So Rob has entered yet another “phase” where he is not recognizing food “norms”. The raw sweet potato sandwich and the bead swallowing were the beginning. He will pour his drink onto his plate, add yogurt to the peanut butter jar and just today he made himself a cat food and cheese sandwich. Fortunately Nonna …
Huge thank you to Beth Peters for this gorgeous prayer quilt. The ladies at her church make these quilts and as each knot is tied, say a prayer for the recipient. She told me a story of a family member who had a very premature baby. The doctors called the family to say goodbye to the little …
Today was bloody awful! The agitation and compulsive pacing and packing started at 6am and by 5pm my emotional and medical tool boxes were both empty! The meds were as effective as tic tacs, except for the Xanax I took; that worked quite well. Dr. April popped in and more tweaks for tomorrow. Highlight of …
This is who I fell in love with all the way back in 1984. He had a cute accent, a fast car and a gorgeous smile. (Plus he was taller than me) I knew the day I met him I was gonna marry him. Who knew I was gonna do it twice? #38years #thatsamore
Today I deactivated Rob’s phone. Truth be told, we have been unable to actually find it for about a month now, and it’s been even longer since he has been able to use it. He will never call me again, or text me, or send me stupid memes. He is no longer one of my …
Why not wear two different shoes, why not eat pancakes and carrot cake for dinner, why not color outside the lines? This has been a really tough week for me emotionally, watching him breathe and wondering every day what the next will bring. And then we slip into some kind of routine and our new …
Looking back at 3 years ago – 2 years after diagnosis. He really loved that car. Wow! FullSizeRender
My Sunday morning view. It’s hard for me to have no agenda. Doing nothing makes me anxious especially when there is so much to be done. Thing is, there will be a time for that in the after. Right now, he is here and my feet are on his lap and that is all that …
Sometimes you just need your Mom! Today was a day of calm for Rob and sheer panic for me. Dr. April came by to follow up and it turns out Rob had a seizure. She believes it is disease related vs. a reaction to meds which haven’t changed in a long while. Apparently seizures are …
So the whole of last week was super chill Rob was back to being beatific and I was seriously wondering if hospice was premature now that we had the meds dialed in. This morning we got up same as usual, he was completely “normal”. I set him up to shave and shower, got him started …