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Tuesday, September 13, 2011

Filled with Hope and Fear, part nine...

Teale managed to calm and I talked her through the next steps we were going to take. Somehow I got her to Mark's cousins house to go to the bathroom before returning to the tent. At the tent I found Mark out cold, exhaustion had kicked in. Days filled with emotion and physical confrontations are the hardest of all. Everyday with Teale has conflict, it is her nature to try to control. But it is the days of raging often that really defeats us. I dressed Teale and was able to get her into bed fairly easily, explaining that I needed to go to the house to get myself ready. It was risky leaving her not yet asleep, she may rage again, which would set me back at the beginning of all I had gotten through. But I needed sleep badly also and a bathroom to remove my contacts. As I unzipped the tent I held my breath and prayed, hard! Teale was so exhausted from all her rages and the medications, I think she was thankful for her "bed" and had fallen asleep quickly. I came back to the tent, still wired with adrenaline. I read myself out with a flashlight and Marks strong arm around me, a simple gesture that gives me so much comfort. I always know he is there for me, both day and night he makes me feel loved and protected. I can feel his body relax as he pulls me close and I too finally drift off while saying my nightly prayer, "Thank you God for this man." Sleep renews and I am used to nights I just need to go to bed because the day must end. I will wake very early at home to be alone, have some time of peace just to myself. If I wake early here though my movement could wake Mark or Teale, so I will probably have to wait for them come morning. Gwenn slept in the house with her cousins, luckily Teale was too tired to notice or argue that one. When I did wake, it was not because it was morning though. Teale made a horrid noise, waking Mark and I with a start, it was like a gasping. She has sleep apnea, but we can not master the machine to help it as she won't keep the mask on.  This gasping was different, scary sounding, was a seizure coming? Her Epilepsy always happens in the night, only when her brain waves are in the sleep cycle do her seizures hit. I rolled out of Marks arm and was awake immediately, my adrenaline running again, watching her I was terrified. It was probably only a minute or two of gasping, but it felt like forever. Her seizures are never less than 45 minutes and we have never not had to ambulance her into the hospital for additional help. We have two medications, but after administering both of them, Teale is at risk for breathing distress. She settles, the gasping passes and I lay back down, trying to relax again. It must only be about 1:00 AM and I need much more sleep to get through tomorrow. Soon the light is coming through the tent and I realize we made it to morning without any more incidences. As I lay there awake listening to the breathing of both my sweet husband and daughter I feel refreshed and again hopeful that today will be better.

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