The Thief

I can't even begin to tell you how much I hate ALS. I call it the thief because it has stolen so much for me and the ones I love. I hate it. I hate it. I hate it. ALS has destroyed Chris body. But it will never take his soul. That belongs to Christ Jesus. I have really came to grips with the extent of Chris disease in the last month. He is now on hospice home care. To be put on hospice a doctor has to think you have 6 months or left to live. That means we have an aid that comes Monday - Friday for an hour or so to help with bathing, and personal care. An RN, therapist, breavement counslor & chaplin comes once a week and a doctor comes when he needs to see a doctor. Hospice has been a tremendous help. I would reccomend Arkansas Hospice to anyone who needs them.
Chris is really really bad. He weighs maybe 115 pounds. He can't talk and he can't do anything for his self. Someone asked me if he was bed ridden now. and i said no. But then later I started thinking about it. I guess he is. I do get him in his wheelchair every day, but if I was not physically able to pull & lift him out of bed he would be "bed ridden." One of the hospice ladies told me they have never seen a patient at home in the condititon Chris is in. I want him at home. The only other choice is a nursing home and I don't want him there if I can help it at all. I'm not crossing that bridge unless I'm dragged across it. That is not how I want my kids to rember their Dad. And a nursing home is not a place for a 38 year old!
A few months ago Chris elected to have no feeding tube or artifical ventalation. I was really mad. But now I see he is braver than me. Who would want to be kept alive like that? Not me. Statistically, ALS patients who choose not to have artifical ventilation don't die of ALS. Phnemonia is the cause of death. I have read everything there is to read about ALS. It is the most cruel disease in existance. 0% medical chance of survival. People just degenrate and become totally peralized, but their mind & ability to feel all touch is still completely intact. A mosquito could bite Chris, he can see it happening, feel it bite and feel the itch. But he can't swat it, tell someone to kill it, or scratch the itch. Peoples progression is different. But it does not usually slow down. Chris' has been very rapid. It sucks. I hate it.
Chris still believes he is going to be healed here on Earth. I wish I could say I believe that to. But I see the impending death staring me in the face. All day. Everyday. I can't selfishly beg the Lord to keep Chris here with us, when I know Paradise with Our Lord and Savior awaits him. God how I would love to see a healing miracle first hand though.
ALS has stole my role as a wife. I have not felt like a wife in over a year. I am caregiver or mother to an adult size baby. My love for Chris has changed, its almost like I love two diffent people. The old Chris was my best friend, lover, protector and perfect match. The Chris who is here now is my child. I take care of him, protect him and comfort him when he is in pain.I love this Chris like I love my children. If I could have back just one part of the the old Chris it would be his ability to talk. It is so indescriably frustrting not being able to communicate with him. I am so so lonely. Friends always tell me if you need to talk I'm here. I know they are, but what do I say. My life sucks. I hate the situation were in. Do I feel any better after telling them that. No. So whats the point. When I get the opportunity to escape this sick house I usually don't want to talk about it. I need some reprieve from this existance.
I have to stay stong for my kids. They are what keeps me going. I love Brittany and Braxton with all I have. I wish I could give them back all ALS stole from them. I try to be the best mom I can be, but some days I feel as if I have nothing left to give. I'm in survival mode, i make it through one day at a time, sometimes I just pray to make it through the hour. I can't even plan the kids a dentist appointment because I don't know where I would be mentally on the day of the appointment. Some days I do ok and otheres I want to run away. If it wasn't for The Lord holing me up I would have faltered long ago. The hospice therapist told me I am numb. That is a good word for what I feel alot of the time. I have been hurt so severely over and over I have built up a thick thick wall to protect myself. I hit rock bottom two months ago and I used those rocks to build a fortress. It takes a whole lot to make me cry now, where I use to bawl like a baby. I don't like
the numbness. But i hated feeling weak. I wish there was a guide book, How to deal with ALS, but there is not. I deal the only way I know how. Wrong or right.
I use to feel guility about feeling the way I do and griping about what ALS took from me when look what it has taken from Chris. But I can't help the way I feel. The thief, has stolen so much from Chris, me, our kids and other loved ones. I hate it. I hate the devil. I can't wait till Jesus Christ throws him into that pit of hell and he will burn for eternity!!! God did not give Chris ALS. All good and perfect gifts are from above and I can promise you ALS is not good or perfect. But I know the Lord is using Chris' testimony for His glory!! I know souls are being added to the Kingdom because of Chris struggles. And I know that the Lord looks down on Chris and says well done my good and faithful servant.