Finishing Blog Below Doors Opening and Closing

D's favortie things was lights, fans (ceiling,etc), and balloons. He never played with toys. His one favorite doll that he carried everywhere (his mom went out and bought 4 etc. so he wouldn't run out of it) was his Bart Simpson Doll. I signed him up for Handicapped bowling. There were kids with all kinds of problems, and he enjoyed it. We went on Saturdays. They make a special wire ramp so that all we had to do was place the ball at the top and the kids just had to push the ball and off it went. D couldn't make alot of sounds but he had a laugh that would light my heart up. So I did everything I could to make him laugh and took him to everything I could think of that I thought he would enjoy. We bowled for about 4yrs and he won trophies and patches which I have in a special box. We had been bowling about 2 months and one of the mothers was talking to him, I had to tell her he couldn't hear (we were never sure if he was deaf or if it was the autisim) she looked at me sort of funny and said "she thought he could hear because I was always taking to him." Nope I treat him like he dosen't have any problems, I didn't tell her that I just love to talk. He loved camping. One of my friends bought a campground about 2hrs from where I lived, which was cool because we had alot of our friends that would come there also for the weekends. It was on a river. He loved the campfires. I would put him in my lap and we would sit there for hours, everytime sparks would fly when someone would poke the fire and it would make him laugh and his little hands go ninety miles an hour in the air with excitement. The campground had the big truck tire inner tubes and we would all pile into them (naturally tieing an extra one to us that had the cooler). D would sit on my stomach and he would laugh all the way down the river. D's mom's mother n law asked one weekend where did I take D this weekend. She said camping and about now he is floating down the river. She almost had a fit on that answer. I saw where they were having a HotAir Balloons going off in Wisconsin so I packed him up and we went there, not knowing that we had to be there at the take off place by 5a.m. if we wanted to see them blow up and float. Well we were there and he loved it. I always borrowed his parents movie camera and was always filming everything we did,even when he would sit in my lap before bedtime and we would just talk and play in my recliner. He learned to drag his mom to the stack of films I had made of us and almost everyday he would pick one out and sit for hours just watching us. He was about 13 when my mom died and at the time she was living about 10hrs from me. 5 months later my grandma had a stroke who lived near my mom. I was making a trip down here (I live here now) about every other month because only my Dad was taking care of her. It was the hardiest decsion I ever made and that was to sale everything and move here. D's mom said he could come and see me on all his school breaks, they would meet me halfway and that he could stay here for the summer. With heavy heart I left and moved here. First trip here was in my van, D was behind me in the back seat and I heard him giggling. I looked in the side mirror to see paper going out the window and then he launched a whole roll of paper towels. When we got here he came into the house (my house is small and the windows are low to the ground) immediately got excited and went to every room. It was like he thought this place was made just for him. We had so much fun. I had a pick up truck (the neighbors cows would get in my yard) so I would put D in and strap him into the seat and take off, bouncing him all over the property while we chased the cow back home. I have a small section of woods and I would fly by the trees and he loved the branches hitting the windshield. My porch was screened in and my sister got him an old school desk, I would dress him every morning and within an hour he would strip down to his pullups and sit out there all day. Looking at old magazines etc. and he even would eat out there, and just sit there laughing. One night he was out there and I could hear his laughter, I went out to see what was going on and he was in the corner of the porch with his little head pressed against the screen and laughing so loud. I looked to see what he saw and it was the Lightening Bugs. I swear that I never saw so many, it was like they were there putting on a show just for him. The first summer that he quit coming here, I'm telling the truth, I didn't see one light up, it was as if they had gone away with him. Well summer was over so I didn't get to see him until spring break, I met his parents at the bottom of Indiana. When I walked into the the room she was on the bed and she was changing his pull-up. He jumped into my arms, wrapped his legs around his arms around my neck and put his head on my shoulders, and hugged me so tight. I still can feel his little arms. He wouldnt let go. His parents were going to pay for a room so I could stay and visit with them but he wouldn't let go of me so I told them to get his things and we would head back to my house. This went on for about 3 yrs. D could only see out of one eye and when he would get upset he would put his little hands together and hit himself in that eye. One day she called and said he had detached the retina and they were taking him to childrens hospital and because of his problems they were going to have to put him on a support system and sorta like put him in a sleep state for about 4 days. I ran up there. I never want to go back to a childrens hospital ever again. I could hardly stand it. All the little ones that were sick. When I walked in and saw my D with all the tubes and machines running out of him I thought I would have a break down right there. They said he wouldn't know we were there, but everytime I laughed his little body would try to lift up. The nurses said they couldn't believe it, they said he knew I was there. Well they did the surgery and it detached again and they tried one more time and it didn't work. The only thing my D had to enjoy was what he could see out of his one eye. So now the lights, balloons, watching our videos was over. I was so sorry that I was never able to afford to take him to Vegas and Disney World (they have the electric light parade at night) he would have loved all the bright lights. I then and now can hardly stand it. It isn't right that he lost his sight, he had enough problems without taking away the one enjoyment he had, I'm so bitter about it. I said that God is going to make me live for a 1000 years because he is not going to want to face me on that one. Now we had to teach him sign language in his hands, and he has learned. When D was about 7 his parents had another child, a little girl. D's mom was scared while she was pregnant. Docs had said they didn't think what D had was inherited. At that time they hadn't put a name to it. D's mom decided not to have the baby checked while she was in her womb, because she said she would not terminate it, so it was a wait and see. She was born normal and right after that the docs gave D the name of CHARGE and it is inherited. With D blind his mom was having a hard time with taking care of D and his sister. We talked about him coming to live with me but to my disappointment they decided it was two far for him to go, so he is now in a group home. We also had to make the decision that I couldn't see him and he couldn't come here anymore because he had to make the adjustment and it would only make it harder on him. I finally got to see him last year for the first time in about 3yrs, and I have been so sad. Yes he wanted to go home with me as soon as he knew I was there (they brought him home for the weekend). I still can't get his little eyes out of my head. His pupils are totally gone. His eyes are all white. I see them in my sleep sometimes and I reach out and hold him so tight. I worry so much that he thinks I have deserted him. I would much rather think he forgot me than him hurting as bad as I do inside. Anyway that Door has closed.