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!!

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.

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.