|Rob's Hand (M.A. Reilly, 2016)|
Rob has always adored our son, Devon. He still does. But as his illness progresses, he is acting in ways that are at times both gruff and cool. At first this was directed only to me. But earlier today, Devon was lightly rubbing Rob's shoulder--trying to soothe him--and in front of others, Rob curtly told him not to touch him.
We are a family who touches. We have taught Devon that and I watched as his face shuttered closed and he left the room. A little more of my heart broke, knowing he was hurt. Later we would sit on his bed and he would let me hold him as we talked about why his father was withdrawing. It's one thing to read about the stages of dying and quite another to experience them via your husband or your dad.
Dying is a complicated matter, especially when for months there has been an active fight against it; a herculean effort to curtail its progression.
Surgeries. Radiation. Late night prayers. Chemotherapy. Antibiotics. Transfusions. Bargains with God.
Now death reveals itself as the natural end and I feel as if I have been turned upside down. I now understand that my initial reluctance to give Rob morphine every 4 hours had more to do with my reluctance to lose him. I still want a miracle. Morphine is an odd kindness. It soothes him, eases his pain. And Rob is a man in need of soothing.
Later, as Michael makes a cup of coffee in the kitchen, I talk about some of what I am realizing and how we all worked so hard to protect his life and he says to me, "Now you are working to protect his death, his dignity."
Protect his death.
Yes, there is that. I only have to remember these last few weeks in the hospital to understand what protecting his death might mean and the travesty that forsaking its protection would render.
We are twisted in each other's lives. More möbius strip than straight line. More Klein bottle than jug.
And so is it any wonder that Devon and I feel so lost, so lonely, and yet we so deeply love Rob that bearing his pain, privileging his comfort above our desires, and witnessing his end is honorable, right, and necessary.
And still the pain steals my breath.