You will need tissues for sure!!

Bishops meeting

I had the opportunity to go to a training for the Bishops in our stake to tell my story and how this horrible disease is affecting me and my kids and how we are coping.  I hope that I was able to touch some of their hearts and that I will be able to help them and others that live in my community.  That meeting was on Thursday night and it was so therapeutic to be able to talk about this disease.

Friday the AFTD Conference

I had the opportunity to attend a conference that was put on by the AFTD foundation which stands for Association for Frontotemporal Degeneration.  The conference was excellent so much information and I was able to meet so many new people.  I purchased a DVD that is titled " It is what it is" and it is a very touching movie that have caregivers talking about how they deal with this FTD.  Here is a link to the 17 min movie clip that you can go and watch, make sure you have a LOT of tissues. http://youtu.be/Ue3y60AsMCE.  Jaren's neurologist was one of the main speakers at the conference and I am so glad we changed doctors.  

Some of the students from the University of Utah Think Tank wrote some songs about the book they are working on, they were able to come and perform at the conference and it was amazing.  I hope that they are able to at least put the lyrics in the book it sums up what life is like.  the link to this video is here http://youtu.be/Y7YZWoGt3ek.  This class is amazing and they are so polite and I sat by most of them at the conference because I didn't know who anyone else was.  The song is very touching and you might need to keep the left over tissues handy from the video for this song!!


Touching family discussion

Sunday afternoon I couldn't wait to watch the video so I told the kids that we were going to watch it together, and so I put it in and we watched it, it was silent for the whole movie, I bawled my eyes out I know what these caregivers are and have gone through.  As soon as the video was over I asked the kids what they thought about the video, they were all crying as well I knew this was the perfect opportunity to talk to them about this trial we are enduring.  They saw me cry for the first time in a VERY, very, very long time.  I told them that it was hard to watch and that they are the best kids ever and that I could not get out of bed every morning if it weren't for them they keep me going and they help out so much.  I asked them also what the hardest part is about this disease and they said that it is hard because friends do NOT like to come over they are afraid of Jaren and so I asked them what we should do about talking to their friends so that they will feel more comfortable.  I also told them that since I will not be working this summer that we are going to make a lot of memories and we are going to do a lot of free or cheap things, we are going to start some memory books and we are going to try and find ways to help get the word out about this disease.  The girls were very excited and they want to do a Bake Sale and raise money for FTD research.  I am so thankful for the wonderful children I have and for the way that they can turn a bad situation into something inspiring.  I told them that if they wanted to think of some fun family activities to do this summer to write them down in the family journal and we would try our hardest to do them.  They were very aware of the memories that I am trying to make for them and the traditions I am trying to do with them so that when Jaren is gone we will still have some good traditions that will carry us through and keep us going, like the sleepovers in my room, and the dinners/lunches without Jaren.  I told them that I don't know when his time will be to go but that we need to live as though this summer will be the last summer we will have together and that we will have some great memories to hold onto.  I was so worried about not having any summer hours and then after the conference and the video I am so thankful for the time that I will have to spend with my family.  I didn't realize that you would need tissues for this one as well sorry I hope you have some left over from the other two!!

Major meltdown

RaKelle and I had a huge fight the other night and it turns out that it was a big relief, we were able to talk about things and tell each other how we are feeling and we both bawled our eyes out until midnight.  My eyes were so swollen and red the next day I could hardly do anything the next day.  She told me that she wishes she was that little 4 year old girl that didn't know what was going on, but then if she was 4 and he passed away she wouldn't be able to know what happened and she would just be wondering what happened to her dad.  She also asked me how I can keep going with out a breakdown and I told her that I don't always keep going sometimes I cry myself to sleep and get up the next day and do the things that I need to do, and I made sure that she knew that.  I told her that I am trying my best to be strong for her and her Ashlyn, and Braxton.  I also told her that she is ok for feeling cheated and that it was ok to be worried about him because he is struggling and it is very difficult to watch him decline she said that it is hard that it is such a slow process.   I think it did both of us a lot of good to have a talk and to cry and hug and share our feelings about what is going on in our lives.  I hope that she always knows that I will always be here for anything that she needs and that she can always confide in me and tell me things even if they are difficult to hear.  RaKelle I love you so much and I am so thankful to be your mom and watch what a great young women you are turning out to be.  You are a great help to me with your dad and we still have a long road ahead but we will stick together and make it through.