Friday, August 29, 2014
Wednesday, August 27, 2014
Monday, August 25, 2014
Giant Ball of Rubber Bands
This is how I sometimes see myself. A big giant ball of rubber bands all wrapped up tightly squeezing and squeezing. Then someone pulls one way, and the other. And I am just yanked back and forth, as I fulfill everyone elses needs. I feel very loved by my children, but in a lonely relationship with no communication, so if you watched my videos, although I don't discuss it, it is heart breaking.
But Sarah has a way of just CRACKING ME UP when I need it the most. We really do have some fun sometimes. Even if its only Target.
Thank you for coming to Daniel's blog!
Tuesday, August 19, 2014
Monday, August 18, 2014
Thursday, August 14, 2014
EEG and when a test goes backward
It is August 14, 2014 and Daniel has been in patient at Yale New Haven Children's hospital since Tuesday morning, August 12. He has a head wrapped up in gauze to protect the bunch of electrodes glued firmly to his head. He is here because we wanted to record his neurological state when he experiences what I call one of his "hypertonic" episodes. And in true form, he has been completely relaxed and calm during the entire study.
I never thought as a Mom that I would sit and silently wish for my child to have a melt down and go wacky. But if he did, we would have been out of here. I get too curious here, about what is going on with the baby down the hall being rushed into the PICU. The hospital is a weird place. A blend of routine, mixed with emergency, mixed with exhausted parents and bored administrators. When I went downstairs to get a sandwich yesterday, I was standing next to some "important" looking doctor types discussing grants and blah blah blah and thought how ironic that it all seemed so "corporate" in their words. I was anxiously waiting for my sandwich because I had no breakfast, or dinner the night before. I should have packed food. It gets too expensive. With my infected sinus pain, and exhausted brain, I stood next to these two well dressed, good smelling, seemingly very intelligent looking men. Talking in a language I practically didn't understand.
Daniel is here because he has a brain deformity that I don't understand. That no one can explain it fully to me. When he goes into these freak out episodes, I am the one who bears the blast of the stress of it. And he has to experience it. But here, in this controlled environment, he just lays there watching TV and looking at the ceiling with a glazed sleepy look on his face.
I am so tired, and wishing I could just ask my child what is wrong. Instead, this sophisticated test of his brain, created by grants probably from some big important doctor people like those guys in the sandwich line, isn't doing what it should. Or, he isn't doing what they expect him to do. But kids like Daniel don't perform on cue. They are a mystery. It's part of the journey, the unraveling of mysteries. Or the continuation of the wonderment that is a deformed brain.
Julie Hasselberger
Aug 14, 2014
I never thought as a Mom that I would sit and silently wish for my child to have a melt down and go wacky. But if he did, we would have been out of here. I get too curious here, about what is going on with the baby down the hall being rushed into the PICU. The hospital is a weird place. A blend of routine, mixed with emergency, mixed with exhausted parents and bored administrators. When I went downstairs to get a sandwich yesterday, I was standing next to some "important" looking doctor types discussing grants and blah blah blah and thought how ironic that it all seemed so "corporate" in their words. I was anxiously waiting for my sandwich because I had no breakfast, or dinner the night before. I should have packed food. It gets too expensive. With my infected sinus pain, and exhausted brain, I stood next to these two well dressed, good smelling, seemingly very intelligent looking men. Talking in a language I practically didn't understand.
Daniel is here because he has a brain deformity that I don't understand. That no one can explain it fully to me. When he goes into these freak out episodes, I am the one who bears the blast of the stress of it. And he has to experience it. But here, in this controlled environment, he just lays there watching TV and looking at the ceiling with a glazed sleepy look on his face.
I am so tired, and wishing I could just ask my child what is wrong. Instead, this sophisticated test of his brain, created by grants probably from some big important doctor people like those guys in the sandwich line, isn't doing what it should. Or, he isn't doing what they expect him to do. But kids like Daniel don't perform on cue. They are a mystery. It's part of the journey, the unraveling of mysteries. Or the continuation of the wonderment that is a deformed brain.
Julie Hasselberger
Aug 14, 2014
Wednesday, August 13, 2014
Sunday, August 10, 2014
Nose Doctor!!
Sorry my blog entries have all been video blog entries, I will be making attempts to write again. Have a wonderful day!
Saturday, August 9, 2014
Tag Sale
Oh I don't think I love tag sales anymore but it turned out to be ok. Ya do what you have to do, you know? It's a crazy ride this thing called life. I still have furniture that needs to go, and we never found the person who bought the bin of barbies.
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Friday, August 1, 2014
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