I must be the wickedest person that ever lived. In the last 17 months I have been stressed to the limit. I feel many times throughout the day and night that God has abandoned me. I have not lived my life for Him and he does not smile down on me.
He has rained the worst life has to offer onto my child and myself. We have suffered the worst indignity imagined by man…my son’s life as most people know it is gone forever and therefore, so is mine.
He cannot move, which is a nightmare in itself. Think of it. Imagine it not with just your mind, but with your very being, not being able to move or use any part of your body. Now, imagine not being able to scratch the itch on your shoulder or not being able to get up and get yourself a drink of water. Or, what if you couldn’t walk to the restroom when you needed to. Or, how about being able to just blow your nose when your head gets stuffy. Or, turn on the television or radio. What if you couldn’t hug your child, your parent or your lover? How would you feel?
I WANT TO SCREAM WITH THE INJUSTICE OF IT ALL!!!!
But, all I can do is cry and rant from the inside out…it hurts…it’s the most painful, heart wrenching situation imaginable and there’s not a damned thing I can do to change it.
I know he suffers, but so do I. My life was just beginning. I had given all my young years to raising my children. I had struggled throughout, doing the best that I could with what was given me. I had just bought my first home. It is a real fixer upper. We were working on it. Making it the way we wanted it. When my son was hurt—irrevocably and forever hurt.
It has three bedrooms, one for us, one for the grandkids when they came to spend the night and one for my small home office. Now, the spare bedroom is my son’s room—the grandkids really can’t spend the night with us anymore. It is becoming the most hated place in my home. Not because he is there, oh God, I love my son. But because of what he has become.
Dependent, completely and utterly dependent for help with everything. He needs a drink I have to get it for him. He needs the oil wiped from his face and his glasses washed clean I have to do it for him. He needs a pimple popped I have to pop it for him. He needs something to eat I have to feed it to him. He needs to evacuate, I have to provide this service for him too. He needs to get up and get dressed. He needs to go to doctor’s appointments, physical therapy, occupational therapy, college classes—I have to take him wherever he needs to go. He is dependent. And, now I have no other life. His life is mine and my life is his, utterly and completely.
I have spent all of five hours or so with my friends in the past nine months. Today, Oct. 8, 2008, I actually almost had three hours home alone. The place that is supposed to be my sanctuary…my haven from the world, has become my nightmare. A place filled with stress where I’m afraid to go to the bathroom in the middle of the night or early morning, because if I do he’ll hear me and want me to do something else for him. Something else at 3 a.m. or 5 a.m. or 6 or 7 a.m. It is my nightmare and I can’t get away from it.
I work. My job is filled with fun activities. I used to enjoy them, although they tired me out. But now instead of a leisurely walk through an event I have to hurry, because my time is limited. The aides only have a certain amount of time, five and a half hours, they can get paid each day for his care and I have to work within those parameters. If one event goes over the time limit I have to take the time from another day.
He is my son. He is paralyzed, completely. He is unable to do anything for himself and I love him with all my heart. God help me!
At least my son still has his tongue and can tell us what he needs or wants. I was supposed to not use my tongue at some point this week. I don't have to use that appendage. I can get my point across with writing, so can my son. But without his he would not be able to use the computer program his brother gave him that allows him access to the Internet, therefore to some parts of the rest of the world. Without my tongue I would not be able to read to my son, who also loves to read, and right now we're reading "Left Behind" and he has a lot of questions. And, I answer them as best I can--with that tongue that God so wonderfully gave me. So, Pastor Jack, my tongue really isn't my voice, my writing is and it's the most eloquent voice God can give me.
God willing our lives will get better. It's not going to happen overnight or tomorrow or even next week, but someday God will smile down upon us once again and bring His light back into our lives.