I am back to work and I can't tell you how excited I was to go back to work to get away from the house for a few hours a day. I am only back for a couple weeks and then I am off again until after the new school year starts. I am very thankful though because at the end of the school year I didn't know if I would have a job in the fall and last week I found out that I will, what a HUGE relief for me what an answer to my prayers that day. Jaren has been really down this week so I am trying to be happy and upbeat for him but I am so NOT in the mood to be happy, I am done with being let down and done with people talking behind my back. I know people talk and I know sometimes some people don't like what I do or some of the decisions I make for my family and sometimes they are frustrated with me but maybe they should trade me places and see how they like it I guarantee they will change their mind after living in my shoes for 2 hours or less. Not to mention I DON'T have time for drama. I work my butt off to take care of Jaren and the kids and a lot of times I get left on the back burner, and sometimes the kids don't get what they want but we deal with it and sometimes I don't have a choice. A haircut every once in awhile is soooooooo worth it even if I don't really have the money sometimes you just feel sooo much better when you look nice and your hair is done.
I knew that since I wasn't working in the summer that I wouldn't be getting paid so I took my last paycheck and paid off my CAR, I can't tell you what a relief that is to me knowing that my car won't get towed in the middle of the night because I was behind on payments or that I don't have another car payment but of course when you pay off a car it starts to have problems so of course the minute I sent the check my spark plugs went out on me, I don't have air conditioning, and my window only rolls up and down sometimes, so when someone asked me the other day if I felt like I was getting a raise with no car payment, NO I DO NOT, I am not getting paid for 3 months and I have to pay to get it fixed. I really am just done with everything in life right now so I am taking a sleeping pill (which means the anxiety is very bad today because I never take pills to help me sleep because every time I do we end up in the hospital because I don't care about things in the middle of the night) and going to bed so that I can hopefully feel refreshed tomorrow and be able to be happy again for my kids, they are really the ones that suffer when I am not in the mood to put up with things. I try my hardest to put on a happy face for them but sometimes I just can't do it.
Wednesday, July 27, 2011
Sunday, July 17, 2011
how much more.......
I am so done with fighting, how much more fighting do I have to take before I totally lose my patience? I am getting to the point where I can't take much more before I freak out. I made them ALL go to bed early tonight because today has been nonstop fighting. Jaren doesn't think he has to help with anything at all and he has been downstairs in his bedroom playing nintendo of course ALL DAY so I have had to deal with the fighting and whining alone, I know he can't do much to help anyway, but it would be nice for him to at least be upstairs with me and back me up when I can't take anymore. It was nice to not have Jaren involved in the fighting because usually he IS involved he is usually the one that starts it. I am not sure how much more I can take before I go to work again next week for a couple weeks, I don't know if I am going to be able to leave the kids home together, but I know for a fact that I can't leave the kids and Jaren home together. I am not sure what is going on with the kids but they can't seem to get along at all. I haven't taken him back to the daycare lately because I can't afford it but I have taken the kids to a sports activity at the local rec center to get some of their energy out and it seemed to help for 1 day. I wish I could do that more for the kids they get to swim and meet new friends but I just can't do it that often because it gets pricey and I have not had any work since June 1st. I go back on July 26th for summer school for 2 weeks and then I am off again for another couple weeks, we have made it work and we have been able to get the things that we need and hope that we can continue to be blessed with the things that we need.
His swallowing is getting worse I think it takes him forever to eat anything lately, he can't eat spicy food anymore his mouth and stomach can't take it. The other day I caught him with his insulin pump off and his shirt off I asked him why his pump was off and why his shirt was off and he just shrugged his shoulders and said he didn't know, I said why is you pump off? he said I felt good today I thought I wasn't a diabetic anymore, I asked him then why his shirt was off and he said I really can't explain that one. I told him that diabetes doesn't work that way it doesn't just go away for one day and he needs to keep that on, it could kill him if he left it off and I hadn't have seen it off.
His swallowing is getting worse I think it takes him forever to eat anything lately, he can't eat spicy food anymore his mouth and stomach can't take it. The other day I caught him with his insulin pump off and his shirt off I asked him why his pump was off and why his shirt was off and he just shrugged his shoulders and said he didn't know, I said why is you pump off? he said I felt good today I thought I wasn't a diabetic anymore, I asked him then why his shirt was off and he said I really can't explain that one. I told him that diabetes doesn't work that way it doesn't just go away for one day and he needs to keep that on, it could kill him if he left it off and I hadn't have seen it off.
Wednesday, June 29, 2011
at the end of my rope
I am at the end of my rope the fighting this summer has somehow got to stop. Jaren is not use to having to share the nintendo and the tv and the kids are tired of him playing 24/7 but I don't know what else to do with him, he doesn't want to do anything else. The kids want to play too and they get bossy and tell him he can't play then he whines and throws a tantrum and is ornery for the rest of the day. I have tried my hardest to keep everyone busy but I am getting worn out. I can't keep up with everything. Somedays are better than others but some days I just want to run away for a week or send one of them away for awhile.
Thank goodness for the Elder's Quorum president in our ward called today and asked to take Jaren to a movie. They must have had a feeling he was driving me absolutely in sane today. I was going to take him to the daycare tomorrow just so that I can get a break but now that he is gone for a couple of hours I can enjoy some FREE time and re group so that I can handle him tomorrow.
On a good note, Last night was a really fun night we went with some friends to the ReAL game and it was a lot of fun. Jaren got to sit by his friend and they talked the whole time not sure about what but I don't know that I want to know. Noel is Jaren's friend and he has an unknown leukodystrophy so they act almost identical and they have a lot of fun together of course only if me and my friend are there. It would be scary to leave the two of them alone. I was able to sit and visit with a friend since she knows what I am going through, (Noel is her husband) and watch the game and the weather was perfect. The kids were great and they enjoyed themselves to. I am so thankful for friends that surround us with their support and love.
Another milestone in our family that happened this past week is that RaKelle my oldest turned 12 on Saturday I can't believe it she is getting so much older and I can't believe I will have a child in middle school already, can't they just stay little and never get any older than 5? She is a great daughter and we love her a lot. She carries a lot on her shoulders helping me out and she does an amazing job. She has earned money this summer to pay for her camping trips with the young women, she has taken care of many animals for neighbors that go on vacation and she LOVES it. She has saved every penny. Our family would not be the same without our sweet RaKelle. Teen years next year hope we are ready for it!!
Thank goodness for the Elder's Quorum president in our ward called today and asked to take Jaren to a movie. They must have had a feeling he was driving me absolutely in sane today. I was going to take him to the daycare tomorrow just so that I can get a break but now that he is gone for a couple of hours I can enjoy some FREE time and re group so that I can handle him tomorrow.
On a good note, Last night was a really fun night we went with some friends to the ReAL game and it was a lot of fun. Jaren got to sit by his friend and they talked the whole time not sure about what but I don't know that I want to know. Noel is Jaren's friend and he has an unknown leukodystrophy so they act almost identical and they have a lot of fun together of course only if me and my friend are there. It would be scary to leave the two of them alone. I was able to sit and visit with a friend since she knows what I am going through, (Noel is her husband) and watch the game and the weather was perfect. The kids were great and they enjoyed themselves to. I am so thankful for friends that surround us with their support and love.
Another milestone in our family that happened this past week is that RaKelle my oldest turned 12 on Saturday I can't believe it she is getting so much older and I can't believe I will have a child in middle school already, can't they just stay little and never get any older than 5? She is a great daughter and we love her a lot. She carries a lot on her shoulders helping me out and she does an amazing job. She has earned money this summer to pay for her camping trips with the young women, she has taken care of many animals for neighbors that go on vacation and she LOVES it. She has saved every penny. Our family would not be the same without our sweet RaKelle. Teen years next year hope we are ready for it!!
Saturday, June 11, 2011
I miss the man I married!
I have been thinking a lot today about the things that I am missing out on with a disabled spouse. I love him but it is a different love. It is very hard to know that when you are having a conversation with your spouse and you know he will not remember a word you talked about after the conversation is complete. I miss telling him everything, we used to laugh and talk about everything, now I say things to him and it just upsets him I have to really be careful with what I tell him. I know I sound like a baby but somedays are harder than others. I can talk to him and tell him how good the kids were at something that day and he just looks at me and says oh wow! and then I can say the exact same thing 20 minutes later and I get the same exact response, sometimes he will tell the kids good job but sometimes he has a hard time knowing what to say to them.
Have you ever had a conversation with someone over and over and over again? They ask the same questions over and over again, it just get so overwhelming and hard to cope with some days. He has his good days and still we talk about the same things. I miss being able to stay awake at night and laugh at things that we did that day that were so stupid that it makes us laugh, and laugh, and laugh, until we finally laugh ourselves to sleep. I even miss fighting the way we use to fight, we don't fight about money anymore because he has no clue how much money we have how many bills we have and how much I make at work, now we fight about not doing things that will hurt him or doing things that will hurt the kids and why he is cooking something that shouldn't be cooked. I know this sounds dumb but I want to be a newlywed again and fight over stupid things like money, and the dishes, and who is going to put gas in the car. Sometimes I feel lonely and he lives here with me. I can't take anything for granted anymore, every memory and everything we do together even though it isn't the same we still have to remember them and treasure those memories FOREVER. Just remember when you are getting upset with your spouse about something, or you are fighting and you can't stand them, remember that someday you will wish you could be fighting about that again because you never know what tomorrow will bring.
Have you ever had a conversation with someone over and over and over again? They ask the same questions over and over again, it just get so overwhelming and hard to cope with some days. He has his good days and still we talk about the same things. I miss being able to stay awake at night and laugh at things that we did that day that were so stupid that it makes us laugh, and laugh, and laugh, until we finally laugh ourselves to sleep. I even miss fighting the way we use to fight, we don't fight about money anymore because he has no clue how much money we have how many bills we have and how much I make at work, now we fight about not doing things that will hurt him or doing things that will hurt the kids and why he is cooking something that shouldn't be cooked. I know this sounds dumb but I want to be a newlywed again and fight over stupid things like money, and the dishes, and who is going to put gas in the car. Sometimes I feel lonely and he lives here with me. I can't take anything for granted anymore, every memory and everything we do together even though it isn't the same we still have to remember them and treasure those memories FOREVER. Just remember when you are getting upset with your spouse about something, or you are fighting and you can't stand them, remember that someday you will wish you could be fighting about that again because you never know what tomorrow will bring.
Thursday, June 2, 2011
Here comes summer!!
I can't believe another school year has come and gone already. I now have a 2nd grader, and 5th grader, and the oldest one starts middle school, that scares me a little bit. I am so proud of them they did awesome this year in school. This week has been so busy with the end of the school year stuff, RaKelle had a ton of activities that were going on at school because they are no longer going to be in Elementary anymore and I realized how hard it is to try to be the mom AND the dad when they have sports day against parents all the moms get to sit out because the dads are all there to play but I have to join in so that the kids don't feel left out, I don't mind usually but it is hard to be the only mom out on the field, when something breaks like bikes or other things that the kids use I am the one that has to fix it. Braxton wanted to learn how to ride his bike and I was the one that had to be out there teaching him. Our church is having a Fathers and Sons outing tomorrow night and I don't feel like I can take Braxton with a bunch of men, thank goodness my parents live close by and my dad is going to take him to the activity so Braxton will not be left out.
Now what to do all summer? We are just going to play and have fun, I am still going to take Jaren to the Beehive House a couple times in the summer so that I can have a break from him and maybe get some things done without having someone right behind me all the time.
Jaren came and told me yesterday that he has been hitting himself now in the face, I didn't know what to say so I started to laugh I thought he was joking, and I asked him why he was doing that and he told me that he just gets mad that his brain doesn't work right and so he hits himself, After I realized he wasn't joking about the hitting I was really nervous about what would happen next. What do I do with that? How do I tell him to not hit himself? he won't remember the conversation. I will not be able to leave him at all without anyone here I am afraid of what I will come home too. Thank goodness I am done with work so that I can be home with him. I guess next school year when I go back to work he will have to have care everyday so that he doesn't hurt himself.
I would like to know more about the brain so that I can understand the way he thinks and the things he does that are so out of the ordinary. Sometimes I wish that this trial in our lives could just be over but that would mean Jaren would not be with us anymore and then that would bring many more trials and heartache so we will just keep truckin along and live day to day.
Now what to do all summer? We are just going to play and have fun, I am still going to take Jaren to the Beehive House a couple times in the summer so that I can have a break from him and maybe get some things done without having someone right behind me all the time.
Jaren came and told me yesterday that he has been hitting himself now in the face, I didn't know what to say so I started to laugh I thought he was joking, and I asked him why he was doing that and he told me that he just gets mad that his brain doesn't work right and so he hits himself, After I realized he wasn't joking about the hitting I was really nervous about what would happen next. What do I do with that? How do I tell him to not hit himself? he won't remember the conversation. I will not be able to leave him at all without anyone here I am afraid of what I will come home too. Thank goodness I am done with work so that I can be home with him. I guess next school year when I go back to work he will have to have care everyday so that he doesn't hurt himself.
I would like to know more about the brain so that I can understand the way he thinks and the things he does that are so out of the ordinary. Sometimes I wish that this trial in our lives could just be over but that would mean Jaren would not be with us anymore and then that would bring many more trials and heartache so we will just keep truckin along and live day to day.
Monday, May 16, 2011
weekend full of drama!!
We usually have some sort of drama on the weekends but this weekend was horrible, Ashlyn has been dealing with the stress of some things that I am going through and she was not a very nice girl this last weekend. First it started off on Friday morning when I was trying to get them ready for school she freaked out on me because she was running late and I told her I was going to leave her and take the others to school, she got really, really mad and she told me that she was going to get a gun and shoot me I told her she had to go to her room until she could calm down. Then Saturday we had soccer all morning and she played good but the afternoon she was terrible. She started a tantrum about 5:30 and it kept escallating and she kept getting worse until I couldn't handle it any longer and I freaked out she told me that I was the meanest mom ever and she was going to call the cops and put me in Jail, and sarcastically I told her that would be great I could sleep the whole night with out kids or husband waking me up, I could get fed 3 meals a day and not have to clean anything up, WRONG thing to say RaKelle went to her room hysterical because she was afraid that I would like jail so much that I would want to stay forever and then everyone would die because she doesn't know how to take care of dad, I assured her that I was being sarcastic and I really don't want to go to jail I just couldn't handle Ashlyn anymore that night, then RaKelle totally spilled the beans on why she was so terribly ornery that afternoon, come to find out her she was with some friends and they were watching youtube and she asked them not to watch a video because it would scare her and they watched it anyway she was so upset, Jaren was yelling about everything I did that day I couldn't do ANYTHING right. Bedtime could not come soon enough that day. Then Sunday came I got up and got ready for church and the kids all up and ready and we went to church, Braxton would not sit still in Primary and Ashlyn was being so naughty I almost just took her home, instead I sat her in a corner in the hallway and she was not allowed to participate in the activities that everyone else was doing. She got worse and worse so I walked her down to the nursery and opened the door and told her if she is going to act like a 2 year old she was going to be with the 2 year olds, she finally calmed down long enough to go to class and sit nicely for the very end, I was at the end of my rope by the time we got home and I sent them all to their rooms for an hour so I could calm down.
Thank goodness the weekend finally came to an end and now I need a weekend to recover from the weekend. I took Ashlyn in to her counselor today and he did some amazing things with her to prove to her why I get upset and how much I am dealing with in terms that a 10 year old can comprehend. He got out about 10 really heavy books from his bookshelf and set them on my lap and told Ashlyn that he wanted me to carry these around all the time and I could never have a break, he then asked her if I would get worn out and she said "yes" and he said " I am pretty sure that would wear her out, so now lets pretend that these books are the burdens that your mom is carrying around all the time" and she smiled and said "ok" and he asked her "what are some things that you can do to help take off some of the weight?" and she said "I could stop fighting with my brother and sister" and " I could clean my room" and "I could be nice to my dad and my mom" everytime she said something that she had control over to help ease my load he would take a book off of my lap and gave it to her, I think she realized how much I carry around all the time, she has not had ONE tantrum this afternoon and evening and she came right home and did her chores. We have not had one fight either. He also gave us some good tips on how to work together and get things cleaned up together after dinner so it isn't all on me. He explained to her why I was so willing to go to jail that night and that sometimes moms' get to a point when they just can't take anymore. I love my kids and I can't imagine my life without them but why must they push me to the edge? I know that our lives are crazy and they are not "normal" but I try my hardest to make it as normal as I possibly can. Hopefully this weekend can be less dramatic! there is always hope I guess.
Thank goodness the weekend finally came to an end and now I need a weekend to recover from the weekend. I took Ashlyn in to her counselor today and he did some amazing things with her to prove to her why I get upset and how much I am dealing with in terms that a 10 year old can comprehend. He got out about 10 really heavy books from his bookshelf and set them on my lap and told Ashlyn that he wanted me to carry these around all the time and I could never have a break, he then asked her if I would get worn out and she said "yes" and he said " I am pretty sure that would wear her out, so now lets pretend that these books are the burdens that your mom is carrying around all the time" and she smiled and said "ok" and he asked her "what are some things that you can do to help take off some of the weight?" and she said "I could stop fighting with my brother and sister" and " I could clean my room" and "I could be nice to my dad and my mom" everytime she said something that she had control over to help ease my load he would take a book off of my lap and gave it to her, I think she realized how much I carry around all the time, she has not had ONE tantrum this afternoon and evening and she came right home and did her chores. We have not had one fight either. He also gave us some good tips on how to work together and get things cleaned up together after dinner so it isn't all on me. He explained to her why I was so willing to go to jail that night and that sometimes moms' get to a point when they just can't take anymore. I love my kids and I can't imagine my life without them but why must they push me to the edge? I know that our lives are crazy and they are not "normal" but I try my hardest to make it as normal as I possibly can. Hopefully this weekend can be less dramatic! there is always hope I guess.
Saturday, May 7, 2011
Good experience for our kids!!
We did something today as a family that the kids want to continue, we had to run to the grocery store and we were by the Beehive House, which is where Jaren goes while I work, the people were so excited to see him and to meet his kids. RaKelle played the piano for them and they really liked that they kept telling her to keep playing, after we left we talked about some things and decided that they would like to go there once a week during the summer and do crafts or play games with them and sing with them. I think that everyone will enjoy it and then the kids will know that dad is taken care of when he is there and they don't have to worry about anything while he is there. Thank you to the Beehive Home for allowing him to go there and enjoy conversation with people instead of sitting in front of the TV all day. It was fun to see the people interact with him and tell the kids how much they enjoy him being there. It made him feel really good. One of the men their even went into the kitchen and got the kids some fruit snacks.
We met a new Neurologist and she ordered blood work and MRI, the blood work came back really good and one of the medications they have him on for mood is low so if they need to they can up the dose a little and still be ok with numbers. MRI results came back and she said that the brain is stable it hasn't changed since his last MRI in 2007, which is a very good thing (I think), but the MRI does not show mental decline, so they do what they call a mini mental exam that consists of asking questions and having him do things and that score was 18/30 I thought it was an ok score because his last score was 11, well come to find out it is not a good score anything below 28/30 is not a good score, he improved from the last mini mental exam, he must have had a good day that day, he has a hard time with more than one command at a time.
It seems like things never end though, I feel like I can't keep up with everything, bills, Jaren, keeping the house cleaned, homework, Jaren, laundry, dishes, soccer practice, games, Jaren, dr appts, SLEEP, work, oh and did I mention Jaren? he keeps me on my toes I really do not understand some of the things that he does he doesn't even know why he does some of the things he does, like make eggs in a glass bowl on my stove, good thing I happen to be home at that time, that would have been a huge mess to clean up.
We met a new Neurologist and she ordered blood work and MRI, the blood work came back really good and one of the medications they have him on for mood is low so if they need to they can up the dose a little and still be ok with numbers. MRI results came back and she said that the brain is stable it hasn't changed since his last MRI in 2007, which is a very good thing (I think), but the MRI does not show mental decline, so they do what they call a mini mental exam that consists of asking questions and having him do things and that score was 18/30 I thought it was an ok score because his last score was 11, well come to find out it is not a good score anything below 28/30 is not a good score, he improved from the last mini mental exam, he must have had a good day that day, he has a hard time with more than one command at a time.
It seems like things never end though, I feel like I can't keep up with everything, bills, Jaren, keeping the house cleaned, homework, Jaren, laundry, dishes, soccer practice, games, Jaren, dr appts, SLEEP, work, oh and did I mention Jaren? he keeps me on my toes I really do not understand some of the things that he does he doesn't even know why he does some of the things he does, like make eggs in a glass bowl on my stove, good thing I happen to be home at that time, that would have been a huge mess to clean up.
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