In case I haven't said it recently I hate Cerebral Palsy!!!!!
The last couple weeks have test me to the max. Keli has been taking phenobarbital since she was born for her seizures. Phenobarbital is a very strong narcotic drug. About a month ago we started to wean her off of this drug because usage past age two is not good for her. This drug is very effective but has a great number of side effects. Well weaning her off this drug is like taking a heroin addict's heroin away. She is very addicted to it. To make matters worse you add in Cerebral palsy and it is a recipe for lots of miserable days and sleepless nights. One of the fun things about CP is that anything can trigger a "flare up" and then it become this terrible snowball effect.
So now that I have explain the mechanics of our present situation let me explain my feelings. I am so frustrated and tried. It constantly feels like 2 steps forward and 20 back. It is such a helpless feeling to see your baby in so much pain and discomfort and not be able to fix it. I once had someone tell me that I make raising a special needs child look easy- what a joke! I am human and I reach my breaking point nearly everyday. I am constantly on the verge of tears and sometimes I just can hold back.
What keeps me going and holds me back from the deep end? First and formost my faith in the Lord and that He will supply me with the strength to make it though another day. Secondly, Keli, if that little girl can endure all of this and still have a smile on her face I can keeping plugging along too. If you want to know the truth Cody and I are positive that we have been charged with a very special task of caring for a someone one that is so special words can't describe. Her purity and sweet spirit never cease to amaze me.
Today was Keli's dedication. Found it such perfect timing that during this time of struggle I am dedicating myself to raising Keli in a the ways of the Lord. Also found it ironic cause most of the time I truly feel as if Keli is constantly teaching me more profound lessons than I could every teach her.
Keli I love you with every fiber of my being and just hope that I can be the Mom to you that God wants me to be.
