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Thursday, August 25, 2011

Filled with Hope and Fear, part four...

So we drove as far and as fast as we could to get some miles behind us as Teale slept. I texted friends, sharing my anguish about the last few days. Life with Teale is much like a roller coaster ride, there are highs and lows, this had been an intense low. There are times when the rages are few and far between. Then there are times when the rages are often and intense. We were in that cycle, often and intense, the raging was breaking our spirit. Both Mark and I were worn and ever so sad. We were hopeful this would pass quickly. The changes are so frequent with Teale that we know it may only be days of hell, but then again there have been cycles that have lasted months. It is almost like you get used to the bad cycles and stop realizing how bad they are, you just survive as best you can. But then when she finally comes out of a bad cycle, you reflect back and realize that it was incredibly challenging. I seem to never really go completely under, it never brings me so far down that I give up hope. That feeling of hope is always right around the corner for me. I hope the doctors will come up with a better medication to control her mood disorders. I hope she will grow in understanding and therefore her moods will stabilize as she matures. I hope I will learn better parenting strategies to help my daughter. I hope the better placement we were able to secure this past year for her in a warm school will help her feel more accepted and loved by the world. The list goes on and on, I am always hoping for an improved life for Teale. The discovery this past week of her thyroid running high has Mark and I concerned about what medical intervention we will be facing. Will we be adding thyroid disorder to her long list of medical issues. Both Mark and I have hypothyroid disorder, taking synthroid is "easy" enough, but it is a constant balancing act. The beginning was rough, many blood draws, different doses and waiting out the levels to see if the new dose was the right one. We monitor our levels frequently, blood draws every six months at least, to make sure we are on the right dose. Your thyroid being off can cause a multitude of other health issues. As we add thyroid problems to Teale's medical list, I am hopeful we will solve the frequent rages once we have her thyroid stabilized. The fear comes in when I let myself think about how long this will take. Mark and I are all too familiar with being patient when it comes to building up medications in the blood. Medications that need time to get to a level that is appropriate have been added many times to Teale's "list." There are the medications that we monitor often, making sure they are in a good "therapeutic range." Luckily, Teale does blood draws like a champ, no fear, no fighting it, she holds her arm out and stays still. To me this is a gift from God, watching her cooperate with this task many typical people find difficult gives me great satisfaction! We will solve this thyroid issue, we will get our Teale back, but as she wakes in the van on our way to MA, I am reminded that it won't be easy until then. She immediately "starts in" angry and intense, her CD player is "not right." Switching to her personal DVD player only makes things worse. She is unsettled and everything is making her mad. She can't wait for it to load the DVD without freaking out. She is hitting the player, angry and unstable, she has broken many electronics over the years. Her understanding of consequences to such actions is lacking. We try hard to teach this to her. Once she literally ripped a DVD player in half, we used that as a lesson for months. You broke your DVD player, we would remind her, so you no longer have one. It seems simple, right? Well it wasn't, sometimes the rages would take over her and she would need to be controlled by physically holding her until it passed. We would use that example of the DVD as she tried to break other cherished items. I found myself saying often, "if you break that you will not have one, just like you DVD player." We even saved the player, so we could show it to her over and over again. Once we thought the lesson was finally learned, she was given a new DVD player by Santa, with the hope she understood. So as her intensity rises in the van and she starts treating the DVD player roughly, we bring up the old one she broke. Mark and I are probably two of the most stupid or hopeful people you may ever meet. We so believe Teale can learn these lessons, we take a chance at teaching her always. This may not be the right time or place, we are all so vulnerable in the van, if she rages. She may not be in the right mindset, considering all that has been going on physically with her. She is just coming off a strong sedation, she is loopy, fatigue makes her even more unreasonable, but what choice do we have? We are on the road to MA and she loves her DVD player, but she is about to destroy it or maybe even throw it through a window. Her CD player was only purchased a few weeks ago, after an older one stopped working properly. Most likely because she is so rough on them. We are not wealthy people, these are the things about having a special kid that outsiders probably wouldn't get. The cost of replacing items that help Teale most of the time, but cause frustration much of the time! Somehow, we get through this wave. Somehow nothing goes through the windshield. Somehow we continue the journey toward MA and the people who love us. ~to be continued~

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