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Monday, September 25, 2006

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 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!

15 Posts From Readers:

The Future Was Yesterday said...

An Air Force Chaplain knocked on my door a few years ago....and knocked my world all to hell. It still isn't back together. It probably never will be. I wonder constantly: why, why, why!!! Nobody ever answers.

I have no advice for you or your Daughter, because every "time" is so personal, nobody can ever crawl in your soul and feel the blinding pain, much less understand it.

I can only say I don't understand, but I do care. Somehow, the people around me kept me alive when I wanted to die...and finally, helped me realize life moves forward. Relentlessly sometimes, too fast sometimes, but it always moves forward. May you find the reason and the courage, to move with it.

Granny said...

Robert, you probably don't know me although I'm sure I've seen your comments on other blogs.

I came over from The Future Was Yesterday.

I lack the words to tell you how very sorry I am. Our differences are nothing compared to the pain we share when our kids are involved.

I do pray and I will for you and your family. May God give you grace and strength to do what is put before you.

My best wishes.

Ann Adams

The Beltway B@stard said...

Best wishes of course - and speaking from experiece within my own family, I can honestly say it will get better - you will come to grips, and you will reach a point of no more worries.

Just hang in there pal.

pissed off patricia said...

I don't know what to say. I have never ever experienced anything like you describe. I am glad you have your site to be able to talk about what is happening and about your feelings. Hopefully that will help you as you come to terms with this. We will always be here for you anytime you need us or just want to talk to someone. I know I will.

Vic said...

Hi Robert. You don't know me but I got here from that silly libs blog (the future ,something or another) he won't print my comments there because I know "things" (Im one of those awful "Jesus Freaks" Dan'l loves to hate:) At any rate You got my prayers Marine...Semper Fi.


TM said...

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.

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.

Nothing else in your post has any meaning or importance except what you expressed above. Hold on to it. It is true and beautiful.

And don't you dare feel sorry for yourself, or your girl. Don't you dare.

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

I pray. And I will pray for her tonight. Unreservedly. But I she has your love and prayers too. And if anything heals, it is love.

God bless.

Nicho said...

My friend - remember that whatever the doctors say, she's still the little girl in your heart. They'll talk of "definiciencies" and "special needs" but the fact will always remain that you are her father and she is your daughter. Nothing can break that bond.

I'm gonna email you too - more personal stuff than I like to publish online.

Laurie said...

Dear Robert,

My thoughts and prayers are with you and your family. Although I have faith in God, I often question why bad things so often happen to good people who deserve abundant blessings. I still haven't gotten an answer, but I do know that what God brings you to, He also brings you through. God bless you and yours, Robert.

Sal said...

Hi Robert. You don't know me, but I want to say you and your family are in my prayers and thoughts. Your post really hit me in the ticker, and its true, she will always be your little girl..nothing can change that. I spend quite a bit time with my kiddos, but will spend extra time for sure. Take things one day at a time,or if needed one moment at a time.

Be sure to every once in a while go out, take a break, go out to deserve a break. It's important you do. She will be fine if you do, always take a break when time allows. Sal

Anonymous said...

I'm so sorry to hear about your discovery, but now that you know about it, you can learn to live with it and make your life (and hers) a good one even with this hurdle in it. I can't pretent to know what you're feeling, but I do know what it's like to lose a child. And so to everyone else, yes, give them big hugs and love them because you never know what tomorrow will bring.

Robert said...

Wow...thank you for all the kind words and encouragement. It is truly don't know how much.

I should say that she isn't a burden to me. I mean, she doesn't have the physical disabilities that others endure, and that consumes every moment of their lifetime. She plays outside with friends and goes to birthday parties, and everything a regular kid does. She is self sufficient...She can dress herself, and handles most buttons and snaps...she can bathe and do all of those things. The part that breaks my heart is for her. Knowing that she won't be able to be a cheerleader or play an instrument or drive or anything like that.

I am blessed. She is a little angel most of the time...She is a spoiled brat the rest of the time because daddy did that to her. My wife reminds me that it is my fault all the

No, I don't feel sorry for myself friends. I have just had so much hope and optimism these past seven years that I refused to even consider the possibility that the end result would be anything less than her overcoming and being "normal." It is my personal refusal to consider all the options that has caught me off guard.

Laurie, the God I know never gives us more than we can handle. From a certain perspective, my daughter is the one who should be crying over us. God hasn't allowed something bad to happen, he has given her a gift of a guaranteed eternity, because she doesn't have the capacity to deny God, because she probably can't truly understand the concept.

Thank you for the prayers. God will take care of her, and has given her a daddy that would give his life for her in a moment.

Again, thank you for the comments, thoughts, and prayers. The latter is greatly appreciated and graciously accepted for some time to come.

Obob said...

my family's prayers are with you and your family

betmo said...

robert, it is ok to mourn. it is a natural part of dealing with a loss- and losing some of your hope and optimism is a loss. i know that you all will dust yourselves off and pick up again to build new hopes and dreams. you have a challenge to do things differently and you will rise to the challenge. you have what it takes because you love each other. whatever it takes- you will do. :)

Truth-Pain said...

I have a 5-year old myself, and as you say, life changed forever the moment she opened her eyes to me and gushed out her first goo's....
What can I possibly say to firm your resolve?... I am left without words becuase the realm of my reasoning cannot fathom what you are facing the rest of your days. Please, please come to depend on me for a laugh, or a cry, or just an ear to vent. I know the love of fatherhood, and maybe through your experiences I will learn another kind of love as well,
Be well my friend, my daughter's feet never touch the ground when she is at my arm's reach, I'm sure your's floats on air the same way...

The Beltway B@stard said...

Doing OK Robert? Just checking in on you.

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