Sunday, November 27, 2011

My bad behavior

I can feed Lucy a zillion meals and keep my cool, but then eventually the challenges that are involved get to me and I let my frustration out. Not necessarily aimed at her...mostly Chad I guess. Feeding Lucy a meal involves a lot of sopping up giant puddles of liquid that she has lost from her cup, and then running to the sink repeatedly to rinse the sloppy rag. Then we are trying to learn to use utensils, which generally goes well, but I know that "well" is a subjective term. She is rocking the fork; after we load it for her she can get it to her mouth and most of the time gets the food off. Sometimes she just let's it dangle in her mouth until it falls off or as she's pulling it out her arm jerks and she wails it on the floor. The spoon work is much messier and almost entirely hand-over-hand with Lucy often dipping her entire hand into the bowl or throwing the spoon on the floor. What makes it hardest for her, I think, is that she still doesn't have total control over her arms and hands, and fingers and this hinders her progress at times. So I know this and I try my very best to be patient and teach her how to use utensils in ways that I think she can learn best, but this morning her suction cup bowl would not stick to her tray and it was just the last straw for me! Every time she would take her spoon away she would either drop her fingers in her cereal or tip it over and after trying and trying to make it stick I just gave up and fed her the cereal and felt like a big failure the whole time. Stupid frickin' suction cups! Why do they even exist? They don't work for anything! And then I made her a smoothie which she loved, but slopped all over her face, through her hair...basically just all over everything. And then I was a bitch to Chad because I was so frustrated.
I find it hard to be able to share the privilege of being frustrated about things that are frustrating because I am primarily responsible for Lucy's care, in that I am home all day with her, and I am the leading expert on her every move. But it's not like Chad doesn't help take care of her because I know that he probably helps a whole ton more than what some other dads do and I am super grateful for that. So then when I go into these pouty fits where I think I should get to have a monopoly on frustration I briefly feel justified, but then I feel bad and selfish, and irrational.
Lucy had her EEG and the doctors saw very strong seizure tendencies in her brain. That now means that she has to have an extended EEG to determine if there are seizures occurring so that we can start her on medicine if necessary. Also, we are going to Danville on December 5th for the MRI and she will have to be sedated for that which terrifies us. Then also her pediatrician is calling Children's Hospital of Pittsburg on Monday to try and get her into the neurodevelopmental pediatricians sooner than we could get into the ones through Geisinger. AND, the neurologist also made a referral for Lucy to be seen by the geneticists at Geisinger. So I am glad that things are in motion and that the doctors are now really making good plans for finding out what all is gong on with her, as it is obviously more than just hypotonia, but holy crap it is overwhelming. And I know that what Lucy needs is for me to be strong and rational, and to accept that we have a situation and that we just need to find out what it is and what we need to do to help it. And I can do that, absolutely, but it is exhausting. I am mentally and physically exhausted and then sometimes, out of nowhere, I break down and cry and get mad and sad, and then pull it back together and keep on moving. Last weekend I cried because of a music video by Taylor Swift that they showed on 60 minutes. The week before that I was looking at walker options online and lost it. I didn't cry this morning, but that bowl refusing to stick to the damn tray was just more than I could bear! Like there is already quite enough to worry about without this stupid bowl failing me. So instead of taking that one little inconsequential thing in stride I acted like the world was ending. But I'm probably better now for today.

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