The Secret Place
The Secret Place
Is this where Al lives when he leaves
A place I don’t know but can only grieve?
The Secret Place
Is this where Al lives when he leaves
A place I don’t know but can only grieve?
Is he seeing a place filled with smiles
That I can only wish for a little while?
Is he floating above his pain so great
Is he standing close to the golden gates?
Does he dream of when he was a child
When life was smooth and very mild?
Is he sitting with our Mom and Dad
Is he speaking of all the plans he had?
Has he seen a glimpse of Jesus too
Will he come back and tell us, me and you?
Is there a spot within his heart
That he really does want to part?
I hope with all I have to dare
That he always remembers I did care.
I wish for him to have some peace
You know he was here on a life-time lease.
I told him last night that he should go
That I understand his pain and this I know.
His eyes were dazed but I know he heard
My voice, my love in every word.
When the time does come and he must go
I know I will miss him and my tears will show.
For he is the best brother no doubt
He holds my heart with a heavy clout.
So dear God I said it for real
I told him to go I made no deal.
Now when you come and lift him high
And in a blink he is in the skies.
Please keep telling him he is the best
Remember Lord he needs to rest.
I made him promise he would save me a spot
He smiled at me and took all I got.
My heart, my soul and my memories too
Will be here waiting to see him and you.
A Breath of Fresh Air
A breath of fresh air. This is what I feel like I have had these past days Al and I have had a…
A breath of fresh air. This is what I feel like I have had these past days Al and I have had a helper.
She is wonderful. So helpful, loving and patient. She does everything for Al. I tell you I think she is spoiling him. At any time she hears him, she is right there.
I can understand why the other girl didn’t work out. There was a better choice. A perfect fit. I am getting rested. My hands are beginning to heal. I have actually felt a little lazy because I am not running back and forth doing this and that at the same time. I even laid down and rested this afternoon.
Yes, I know I am not doing as much but I still get tired. I am getting older and I am still tired from all these years of care giving alone, so I may need to rest in the afternoons for a while. LOL
I just wanted to let you know that so far this girl is amazing. I could ask for no one better.
The Talk and Tricks of the Mind
I don’t know what started it this morning, the talk. Nothing was different. I walked into the same…
I don’t know what started it this morning, the talk. Nothing was different. I walked into the same picture I always do, but for some reason I couldn’t let things go unsaid.
Let me back up a few years to the point where Dad and Al were still living together. I would say the words that described most of Al’s life from a teen on are; anger, fear, hatred. A pretty sad way for a teen to live when this is supposed to be some of the most fun years ever.
Dad never accepted that Al was different. Dad had his own issues and the only way he felt he knew how to deal with his insecurities was to take it out on Al. I have seen Dad yell, walk a way, shake his head, talk badly about us kids. I have seen Al red-faced, fists drawn, tears flowing, fear in his face. I have seen all I care to see.
There was a golden or rotten rule as I call it in our home. Mom and Dad were the boss. I could argue or try to but I could guarantee a slap in the mouth for sassing. My opinions really didn’t matter to them, they were in charge. As Dad said, he paid the bills, it was his house.
Now move forward to when Dad died and Al had his heart attack. Our sister is from another planet I will say because God would not like if I said what I really thought. Family turned their backs on us because of money. I ended up taking care of Al from the day he had heart surgery.
Now today, six years later, I have carried so much sadness because I am the one who sees the depressed face. I am the one who is not spoken too. I am the one who can’t fix what Dad did.
So day after day all these years I have walked into his bedroom with a smile on my face and a good morning to you when I get Al up. When the time was that Al could walk and M.S.A. was not even heard of, I made very sure Al got to experience life as he should have as a teen.
I did so many things for him. Now wait a minute, don’t think I want a pat on the back because I don’t. I did and do what I do for Al because he is my brother, I love him. I am not going to say there is a kindred bond between us. That was never allowed. Al and I spent our bonding days sitting on straight chairs with one toy and not allowed to speak. How could we bond, but I do love my brother.
I would and will do anything for him possible but sometimes, such as today, it just gets to me too much. The understanding side of me that tries so hard to over-look the lack of any feelings towards me just surfaced and boiled over like hot water on the stove.
At least once a month I give in and let my feelings be known to who ever will listen. I hear the same thing over and over. You are his sister, you are not his friend. He isn’t going to treat you like he does his friends. You won’t get the smiles or conversations.
OK, I get it but I don’t like it. It hurts, I am not going to lie. Although I do everything in my power to make him realize I love him it doesn’t work. I will go for weeks trying to push aside the hurt, then it comes out again.
Today, I was bathing Al and I just had this sick feeling. Inside I was bubbling over with thoughts of I do everything for you and all I get in return is tears, snotty nose, anger, no smiles.
Should I go on? No, because then it once again sounds like I am doing something for a reward. The only thing I ever have asked from Al is that he just lets me know in his own way that he loves me too.
I had him almost completely washed and I just put down the wash cloth and sank on his bed. I looked at him but he didn’t look at me, he never does. He has never looked at me when I speak to him. He will smile at me big if he knew I was taking him to an antique store or to Wal-Mart to get a new car.
It always reminds me of when I was young and I was a good girl. I would get rewarded for being quiet by getting a sucker. So this morning I just told him flat-out I wanted a smile. He ignored me. I asked him if he was having pain, he said no.I asked him if he got enough to eat, he said yes.
So I fell into my familiar trap. “Why are you so depressed-looking then. Why no smile? No pain, belly filled, cleaned up and clean clothes.” He responded with ” I don’t know.”
I edged further, my deep questions. ” Why don’t I get a smile, just one like your friends do? Why don’t you chat with me like you do everyone else?”
His response was tears and runny nose and then finally he said, ” Because you and I don’t get along, just like Dad.”
Well that was sort of a big deep void for me because I couldn’t fix what Dad had done. I was not allowed into family issues until after Dad died. I have explained to Al for six years that I am not Dad, that I loved him. I have told him numerous times I take care of him because I love him. I told him that no sister/brothers get along all the time. I told him that I get tired just like he does. That it makes me sad just like he does to see this illness doing what it does.
It didn’t matter. He sees me as Dad. He and Dad didn’t get along at all. His life was hell in his eyes, so the times that Al and I disagree, Al carries it for life. It is me, Dad and me, me all the same person.
He cried harder knowing he didn’t really understand why he feels the way he does. I think his mentality challenges doesn’t help separate the truth from the actions. So I am still back at square one. Nothing will change. I get a little hard inside, telling myself not to get so involved. Just take care of him, do the best I can and be done with it. I tell myself to quit going out of your way because you are never going to get it through his head that a sister and brother can argue but that doesn’t mean that I am Dad.
I know this is personal, I know you, my friends can’t fix it, but I swear on my grave, I am having pain in my hands today from Diabetic Neuropathy, my body aches from tugging to roll Al over and I just don’t need a headache on top from crying, so I wrote.
Al is doing pretty good on being home five out of seven days now. I think he likes not being tossed around on the bus and isn’t quite as tired. Although if he had his way he would go to Day Program five days per week.
His crying has leveled off quite a bit. The doctor took him off one of the medications and I think that was the culprit that made his tears so much worse. His appetite has been big lately. I guess he makes up for the days he doesn’t eat.
He got a Christmas card from a lady who also is in the M.S.A group. He really likes it and holds it quite a bit as it sparkles when you turn it in different directions. If anyone wants to send him a Christmas card, please email me at firstname.lastname@example.org for his address.
Although we have had our tree up for sometime Al has begun his ritual of now not being able to talk about Christmas. He doesn’t speak about Christmas that he and I share. His memories go back to when he lived at home and Mom and Dad were still here.
I heard him telling someone that he hated the holidays and yet he likes the Christmas tree lit up and the white lights in his bedroom. So I guess the point is he misses our parents so much and he longs for Christmas to be the way it used to. Deep down inside, so do I. I just don’t talk about it.
He has been complaining of burning feet the past two days. I have researched it and find that many M.S.A. patients have this issue. It is sort of like Neuropathy I think, caused from the disease. I give him pain medications but like his other symptoms the medication takes the edge off but doesn’t fix it enough.
Al and I had an interview with a young lady today who wants to work the weekends. Al started talking to her almost immediately. Filling her in on his coca cola and cars. She jumped right in and helped turn him and was dabbing his slobber.
I have to admit I was really impressed. She is strong too. She had no problem rolling him over. She said she wanted the job so I am hoping she will or can start this weekend. She will mostly be with him but I spoke to her about dusting his room and feeding him. Cleaning up the dishes. I think it is fair, don’t you?
I told her there would be no medications to give as I do that. I explained that her major job would be making him feel special, she agreed.
So, it looks like we may have help again. Her words when she was walking out our front door were, ” You both are stuck with me.” I smiled and hoped that this would be a true statement.
Excuse me while I tell you about what I was thinking while sitting in the lady’s room on the throne. I know, right? We get some of our best ideas in those little rooms.
I actually was thinking about how Al had struggled all morning with breathing. Nothing looks any different on him, but listening, you can hear changes. Well that thought drifted off to Mom and Dad.
I was wondering how they would feel about the care I give Al. I was going back in time and remembering all the “rules of life” they instilled in us kids.
Now many years later I look at myself and see that I didn’t listen to everything they said.
Some of the rules I can remember getting ground into my head were;
1. Don’t eat with your elbows on the table.
Well I do have excellent manners when I dine out, but here at home, I don’t care as much. Who sees me? Only Al and Rhino and they don’t care as long as I am here.
2. Bedtime is at 10pm. I don’t care what others do, at this house these are my rules.
Well, I have tried to listen to those rules. Only because they are in my mind still, but it doesn’t work. How many times have you went to bed at the proper time and did nothing but lay there and toss and turn? In the morning you feel like you have been ran over by a truck. You feel like crap. What I have learned for me is, go to bed when I am tired, well as long as Al is in bed. If I lose or gain sleep time, my body will generally let me make it up the next evening.
3. Get up early The early bird gets the worm, the late riser gets nothing and shows how lazy he/she is.
I don’t get this at all. I never liked getting up early. Even now I don’t get up as early as Mom and Dad would have. Especially on the weekends. They were always early risers and I didn’t see any worm beds growing in our house.
4. You must put in a hard day’s work every day. You will be happier.
Well I am going to be brutally honest here. Mental work can be quite heavy also. Caring for Al, there are times I would like to lay down and rest before lunch time. Now that I am a little older naps are much more exciting to me then when I was told I had to take one every day; up until the day I started Kindergarten.
5. Don’t chew with your mouth open.
Now this rule I have stuck to. I don’t chew with my mouth open because I don’t want my delicacies falling out and being wasted. Besides, to me, I don’t think it looks appealing.
6. Don’t play across the street with those kids. We don’t know them.
Now here, I don’t agree totally. Yes, there are some warning signs that are obvious to the eye that I may not want to allow my kids to wander the neighborhood. But my Mom and Dad had different reasons and I won’t go into that, as it would be another whole post that I would not care to write about.
I believe that we are a nation under one ceiling. We have different colors, cultures, habits and religions. But God made each of us in his image. I have many friends who are not white like me. I love learning about culture, and I find people in general have at the very least, one fascinating thing about them. All we have to do is look. People in general are loving and want to be loved, just like you and me.
With the times changing it is a pity that now we have to be more careful about viewing the world for what it really is and not what we hope it is. There are more dangers now than when I was being taught by my parents. Let me give you a wide example.
When I was a kid, on Halloween night, paper bags, not plastic, flimsy sacks were used for products. I would take an empty one along with my brother and we would trick-or-treat the whole neighborhood. There was no watching for porch lights on. There were no razors in apples, or sticks of gum with poison in them. It was a fun and innocent night for kids and when we came home our bags were full of goodies. Many time I was eating while trick-or-treating. I didn’t have to wait until I got home and have my candy inspected by parents or x-ray machines.
7. Don’t speak back and never argue with your mate.
Now this one is probably my worst follower in my own life. My parents taught me children are to be seen and not heard. Children should be quiet and sit on chairs. It is no wonder when I was in elementary school I got bad marks on talking out loud. I was finally freed from silence.
I do not agree with not speaking up. It is what has made me so afraid today of voicing my opinions. It has made me sick at heart when I let people run all over me. Forcing their opinions on me when I have my own individual thoughts. I was not allowed to be creative. Thankfully, through writing I am healing on this issue.
I don’t believe in arguing either. I used to, don’t get me wrong. If I thought I was right, I was sticking to it no matter what. Now I have learned, it’s alright to voice my thoughts, and for my mate to say his. When each has spoken a decision to meet in the middle is agreed upon. Two adults conversing like two adults. I would never want a mate to bully me. Beating me, cussing at me, is not the way to treat another human. It is alright to agree to disagree.
So all in all I took what my parents taught me and used what felt right for me. I think they did a pretty good job. Thanks Mom and Dad. for caring enough to teach me.