Valentines came so fast this year. Our church has a sweethearts ball every year for valentines day and Jaren and I went to on our very first date 15 years ago, and we have gone every year for 15 years. I asked him last Saturday if he wanted to go with me this year and he said NO it kind of hit me a little hard he always wants to go, I realize he can't dance a whole lot but I thought he would at least want to go for old time sake. I decided to take him anyway so our friends came and went with us so her and I did line dancing and visiting and the guys just sat in their chair and watched us. After we got home we took the kids all out for ice cream it was really good. I am so thankful for our friends that like to hang out with us and that they have similar issues that we have so they actually get it. On valentines day our friends parents were nice enough to take us all out to the movie and to dinner it was so much fun.
I have been so busy these last couple of weeks I can hardly remember from one day to the next so it was nice to sit down and enjoy a movie and dinner and good company. I have had the flu this week and now I am fighting a cold why do they all have to hit at the same time? I even had to call in sick to work this week and I never do that. I have been really good this winter about not getting sick but I guess I have a lot of stress lately and it kind of hits hard and fast when I am stressed and can't fight it that good. Some things that have happened lately have been good and bad, the insurance approved a wheelchair for Jaren so that is a relief, I am still working on getting a new insulin pump there have been some bumps in the way for that so hopefully it will work out. He also got fitted for a new pair of shoes that are made specially for him with special made inserts to help with the neuropothy in his feet and legs.
The last time I took Jaren with me to visit with my counselor so that he could meet Jaren and get an idea of what I deal with on a daily basis so when I met with him again he told me that he could see why he puts up a good front that nothing is wrong and that when he started asking questions and things he could tell that something in him is not right, it was so nice to be validated with knowing that I am not crazy and he does have problems, I know he isn't the same person I fell in love with 15 yrs ago but nobody can really tell that he is not the same because they don't know him the way I do. It is a very hard job to be a caregiver 24/7 and being pulled in so many different directions with kids, and homework, and work, and dr appts, and housework, and trying to do things for myself so that I don't run out of energy to deal with day to day problems. I am so frustrated with so many different feelings that I am experiencing with the progression of this disease I feel so anxious a lot of the time and sometimes I don't know why or what to do about it, I have a hard time attending church because I don't feel comfortable at church all the time. It is getting harder and harder to leave him at all, he forgot how to write his name the other day and he has also been getting up and turning the nintendo off right in the middle of him playing it, that is so not like him he would play nintendo all day if I would let him and to be honest sometimes it is not worth the fight so I let him play because I can't stand the tantrums. The whole sweethearts ball thing made me realize that we are at a point where he is not able to do a lot of things that we use to enjoy doing, I hope the wheelchair will give him some energy to at least go places together as a family and that he won't get so worn out.
I have a feeling we don't have a lot of time together and I want to make the most of it, but I can't do that if I have so many energy leaks that I can't keep up with everything I don't want to put him in a home but I also have a family to take care of and children to keep healthy and sane. I hope that he can stay with us until his time on earth is done my goal is to make whatever sacrifice I have to, to keep him alive well to the best of my ability and that he will enjoy his last days here at home with us and laughing as a family and enjoying each other without the stress of daily living.
