Yesterday mare had a huge decision to make. It is another step in the ALS journey. To go on the drip is one step closer to the end. Not giving up, but using the tools available to fight back the onslaught of ALS.
Mare made the decision to go on the drip after asking me, our kids and gpa and kay. She is holding on to each day and would not have made the decision if the doctor had not recognized her desire not to give in and meet her half way. She is on a low dose that allows her to stay alert but gives her the ability to give herself a bolus or another "hit" of the medicine for those tough moments. When the nurse was here telling mare how it would work and that she had the ability to give her self some more if needed mare said, "you mean if i have visitors and dont feel like visiting i can give myself a hit and go to sleep?" We all laughed.
Mare slept well on the drip as Carmen and Lynn watched over her. The day did not go as well. Her body is starting to shut down from lack of oxygen and is causing normal bodily functions to be more painful. It was a tough day on all of us and tough enough that Mare requested no visitors. She was pretty short with all of us and then apologized for doing so.
Thanks for coming up and brightening the house lauren, and for the hug. I needed it and I love you. Thanks for the flowers that were left on the porch. Mare loved them. Thanks for the books mona, i love that author. Thanks to all my lake stevens friends who have called, emailed and texted me to give me a phone hug, laugh or just to let me know they are still with us. Thanks to my help gpa and kay who allow me to escape this for a brief time each day. Thanks to John and bob for taking me out for pizza and beer. Thanks to all my tennis friends that help me escape. Not fair that i can and mare cant. She said yesterday that she wanted to wake up and have it be yesterday.
Thanks to all of you for hanging in with us. Thanks for praying she will have a restful and peaceful sleep.