The big day is over!

My sister Jessica got married this past week, it was a long day for us. Jaren did really well he was extremely exhausted but endured through it so that I could be there the whole time for my family, the kids did very well also. They were married in the Draper Temple and again I was there alone but it didn't seem so bad this time, maybe because there were others that were by themselves. We are very excited to have a new member of the family "welcome to the family Brian!"
I am really enjoying my job and the hospice nurse still comes to the house 2 times a week and I get another massage this week yeah!! the social worker also comes at least once every 2 weeks. I have stopped asking members of the ward to come in and check on him the other two days because they never show up when they sign up, it isn't worth it to send a sign up around and have nobody even come, even when they sign up to be here, someone told me maybe I should call them the night before and remind them but I don't have the time to be calling people to stop by I guess I will try a different route on those days.
Jaren actually came to church today also, the kids had their primary program so he came to watch the kids sing and say their part they did an excellent job we were very proud of them. Thanks to both sides of the family for coming to support the kids.

Reminiscing

I thought I would sit down and write a little bit because I haven't written for a while. I forgot how hard it was to work and still be a caregiver, it is very difficult, but I enjoy my job I get to go out of the house for a couple hours a day.

I have been thinking a lot about weddings because my sister is getting married in two weeks, I have been thinking back to when I was married and thought that we would be living a perfect life together, I would not change getting married but I can't help but wonder how life would be without MLD and what other challenges we would be faced with. I enjoy getting involved in preparing for Jessica's wedding and enjoying the showers that I am able to attend. I enjoy getting my kids involved in helping out with preparations they love it. I am also having a hard time with dealing with the fact that I am not married to the same man that I fell in love with, I am now a caregiver/spouse and that is very difficult to deal with lately.

Jaren has been in a tremendous amount of pain the last couple days he hasn't slept very well which means that I don't sleep, his legs have been cramping so bad that he has had a hard time walking even with the assistance of the cane. His memory continues to go downhill, I can have the same conversation with him 20 times a day and he doesn't remember any of the conversations. He is enjoying his time that he gets to play nintendo while I am at work and the kids are at school, he has a very good friend that comes over to play nintendo with him on Monday afternoons and he really enjoys it (thanks Jason). Hospice is still helping me out with his care and other things that come up with MLD. Our nurse is amazing and she is so personable and she acts like we are her only patients. Some days I totally unload on her and she acts like she knows what I am going through even if she has no idea. We are so blessed to have such amazing people in our lives.

I will try harder to keep up with the blog I sometimes just feel very overwhelmed, and very exhausted after a full day of taking care of him and the kids and also working and cleaning!