Do You Ever Forget What Is REALLY Important in Life?

This will be a long post. If you make it to the end, thank you. This blog was started as an experiment. Could I create interesting topics? Normally, probably not. It quickly became a meaningful voice for my thoughts. I have made several new friends here, and I am glad for that fact. It has turned mostly to politics and the debates of the day. Sometimes, especially this last week, I wonder why it was even important.

I have a 7 year old daughter. From the moment she was born, my life has never been the same. It is a cliche, but the truth is that I didn't know anything about love until the moment I saw her. She is teh reason that I breathe, and the reason I rise ever day. Without her, my life has no meaning.

When she was about 1 year, my wife and I began being concerned about her lack of real speech. We visited doctors and they said it wasn't anything to worry about. She would talk in her own time. Three pediatricians later, and my daughter is now 2 1/2. Very small vocaulary, and we are really worried. We finally find a pediatrician who said she should get ear tubes. She had experienced chronic ear infections her entire short life. So, we did this and it had almost an overight improvement.

My daughter is beautiful. Looking at her, she looks like ever other kid. She gets angry, and frustrated, and happy, and silly, and loud....Just like everyone else. We started speech therapy when she was 3, and it continues until today. Two years ago she entered kindergarden. She had speech and occupational therapy to help her catch up. She never did, so she repeated kindergarden last year. Her teachers noticed some fine motor skill lapses - She couldn't cut a straight line, she couldn't cut a circle, she couldn't button her clothes.

A pediatric neurologist recommended a clinic that is part of Children's Hospital at the Uniersity of Alabama-Birmingham, one of the finest teaching hospitals in the country. We underwent days of evaluations and tests after waiting months for a slot. A couple of months went by, and we got the report. IQ a little below normal, communication below her age, speech below her age.

So last Thursday we were at the neurologists again. He has a preliminary diagnosis of Angelman Syndrome which is a rare chromosonal defect. I won't bore you with the details, but the bottom line is that she will never reach "normal" as defined by her peers. Her IQ will be forever below, she won't be able to live unassisted, she will probably never read like we do or have a prom or drive a car. Her life expectancy will be normal, and the silver lining is that she probably won't even realize what she is missing. There is no cure and no treatment. Therapies will improve her quality of life, whatever that means.

We have an MRI scheduled for next month, and they are doing blood tests to render a formal diagnosis. But here I am at 40, my daughter 7, and I am having to think 40 years ahead to make wills and all of that to make sure she will be provided for and not have to be placed somewhere when I die.

I am lost. My heart is crushed. I feel as if there has been a death. All of the hope and positive thinking and optimism that I have had for 7 years that she would one day catch up...it is now dashed and I must be in the stages of mourning, because I can't come to grips with this turn of events. I do know that my life has changed again. My reason for getting up everyday has just been magnified. I am turning to my daughter as if it is the last thing I have.

I may post very infrequently for a little while because I just can't turn my mind to these things very often. To my few dedicated readers, please drop by often if for nothing but to check and see if I posted.

For all of you, please step away from your computer for a day and spend it with your kids. Read an extra book, skip work and take them to a matinee, walk in the park or drive through "BigDonalds" for an ice cream cone. Take them in your arms and imagine that they wouldn't be there tomorrow. Then spend every day showing what you feel at that moment.

If you pray, pray for my little punkin. I do, all day long for her to be healed.

You guys don't have to respond, I know you have good wishes for her. I just needed an outlet to tell someone. I am talking to myself here as much as I am to you.

See you soon!