May 28, 2010

I have a lot on my mind right now so I am just going to write it all down.

I met with our bishop the other day and talked to him about how we are going to survive when our tax returns are gone and what I would do with Jaren during the day and that I can't put him in a home for 90 days. He firmly believes that I need to be home with the family right now and he is so willing to help me find ways to earn a living and still be able to take care of Jaren and his needs and also with the children. Bishop Sundberg is a great person and he has helped us in many many ways. We are blessed to have him as our bishop right now, there is a reason that he is our bishop for the time being.

Our family also had the opportunity to go and see How to Train your Dragon, we all loved this movie,there was a very important person that treated us to the movie and he made us buy popcorn, the kids were in 7th heaven. We go to the movies sometimes but we usually wait until they are in the dollar movies and then we usually don't buy popcorn but it is good to get out somewhere together and the dollar movies are not that expensive to take the whole family. Thank you so much to that special person that allowed us to go see that movie together and get popcorn and we were even able to buy drinks!! you truly are a great person.

May 28, 2010

Today was a day that will be forever missed when Jaren decides to move on to the next life. What a great day it was Ashlyn's father activity day at school and she was so thrilled when Jaren was able to make it to her school and spend the afternoon with her. She kept telling me that she would remind dad that he has to throw the ball soft when they played Bombers which is like dodge ball, and he had to kick it softly in kickball. She loved every minute of it they got to eat lunch together and just spend some time together and can I tell you what she has not picked on her dad once today and he hasn't picked on her so nice for me. Tonight we were sitting at the dinner table and Jaren says today was so much fun that I can't wait to go next year, the problem with that is that we don't have another 3rd grader for 2 years so he won't be able to go next year. I hope he can make it to Braxton's 3rd grade father activity day what a blessing that will be.

We also got to attend a fun run at the children's school, and to see their faces when they crossed the finish line was amazing. They were excited that we were able to come and see them even if they didn't win 1st place they ran the whole way and did a great job. Maybe I am a baby but I was almost in tears when they came around the corner smiling ear to ear because we were there, and because we won't always have times like this forever.

Emotional breakdown

Our oldest daughter RaKelle had an emotional breakdown the other night and I was so glad that she opened up to me and talked to me about it. She wrote a composition for a piano recital that she had a few weeks ago and called it "Sweet Heaven" her teacher saved it on a thumb drive and played it on an electric piano it was beautiful, she has been taking piano since October and I am amazed at how fast she has learned. Anyway I found her in her bedroom crying and I asked her what was wrong and she threw herself in my arms and started crying saying she didn't know why, I asked her if she wanted to go somewhere private and talk and she said "yes" I was a little shocked she does not open up to me very often. She said she was thinking about the song she wrote and she told me that the song was written for Jaren and she just started thinking how hard it will be when he passes on, she asked why does it hurt so bad and it feels like I will have a hole in my heart forever. I told her you will have a hole in your heart and it will never get filled and nobody will ever take her father's place and the hurt will get better with time but we don't know how long it will take. I went with a friend the other night and she stated that we will be surprised at how much we have already grieved but it will not make it easier we just might be ok faster than someone that passes suddenly. Thanks to wonderful friends that help me through rough times.

Braxton's Letter

Dear Dad,

I love my dad because he is the best dad ever, he is so nice to me and cause he is the best dad ever. I love him so much. I am so nice to him too. I do the dishes with him, I'll clean my room, I'll watch a movie with him and play star wars with him because he is the best dad ever.

Love,
Braxton

Braxton is just learning how to spell and write so I wrote his letter but I wrote everything that he said, I didn't change any of it. I love this letter writing.

Ashlyn's letter

Ashlyn's letter needs a little bit of background before I type hers. Ashlyn is 9 she has been having these horrible nightmares one was about her riding her bike and her dad was standing on the sidewalk and she ran over him on her bike and it killed him, and he letter states some things about that and I didn't want people to get the wrong intentions. She also picks on Jaren and they fight constantly.

To Dad.
I love you dad I hope you will never die because I love you a lot, I never want to kell you please don't heart(hurt) me if you don't I won't heart (hurt) you because I love you a lot I never want to kill you if you die all (I'll) be sad please write back on the next page
Love Ashlyn

They are loving this letter writing memory book, they keep saying we can have these letters forever huh mom? I am so glad they have an opporunity to share their feelings on paper and be able to get a letter back from their dad while he is still capable of writing his feelings down.

Letters to Dad

We have been finding ways to keep memories of Jaren we have decided that each of the kids will keep a notebook that they will write letters to Jaren in and then he will read the letters and write back to them in the same notebook and they will have letters from him that they will cherish forever, they have agreed to share a letter on this blog for all of you to read. RaKelle wrote a letter to him first and so I will share one of her letters and then when Ashlyn and Braxton finish theirs I will post them.

Dear Dad,
I know this is wierd to read but it has to come out and I can't say it, it...it's hard to say adn write but... it's gonna happen, and I am gonna miss you the second it happens. I never wanted you to leave me so soon I expected you to die at 100 or over but never under 100 I hope you don't mind me saying this but.... can you tell me on the letter back why do people have to die in vien, why do people feel hurt when someone dies?

Love,
RaKelle

that is word for word. I hope that this will be something that will help all of us cope with this disease and what is to follow when he gets worse and I want the children to know that anything they want to say to Jaren or to me will always be worth it, and that we will listen to what they have to say and help them know that they are loved and that we will make it through this together no matter what happens.

May 18, 2010

I am still trying to figure out a way to get some assistance. It looks like the only way that we will be able to get assistance is by moving Jaren into a rest home for 90 days and while he would be in there I would need to get a business license and my CNA in order to get any assistance. So the question would be do we do that? To me it doesn't seem logical for a couple of reasons 1-It would be hard on the kids to move him out for 90 days and then back in after 90 days, 2-what would I do for income during those 90 days his disability payments would probably have to go for paying the home, medicaid is not going to cover it they won't even cover a day care program for him to go to so that I can work because he isn't disabled enough for that program. 3-We would have to have his doctor state that it is a necessity to move him into a home, she won't even put him on Alzheimer's meds she is not going to put him in a home. 3-the kids are already having a hard time knowing that their father will not be with them for long and then they want me to move him out and then back in, yeah we would still be able to see him daily but that is so hard more time for him away means more memory problems and he may not remember who they are. So as of now this option is not something I am going to put time and effort into yet. If I am supposed to be home for something then it will all work out, I don't know when but something will happen, I don't know when but something will be definantly worth all this trouble that we have had.

May 11, 2010

This week I thought was going to be much better it started off with Mother's day, that was a nice day. My dad took Jaren shopping for a present because he can't drive. I had wonderful programs I was able to go to at the school for my kids it was a great start to the week.

I finally got up enough courage to call some more places for some resources and guess what happened I fell right back on my face again, seriously how disabled do you have to be to get resources in Utah. Well I am was so upset I couldn't even get help from the Alzeheimers Association because he isn't old enough to have symptoms of Alzeheimers but MLD is much like Alzeheimers so again I am at a stand still. I didn't give up hope yet though I was so discouraged with this state that I emailed the governor I am fed up with this state not helping people that are working their butts off to provide for their families I am going to email and email and email him until I can get somewhere I am fed up.

Jaren's memory is getting worse he didn't remember how to tie a tie the other day. How can I go and find a job when he can't even qualify for a day program for the disabled, what do I do? He follows me everywhere I go, if I am at the computer he looks over my shoulder the whole time until I find him something to do. I don't want to put him in a nursing home. I called Social Security last week to find out if they could help with something and of course I could get mother's benefits but it would come out of the kids' benefits and why would I want to do that? I wouldn't be able to work either. I have contacted so many people in the last 3 months and have gotten no where. I am trying my hardest to keep the family going as normal as possible but inside I am sooooooo FRUSTRATED that I cry all the time. I can't handle the pressure of caretaking and trying to find a job when I can't even leave the house. I have contacted division for people with disabilities and nothing they can do either.

That is the week we have had so far and it is only Tuesday, we still have 5 more days I will just keep going and hope something opens up for me.