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Tuesday, August 23, 2011

Filled with Hope and Fear, part two...

And so the drive began. Gwenn our eight year old made a fort in the way back of the conversion van we bought just for Teale. She is able to hide under her blanket, watching a movie on her personal DVD player and probably she is pretending her life isn't as crazy as it is. Gwenn takes all of Teale's behaviors in stride, Mark and I do our best to protect her and our son Beau. It is tough though, Teale can embarrass us all in public or when one of them has a friend over and she explodes. We are all deeply effected by Teale, we all have learned strategies to deal with her and try not to set her off. Beau isn't on this trip, varsity high school soccer try outs have us leaving him behind. This breaks my heart, as he and I are close and often he helps me laugh when I want to cry. Beau uses humor a lot in our life with Teale. He imitates Teale and if she is in the right mood, even she will laugh at his impersonations of her angry. The van is big and gives us the needed space we couldn't do without at times. This is one of those times I am thankful for the big red van. Often these days it sits in our driveway, Mark would like to sell it, I'm not so anxious to do that. Teale has taken over the front passenger seat, she sits there now, me in the back. I no longer sit next to my husband and have those long drive, intimate conversations. This is something I miss deeply, but as is life with Teale, I concede to her desires often, saving my energy for when there are bigger battles to fight. In the middle seat of the van I can help everyone. I am the gopher of the trip getting drinks for Mark ahead of me or Gwenn behind me. I work hard the whole drive to keep peace by listening to Teale and being alert to any rising issues. She is on her personal CD player, headphones in, listening to Justin Bieber as we begin the drive. The fit we just experienced still fresh in our minds, fear still wrecking me as we pull out of the driveway. I text friends, people who care and get my life. Texting my friends who have an explosive kid or ones who just love me. I am needing to feel connected to the outside and feel some of that love. The raging wipes me, I'm scared but try not to focus on that. Teale has been "off" all week, vomiting one day, not sleeping at all one night, raging often. We had a blood draw done last Sunday, fearful she was in a Lithium toxicity because of unusual vomiting. It wasn't like she was sick, no fever and no consistency to the illness. She woke up vomiting, wandering the house as she left vomit behind. She doesn't have much concept of where to vomit. She walked to get away from it, like she was trying to find comfort in another room. Me literally catching it in my hands. She was then fine again, wanting to eat and drink, I was wary, but she is tough to stop in such situations. So for hours she was fine, but her comfort was missing, she seemed to be trying to feel better by trying many places and activities to help her feel better. Out on her hammock swing, she did it again, covering herself and her coveted CD player in vomit. The blood draw the next morning showed elevated thyroid levels, warranting calls from both her psychiatrist and pediatrician on Sunday afternoon. A repeat blood draw with more testing would be done on Tuesday. This one would confirm the issue and another blood draw to gather more information for her newest doctor, an endocrinologist, would be done on Thursday. Life with Teale. Just when we think her medical issues are all figured out, not solved mind you, but at least managed, something new gets thrown our way. The Thursday blood draw was looking for more information as to why her thyroid is running high, but results are still not in. The thyroid running high may be causing this increased mania though, so we are anxious for the information and a plan. As the five and a half hour drive begins, I'm texting friends, Teale is listening to Justin, (or Yustin, is how her hearing impaired ears hear it) Gwenn is watching a movie in her fort and Mark is driving. Mark and I are  both tossing the fit around in our head, trying to make sense out of something we can't make sense out of. We talk, but are careful as to what we say, Teale is astute to our discussing what is going on with her. We know this trip is a huge chance, but it is what both girls cling to for months. This vacation often gets us through as the long winter takes over in Upstate NY. We will remember the fun we had, talking about the family, the tubing, water skiing, the music and the laughter, but as we drive, all I cling to is getting there safely... ~to be continued~

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