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Thursday, February 6, 2014

Courage

I've gone through times of great dispair. I've hurt right down to my core and found it impossible to be hopeful for our future. My family barely surviving, Teale ruling us and our entire existence feeling completely out of our control. Mark and my pulling in the reins would be implied, even spoken by outsiders, but when you are not living the everyday pain and intense fatigue, there is no way to understand our circumstances. We've gone weeks, even months without decent sleep. We've had weeks of everyday rages that lasted up to an hour each and often there were multiply rages in one day. By the time we put Teale to bed, we would be so fried ourselves we could barely speak to each other or give our little energy to anyone or anything else. The housework would suffer, our other children would practically become self sufficient, even at very young ages. Beau and Gwenn were forced to grew up much faster than typical children. Teale's unstable mental issues have put both Mark and my mental states at risk. We have experienced extreme lows where thoughts of suicide and taking Teale's life seemed completely reasonable. We would talk about these thoughts with each other, knowing we would not follow through, but also understanding the feelings of hopelessness that only the two of us could comprehend. It is not easy to admit such horrific thoughts when she is mentally stable. The idea of losing her puts a pit in my stomach that makes me feel nauseous as I type these words. I believe by being honest and by sharing these very dark feelings, somehow it may help another parent feel less alone. We suffer with our children when they have extreme mental illnesses and rarely in those crisis times are we able to understand other parents have gone through similar situations. Teale's diagnosis of Bi Polar when she was just six years old helped my family to have hope again. She was put on a medication that has mostly worked for her. I say mostly because it doesn't magically take away the mental illness. Medications have lessened the intensity, but there are "breakthrough" cycles when the medication does not seem to work. Of course during those times we try to tweak her care with her psychiatrist and pediatrician. We also acknowledge without the medications being at a certain level in her blood, her behavior may have been far worse during those cycles. Luckily Teale depends on us, her parents, for her medications, so they are consistent. Many adults with mental illnesses stop taking their medications, mostly because they feel better and start to believe they don't need them. Teale does not have this option, Mark and I are vigilant, and she always gets her medications, keeping her blood levels stable is key. Her Bi Polar may have been lessened with the medication, but she was still psychotic at times. Teale has many mental illness diagnosis'. Her labels are many, from Intermittent Explosive Disorder to ODD or OCD or ADD, there have been many mental illness labels put on her since the tender age of four. Teale suffers from sudden, often unexplained rages. We have done seizure studies for weeks on end to try and determine if her rages are actually seizures. Teale has been hooked up to electrodes and has had to stay in a 8' x 10' room being monitored 24/7 for weeks at a time. One of us with her at all times during those hospital stays. The results inconclusive after weeks of extreme stress and upheaval in our life. We have traveled to "better" hospitals out of state to get opinions and we have discussed Teale possibly being a candidate for brain surgery to hopefully control her seizures and stabilize her mood disorders. We have witnessed her come out of rages with confusion and remorse. Never being able to determine if she has a comprehension as to what has just happened, as she looks at the destruction she has caused, the bruises and the blood on one or both of us. I have heard her say "What happened to you?" because I was bloody from her attacks. Her face blank, like she is not there. It scares me and I struggle to explain the strangeness of witnessing her changes in demeanor. Many times I have questioned if she is even in a conscience state during these episodes. That may be the single most important thing that gets me through, the realization that this is not my daughters fault, she did not choose this journey. We were treated carelessly when I was in labor and my daughter has to live with the results of this. You may think I am bitter and admittedly, at times, I am. Teale and my family has suffered a very challenging life because of negligence, but I had decided from the very beginning of this journey with Teale to not focus on that anger. Mark and I work at that often, because letting go does not just happen, it takes years and we are sometimes better at it, than at other times. More often than not, we see the Blessings, not the pain. More often than not, we are surrounded by the love of a village who cares and that is how we get through. So to those who have been there for us in love and in spirit, it is you we admire. You have lifted us in times of great despair and helped us to feel hope again. You have been our heros because without your love, we surely would have been in a very dark place. Teale has touched many lives with her courage, but my courage has often come from each and everyone of you. You just never know how much your words can lift a shattered soul and help them to keep on keeping on. Today and everyday, we need to remember to be kind to each other. May God Bless you and keep you safe. 

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