Here's a Halloween picture of Mom and Dave.

Mom's doing OK... some bit of difficult transition with the different medications... kind of feeling like we're "on our way" to some greater comfort, but not quite there yet. Annie arrived around noon today and is settling in. Great visit from my very foxy friend Nicola, her Mom and hew newborn son Aiden who was just 2 months old on 12/8. What a beatiful little baby boy, very grateful to be able to spend some time like THAT in this house right now. Some nice healthy new life felt good. Nicola is one of my oldest and dearest friends, my truest spiritual sister, for the last 20 years who is now living in Florida, just up visiting her NJ family. Thanks for doing all the driving, Nick. Irm visited with more beautiful casseroles... including our favorite "Gussie's" mac-n-cheese. The outpouring of love and support is really amazing. When I was back in the school nurse's office yesterday picking up Chloe, they had just learned about Mom living with us and were so sympathetic and so eager to help and provide information and resources and everything... and when I thought about it, I was honestly able to say to them "I think we're OK, we've got all the right resources in place and have really all the right support." That's really thanks to all of you... all of Mom's dear friends and family and all of you out there praying and sending your healing thoughts. This is such a tragic time... one that just seems to be lingering on... and it's really amazing how beautiful people come together to help each other during these times. Thank you to all of you for helping to teach me how important it is... you've all taught me forever now how important it is to show up. It reminds me of a cartoon I saw shortly after 9/11/2001... it showed a "before" picture of the NYC skyline... it was black and white and in the middle were the Twin Towers... then the "after" picture wasn't black and white anymore... it was brightly colored red, white and blue... with no Twin Towers... depicting how incredibly the country came together during that time of crisis.

Anyway, Mom had her massage today, which she never turns down. Thank God for that wonderful therapist who is so generously volunteering her time three days a week. No real laughs, no real cries, just kind of a day of angst, hopefully on our way to settling in with some pain relief. It's hard... and I think this may be harder now for me and Annie to rectify... but it's difficult that we seem to be getting to the point where taking the best care of Mom doesn't necessarily mean giving her exactly what she wants all the time. I think I've said this before but there's such a fine line between granting her wishes and taking good care of her. I don't necessarily trust her judgment all the time to make decisions that are best for her... that's really difficult to say and I hope it doesn't come off the wrong way. But for instance, Mom will tell us over and over again, adamantly... that she has no pain. She's actually NEVER admitted to having pain. But the truth is that contracted muscles HURT. You can't have chronically tensed muscles, to the point that your fingers are all gnarly and bent and twisted, without having pain. It's just hard... the nurse practitioner in Mom's ALS doctor's office said to me last week that I should "be a little forceful" about having Mom begin to use the Fentanyl patch. It's hard. I mean to disrespect my mother in NO way, and it's difficult to go against her wishes, but her wishes are so fleeting and sometimes she doesn't even remember from one minute to the next what it was that she was feeling so strongly about. She sometimes just acts combative because she desperately NEEDS some sense of control! Who wouldn't?! So, it's hard to balance.... and Annie said it tonight, "I just don't like doing things she doesn't want us to do". I know, me neither. What can I say except AARRGGHH!!!!!