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!