Rusty was a very special young man. He was my nephew and I loved him alot. He suffered from a terrible crippling disease that has such a long name that I couldn't begin to pronounce it much less spell it. He had alot of things wrong with him, but the disease that he had was inherited from his Grandma Rose. Rusty was only expected to live to be about 5 years of age, but I believe that the love of his family...mainly his mom [my sister Shirley] gave Rusty the will power to go on and live until he was 22 years old which is remarkable considering that god awful disease that he fought daily. Shirley was his everything. She took care of Rusty from the moment they brought him from the hospital not knowing he had the disease until the day his little body could take no more and he finally went home to the Lord. Rusty was one heck of a fighter! He went through more hell on this earth then anyone should ever have too! He was such a cutie. Looked an awful lot like his daddy [Russell] my brother-in-law. Shirley was dead set against putting Rusty in a home. She always said she brought him into this world and she would be the one to see him out of it and she did just that. He passed away in her arms holding his little hand on her chest and when he was about ready to go he called "Mommy" in a real weak little voice and his arm came down and he was gone. It was the sadest thing I've ever experienced in all of my life being a witness to someone losing their child like that. It's something you don't ever forget. My sister Shirley has been through so much in her life. She & Russell were just kid's themselves barely 14-15 years old when they got married and had Rusty. They had to grow up really quick to take care of a handicapped child from the get go. They were there for Rusty all the way and I can't begin to express just how much I admire them...especially Shirley. I'm grateful to God that I was given the opportunity to know Rusty as well as what I did. He & I had a very special bond between us. I used to take him goodies to eat and would make over him and boy he just ate that up! I would go over to where he sat in the recliner in their living room and hold his little hand and talk to him and he'd just grin from ear to ear at me. He had quite the ornery little fart at times let me tell ya! Ha!Ha! I'd tell him that I was going to get his toe and I'd take hold of it and he'd laugh at me and tell me "NO", and it was alot of fun to enteract with him like that. One time I was at Shirley's and I took my cell phone out on her deck and called John. Rusty was sitting in the recliner watching me as I came back inside and all of a sudden he let out the biggest whistle at me because I had lost alot of weight and was wearing shorts! Ha!Ha! I couldn't believe it. It was hilarious to say the least. Shirley & I both cracked up and of course Rusty was shaking his head and laughing about it knowing it was funny! Ha!Ha! I teased him back by saying that he'd better stop flirting with me like that or I was going to tell John on him. He laughed and kept saying no, and goes "KISS"! Ha!Ha! It was the cutest darned thing I ever saw him do. Shirely says to this day that Rusty had a big crush on his "AUNT MARGIE"! Ha!Ha! I think maybe sis was right about that. Rusty had a fantastic disposition and zest of life when he wasn't in any pain. But, when he was hurting it was so sad when there was nothing that anyone could do to help him. I cannot imagine what Shirley experienced on a day to day basis with watching her first born son deteriorate daily knowing he'd never get any better. It was heart breaking and all I can say is that she was one heck of a mother to Rusty, and has always been a good mom to Jimmy & Robert as well. There aren't too many people that I admire anymore then I do Shirley! Sharon's 10 year old son Jason has the same disease that Rusty had and they came very close to losing him right after Aunt Norma died. I didn't think he'd ever make it to Macomb hospital alive but he did thank goodness. The doctor's in Macomb didn't expect him to make it either. God was definitely with all of us that day! The cruel thing about that disease is that they can be fine when they go to bed and might not wake up the next morning. There was a write up about Rusty because he lived longer then anyone with this disease. Shirley is little Jason's guardian angel and takes care of him all the time for Sharon so she can work. Shirley has been little Jason's care taker ever since he was born. He thinks of her like a 2nd mother and is very close to the rest of Shirely's family too. Little Jason adores Bobby! He's his "HERO" big time. We all like to spoil him because we don't know how much longer we'll have him around. Rusty used to call little Jason "BABY". The girl's half sister Connie had a little boy Joshy who also died from this disease. The girl's had a half brother "JIMMY" who also died and they think he probably had it too. It used to make me feel so sad when I'd see the other kid's outside playing in the yard and poor Rusty would scoot up to the door and just sit there and watch them play. It just seemed so un-fair that he had to miss out on just being a normal child and go out and have a little bit of fun with the others. He enjoyed his life though and he made the best of everything. Rusty loved to go to school and he enjoyed riding the bus alot. In fact, he didn't understand that he couldn't go to school on the week-ends and he'd say...bus? We'd tell him that it was the week-end and they didn't have any school and he'd have to wait until Monday. They had a van that Rusty just loved! He'd call it the boom boom van! He always wanted to go for a ride in the boom boom van. He'd say...Ruddy go bye bye, and keep repeating it over and over. Rusty's very favorite place to eat at Hardee's. He loved it when his class at school went to Hardee's to eat and spend some time out and about doing what ever that day. He was a little ham, always performing for people! Ha!Ha! I remember one time I drove my son Jay's car down to Shirley's because Jay had just gotten it and I thought it'd be fun to drive down there for the day. It's a real pretty tourquise camaro. Rusty had never seen this car before. Anyway, I was inside when the school bus came with Rusty and Shirley went out to meet the bus so she could get him and wheel him around back through the kitchen since he was in his wheel chair. I was standing by the sliding door right there and over heard Shirley tell him that someone was there to see him, did he know who it was? Right away he says..."MARTY", meaning me "MARGIE". I couldn't believe it! Russell's brother's name is Marty so there for awhile we thought that's who he was saying but we soon came to the conclusion that he was saying Margie and didn't mean Marty at all. It got to where I couldn't say good-bye to Rusty when I was ready to go home because if I did he'd pucker up and cry. That tore me up so I had to stop doing that. I wouldn't say good-bye to him anymore and that little stinker picked up on it knowing when I was about to leave and he'd say...bye real sweet like. He was something else! Shirley's mom [Rosemary] always referred to Rusty as her little man. Rusty was very silly over his 2 brother's Jimmy & Robert and would cry if Jimmy went somewhere. Rusty called out his family's names all the time. He & Robert shared a bedroom so he thought Robert was about it! Ha!Ha! As soon as Rusty would see me when I'd get there he'd say, "JOHN", because he knew who went with who just as he knew what kind of car people drove. He was a pretty smart little cookie and so is little Jason. Rusty loved my daughter Jeannie. After Jeannie would go home Shirley would tell me that he'd call her name for a good week non stop. There weren't too many people who Rusty didn't love. But, if he didn't like someone he wouldn't pay any attention to that particular person and wouldn't say their name. He was like Aunt Norma in the fact that when he told you he loved you he'd say..."LOVE YOU"! I dearly loved Rusty just as I do Jimmy & Robert and little Jason, but I would NEVER wish for him to come back the way he was when he died. We all believe that he's in a much better place just like all of our other loved one's...out of those tormented bodies, and whole again. We believe we'll see Rusty and all of our loved one's again someday when we experience death ourselves. After Rusty died Shirley, Robert and Rusty's old bus driver Linda Brandt experienced some signs from Rusty letting them know that he was ok. Shirley said that one day Jimmy's care was parked out in the drive there at their farm and his horn went off. The key's were in on Jimmy's bedroom dresser so explain that one to us! Then, Shirley said that the T.V. would come on all by itself and that happened 2-3 different times. Robert was outside mowing the yard shortly after Rusty died and just happened to look up at a huge tree alongside their drive way leading out to the road and there was Rusty sitting up there as big as you please just watching Robert mow the grass and Robert said he smiled at him and was gone. He said that Rusty looked completely normal to him from what he could tell. Shirley swears she saw Rusty walking around in the field by her house where she keeps her horse's. She said that he looked just like Russell did when he was alot younger and had long curly dark hair. She said he wasn't there for long, and ever since these incidents happened they haven't experienced anything else. Rusty paid them a few visits to put their minds at ease no doubt. Rusty's bus driver Linda Brandt was driving the bus and told Shirley that she wasn't even thinking about Rusty at the time that she happened to glance in the back of the bus and saw Rusty sitting in the very seat that he used to sit when he went to school and rode that bus. She told Shirley that he looked normal to her from what time she had to actually see him at a distance. I experienced an incident when I used to work in Bettendorf Iowa taking care of 3 kid's who had lost their mother to cancer at the age of only 26 same as my mom was when she too died of cancer. I was downstairs in their basement watching Hunter as he laid on his stomach watching cartoons and I was just sitting there quietly at the time not saying a single word when all of a sudden I felt the material on my sweatshirt on my right upper arm press down on my shoulder. I didn't panic or anything I just turned my head real slow and looked down and as I did that the material slowly went back to the way it was right in front of my own eyes so I do believe that our loved one's spirits do visit us. That's not the only time that I've witnessed the un-explainable! Rusty used to stay awake all night long when he knew that santa claus was going to be coming! Shirley told me that every night just like on the T.V. show "THE WALTON'S", Rusty would tell each member of his family...Good-night! Shirley would put music on and I'd say come on Ruddy...sing! He'd go...LA LA LA! Ha!Ha! If I told him to dance he'd sit there in the chair and he'd do his best to dance and just laugh and have a good time with us. It bothered Shirley that people would question why Rusty was so thin? He ate 24-7, but the disease wouldn't allow him to gain weight. Shirley used to be very self conscience about that because she didn't want anyone to ever thnk that she didn't feed him enough because that just wasn't the case by any means. Rusty would have eaten all day long if you would have let him, and he was always drinking something good. He just got taller and thinner due to the disease taking it's toll on his little body. If little Jason lives to be very old he'll wind up real thin and in a wheel chair too. He's doing pretty well right now knock on wood, but it's only a matter of time before the disease will get the better of him as well. Rusty was never able to crawl or play with toy's or run like little Jason because Rusty had the disease alot worse then what Jason does because when Rusty was born they didn't know he had the disease therefore they couldn't doctor him for it getting him on the right medicine's etc. like they were able to do for little Jason. They knew before Jason was ever born that he'd have the disease so the second he was born they were on top of the situation right away. There's nothing worse then seeing a child suffer! Shirley & I go to Rusty's grave together and we decorate his grave and talk to him. It's good therapy and we believe that he hears and see's us there. I wish that our brother's could have known Rusty. He certainly made an impact on my life.