Ship Arriving Too Late

I concluded my evening, checking off a handful of to-do's while nudging the remaining dozens forward. I stepped through my evening routine, readying the coffee maker, locking the sunroom doors while leaving the living and laundry room doors open to it so they will naturally air out overnight, checking the gate, and shutting off lights. As I picked up and put away a few items along the way, it struck me how deeply I appreciate this life. I love my kids, even with the challenges of being a parent, and I believe they both love and respect me. I love my wife, whose complete and utter unconditional acceptance of my kids and myself has created a home I only dreamed they might experience. I have a well-paying job that affords me priceless flexibility, even though I've spent the past couple of years anticipating its loss. I have the time each morning to set a tone for my day before my day defines it for me without my input. I enjoy the daily walks with my dog and the mid-day sunlight that streams in our windows in the late afternoon. I get to enjoy beautiful meals or "graze" with Jen at the end of the day. I enjoy the ten-year ritual of turning on a rainbow light in my daughter's bedroom. Tonight I ended my waking hours with the sound of Tom Waits singing "Grapefruit Moon" on my shower speaker, followed by the crickets outside our window when the bedside light.

Tonight, while my evening was ending, my son and daughter sat on the patio around the fire pit with a couple of her friends, talking, laughing, and enjoying a take-out order of IHOP pancakes. I was warmed by the fact that this too is a part of the home I envisioned for them, a place they can be themselves and find themselves as they enter their early adult years.

I shared some of these feelings with Jennifer tonight. At the end of each day, we've been talking recently, given all that's been going on each day. And there has been a lot to share.

Today felt like the most significant milestone yet, and it remains as surreal as any other nightmare might. Linda's struggles have taken a sharp turn downward. This morning, I went to see her before a care team meeting, and when I entered her room, I met the attending physician in mid-exam. Once concluded, we went out to a table and sat down to talk. Forty-five minutes later, I walked away with a whole new perspective, agenda, and angst.

In brief, as he asked and I answered his multitude of questions, his compassion and insight become apparent. He's been down this road before and had plenty of understanding of the struggles the families face. He also knew the particulars of this specific disease, treatments, and devastating conclusions. He indicated that given her obvious level of (and history of) fear and anxiety, her quality of life was "zero" right now. He concurred with other opinions that treatments would only prolong her suffering. He observed that her mental anguish and despair were significant and would only be exacerbated by continued physical decline if things stretched out further. He said that if the family felt it appropriate, the best option for her would be to increase her anxiety medications, introduce micro-doses of morphine to relax, and stop her from being lost in the eternal panic.

This was an easy and obvious direction for him to recommend. It was easy and obvious to agree as well. Yet, I expect that'll haunt me in some ways for the rest of my life. I, with her sister's agreement, said that was the direction we should go.

Linda's always seemed to have something unresolved that was upsetting her. Worry, anxiety, fear, uncertainty. She wasn't a 'basket case' in the typical sense, but there was a time where my ringtone for her incoming calls were the first lines of the Green Day song of that same name. Because it's what I lived with. And what I tried, for years, to fix. I could never ease her pain. Until today.

I came across a set of candles in the Panorama house today. Nice ones I recognize from early on in our marriage and similar items I'd bought for the kids to give her during the divorce years. All stashed away in a closet, unused, likely unseen, and unappreciated all that time. I felt a profound loss on her behalf as I looked at and even smelled a few. What a waste to have not used them. She could have made daily life the slightest bit brighter has she had taken out and used what she had within reach. Candles, aromas, soaps, bath salts, lotions, shampoos, oil infusion sets, and more. She could have made her space and world a sensory paradise. Why did she choose instead to close that away and live in a depressing level of clutter and squalor? I may never understand this.

There's been a thought running through my head since this all began. At first, it was my karma for leaving the marriage and that I would have to watch her die as a vengeance. Then I started to realize that my penance might be my servitude, wherein my redemption might lie within my being there for her every step of the way. As I focus intensely on each day's developments, I find a reward of intense awareness and recognition of the gift of time, health, and having been spared from such a fate. So far.

I imagine that anybody working in a position in which they are surrounded by death must live in misery or joy. Perhaps the deciding factor is a choice to do so or simply having to. Being this involved has been an aggressively conscious choice of mine, and the impact is an awakening one that has had a profound effect on how I want to approach appreciating every little mundane thing that fills my life. Right now, it's the modestly hypnotic rotation of the ceiling fan above me, the crickets mentioned above outside our window, Jennifer's soft breath against my shoulder, and the sound of Scottie breathing rapidly while softly kicking as he runs in dreams behind my pillow.