My life up to this point had been partly held together by inspirational quotes and stories. Things started out with me believing that I was ‘Chosen’ and progressed into a beautiful analogy about Holland. Then, when things went haywire, I tied knots (oh, so many knots) into ropes and tried my best to hang on. And, in between those, there were others, “It is what it is. It could always be worse. Make the most of what you’ve been given. A step will do just fine.” But they were never as powerful as the quote I came across during this next phase; “Keep your thoughts positive because your thoughts become your words. Keep your words positive because your words become your behavior. Keep your behavior positive because your behavior becomes your habits. Keep your habits positive because your habits become your values. Keep your values positive because your values become your destiny.” (Mohandas Karamchand Gandhi). Deep down in my very nature I had always been a positive person. I refused to get swept up into the negative that I had seen others fall victim to but it wasn’t easy. I found myself defending my positive outlook to others who couldn’t see it themselves. But it was this ‘belief,’ this ‘choice,’ this ‘value’ that would keep me going and pick me up through some of the worst of times.

My little girl was ‘growing up’ and changing despite the fact that I didn’t want her to. Misti had helped me realize that she could do so much more than I had ever dreamed. We were lucky to have had her as a teacher for those years at the beginning of ‘the middle’ and they were good. But growing up happens and things always change. Boy and I struggled with so many decisions in our life and with our family. Every major decision had to include, “What about HER? How will this impact HER? Are we doing the right thing for HER?” There were always so many “what-ifs?” Boy grew tired of his job as a police officer and wanted a career change  and that meant a major transition. We packed our bags and headed to another city; leaving behind the comfort of everyone and everything we had known for years. Moving meant finding a new job, a new home, new doctors, new friends and a new support system. It also came along with new fears, new questions and new doubts. How would our family transition and how would our Big Girl deal with all of it? Change was never an easy thing for her and now everything in her world was going to shift. I said goodbye to everyone and choked back tears because I hated leaving the very people that were our heroes, our therapists, our teachers, our doctors, our “orthodontists,” our friends……our family…… and most of all…….I hated saying goodbye to the very people that had been my safety net for so many years.

I had heard it said many times from people that my little girl was “lucky.” She and I were “lucky” because she was unaware of the world around her and of other people. Because of her ‘low IQ’ she was living in “happy bliss;” unaware of her own disability and shortcomings. I’ll admit that I fell for those statements in the beginning. Sadly, I was going to realize that my little girl knew she was different and it was going to fire up a horrible emotional roller-coaster that would crash into our little world. ‘Growing up’ for her wasn’t going to involve just a change in hormones, pimples or mood swings that most teens experience. Her ‘growing up’ was going to include so much more ‘ugliness’ than I could ever have imagined and it just wasn’t fair. It just wasn’t fair for someone so fragile to have to deal with all of those feelings. It just wasn’t fair for this beautiful young girl to have to deal with the world around her and not understand what was happening to her. You see, she would begin to realize that she wasn’t like everyone else. She would start to notice the people around her staring and looking at her. And she would start to form thoughts in her head that people were laughing or talking about her and there was nothing I could do to stop this unfortunate part of ‘The Growing Up.’ There was nothing I could do……nothing. And even though I once thought that the world would accept her, I now started to doubt all of it.

The ugliness began after our move to Houston so she would have been 13 years old. It was the summer after Boy’s heart attack, horrible timing for any kind of major life transition, but after thinking long and hard about every little thing, we made the decision to forge ahead. Within weeks, we found a house, I found a job and the kids were enrolled in schools. We hoped and prayed that we would find new heroes to work with our Big Girl and we were mostly lucky. The first year we met Ms. Powell and we quickly learned that teaching was a personal mission for her as her own brother had a disability.  She provided us with pictures and positive descriptions of community-based field trips and daily learning tasks. It seemed that things fell right into place until she left at the end of that first year to start her own family. After that, the daily stories and notes didn’t continue as frequently and by the third year in middle school they were completely gone. We started seeing the changes increase each year but without the daily communication, we never knew what was happening during the day and if that had anything to do with our Girl’s progressive emotional decline.

Not that it would have mattered. Nothing could have stopped the changes going on inside her. There were times she spent hours in her room screaming. There were episodes of crying that she couldn’t explain to me. There were strange fears and obsessions that began to emerge and no one could explain anything to us. She started becoming violent and aggressive, hitting and throwing things with little to no provocation. We started talking to doctors about anti-psychotics, anti-depressants, mood stabilizers and other medications to help control things, but nothing worked. We put her on birth control pills to manage her cycle and that helped with some of the emotive ups and downs she was experiencing. Things were cycling so quickly and again I found myself doubting so many decisions. “Should we try this medication? What about side-effects? What will it do to her? Things aren’t so bad……..she’s doing better now. We can wait until things get worse again.” The right thing to do was never in any book and never came off the lips of any doctor. It was all up to us to figure out and again, it was exhausting, confusing, petrifying and lonely.