Thursday, April 10, 2008

Full Catastrophe Life

In "Zorba the Greek", Zorba is asked if he's ever been married. His
response, (paraphrased by Jon Kabat-Zinn in his book "Full Catastrophe Living")
"Am I not a man? Of course I've been married. Wife, house,
kids, everything....the full catastrophe!"

From JKZ, "It was not meant to be a lament, nor does it mean that
being married or having children is a catastrophe. Zorba's response
embodies a supreme appreciation for the richness of life and the
inevitability of all its dilemmas, sorrows, tragedies, and ironies.
His way is to "dance" in the gale of the full catastrophe, to
celebrate life, to laugh with it and at himself, even in the face of
personal failure and defeat. In doing so, he is never weighed down
for long, never ultimately defeated either by the world or by his own
considerable folly.

"....ever since I first heard it, I have felt that the phrase "the
full catastrophe" captures something positive about the human spirit's
ability to come to grips with what is most difficult in life and to
find within it room to grow in strength and wisdom. For me, facing
the full catastrophe means finding and coming to terms with what is
most human in ourselves. There is not one person on the planet who
does not have his or her own version of the full catastrophe.

"Catastrophe here does not mean disaster. Rather it means the
poignant enormity of our life experience. It includes crisis and
disaster but also all the little things that go wrong and that add
up. The phrase reminds us that life is always in flux, that
everything we think is permanent is actually only temporary and
constantly changing. This includes our ideas, our opinions, our
relationships, our jobs, our possessions, our creations, our bodies,

My friend and fellow blogger Madelyn mentioned this phrase to me one day and I said, "That is great! I love it!" She gave me this quote and I really feel a connection to it. As I wrote last time, I know how good my life is, despite the many (MANY) issues we have had and have lately! I continue to try to figure all this out, much as I tried when Nick had his accident and we weren't sure what would happen with his brain. But I don't think I truly understood parts of what could have happened, or maybe I was just selective in what I could handle. I drove to the therapies and prayed he would heal, be fine. I prayed his memory would eventually work its way through. That mood swings would disappear. That he would not ever experience a head injury again--or at least for the 6 months the doctors shuddered at. But I always felt he would heal and be okay. I always felt as long as he did his exercises he would be good to go. He is young, afterall. Bad things don't happen to young healthy people.

Even with Roger's head injury--yup, we collect brain boo-boos here--I feel that as frustrating as it is, he WILL be okay. I tell him I see no difference--he was just as distracted and forgetful, yada, yada beforehand anyway! ;-D

This time is different. I have flashes of everything being okay. But I also have nasty reality checks. We have PT two times a week. Speech increases next week to two times a week. OT will be evaluated. Next month Kath will be tested to see if she is aspirating her food with a videoesophagram. She will have a visit to an eye specialist to see about her vision field cut; the neurologist to see how she is progressing; and her regular ped dr for normal progress checks and immunizations, and most likely a developmental ped to keep all the developing into perpspective, too. I think she will be fine, but I see 'fine' as different now. With Nick I figured he would eventually get back to normal. There is no normal here in Holland.

I am not trying to sadden any of you or make you think that my days are filled with a morbid sense of dread. God, no! How can anyone who hangs out with two gigglepusses like Kath and Alex have time for THAT!? But I am --especially when the house is quiet when everyone is asleep--trying to put everything into its folder in my brain. Sometimes I feel I have a brain injury since I struggle to figure it all out.

I think the hardest aspect for me to accept is that I cannot 'fix' this. I can't just try a differnt parenting strategy and voila everything is good. Why the hell not?! Hurumph. Instead I read. I write. I study the therapists. I contact other parents through the list-serve, talk to friends who have struggled too and I try to absorb everything and I try to make it part of my day in dealing with the CP portion of my goofball daughter. And I try to keep in mind that this chick who should be able to walk . . . doesn't know she should be able to do all this much easier than she is. She doesn't know that other kids don't have to reconstruct pathways in their brains to learn. That other children don't need the constant repetition and practice to get 'it'--regardless of whether the 'it' is a reflex or a learned action.

Not yet anyway.

So while she is young I can encourage and support and try to show her that giving up is not an option. That even though she will have to work much harder at ordinary life, she will have an extraordinary life.

This girl already survived a stroke!

So as I celebrate her pushing a doll stroller this week (by herself!) and at the same time I get angry and upset at how unfair it seems that she has to work so damn hard, I will try keep in mind in this full catastrophe life of the miracle that is before me. That Kath is not weighted down in her heart because she may be tripping and falling, she is jumping back up and celebrating her accomplishment of succeeding a 'today' activity! An activity that was harder, so much harder or out of reach, just yesterday! She stands up and dances--even when there isn't any music! This girl is celebrating her life.

As are we.

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