Friday, September 25, 2009

Thursday September 23rd

It was a long walk from the doctor's office to the waiting room. We had just got the news we had feared for so long. Lauren and Selena were in the waiting room and i had to get them so the doctor could tell them also. I was walking but felt like i was floating and spinning out of control. I wanted to scream and run away but had to hold it together so i would not alarm them. I had just been told my wife was going to die. When i found them i simply said mom wants you. I quickly turned away so as not to give it away. They knew immediately.

That was one year ago today. I have a terrible memory but i remember everything about that day like it was yesterday. When i see pictures of Marilyn standing, those seem like distant memories though. So weird. 21 months since the onset of symptoms, 12 since diagnosis and Marilyn is still holding on to life. Lynn asked her is she was afraid today. Mare told her yes. Not about her future in heaven, that is a given. But afraid of missing things here. Mom things. Graduations, marriages, grand kids, homecoming parades. I had to take one of those things from her today.

I am so thankful for all the help and visitors (i could not do this without you) but it allows for little time for us just to be together. In the mornings when i am here alone with her, she is sleeping. Then between gpa and kay arriving around 11 and visitors and naps, we have little time together. Please dont get me wrong, we want and need all of you. And i need the breaks that you allow me to have. Im just getting a little jealous of her time as we draw nearer. I finally got some alone time and had to tell her that going to the game to see her little homecoming king and his queen friday night was not a good idea. It is going to be cold and she has not been out of the bed except once in 20 days. If something were to happen, it would devastate bubba and all those that know her. She said in her cute little voice, "couldn't i just sit in the van and watch?" I hate ALS. I hate those letters and what is behind them. I hate what it has taken from mare and us and it does so in a cruel and slow way so you have to experience every moment of it as if in slow motion so you feel it even more.
Dr Paul the hospice doc came today. He is concerned about mares increasing muscular/skeletal pain and headaches. He suggested mare go on methadone and a ibuprofen type med and she agreed. She will also switch to a pump to feed her overnight. She is taking more now and the hang feedings are not quite slow enough to keep her from getting a tummy ache. He is such a kind and gentle man. When he left i walked him out as i wanted to ask him something. Outside, he told me he knows what im going through. His wife passed of breast cancer some 15 years ago. We shared a tear together. Then he told me what i was going to ask, he knew. He said we are close. Very close. He recognized that she is a fighter and could surprise us all. We all know the writing is on the wall but he wanted me to be aware of some things. He told me some things to avoid any future guilt. He assured me i was doing a good job. He also spoke of all of you. Marilyn's Army and how impressive our level of support is. He should know. He sees a lot of folks in our shoes. We have a lot of people in our shoes walking with us. Can i say thanks again? Wish there was a word that meant thank you on steroids. I'd use it.

Gpa and Kay went home for the weekend. I know that was hard for them. They have been here 6 months now and have invested a lot of themselves to mare and our family. They will come back on Tuesday to continue their support.

My night angels gave mare and me a restful and peaceful sleep.

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