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Tuesday, August 30, 2011

Filled with Hope and Fear, part five...

The questions that we can't answer start.I hold my breath as Mark answers them, knowing one "wrong" answer will throw her into another rage. The stress is exhausting, so to take my mind off it I text friends. Listening to the questions being bombarded at Mark all the whole. Sometimes they are sweet innocent questions, she is deaf, her world is often not clear to her. Other times it feels like a game she is playing and we can't win. Every answer we give is wrong and she won't give us even the slightest hint what she wants us to say. One day we were coming home from a soccer game, all five of us in the big red van. Teale had the front seat next to Mark and was listening to her personal CD player. She had on headphones and she has her own case of CD's, ranging from her cousins singing to Justin Bieber. As she listened she turned to Mark, asking who is he singing to? Not knowing who she was listening to, Mark took a chance and answered "you." It was the wrong answer, "NO" "NO, he not singing to me!" she screams, the switches have been quick and intense. Teale starts slamming her CD player, Mark asks questions so he can answer her "correctly" but she is already gone and now we are all in danger. She threatens us, angry, anything in the van near her may get thrown. Mark scrambles to figure out a plan, a place to hopefully regroup. She is hitting him and pinching his arm, I step in, so he can drive. Scenes like this are common in our life, now she is angry at Beau for "looking at her" he is trying to protect himself from having something chucked at him. Gwenn is in the way back, so she scoots behind a seat. Beau jumps back there also, my biggest fear is she will hurt one of my kids, severely. Her aim is amazing, she could throw something at our heads with exact precision. She doesn't have the thought process to realize you can not undue an injury like that. Ironic, I have fears of her causing brain injury to one of us, when her brain injury would be the cause. Well, this time, on the way home from soccer took some work to get through and a stop at McDonalds for frozen strawberry-lemonades. We got home safely, but not unscarred mentally. We all react differently to those incidences. I feel fried by them, especially if they have been coming often. Usually though, once we are safe, we all use humor, imitating the situation and laughing at the ludicrousness of it all. "NO!" "NO, he not singing to me!" Ugh, it really does feel like we are living as entertainment for someone watching us. So as Mark tiptoes through her questions on our way to MA, I look at the highway we are on with no area to pull over. The high rock walls where they cut through the hills to make this highway make it impossible to pull off to the side. She melts down here and what will we do? We are close to our destination, about an hour or so to go. I pray that the edginess she is starting to show calms and we get there, but I know getting there doesn't solve it all. There are fears about "there" also. About effecting the family's time, about Mark getting to enjoy his family and Gwenn too. Will Teale sleep ok in the tent we plan on putting up on the property or will we cause no one to get any sleep? My head spins with concerns and questions. I wonder why I came? Maybe I should have stayed home with Teale and let Gwenn and Mark enjoy this weekend alone? But Teale LOVES this weekend, she loves her cousins and the boat rides. She loves the music that the family will play around the campfire, she just loves the time at Uncle Richie and Aunt Jackie's. Teale has so little joy outside of home. She has no true friends that she hangs with. She hardly ever plays with others, adults are generally her best friends. The cousins get her, they are the closest thing to friends she has, along with us. This is why we came, this is a memory she will cling to and cherish all year long.

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