Goals

Anyone with a special needs child understands that their care is entirely goal oriented. From the very first moment goals are set for survival. They wean off the vent, oxygen, begin feeds, and the all important weight goal.

Every single meeting or evaluation requires me to "state my goals for my child". When they were two, I remember being in a meeting and being asked what my goals were for them as adults. Really? My 2 year old daughters with CP? The children I still cry over every day? I don't know how I see them--I didn't see them like this at two, but I still managed to come up with a meaningless adulthood goal.

Goals met or not met drive education, health care, therapies... Every aspect of life is based on achievement. CP itself is diagnosed by lack of skill development. Goals not met. Wild and unreasonable excitement when they are met, or even surpassed.

The last year and a half for Abigail has been focused on feed rate goals. Her ability to maintain her own life has driven all of our treatment for her. We left the hospital this time without any goals. None. They didn't ask me to work on rate. 40 an hour for a few hours a day provides some protection for the liver while on TPN. They didn't ask me to try to decrease IV fluids. There was no timeline on TPN. They gave us what they could to make her comfortable and we brought her home.

Suddenly we live in a goal free world, and I am lost. Her comfort is our only concern. Her belly is functioning even less. When the nurse came tonight, her heart rate was 48, but that's ok for her now. Words like palliative care are popping up. One side of my brain completely understands what is happening. The other side says that side one is exaggerating, and Abby is going to be fine. It depends on the moment which side I believe.

There has been a definite, palpable shift in Abigail and the way we look at her. I thought starting TPN again would be like last year. I expected it to quickly stabilize her and then we would decide what to do. That is not happening. Everyday she seems just a little weaker.

I still believe she can turn around. I wake up every morning and don't even open my eyes without praying she would feel good for a single day. I just keep thinking that the right formula, the right med combo, the right words to pray, the right something will be what finally makes a difference.

Goals. They've been our friend and enemy throughout this journey. I'm sure that I'll still manage to find one somewhere. I didn't realize how comforted I've been by knowing where we at least hoped to go.

I have two more posts this week about where we are with Abby, and next week is Sarah's 12th birthday and the story of what a miracle she is.


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