the monastic life

It’s hard not to notice that we haven’t written about the holidays at all, but it also sort of goes without saying that the holidays don’t quite feel like the holidays when life is spent in the hospital. While Christmas was filled with more generosity than I ever could have imagined, with copious gifts, special decorations, and even carolers, the day was actually a pretty rough day for poor Caemon and thusly for us as well.

Now that New Year’s Eve is upon us, I find myself once again far from a celebratory space and honestly more bewildered that it isn’t still August 19th, that somehow the world has kept spinning for 134 days when in my mind, everything stopped back in August. I do warm to the idea of new hope in the new year, new cells in the new year, no cancer in the new year. These are bright and pleasant thoughts, but they can seem fairly out of place when my heart is forever in August. Regardless of where my mind or heart may be, a new year dawns tomorrow, and I hope that with it comes all that a fresh start should.

Perhaps a fresh start begins with quiet.

For the past few days, but for the beeps and alarms, our hospital room has been very still. It seems our little monk has decided to take a vow of silence. The spit-holding that I mentioned a few days ago has reached fairly epic proportions, and I am reminded of gurus and monks who undertake extreme physical challenges to gain higher enlightenment. While I wouldn’t go so far as to say that Caemon is a young Lama, he is exhibiting signs that the monastic life could suit him. Some exceptional nurses have tried every tool at their disposal to help Caemon relieve himself of his mouthful of saliva. He has gladly helped suction saline “saliva” from the mouth of a baby doll; he has become intimate friends with a suction regulator pump (which he cuddles, diapers, and puts to bed); however, he has not allowed anyone to aid him in the removal of the contents of his mouth. Because it is impossible to speak while enduring such an act of asceticism, Caemon has opted out of spoken language. He speaks with his eyes, occasionally motions to something he needs, but will not risk opening his mouth. We have missed him so much these past few days, but he has indeed withdrawn into his cocoon to get through these most difficult times. While it has been frustrating for those of us around him to see Caemon opting for a path of such discomfort, I cannot help but admire his resolve. This child is strong in more ways than I ever imagined.

Fortunately, with lessened pain, the ability to swallow comes easier, so Caemon’s morphine levels have been increased again, and it finally feels as though we are getting on top of this. Yesterday, he began to attempt to speak again, even agreed to swallowing a little here and there to make it a bit easier to understand him. Our little monk is finally emerging from the quiet.

The last few days have continued to be challenging with fevers, still some worry about the liver, and  persistently low platelets. Most days, Caemon sleeps a great deal, and we find ourselves missing him so very much. Yesterday was one of those days, but by evening, after Caemon had had a long nap, we started to see some signs of our boy’s return. He spoke a bit more, cooperated as much as he could with a bath, and eventually came to sit on my lap in the big chair by the window while his linens were changed. We prolonged this snuggle time as he tried to tell me a few things. It was difficult for him, but he wanted to engage. I asked him, “Caemon, do you know you’re going to start feeling better soon?”

He smiled, nodded, and said, “Uh huh. I will!”

“Do you know that as you feel better, you’re going to start to eat again too, maybe even have a milkshake?”

He bounced on my lap, again repeating, “Uh huh!”

I told him his seeds were growing, that he would soon feel like himself again, and his energy became so bright and buoyant. He knows that he is on the path to recovery, and even in the midst of a fever, he feels precisely where he is in this journey. I can’t tell you how much hope that gave me. Caemon knows that his body is healing. I am not sure he has always known this. He has been miserable, even afraid at times, but he doesn’t seem to be in that space anymore. One wonders if this trial he put himself through helped him find some answers. Maybe we are raising a little monk.

Tomorrow is the first day of a new year. Instead of some empty promises to exercise more and eat healthier foods (although we’ll welcome the opportunities!), I think our family will resolve to live, to thrive, to come through this challenge of all challenges grateful for every day we see through the eyes of our most enlightened little boy.

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