Somedays I wonder why I send my kids to school, some kids are SO mean. I took Braxton into the counselor today and while we were driving up there he made a comment to me so I asked him to go into further detail, he told me that some people at school are teasing him about his dad being sick and telling him that he will never get better and their dad is better because they aren't sick. I have never wanted to hit a kid so hard in my life. He mentioned it to his counselor as well with huge tears welling up in his eyes. I have never cried at one of their appointments until today. Ashlyn has told me before that she is having the same problem but she lies a lot so I never know when to believe her but now I know she is telling the truth and I am not going to put up with it.
I couldn't believe how grown up Braxton sounded as he was talking to the counselor about it, he asked Braxton what he did when he was upset about that and Braxton said I walked away to be alone for a minute and took deep breaths and waited to go back to play with friends until I didn't want to punch them anymore. I couldn't believe it what a great boy he is turning out to be. I just feel so helpless and sad that the kids have to put up with stuff like this, it's not like we asked for this crap to deal with. I am sure one day we will look back and know that we have learned something from this but right now I just want to keep the kids home and never send them to school again and just stay locked up in my house and never leave so they don't ever have to hear anyone making fun of them or their dad.
RaKelle is also struggling a lot she is fighting me on taking seminary, she is very adamant about NOT taking it. I know she is having a hard time with the church and with Young Womens right now but I don't know how to help her. I told her she had to at least take it the first semester and then if she still felt that way she could stop and then then take it again in High School. I guess she is having problems with the fact that it isn't fair that her dad is struggling so bad and why she can't do anything about it and that she is going to lose her dad and she is frustrated and upset with God for taking her dad away from her. I need to do a better job at scripture study and family home evening to help point out that it isn't anyones fault and that we can not make it through this trial without faith and support from the church and prayer to help us through day to day.
Wednesday, February 13, 2013
Sunday, February 10, 2013
Sweethearts Ball
Jaren and I have been going to the Stake Valentines Dance for 16 years this year and every year he does less and less. The dance was our very FIRST date. We went with a couple that live by us and it was fun. Jaren didn't do a whole lot but I did some line dancing, he didn't even want to slow dance with me, one time I finally got him to dance with me and he complained that his back was hurting and wanted to sit down so we sat down pretty much the whole night. I think it was a kick of reality that we can't do things like we used to. I don't know how many more we can go to it is hard to sit and watch all these couples dance and have fun and we just sit on the chairs and watch. It is hard to think that we used to actually know how to do a lot of dancing and we were pretty good at it. The couple that we doubled with was very nice and they can dance it was nice I just wish that Jaren would have been able to do more.
I know it's a "Sweethearts" Ball but I wished they could have played more line dancing songs so that I wasn't sitting all night long. Oh well, maybe we shouldn't go anymore it gets harder and harder every year.
I know it's a "Sweethearts" Ball but I wished they could have played more line dancing songs so that I wasn't sitting all night long. Oh well, maybe we shouldn't go anymore it gets harder and harder every year.
Doctors appointment
We went back up to the U of U for Jaren's neurology appointment to go over his test results from his neuropsychological exam and his MRI that he had back in September, those appointments are always a little overwhelming but we made it and it wasn't to bad until after we got home and it all set in.
They called us back and did the usual vitals and then they always do a mini mental exam before the Dr. comes in and at the U it is always a student first and then they both come in together and talk, this time the Dr. and the student asked me to come into their office alone with out Jaren so that they could talk to me. I went with them and they had his MRI's pulled up on the computer and went over them with me, they said that the report states that there has not been any change but they are going to question them because they see significant changes on the scan. They showed me the scan from the last time and then the scan from Sept of 2012 and I could see the changes and I am not a Dr. I was pointing things out to them and they were agreeing with me that I was not crazy and that the changes were very significant. The results from the Neuropsychological exam showed that he struggled with it but that he was very compliant and did the best he could. He has a hard time following instructions and he scored 1 out of 10 on some of the test and 2 out of 10 on others which is not good, they which makes sense and it coincides with the MRI. His brain is shrinking and you can definantly see that. I couldn't believe the change.
He talked to me about how tough things are going to get. I asked him to give me a timeline and he said there really isn't a time line but the brain is not a threaten to his life now, he said that people that have Dementia are more likely to get hit by a car because they don't know not to walk out in front of one, or forget the chew their food and choke to death.
We then discussed some options of where I could get some support from and I told him that I had been working with the Alzheimers Association and that they wanted to use the kids letters on a national level. He stated that he has an undergraduate class that is trying to come up with a curriculum for school age kids that would help them deal with terminal illness in their families and asked if I would be a guest speaker for his class and if they could call me with any questions and of course I said YES, I would love to help. This is why I am going through this trial so that I can help others and tell them what I know to save them a lot of trouble, I told him that a caregiver is a caregiver no matter what disease the patient has it is hard work and sometimes frustrating and overwhelming. It feels really good to know that with everything that I am going through that maybe in the future I can help those that need the help, that I had to fight for day and night.
They called us back and did the usual vitals and then they always do a mini mental exam before the Dr. comes in and at the U it is always a student first and then they both come in together and talk, this time the Dr. and the student asked me to come into their office alone with out Jaren so that they could talk to me. I went with them and they had his MRI's pulled up on the computer and went over them with me, they said that the report states that there has not been any change but they are going to question them because they see significant changes on the scan. They showed me the scan from the last time and then the scan from Sept of 2012 and I could see the changes and I am not a Dr. I was pointing things out to them and they were agreeing with me that I was not crazy and that the changes were very significant. The results from the Neuropsychological exam showed that he struggled with it but that he was very compliant and did the best he could. He has a hard time following instructions and he scored 1 out of 10 on some of the test and 2 out of 10 on others which is not good, they which makes sense and it coincides with the MRI. His brain is shrinking and you can definantly see that. I couldn't believe the change.
He talked to me about how tough things are going to get. I asked him to give me a timeline and he said there really isn't a time line but the brain is not a threaten to his life now, he said that people that have Dementia are more likely to get hit by a car because they don't know not to walk out in front of one, or forget the chew their food and choke to death.
We then discussed some options of where I could get some support from and I told him that I had been working with the Alzheimers Association and that they wanted to use the kids letters on a national level. He stated that he has an undergraduate class that is trying to come up with a curriculum for school age kids that would help them deal with terminal illness in their families and asked if I would be a guest speaker for his class and if they could call me with any questions and of course I said YES, I would love to help. This is why I am going through this trial so that I can help others and tell them what I know to save them a lot of trouble, I told him that a caregiver is a caregiver no matter what disease the patient has it is hard work and sometimes frustrating and overwhelming. It feels really good to know that with everything that I am going through that maybe in the future I can help those that need the help, that I had to fight for day and night.
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