September 17, 2011

warning signs

Segev has fallen asleep, for a morning nap. The need for constant tugging and rearranging of his neck collar finally subsiding as he relaxes. What a great moment of serenity that he doesn't have to fight  his own breathing. What a moment of fulfillment as I can ease back into my chair and drink in the beautiful calm. What a bunch of bullshit.

Honestly I have felt proud in being able to see light in these little moments of reprieve or accomplishment. How a smile can ease my anguish and fill me with reneewed vigor. Certainly seeing a clear reaction from muddied water is cause for joy. Just as the ebb of a serious fever, return of proper oxygen levels, the temporary cessation of a series of seizures are seen as a kind of triumph.

How sad that these are the things we can hope for, and nothing more.

But then I fear that if I don't see these accomplishments as something immensely positive I have not learned the spiritual life; I have not heeded the lessons and grown as a human being. Or the opposite, if I become bitter at my lot I am equally guilty. Let bitterness grow into livid cynicism where you are not only resentful of not having help, being stepped upon by life because you choose to care for your child, but come to believe no one wants to help you and that all help is useless anyway, then you have really lost all credibility.

Fortunately I don't feel those things, neither frustration at having to watch minuscule signs of life and communication ebb and flow in my boy's body, nor with lost opportunity on a personal level.  If I weren't doing this life, I cannot imagine anything which would be as meaningful to me or as important.

But firstly, the contrast that this life presents to everything one grows up seeing and knowing is stark indeed and there is an absurdity in the seamless transition of relating to normal everyday things, barely even feeling as if a switch had been thrown when really your psyche can resemble a war zone, if not disenfranchised from normalcy then confused by it.
Each incident with your child, each new episode or even the umpteenth repeat of known discordance can lead to either a moment of quiet or relative respite or hospital, suffering, extreme fatigue. If not now then in a few days time. You take multi tasking to a whole new level.

And  parents who cannot maintain normalcy, be it for whatever reason, they are to blame? "No one is trying to place blame here, Eric". Yes, no one is pointing their finger (no one that matters anyway) and saying, "bad parent!"  But we worry that we are a bad parent because when you have to look with a magnifying glass to see something, just as some myopic might, you will miss a significant part of that constellation of normal life which is the very thing that should anchor us in a balanced state of mind.
Or at least the dichotomy struck by this strange life with a severely mentally and physically compromised child should make it clear that we have such a state of mind, not to lose sight of it.

I know one thing, it can't be done alone. I know because I've tried, with a modicum of success, but since there are no absolutes here but death, we have to try and understand our situation, in part by describing it as some do through their blogs for example, and learning how to deal with this difficult life in a shared fashion. So obviously it seems more important to me than ever to reach out and connect to the right people, listening, so as to hear.


  1. I'm hearing you. I understand. It's a fine line we walk on.

  2. I also hear you clearly. Normalcy for us appears to be the moments when our kids drift oft, be it into a daze or sleep or a place of serenity. It never lasts too long, and at times, it's a bit unnerving and our minds prepare us for the calm before another storm. I treasure and I am sure that you do also those moments of spiritual and physical respite. Despite our kids abilities to receive or express, I think there is a conscious element in them which somehow intentionally gives us a brief but very meaningful gift. It's perhaps their way of saying, "thanks, dad".

  3. Hmmm. I hear it. I feel it. I'd say we connected. Come check us out too - maybe we are to be connected to pull each other through.
    Kristen @

  4. I have nothing to say, you say it all for me. I am 17 years into this and still can't seem to find the right words to express what I feel most of the time. I don't realize how crazy I must look to the outside world, doing so many things by myself and still feel I'm not doing enough. I found you by accident, but everything I read just resonates....