16 January 2012

Hitting the wall today. I find it very hard to even write full knowing that I’ve said the same things before. How many times? But also that the writing doesn’t really help. It is a spilling of the contents of my brain and heart but the well simply fills up again. Pain, grief, loneliness. The pit of despair.

Today is Julia’s birthday.

I did not plan well. Did not feel like planning and could not move myself to insist on planning. Is it the lack of planning that began my downward spiral or would I have been skinny dipping in despair with the most elaborate plans?

I did not plan a party for Julia. Did not do the work necessary to get a few kids together. I tried. Lamely, at best. Oh, I talked to one of my friends with kids to see if they could come over, suggesting a late breakfast, brunch kind of thing. She had her own things going on, but more importantly, I did not say, really, please, I need to have something planned for Julia and I was hoping for your help to kick my ass in gear. Had I asked for that kind of help . . .

I did not.

And I did call another friend with the suggestion that we have a “family” birthday dinner. But I called late and did not follow up with a second call. She just called back today.

And my mind goes back -- slammed back is a more accurate description -- to two years ago. David’s first hospitalization, the planned party for Julia that one of her therapists helped me with because David was in the hospital, the saving of a few last presents and some cake that we took to the hospital to open and eat with Daddy. To include him because . . . well, not because this was Julia’s last birthday with her Daddy. I was hanging on to the family life I wanted her to have. I was insisting on it.

Now, I think of it as the beginning of our staunchly brave period. We were in fight mode. We were going to beat this thing and live a wonderful life. Happily ever after.

Oh, god, I think I wrote all of this last year. I am not going to check but I know that I was in a tail spin around Julia’s birthday after have a pretty good Christmas holiday and new years.

Forgive repetition.

These are/were our private holidays. It was never sad or depressing to make a cake, have a special dinner, light candles and sing with three of us. We did it countless times for Cheshire and it is so very okay for Julia. But the two of us? It feels utterly depressing and lonely to have Julia’s birthday alone with her.

Julia has a lot of therapy today. A day off usually means getting in extra hours to make up for missed sessions on other days or to pad the hours a bit in the beginning of a month -- we need too meet our therapy hours each month. So, I brought the cake to our therapy team meeting. Julia was thrilled. We wore hate and sang to her. We ate cake. And Julia loved the carrot cake.

And now, I am home, she at therapy. I am icing 28 cupcakes for tomorrow.

Much later.

Julia and I are in bed. I’m waiting for her to fall asleep. She said she had a wonderful birthday, maybe her best one yet. I am going to take that at face value. Appreciate that she had a good day, a good weekend, and move on.

Two years ago, after David was released from the hospital, we began to have a visiting nurse come three times a week to check on the pump that delivered drugs constantly and straight into his heart. This was the procedure and the medication that kept his heart going from January until March. So, along with the therapists who were in the house for Julia every day after school, there was now a nurse coming around super time to change lines and batteries and check on the pump. The front door was unlocked and people knocked and came through. Those were days when Julia’s behavior with her therapists could be quite challenging. She could be loud, she could oppositional. Another person with another set of priorities and another set of tasks added to the chaos.

But after the therapists left and after the nurse left, the three of us would set down for dinner. I don’t remember it as straining to keep our life normal but now when I think of it I cannot see it any other way. I see it as fighting for our normal, as finding new normal, as taking it all in, in big gulps, and insisting that everything but that dinner at the end of the day would disappear in time and we would get back to our dream of a normal family life.

And now, I am so far from that dream that it seems impossible that we lived it for so long and also that we could have expected return. Again. We did not understand how changed we were. There was a cognitive dissonance, or rather I was not aware of the cognitive dissonance that was entering the carefully constructed and maintained box which was our family life.

In the Wikipedia definition of cognitive dissonance, it says “Cognitive disequilibrium is a closely related concept in the cognitive developmental theory of Jean Piaget: the inevitable conflicts a child experiences between current beliefs and new information will lead to disequilibrium, which in turn motivates the child's progress through the various stages of development.” This explains what I am perceiving about that time even better. And I am hoping that the subsequent disequilibrium that surfaces from time to time these days will motivate my progress through my own further development.

And just to note, what pulled me out of my pit, was a phone call, talking with Amy. Just letting the self-pity overflow and venting some and having a friend be there, commiserate some, share a bit of her day, and listen.

The pit is filled in for today; the boat righted. And now, on.

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