I live in Lizzy’s World.

It is not quite the same world everyone else lives in.

My world revolves around my 13 year old daughter Elizabeth. It is a world I never even thought about living in; a world that didn’t exist in my mind; a world I would never have chosen to live in. But sometimes things in life happen that you can’t control.

Like many 20 somethings I had a nice career, got married and decided to start a family. When I was pregnant, I did everything I was supposed to do to have a healthy baby. I didn’t drink or smoke; I even gave up caffeine. The name chosen for my first child was Elizabeth, after Grandmother. At work, they nicknamed the baby Lizzy and it stuck.

I gave birth to Lizzy on February 6, 1997. She was a bit early but everything was fine; everything seemed to be normal. She was almost 2 years old and still not talking. Otherwise, she seemed fine. We had an early intervention evaluation done and they told us she was severely delayed in her fine motor skills, gross motor skills and language development. I was SHOCKED and could not believe it. How could MY CHILD not be “normal”? I did everything I was supposed to do. I had never, ever thought I could have a child that was disabled. It was just something that never entered my mind.

But that is what I have; a disabled child. After about a year and a half of doctor appointment after doctor appointment, test after test, we finally got a name for it. She has autism and 22q13.3 deletion. I had never heard of it and neither had my genetics doctor.

Fast forward to the year 2010, Lizzy has Phelan-McDermid Syndrome. She is a very active girl and physically able (for that I am grateful, most of the time….). She uses a voice output device to communicate. She also kicks, bangs and pulls hair to get her point across. I had to give up my career so that I could have more flexible hours to accommodate Lizzy’s needs. Life is very structured and routine. When we deviate from routine, Lizzy does not do well and we all suffer.

I have safety tinted the windows in my home and car to keep Lizzy from kicking them out and getting injured. I have repaired more than one large hole in the wall; a result of her kicking. Thirteen years after giving birth to her, I am still changing diapers on her. She now outweighs me by a few pounds and is a real handful to control. In public, she makes lots of noises and kicks things. Traveling is not much fun because Lizzy is always in motion and never sits still. We’ve stayed in hotels and been told we are “the rudest people ever” because she was noisy. Going out to eat is a challenge on a good day.

I have been told that I must be special to be given such a special child. I don’t feel like I’m special. I’m sure Lizzy doesn’t feel she is special either. Neither of us would have chosen life to be like this. But this is life; life in Lizzy’s World.