart that led us through an experience-one that we wouldn't wish on anyone.
Now, after getting this far inside my head, it's time to take a brief trip to the other side of my brain that's filled with bourbon, Buffett (and Dave Matthews), a boat, and a beach - that place we stayed on Anna Maria Island, to be exact.
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