My husband sent me this article written about special needs mom. I get a lot of articles, poems, etc from people but this one really hit me. It is so true. I encourage you to go read it so you will understand my responses. I don't think any of the "special needs moms club" writes these pieces so people will feel sorry for us or feel a need to reach out. We do this so people will understand.
1. I couldn't agree more. I may actually get out for a night to see people but it's rare and even when I am there I still feel lonely. It's a different type of lifestyle and any time I wish I had the freedom to run out to dinner or to a movie I feel very guilty. I feel guilty because I know the only way to have that freedom is to lose someone very special to me and that's not acceptable.
2. Wow, this is true. Just this week we had a massive fight over the failure of understanding what the other party needs. We don't get much time to ourselves for "us" time. Yes we have a nurse and we are OH so lucky but that nurse is for us to work. On the weekends we have so many errands to do while the nurse is there we still don't get much time to ourselves. However, we recognize we get more than a lot of other special needs families. We also get zero time to work out so I don't feel as pretty as I used to which affects the way I display myself to my husband. However he doesn't ever seem to mind. My husband is a great dad. He is my best friend and I love him dearly.
3. I would prefer someone ask me what happened to Jude. Last week I had someone that was very inquisitive. She herself had battled cancer so I think that is why she is okay with her questions and I had questions for her. It was refreshing to have someone that asked me so much. I want to share with you what happened rather than you just wondering. I am also not easily offended by anything rather it be Jude or just everyday life.
4. Oh my goodness this fits me. I am constantly convinced I am dying young like my mom did. Well okay not so young anymore, but you get what I mean. I am always worried about something happening to Emily or Mike too. Why? I worry about myself dying because I don't want to miss the good times and I don't want to leave my family without me. No one will care for Jude the way I can care for Jude. I don't want him in a home if something should happen to Mike and I both and I worry his care will just be to much for another party. I worry about something happening to Emily and Mike because I just don't think I could make it through something like that. Ugh, just hate thinking about it.
5. That is summed up in the article. We can tell what Jude needs just by his body language.
6. Jude cannot clearly say he loves me, but he tries. I know what he is trying to say. I also cherish each time Emily says those words and I cherish them each time Mike says them. They mean the world to me. I once wrote about and article my cousin shared about a disabled son telling his mother than you for caring for me and she replied it was her honor. I totally agree. It's my honor to be the mom and wife of my amazing family.