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 We have missed him so much these past few days, but he has indeed withdrawn into his cocoon to get through these most difficult times.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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9 thoughts on “the monastic life

  1. Dear Caemon, Timaree and Jodi ~ Sending the Brightest Blessings of Love, Light, Joy, and Healing to you for the New Year. So be it. ❤ ❤ ❤ Love, Jeanne Marie

  2. Burps and farts are funny–This is a truth of life. 🙂 Glad to hear Caemon’s getting some relief. As always, sending our good thoughts your way. Continue to stay strong, Caemon, my man. And here’s to a bright, healthy, and happy new year.

  3. Well, we’ve always known Caemon is a very special soul. This has shown itself to be true in some unexpected ways, for sure! My heart aches for how hard these past days have been on all of you, and my heart dances to hear that Caemon knows he is healing and will be feeling better soon. Thank you for your beautiful and honest sharing, my friend. Love to you all.

  4. I read your heart-wrenching writings from afar – known only through Carol – and I feel so humbled by the towers of strength you all are. May 2013 bring you much, much brighter news. Your little boy surely knows his path. Thank you so much for sharing.

  5. I have met some very strong people in my life, but not many can hold a candle to your strength, Caemon. You truly are a Superman and may each day of your recovery bring you more smiles, healing, and extra super-powers!

  6. Thanks for sharing this journey with us! I am amazed and filled with love as I read of all if your strength, courage, and hope. You are in my thoughts, wishes, and most of all in my heart.

  7. Marble mazes are awesome!!! This new year will bring Caemon’s healing and health, I hope it also allows time for you to heal as well Timaree and Jodi, for the trauma you all have endured is monumental. I wish all three or you smiles, full tummies, carefree laughter, healing and health. Our love and best wishes to you.

  8. Beautifully expressed, heart-wrenching!
    I am familiar with this kind of epic resolution with my grandson. He was a severe preemie, and spent his earliest years enduring what seemed like endless procedures, IV’s, CTs, surgeries, treatments. We all were amazed at what a “good boy” he was about it.
    Well, at some point he had had enough, and decided he wanted power over what is and isn’t done to him, and now he’s the opposite of acquiescent.

    He will not under any circumstances let me put a simple digital thermometer in his mouth, and he won’t allow dental work (he will bite and scream and writhe). There are other necessary things he wouldn’t allow when he was last in the hospital. No logic penetrates.

    The result is that he has to be sedated fully in order to have dental work done, and it’s hard to monitor him. Anyway, point is that if you measured stubbornness per pound, my 40 pound grandson would be a real champ.

    I had never thought of the life of asceticism. You guys are so amazingly positive. It sounds like Caemon is much more sweet about it all than Devin. But any child can reach a point where enough is enough and they go into a mode where they do what they feel protects them from whatever they can no longer tolerate. And that’s OK.

    Sometimes there won’t be harmony and understanding, and that’s natural and to be expected.
    Sometimes the sick child will be scared and act out, no matter any words of comfort. You three are inspiring to the max in your success at keeping the focus on healing. I just don’t want you to feel you are failing if you have bad moments. It’s the nature of the situation.

    Bless Caemon …

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