I feel a little like a ball of yarn this morning. Strands of yarn unfolding in different directions. Not really going anywhere, unraveling on the floor to be stomped on or touched for softness, or maybe admired for colors.
I get pretty close to writing my true feelings in my postings but today, I feel like the only way I can put my strands of yarn back together is to be slow and smooth, sorting out thoughts. Winding the yarn around my soul piecing each strand smoothly so as it looks like it has never been touched.
You all know from reading my blog that I take care of Al. I am not only his caregiver, I am his sister. I would say that although he and I were not allowed to bond when we were young children, there has always been a part of me that has been very protective.
I don’t know when this instinct or learning behavior kicked in. I do remember telling kids on the school bus to leave him alone. Al wanted friendships so bad when he was growing up. More intelligent kids picked up on this too easily.
They would pick on him on the bus. Make fun of his name, which was popular back in the times of Alvin and the Chipmunks. They would mock his name, knock his lunch to the bus floor. Al mistook the laughter for acceptance and this broke my heart making me very defensive of him.
The laughing still haunts me today as I write this. I can vision these rude kids sneering, covering their mouths and yet getting more attention by their own silly actions. Kids are kids right?
I don’t believe that children who are brought up to respect each and every soul act this way when they are in grades 4, 5, and 6. My face used to turn red from anger as I knew what the purpose of their mockery brought.
I became the joke, the butt joke also on the bus, but I didn’t care. No one was going to get a way without hearing what I thought of their actions. It sort of escalated from that point on.
Although I was not involved that much with Al when we were teens I always had that guard ready when it concerned him. It feels so common today for me to still have my guard and full-bodied shield up and ready to attack if someone says or makes rude gestures towards him.
I have had to work very hard at understanding the other person’s view. Not everyone is comfortable with a mentally challenged human, I get it. Wheelchairs, oxygen tanks, lack of control over words mouthed, body parts moving is not something we deal with in everyday life.
I would rather see a very young child come up to me and ask me questions about Al than the comments and gestures made by adults. I feel children are innocent. They are curious, they want to know. Adults know better to act in any way other than respectable.
I have come to the conclusion that people sneer or act rude because they have issues of their own they can’t deal with. Seeing someone like Al has all of a sudden thrown some out of their comfort zone and forced them to see that our lives are not actually beds of roses.
I have dealt with so much through Al’s illness. I have had to face the fact that our Dad was not the hero that I once thought he was. Although I love him dearly he made mistakes with Al. Errors that have been carried in Al’s heart to this very day.
I have had to come to terms that Dad’s lonely heart can be more powerful than protecting your own children. I have had to take on the sorrow of losing friendships and closeness of ones I used to be so glued to because I am caring for Al.
I appreciate the fact that so many want the best for me. People want me to be happy and live that normal life. To love and have fun. Laugh and be free, but when I did not choose this route the roads did split and for this I feel sad inside.
I believe that the brother sister bond goes much deeper for me than the mere fact that we are siblings. For me, I realize Al and I are lucky to be where we are today. With the fact that I was passed around sexually when I was two and three, and the fact that Al was not treated as one of God‘s special babies, we have gone through much to get here today.
I believe the bond between my brother and I is survival. An intense need to be wanted and accepted in life. Today I hover over him like a hen with chicks. I want to do everything in my power to make him comfortable. For quite some time I have gone over board trying to get smiles from him.
It is sometimes difficult to watch him struggle to brush his teeth or let him feed himself. He needs to retain the independence he so deserves, but for me I see the struggle and I want to jump in and rescue him.
It is very difficult for me as it is or was for anyone else that is watching a loved one die. Every time a comment is given to me that lets me know he is declining, I have to deal with this alone, and yet still put on my happy face when Al is in my view.
If I didn’t have my blog here I don’t even have to wonder if I would be as mentally healthy as I am today. I know I would not be. I need your friendships. I need your words of comfort. Am I supposed to be needy when all I have to do is go to God and say help me?
Maybe, maybe not, for me I know God is with me at all times. But I also realize that I am maybe a more needy person than others. I require friendships and words here on earth too. I can’t seem to help it, but I do accept that this is who I am. I don’t even want to go back in time and analyze that this or that is why I am today. I just know that this is who I am.
When I took that beautiful photo of Al and Rhino last night it represented more to me than a new picture. It represented a bond between Al and a need for acceptance. It showed me that Al can feel and Rhino can accept and the two can respond to each other. They bring comfort to each other.
I truly believe that Rhino knows that Al is sick. I have wanted the bond between the two to work ever since Al came home from the nursing home. It took about a month, but it worked. Now when Al is home Rhino is right there.
I did observe Al was not dressed for a public view, so I worked as carefully as I could at making sure that the photo was acceptable and that what you took from the photo was not his skin on his chest showing; but the love that was transpiring from pet to human.
When I received the email from the lady asking me to be careful of what photos I posted of him, my guard came up instantly. The love that I felt looking at his picture was instantly tainted with ugly and dirty thoughts which I had never seen.
I did let Al see the photo and I did get permission to post it. I didn’t think too much of it. Most of last night I pondered on what I had done. Had I over-stepped my boundaries with Al? Was I thinking more of me than of him?
I still don’t know the answer this morning. I only know the fact is that I was so proud that Rhino and Al had finally made it to best friends that I wanted to share it with all of you. If I am guilty than I am an innocent, guilty person.
After sleeping on it all night I have come to the conclusion that I will still post about Al. I will still show photos of him, but I will be refraining from showing him without a shirt on, just for the purpose of his privacy.
I will continue to love him, and keep trying to understand other people’s views, and I will always be on guard for anyone trying to hurt him in any way, but I will definitely keep bragging, smiling and crying by writing posts about the brother I love so much.