The long path

When we received Cicily's degenerative/terminal diagnosis 4 years ago, we had a 45 minute talk with her neurologist (yes she was amazing and we are heartbroken she died before Cicily).  Dr. Sweetnam described that Cicily's life would either go one of two ways: she'd get too sick to recover and die; or she would continue on a path of degeneration where her body lost function and she'd slowly die.
Chris and I discussed this at length and both felt that clearly her body would take the shorter path for many reasons.  She'd always been so sick as a baby and young girl.  We know her love for life and being able to live it up as much as she can.  It sounded easier than the alternative.
The alternative, as I wrote in January 2011, "Or, her body will slowly lose more and more function. This would mean she'd gradually lose the ability to crawl (which is somewhat happening), sign (also happening), sit, hold up her head, digest food, and so on, and ultimately breathe. As the doctor put it, she'd at some point "stop being Cicily". I hate that phrase.   I can't imagine her living too long without being able to smile, laugh and enjoy life with us. "
She's been so healthy over the past year compared to early on in her life, that we're starting to realize we're on the longer path.  
So rather than expecting every severe pneumonia to be her last, we're looking at long road implications.  And at the top of that list is, how do we continue to help Cicily be as happy as she can and get every bit of joy out of her life.