There is another aspect of loss which I need to tackle. It is probably the hardest one to acknowledge. Somehow there is comfort in that old D&D–denial and diversion–when it comes to this one. The loss that I am now referring to is the loss of our youngest’s good mental health.
Previously I have touched on this a little, but I haven’t delved into it. Recently, someone asked me if I had ever acknowledged the loss I’ve experienced due to her disabling anxiety disorder. I could honestly answer no to that one question, but it got me thinking. I have always felt that I didn’t have the right to say that; to say that we had lost something. After all, we had decided to bring her into the world, so how dare we say that she has taken something away from us. We generally try to focus on what she has given to our lives. I see now that approach was less than honest.
For the last 5 years we have struggled for a clear-cut diagnosis and a clear-cut treatment plan. We have gone down many different paths, with many different doctors. We have experienced more sleepless nights than you can count. She has endured a lot, from a 2 week hospitalization in a children’s psychiatric unit at age 9 to a 9 month stint in an out of state residential treatment center at age 12. I keep her medical history in a huge file, tabbed and labeled. Her medication history sheet lists 13 different drugs to date, all detailed with the varying dosages tried until we found the current winning combination. We have laughed over the gallon Ziploc bag that I have in a drawer which has all the failed prescription regimens–we joke that maybe we should sell it on Ebay and make some extra cash. We have heard phrases like ‘well we are pretty sure she isn’t schizophrenic, but...’ or ‘she is reacting to this medication like a person who is bipolar, so we should treat her as such’ or my personal favorite ‘only time will tell’.
When she was little she was full of life. Fearless. She always liked routine. At age 3 we first started to notice obsessive compulsive traits. We hung a calendar in her room and I created a symbol system, stars for days she went to preschool, circles for days she went to Grandma’s, squares for days I worked, triangles for days she went to the babysitter. Each night she would cross the day off and plan ahead for the next day.
At age 8 we started to notice other changes. She became extremely fearful. Sleepless nights started. She would wake during the night and need us to put her back in bed. Later she was so afraid of sleep that she started sleeping in our room in a sleeping bag on the floor. We tried everything. We even bought her new bedroom furniture and re-decorated her room in the hopes it would be a ‘happy place’ for her to be again. No such luck. We tried inching the sleeping bag out into the hall and slowly down the hall to her room. This process went on for months.
During this time, the vivid hallucinations began. She would scream and run and hide. It didn’t matter if I would sit and hold her, she would be overcome by terror. Visions of people coming to kill us or the dog would consume her waking hours. We began making trips to the ER to document that she was in a downward spiral, with the hopes of getting her a bed in an inpatient psychiatric unit. While in the IPU she started a new medication routine and the team of doctors again scratched their heads for a diagnosis. Finally, they decided that the hallucinations were a form of panic attacks and sent her home. The insurance company would only cover 2 weeks and they couldn’t get authorization for more if she wasn’t an immediate threat to herself. After her return home, for a long period of time she had no hallucinations and we felt that we were thru the worst of it.
She returned to school. The first week back at school, a parent called Dean. He said he had heard our daughter had been hospitalized for emotional issues, so he was wondering if maybe she was the instigator of the latest round of ‘little girl meanness’ that had happened at school the day before. Dean assured him he would check into it. The parent went on to say that perhaps we could use it as a ‘teaching moment’ for our daughter, he was so sure that she had to be the culprit. To say we were frustrated doesn’t even touch the myriad of emotions that coursed thru us. Later we learned that it was this parent’s OWN DAUGHTER that had been the instigator of the bullying. When the truth was exposed, the man never apologized to us for his accusation. The dye was cast. It became apparent to us that our daughter was now viewed by some as damaged. It was the beginning of not being invited to birthday parties or on play dates. She would play at recess with the same group of girls, only to have them often tell her they didn’t want to play with her, or they needed a break from her. Many times she would be the only one in the little group that wouldn’t get invited for the sleepovers. It was heart-wrenching. We understood on the one hand, but on the other hand we were devastated. This was our community. We began to feel more and more like we were on the outside looking in.
to be continued...
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