December 26, 2012

Time to get with the program

The way is long, where the road ends and the path is a blind love with no knowledge of when we are coming home.

What makes me strong? I don't know, only the things that make me weaker seem to matter. Is there air, where it is that I am going to, because it's tight in here, so small. So desperate for small changes. Every second ticking onwards with time standing still. A vacuum of decrepit illness, pain and my son heaving with the rasping exultation of air not entering his lungs. A domesticated battle of wits, like the dog chasing his tail.

No time for even a shower, no time for sweetness but salty tears waiting in the wings. Collapse and failure, with the circuit reenacted after a fifteen minute nap. The knees buckle under the strain.

Walking the long way, the path that leads nowhere except where we don't expect to be. Coming home when we are already home. Never left, always leaving.

Once again, close to shutting down the stories of  Segev's adventures because the dark seems to outweigh the light. While he has been sick for nearly ten days, prior to that he was already off kilter. The lungs, or rather his dysfunctional one, being the most worrisome thing but far from the only thing.
He seems so alone as he lays unconscious, his saturation bleeding air to the ether without apparent reprieve. We have a new record ladies and gentleman; sixty seven percent oxygen. The time he was measured with only fifty percent does not count as it occurred during an episode of central apnea.

I can barely make out the details anymore, let alone their proper order so I will certainly forgo the regular detailed description I always feel compelled to give. The minutiae of his decline. Once they were the elements of preservation as I championed his physical health with endless hours of technique and physical therapy, study and vocation, pounding the phlegm from his lungs, filling his body with medications to fight the endless demons of epilepsy, curtailing pain and discomfort with investigation, interpretation, hugs and kisses.

Always explaining to him how doting his stuffed toy Pluto is, eager to glean what is going on in his life as he sits perched eternally within hands reach, barking occasionally just like our real dogs. Warming his feet and legs, but not too much and checking his position for the fiftieth time and adjusting his back for the fifty first time so that the pressure is more evenly distributed and he can tolerate the sitting for a few minutes more.
Under my fingers I can feel his spine warping almost on a daily basis and my confused thoughts together with it. A sense, I suppose, of bewilderment.


  1. Oh friend, I am so very, very sorry! "Domesticated battle of wits"- a good description.

  2. Beautiful writing despite your heartache, exhaustion and mental weariness. We are always here, listening.

  3. You walk an arduous path with extraordinary devotion. May you and your son be blessed.

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    1. Another attempt as it is the middle of the night here...our hearts are joined with yours. Sometimes I think that we draw our strength from our acknowledgement of our weakness and our aloneness..ultimately we walk this path alone and it's damned hard seeing what we see; our senses are assaulted by pain. We know that we are doing the good! That is all that counts!

  5. With you along the weary way.

  6. The last paragraph brought me to tears -- knowing how you have brought Pluto to life in addition to your moment-by-moment interventions, therapies, caregiving, vigilance. As Phil says, it is a story of all that is good.