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. 

Being lost was a terrible feeling, but there I was, stuck on that plane, wishing desperately to be in Italy and unpacking my suitcase.  Come on; I literally was two thirds of the way there! I could see the Tuscan countryside and the beautiful architecture.  I could smell the sweet grapes on the vine and the aromas of the delicious culinary delights wafting through the air.  But, once again, the pilot announced that we were headed back to Holland while Italy still remained closed. Did I have the strength in me to see the beauty of Holland all over again with this next chapter in our lives?  If things would have stayed “comfortable” with my little girl, then I might have been able to.  But, we were soon to enter another period of very difficult times and Reality and Guilt were going to make themselves cozier than ever before. But, before that would happen, we would celebrate the small things and live in the moment of what I would call “The Middle.”

The transition to middle school started in August of 2002. Our miracle worker for this adventure was Misti.  She was amazing and her idea of educating children with special needs was to treat them no differently than other students.  She set high expectations and had them working on the same things all the other children were working on-modified, of course.  She incorporated ‘typical’ peers into the classroom at every opportunity; which was easy for her since she was the yearbook sponsor, volleyball coach and student government leader.  She was amazing and I was thankful for her each and every day.  Our big girl had been on the ketogenic diet for close to four years and we decided to wean her off the summer before she started middle school. She had done so well for all of those years and we only saw a few seizures during that entire time.

Misti was amazing and at every turn she was providing us with pictures and funny stories about the day’s activities. There were spelling tests, math tests and reading assignments that were part of each and every day. There were community field trips and parties at every turn. It was so much more than I had imagined. One afternoon, I found myself at the school for a meeting and afterward I went to have lunch with my little girl. Misti joined us at the table and when the bell rang to signal the end of the lunch period, I watched as my baby stood up, dumped her trash, put her tray on the counter and walked out of the lunchroom. I turned to look at Misti silently screaming in my head, “Aren’t you going to get up and take her to class? Isn’t there a para that’s going to at least follow her? Are you going to just let her walk out of here alone? Oh my God, woman, do something!” I know Misti could see the anguish and fear in my face. She simply told me not to worry. The other students would help her get to class if she needed it. All I could say was, “Really, she can do it  by herself?” I seriously couldn’t believe that my little girl was able to do any of the things Misti said she could do. I started looking at her differently and I realized that no matter how much I wanted to stop her from growing and transitioning, I was going to have to open my eyes wider and let it happen, and I had Misti to thank for that. She would be the reason I began to trust the world around me to take care of my little girl. She made me start to realize I didn’t have to do it all by myself and that made me a better mother, a better teacher and a better person.  I went home that day and wrote the following words, because writing was the only way I knew how to express my feelings and this time I was feeling HOPEFUL.

Today I saw you differently than I’ve ever seen before; 

Today I saw you make your way all your own down the hall.

Today I caught a glimpse of the young girl you could be; 

Today I felt a weight slowly lifted off of me. 

But, yesterday I never thought I would see you in such light;

Yesterday I cried about tomorrow through the night.

Yesterday I felt the guilt and shame that you were different;

And yesterday what you couldn’t do brought tears and disappointment.

But, Today I know you can do so much more than ever dreamed;

And Tomorrow won’t be as frightening as it had once seemed.

Tomorrow holds a future that gets brighter every day.

Tomorrow you’ll be applauded for your talents and unique way. 

Tomorrow I will look upon with joy instead of sorrow;

For the best is yet to come with the acceptance of Tomorrow. 

I would hold on to the hope that tomorrow would bring me closer to acceptance myself. You see, having a child with a disability brings you around and around to so many emotions over and over again. You begin to accept your child and you “see” the beauty of Holland but something always pushes you backward. Something always brings up the picture of Italy in your head and you end up spiraling downward on your rope; having to climb back up with every ounce of strength you have left. It’s exhausting having to handle all of those feelings and emotions and I’m sure people on the outside looking in just wanted to scream, “Get over it! Accept it and move on! We all have problems, we all have something we struggle with, just deal with it!” And that’s what I did. I continued to smile on the outside. I repeated in my head, “It could always be worse.”

I threw myself into my job and my family and I started changing. I started evolving on the inside. I didn’t want to keep tying knots, hanging on to ropes and wishing to be somewhere else. I had realized years before when searching for answers, that I was responsible for my life and how I wanted to be remembered. So, I started working on building a solid foundation to keep myself on the ground and not hanging from a rope. I started creating a new path that would lead to places I wanted to be instead of waiting on a plane to land “somewhere.” Yes, we all have challenges in life and the solution to surviving comes down to how you “choose” to handle what you’ve been given and how you “choose” to be seen by others. I wanted to make the most of my situation and everything I had learned from the amazing people around me.

Eight years of elementary school were quite the challenge for everyone and when she was ready to move on there wasn’t a dry eye in the room. I was scared to death to let that little girl move on to the ‘big, bad middle school’ where she would be an imperfect fish in a big sea. They had taken such good care of her at elementary school and even though she was already older than everyone else, I still wanted her to stay. Everyone knew her and loved her, from the secretary to the lunch ladies. They learned to be patient with her and they knew how to handle all of her ‘quirky’ behaviors without blinking an eye. She was wrapped in a big,  warm, protective blanket, surrounded by people that loved her and now we had to say, “Goodbye.”

Eight years ago a little girl walked into school one day,

Some people wondered how she’d learn; but no one turned away.

Each day they trained her how to act, and gave her skills she somehow lacked.

They even taught her words to read; Her parents knew this an awesome deed.

This little girl gave quite a fight, but no one ever near lost sight.

And with each passing year gone by, her teachers found new things to try.

There are no words one can express, to show these parents’ gratefulness.

There is no doubt this girl was blessed, to be amid such selflessness.

So take these words you see above, and know that you are truly loved.

For all you’ve done for this little girl, and how you’ve changed her parents world.

A part of you will always be,

Inside that little girl of three.

Who now moves on with so much more, 

Than she had had eight years before. 

Despite the fact that I was nowhere near ready for her to leave,  it was time for the “T” Word. It was time to face the transition to middle school. Or, for parents of children with disabilities, it was just another opportunity to think about how different our children were from everyone else.  Just when you get comfortable with everything in your child’s world, change arrives. As parents, we expect our children to grow up and make their way in the world. It’s exciting as we watch them grow, mature and learn to handle the world around them. Elementary to middle school, middle school to high school, getting a driver’s license, graduating, going off to college, dating, getting engaged, marriage, having children, working………somebody stop me before this gets out of hand!  But, when you have a child with a disability, you end up ‘dreading’ those moments because you know they’ll never be what you had imagined. They’ll never be what’s typical and they’ll never ever be easy.  It’s just another announcement from the universe that, “Hey! Wake up! You’re still in Holland! This plane ain’t going to Italy anytime soon!” Silly, isn’t it, but “it is what it is.”

This was our first big transition and I was a complete mess. Thank goodness we had another miracle worker, simply named Misti, ready to take over where the others had left off.  She made sure I understood that my girl was going to a safe place and that she wouldn’t let anything happen to her.  She quickly became another life-long friend and she was able to alleviate some of my fears about my baby heading to middle school.  Mostly, I was afraid that she would start to realize how different she was from everyone else. And then I was afraid of………….EVERYONE ELSE!

In my personal and professional life, I was transitioning as well. I was working hard and discovering that teaching children with special needs wasn’t easy.  I felt such a responsibility to each of them, and their parents, to teach them as much as I could.  The first year was awful.  Despite the fact that I had an amazing mentor, Rose, who had years of experience, I still felt so overwhelmed. She was there for me so many times with answers to my questions, “What do I do? How do I do it? How can I do it? and When is summer?” It was Rose’s sense of humor and patience that kept me together most days, and even though I thought about giving up plenty of times, I never did. I never did because my daughter’s teachers had never given up on her.  She had come so far because they were invested in her education and they never underestimated her potential.  That’s what I held on to with my students and that’s what I saw in all of them………..the potential to learn anything if someone just believed in them and showed them how to believe in themselves.

The rest of the family was moving along and happily transitioning just fine. Baby girl was growing fast and she wasn’t that quiet little baby anymore.  On the contrary, she was talking up a storm to everyone and anyone that listened to her.  I had no fears or worries about her development.  Like her brother, she was meeting all of her milestones and was so bright and quite the social butterfly. She was beautiful and getting compliments from people everywhere we went.  I knew that she would be the little girl of my dreams from many years before. Baby Boy continued to provide us with so much pride.  He was so smart and was reading and writing above level in Kindergarten and first grade.  He participated in sports and  was invited to birthday parties and had friends over to play…..so many of the things that his sister never had been able to do.  There I go again, comparing both of them to HER. But, it was true, they were doing all of the things that their sister wasn’t able to because of her disabilities. And because of that, I felt lost; lost between Holland and Italy ……never feeling comfortable in either place.