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Saturday, August 8, 2015


I think this is the third time this week I've woken at 3AM and could not fall back asleep. The other two times I ended up on my phone reading news and scanning FB. I know getting on a device can just cause you to stay awake, so I usually avoid it for awhile if I'm awake. But my mind was flooding with scary thoughts, so I figured it was a distraction. I'd get sleepy again, set it down and then my mind went back to my fears. I'm not sure how Mark is sleeping, maybe he's waking too, during the hours I sleep? I lay there listening to him breathe, thinking how grateful I am to have him as my partner. We've been challenged much, but it never effects "us." We are still able to have fun when given the opportunity and be a comfort to each other. It's been a rough month or so, finding out our daughter's kidneys are failing, that she is probably struggling with a condition called Diabetes Insipitus and knowing we must get her off Lithium ASAP. She's been on Lithium since she was a mer six years old and for the most part, it's been a good medication for her. Her first manic stage was horrific, at six, she only slept approximately two hours a night. Because of her severe developmental delays, one of us was up with her at all times. The exhaustion built up and we were barely functioning as this continued and days turned into weeks and months. Of course her doctors were working with us this whole time, but you have to understand, sleep deprivation causes your mind to not believe everything. We questioned whether we were crazy and she was sleeping more than we reported? We tried several sleeping medications under her doctor's care, but still she was awake and functional all but two or three hours a day. Mark and I doubted ourselves as the sleep deprivation took hold of our minds. It was like we were in some conspiracy theory, other people doubted what we were saying, doctors, Teale's school, friends, family. No one could believe she was only sleeping a few hours, yet had so much energy day in and day out. You stop believing yourself when no one listens or you just stop even trying to tell the truth. We were sure, sooner or later, she would HAVE to sleep and or one of the many medicines would work. It wasn't until Teale started having unique seizures during the day at school that anyone finally really took note that something was wrong. Sleep deprivation causes seizures in people with Epilepsy and Teale had never had day seizures. He brain damage has somehow only shown it's ugliness at night, once she is in the sleep cycle, her seizures appear. At that time in her life, her seizure disorder was not well controlled, but it was not out of control either. Day seizures and the type she was having were totally different from her normal. In seizure disorders, generally people only have certain kinds. If the seizures change, it causes alarm, so at this point doctors were concerned and realizing we needed a better plan. I knew Mark and I were at the end of our rope, working all day and watching Teale all night was frying us. I remember turning to him and saying, I know I won't do it, but I'm as close to suicide as I could be. The whole truth was that I was fantasizing about taking Teale and driving into a truck or something, to save Mark from the pain of life with Teale. I knew I was getting psychotic because it all made sense and seemed merciful. Sharing that with my husband and Teale's doctors got action. They decided we had to hospitalize her, so someone else could evaluate her 24/7 and so we could sleep. This is why my fears are so high right now, ever since that hospitalization, Teale has been diagnosed with Bi-Polar Disorder and was put on Lithium. The Lithium worked and our daughter started to sleep again. The validation that she was not sleeping helped Mark and I immensely. We no longer thought we were the crazy ones and understood our daughter's severe brain damage had caused mental illness too. It would not suddenly be easy with Teale, but it certainly helps to know what you are dealing with to treat it. Ten years later, her kidneys can no longer handle filtering the Lithium and we are weaning her off. It's ironic my fear is showing up in inability to sleep. I know Mark and I are stronger, more educated and we trust ourselves much more as people and as Teale's parents than we did ten years ago. I know we will make the best decisions and we will survive. I also know, I'm scared, I'm mad at God for allowing Teale to suffer more and I'm tired. So if you get the chance, please lift us in prayer, because in my heart, I know I will feel your love and support and Teale will be ok. 

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