So much to be Thankful for

With Thanksgiving just this last week I have been thinking about what I am thankful for. I have so much to be Thankful for, I am thankful for my kids and that we are still able to enjoy Jaren and that he still knows who we are. I am thankful for my health without it I probably wouldn't be able to handle the things that I am dealing with right now. I am thankful for the friends that we have and for the many hours that they kidnap me and take me out for an hour or so. I am thankful for my family that helps me with the kids and Jaren so much and that they don't complain when I call and ask them to do things for me. I am thankful for the job that I have and for the bosses that I work with, they are so understanding of my situation that I know I am meant to work there.

I am thankful for the new friends that we made this last month, she knows exactly what I am going through her husband acts the exact same as Jaren, She is a huge support to me, we can talk and now exactly what the other is saying. Jaren and her husband get along really well, the first day we met them Jaren said to me "I wish we lived closer to them, he would probably be my best friend." they have a daughter that is 5 days younger than RaKelle and they understand each other also, they can relate to each other, there are not many friends out there that have to hold their dad's hand to cross the street, or babysit their dad when their mom has things to get done.

Sometimes it is hard to be thankful for things that can not be helped, I am thankful for the blessings and the many people that have come into my life because of MLD but I can NOT say that I am thankful for the disease it is hard to sit back and watch your husband act in a childish way and not know why he is doing the things he does. I try not to dwell on the negative side of the disease but lately I have not had a choice, to be on Hospice he has to be declining physically and so we have had to watch every little thing that has declined in his abilities to do anything, he has to recertify for Hospice every 2 months so now that we are done with the recert for hospice hopefully we can start looking at the positive again for a couple of months at least to get us through the holidays.

What to do?

I am not really sure what to do now days. I am struggling with the fact that I am working and not being able to stay home and take care of Jaren, not to mention I can't seem to get anything done when I work. I am having a hard time with the fact that Jaren sits home and plays nintendo all day, I need to find something for him to do instead of vegging on the couch all day but he can't go out walking unless someone is with him and he can't drive so what do I do with him? I don't really know what to do at this point. I came home from work one day last week and he was wandering the neighborhood thank goodness I came home when I did so he didn't get to far. Hospice comes in on Monday, Wednesday, and Friday but I am still trying to find something or somewhere for him to go on Tuesday and Thursdays. I am feeling guilty that I am not doing enough for him and that he is going to just get worse if I can't get him off the couch.

I am struggling with things that happen to people everyday in life, Braxton came home with a note from school saying that he needed glasses I know it is little but that is huge to me everything that happens is one more thing that I have to think about and do something about. I don't take much time to think about things I just have to do it and get it done so I can check it off my list. We went to the dentist today and no cavities but he stated that RaKelle will need braces in the next couple months, and Ashlyn is going to need a new flipper soon so she doesn't have to go with out her two front teeth from her accident that happened a year ago. Sometimes I just wish that I would only have one trial at a time but living with MLD is a trial day in and day out,and it will never end, and what would I learn if everything wasn't dumped on me at one time. I wish that MLD was the only trial that I had to deal with but that will never happen especially with kids. Thanks for listening to me gripe I just feel like sometimes I can't get out from under and it seems that things will never stop and I sometimes NEED a HUGE break!!