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Two Special Children, Many Choices, a Family Essay

Published | By
Kathy Hennessy

Choice . . . When I was I a teenager I thought the big choice in life was, “Should I cut my hair or let it grow?”. The first real choice in my life was where I would go to college? I made my choice, cut my hair and headed off to the future. I had made a good choice!

As I got older, I came to believe that fate or destiny made our choices for us. We were just careening down life’s path, being tossed hither and yon at the whim of some magical force. But then again, I was in my twenty’s, my hair was long again and still the same color it had always been.

When I was 31, I had my first child, a beautiful little girl. It wasn’t until I was pregnant with my second child that I began to face that fact that something was not quite right with my daughter! I have always been the type of person to trust my instincts and did the same this time. From that point in time it took almost five years to correctly diagnose my daughter’s issues and even then it was my second child, my son, who was diagnosed first. He was easier to diagnose because his issues were much more severe.

Is it fate, or destiny or some choice we made earlier in life that sends us one of God’s special children? How about two? Both of my children were eventually diagnosed with Apraxia. Since very little research has been done on the issue there is not much known about Apraxia. What we do know is that it is a motor planning retrieval problem. Simply put, the message in the child’s brain doesn’t quite make it to the appropriate muscle to carry out the job. Apraxia often shows up in a child’s speech, like my daughter, or it can show up globally, in all the motor systems, like my son. Researchers do not know why it occurs or what the outcome will be. There are a variety of symptoms and not every child has every symptom and recovery is different for every child! Researchers haven’t quite figured out what to do about it either. So, as parents, we are left to make the choices for our children.

Katie was diagnosed as developmentally delayed. As the shock of my daughter’s initial and, as it turned out incorrect, diagnosis wore off we had no idea what the future would hold for her. But the crying had to stop and we rolled up our sleeves and went to work. Katie was soon in therapy every day of the week. I was becoming an expert in fighting with insurance companies and winning and she was learning how to speak. Looking back the most important choice I made during that period was to fight this thing, whatever it was.

We still didn’t know how it would all turn out for Katie, when we began to realize that my son, Andy, had some issues of his own! He never did get the hang of sucking and made absolutely no sounds at all! The thing that broke my heart the most was that he wouldn’t give me kisses. At eighteen months old Andy started therapy without a diagnosis. Even though I knew he wasn’t deaf, I started to teach him sign language. It was unbearably sad for me to realize all the things that were locked in Andy’s head that he couldn’t share with us. About a year later, Andy was diagnosed with Apraxia. Finally, we understood, it wasn’t that Andy wouldn’t give Mommy kisses but that Andy couldn’t give Mommy kisses. We were told at that point that his Apraxia was so severe that our miracle was that he could walk and he would probably never talk.

Katie’s therapists, at that point, diagnosed her as having severe verbal Apraxia. Sadness permeated everything that I tried to do. I could not function. Choices? I felt like any choices I had had been ripped from my hands and shredded to nothing. It was only later that I realized that parents of children diagnosed with disabilities must allow themselves time to grieve. There is a loss and it must be acknowledged. But there also comes a point where choices must be made. My choice was education.

Over the years, I have often wondered what I would do if God suddenly appeared in my kitchen and offered to change my children. I have thought about this a lot and I think I would have to politely refuse his very generous offer. I believe that my children are kinder, more thoughtful and better people for all the trials they have had to endure. Katie and Andy always take the new child in class under their wing. They tend to look out for the kids that are different from them. I don’t think I taught them that; the lives they have led have been their best teachers. Now, if God appeared in my kitchen and offered to do something about this gray hair…

What I needed at this point in my life, more than anything, was another parent and that was the one thing I couldn’t find. Was it fate that sent me to just one more conference? Well, fate, destiny or choice, it was a turning point. I found myself in a room full of parents with children just like mine. I missed the entire first hour of the conference looking around marveling at all the other parents, just like me. After the conference I introduced myself to the organizers.

Together, we have opened the doors for many other parents and because of the organization that has been formed, parents of a child newly diagnosed with apraxia never have to feel as alone as I did in those early days. My choice in all of this has been to share my experiences and the information I have acquired along the way with other parents. Both of my children are well on the road to recovery. Katie wants nothing more than to be in a movie with Mary Kate and Ashley Olsen and Andy is an incredibly intelligent and articulate little boy who dreams of building his own amusement park one day.

Choices………When I was young I used to pray that God would solve my problems for me. As I have grown older I have begun to pray that God helps me make good choices and gives me the strength to see them through. It is the choices that we make that lead us to the turning points in our lives. Fate, destiny, choices, someday when I have the time I’m going to think about that and try to figure out which has had the bigger voice in my life and then I’m going to see how I look as a blond!

(note: This essay won second place in St. Mary’s College Meekison Essay Contest)