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Thursday, November 21, 2013

The Doc's, part seven

It became evident that going home was the best choice. Teale was calmer, still not sleeping much, but there was a lot of hope the Lithium was helping her. We had several meetings about what to look for in side effects, how to help Teale if she became enraged, which emergency medications we could use that wouldn't counteract with her other medications, etc. Much was thrown at us, but by this point in Teale's life, we were a good team, Mark and I. We had our own plans and we both knew what we wanted for Teale, we just wanted her to feel peace. To be the parents watching the behaviors of your mentally ill child is one thing, it's beyond tough, your heart hurts constantly that you can not help your child. The other side of the issue though, is the child. Mark and I could not imagine what Teale felt? The pain inside her, the anxious feeling, the anger, the confusion and the frustration, all in this little girl that should feel nothing but love and joy at this point in her life. Often with mentally ill children, it has been my experience that people are not comfortable being open about it. Mental illness is still taboo, it's not talked about openly, making it seem or at least feel like somehow it is the fault of the mentally ill or of their parents. In our case it's fairly clear Teale's brain damage is the cause of her mood disorders. She does not have two brain lobes working together and that loss creates a lot of problems with regulating moods. Somehow this probably gives me more strength to be upfront and honest about how difficult her behavior can be. After all her brain damage was not my fault. Our friends and families are very kind and caring when Teale in tough behavior cycles, they are supportive and loving toward us. I think there have been times though that they have thought, she is too much and we should give up care of her. I have even had those times when our life has been so out of control, I just could not imagine continuing the journey. It just wasn't an option though, in my heart I knew if we couldn't take care of Teale, who could? Our love was (and is) deep, we balance each other well, Mark and I. We know when to take a break and if we don't know for ourselves, the other one knows for us. I have asked, no told Mark to leave the house, to get away, to take some time alone. He plays the saxaphone and music helps him, so I send him away to release through music. He has done the same for me. Making me spend time with a girlfriend or just by myself doing something I love, like gardening. There have been cycles of Teale where she demands our attention constantly and after awhile you are so burnt out your nerves are just raw from trying to keep her happy and even tempered. Dr Tom says that we have all developed PTSD because in bad cycles, living with Teale is much like living in a war zone. We are on edge, always on our guard and trying to stay one step ahead of the game. She is unpredictable, she snaps suddenly a fiercely. We worry constantly about who would take care of Teale if anything ever were to happen to Mark and I, but that is a whole other blog. I know that some friends and family in the worst of times just could not see the light. I know they thought Mark and I were living in hell and Teale was the whole cause of it, so why not just give her up to a group home? Even in the most challenging times, Mark and I had hope and faith that things could and would get better. We knew Teale needed us, not in a martyr sense, but because we truly loved her and believed that inside all that confusion there was much good. I will not deny there have been dreams of running away from all this. I have had times when having to restrain her that I have had to keep my anger in check to not hurt her because my anger was there too. In times like that I pray, I ask God to help Teale calm, I ask for peace, for calm in me. I ask God to be with me and help me to not hurt His child. I tell myself over and over agin, "This is not Teale, this is not her fault." Teale is without filter when in a rage, she is out for blood and tries desperately to hurt me. There is no thought going on, she does not think how wrong it is to want to hit, kick, bite, scratch, etc. her Mom. Often I find her rages start and in the middle of it, she is unaware as to why she is raging. It's a primitive instinct that kicks in and she just fights with all her strength, not even always knowing what provoked it. The weeks working up to the hospitalization in the psych ward was filled with times like these, intense rages constantly. All we could do was to hold Teale until she calmed. It was the only way to keep her safe, our other kids safe, our selves safe and the home safe. It's not pretty, it's heartbreaking to have to restrain your own child until she can calm down, but there was not any other choice. So going home was filled with the same feelings again, would Teale be constantly explosive? We had to take the chance though, so we rallied Dr Tom and Dr Dave and told them we wanted to bring Teale home. They would be our medical and our mental support again and they knew we would be relying on the both of them heavily while we tried to get Teale stabilized. By this point in our relationships, we had their personal cell phone numbers and we kept in close contact. The two of them, Mark and I, were all Teale had. We were her team, we would either get through this and help our daughter or we would have to find a different medication and a different plan. I was confident though, that I remember. I felt strong again after the two weeks of Teale in the hospital. I had a better perspective and I had slept, something that seems so simple, until you have not had enough. We were going to do this, we were going to make Teale's life the best we could and we were going to show everyone that she was worth the fight. She is a person, she is our daughter and she needed us. I was proud to be with a man who was completely my partner in this life. I was proud of us for not letting the stress of it all come between us. We were strong separately, but together I felt people listened and trusted us even more. So we went to get Teale...  (to be continued)

Wednesday, November 20, 2013

The Docs, part six

I hated the psych ward. I hated everything about leaving my daughter there. The people were nice, the nurses understanding and caring but once again I was being forced to let go of control. Letting go is not easy for most Mom's. I may be wrong here, but letting go of your child who uses very little audible language seems much more difficult on the heart. I was leaving my child, who talks in cryptic puzzles that I am forced to figure out, in many stranger's care. Teale often exploded out of frustration because she was misunderstood. How would people who did not know her obscure sign language, mixed with gestures and speech that was missing so many sounds, expect to help my daughter become more mentally stable? Her inability to be understood was the factor that caused the most meltdowns. My hope had always been that as she got older and could be better understood, the meltdowns would decrease. I never blamed her for her frustration, I hurt for her. That she knew what she meant and I did not was more frustrating to me than it was to her, I just kept my feelings in check. I often felt a deep sadness that Teale may believe I just don't care when I'm not understanding her, but in truth her wellbeing haunted me all hours of every day. I knew the abstract was missing in her comprehension. I knew she just could not understand the meaning of "tomorrow" or the concept of us being "out of something." I prayed the day would come that I wouldn't shake with fear when she asked me for something I did not have immediately at my disposal. I wondered how the nurses and the doctors at the psych ward were dealing with this. Teale often would suddenly ask for a random stuffed animal or toy that she had not thought of in years, she would expect Mark and I to know what she wanted and find it ASAP. Thoughts like this tormented me while Teale was at the psychiatric ward, would they just drug her if she went ballistic? It all ate at me, yet I felt it was my only hope too. She was lost and the Lithium may bring her back to us, it may help her to be a better person. I was (and still am) always thinking things could be better. If we find the right medications, if we find the right therapies or the right doctors, maybe, just maybe, we will someday find the miracle we've been looking for. The Lithium was started, the days progressed. We fell into a routine of visiting Teale after our long day running our in home daycare. I believe the staff at the psychiatric ward was more than understanding with our family because Teale was not their typical child. They usually didn't allow much visitation from family, but Teale's unique special needs were also not what they were used to dealing with. We worked as a team, trying to help our daughter, but also giving Mark, myself, Beau and Gwenn a break from the extreme difficult behaviors that Teale had been displaying in the months prior to her hospitalization in the psych ward. We knew she would be coming home soon, that she would still take much energy and time and we were realistic that this was probably not going to be the miracle we hoped for. We knew we needed to build up our strength and get some sleep under our belts. Teale's sleep did not improve drastically at the hospital, it showed signs of improvement, but it was tedious how little she improved. Soon we were talking about discharge, even though she was barely sleeping more than a few hours a night. The thoughts were she might sleep better at home in a place she felt more safe and secure. The Lithium was building up in her blood and we were getting closer to a therapeutic level. The insurance would start to argue against Teale being hospitalized and it would be difficult to prove the need. The visits to the hospital were exhausting, emotional and draining. We would see other kids who didn't seem to have much parental support and that was difficult to watch. Kids would attach to Mark and I when we were there, talking our ears off, as if they had not had an adult listen to them in years. We were watched while we visited, it was subtle, but you felt the cameras and the stares of the staff. Were they looking to see if it was our fault? I understood, yet considering it was this very hospital that caused my daughters lifelong disabilities at birth, it made me angry to have them judge me. I know once people get to know Mark and I they realize our devotion and our love toward Teale, but to have to prove that to strangers is unsettling. Having Dr Dave and Dr Tom backing us with years of care always helps me. There have been many times we have been put in uncomfortable positions with Teale being explosive in public. Knowing Dr Dave and Dr Tom have our back helps me hold my head high. They would never let a one time incident turn into a CPS situation where our care of Teale is being questioned. That kind of relationship is priceless in our life, the trust and the care between the four of us for the better good of Teale has literally kept me sane. Teale does self injurious behavior, like biting her own arm, the bruises attract stares, it's uncomfortable for Mark and I, but it's a sad, real part of our life. So as we visited our own daughter at the hospital, I remember how at first the idea of strangers observing our parenting skills really bothered me. I remember feeling like it was unfair that these 22 year old nurses who hadn't lived half of what I had, got to pass judgement on me. It was part of the journey though and in the end, I hope we taught more than they did. (to be continued)