Wish I could make it better for you and the rest of us fighting this insideous encaphalopathy. And poor, sweet Michael caught in the middle of this.
I can tell you are at your witts end. It is a blessing that Mark forgets or is unaware of the impact of his encephalopathy. Unfortunately, there is nothing to take the pain away from the loved ones who walk on eggshells and never know from hour to hour whether they will have their family member or a confused, abusive stranger.
I understand your doctor's concern about respilte care; however if you are drowning there may be no option.
Over the past year I've watched you change from wanting Mark to survive whatever the toll to accepting whatever is going to be. I still pray the call will come soon with the new liver for Mark, the transplant will be successful and the worst will beover. But I also know this terrible disease could still claim Mark before this happens or he could reject the liver or be lost to complications of surgery.
You remain in my thoughts and prayers. Never hesitate to tell it like it is. We cannot take your pain away but at least you will know you are not alone.
Ma, I really sometimes wish he knew the impact or he could spent a day with someone like this so he would be more understanding. It just really struck me wrong this morning, when Michael feared going to school, because he knew his teacher was going to have them write about their Christmas, and Mark having the reaction he had over me writing a note to his teacher. Mark, I can see has no idea what this is like to go through this time after time. It does make one resentful, when the person who has caused all the trauma, being very insenstive to other peoples needs. This is not just all about him, his family is hurting and he wants to get nasty about it, when I try to soften it for our son. Michael does deserve to be protected at his young age, his father needs to be more sensitive to his needs instead of being on the defense. I know I am rambling, but I am just so tired of it all.
Thanks everyone, I was having such a "bad" day. Surprisingly Mark gave what I said alot of thought and he apologized for getting upset over the note I wrote the teacher. He said he understood Michael needed someone to be his advocate also. I just got off work, so I am off to bed for now, will post later.
Post Edited (hep93) : 1/9/2007 12:34:59 AM (GMT-7)
Hello to All, I finally got some much needed sleep!! I have got Michael set up with the Big Brother program, will see how that works out for him. He did keep his honor roll status. Mark has been very lucid, and more understanding. I am making an appointment so the doctor can put me on antidepressants, as I know this will help my attitude. I think I have put this off way too long!!! I worry about everybody except myself. Then I blow up!!! It is just so stressful, doing the waiting game and Mark having so many hospitalizations (14 this past year). There is just nothing simple about living with this awful disease.
I do appreciate the support, you have all given me.
Thank-you Marg and Annette, Michael and I are doing better, emotionally. Mark is just not feeling well, no encephalopathy thank goodness. We are just taking things as they come. The waiting is just a whole different story all together. His doctor is such a caring person, he wants to see Mark with a new liver as much as we do. So we will just keep on praying for the phone call. I appreciate all your support and input. Most of all for listening to me vent!! It helps knowing I am not alone!
Trish, I know you have been very good to Rick, and have put up with so much abuse from him. We all have our breaking point, just stick to your guns and don't give in. Ending relationships are not easy, I too have been there. I am glad to see you in school, you will be a wonderful teacher one day soon.