its 130am and Lauren is with her moms bedside. Lauren is my rock. She has been so strong througout this whole ordeal. She has her moms beauty and strength and grace. I know she will be a stonger woman after this is all over. I am so proud of her. Brian has his moms compasion and personality. My two amazing kids are such a reflection of their mom. Marilyn will be with us all long after she is gone through the life and accomplishments of our children.
It was almost a year ago that we got the official diagnosis. Although i knew it was ALS long before the doctors told us. I was reflecting tonight on how our lives have changed in a year. Things i now take for granted would have been unthinkable a year ago. Flushing marilyns feeding tube. Bathing her and helping her go to the bathroom. Giving her injections of serious medicine. It is all part of a normal day now. So surreal.
Marilyn was in rare form today. She finally was able to get some sleep between visitors and when she woke up, her sister and her boys were surrounding her and of course kathy was crying. Mare woke up and said, "am i dead?" She was throwing out the one liners today like others take a breath. Bad metaphor. She was flippin it to me and my sister lisa who came up to spend the night to help. She was in a good mood. Almost every word was a joke. Amazing when you consider if she were to take off the mask, she would probably pass in just a few minutes. I think of all the self pitty parties i have and feel ashamed when i am with her. So courageous. How does she do it?
A friend of mine that i have not known that long told me her husband with ALS finally got to the point that he took off his mask and passed in ten minutes. Someone asked me today how long Mare can continue like this. I told her it was hard to tell. The rapid progression of this damn disease will eventually make even the bipap machine useless in helping her to breathe. Her lungs or heart could go any minute. Or, Marilyn could continue to bless us with her story for a while. Time will tell.
I made the decision to take the first two weeks off work which was to start tomorrow. Apparently, june july and august were not enough for me. I cant leave her like this. A good friend stepped up and will sub for the first two weeks or more. I have enough days on my own to take the first three weeks off. I was hoping not to do this as i know i will need time when this is all over too. Another friend took the responsibilities of my tennis team. I am so fortnunate to be surrounded by such supporting people.
Gina had to go home today. That was so hard for her.
We played the lullaby for mare again. If you did not listen to it, you must. Check out Sundays blog and cut and past the link.
May mare have a restful and peaceful sleep.