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!!
"living with MLD is a trial day in and day out" You are so right! But having financial worries & worrying about how your children are dealing with the MLD, & trying to get the right care for your MLD loved one is frustrating and wondering what to do for them next when your Dr's seem to be clueless as to how to be helpful, And State Insurance or other insurance is it's own bundle of frustration and no fun! It all just seems to culminate in to one HUGE trial! I feel the same way. There is always something! All of it combined is physically, mentally, & emotionally exhausting. I am positive their are very few people who understand what it's like. And in your last post when you talked about having people from church check-in on your husband how they don't show up. I find that very disappointing! Although I found out for myself when people ask "if they can help just let them know", most of them don't mean it. All they really mean generally is if I can cook you dinner one night I might do it if you ask me on the right day at the right time. I have been disappointed with church members and how they respond to those in need. I just feel that the church teaches alot about serving each other but I see many times the members seem to act like they only should serve their family & friends. Which makes me sad. I believe we are meant to be "God's Hands" to each other and I just don't think it happens as much as it should. One time I ask someone if she could babysit for about an hour and she said she couldn't because she was going to a Relief Society meeting. I had to laugh about that just because the whole Relief Society program is about giving "relief" and helping those that may need it. I thought how ironic. But as they say the church is true but the members aren't perfect. That is so true even for me. Even though your husband has adult MLD and for me it's my children with MLD I feel we still have much common ground. Thank you for letting me read about your struggles. It helps me. I hope you do some how find a way to get a break I know how hard it can be. Big Hugs to you!
ReplyDelete