I've been avoiding this - MRI results

So the week before Christmas Cicily's favorite neurologist had a heart to heart with Chris and I about Cicily's MRI. Basically it doesn't look any different. There's still no white matter, which is what we expected. The Dr. showed the MRI film to 12 or so colleagues and they all agreed you can't get less than zero! She said if we're seeing a decline in Cicily's abilities, then that's the path we should expect her life to continue taking. Cicily will most likely not live into adulthood. There are no definitives with this type of brain situation. But, the doctor felt it would likely go one of two ways. Cicily will get really sick - a bad pneumonia - and her body won't have the strength or control to heal and recover. 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, but want to type it instead of say it so I don't cry. I can sometimes talk about her dying in person without crying, but I hate the thought of seeing her "not be Cicily". I can't imagine her living too long without being able to smile, laugh and enjoy life with us. But, there's no way to know how long or when this would all happen.
We were expecting all of this news. Chris and I had both independently thought of aspects of Cis' funeral and what it would mean to not have her around. It still sucks to hear it and discuss it all with a doctor. It's also kind of relieving to have some sense of how Cicily's life may turn out as it's been a huge cloudy mystery since the white matter discovery 2 years ago.
I think back to how I pictured her life shortly after she was born: "By the time she's 20, you'll never know all she's gone through, she'll have a 'normal' life. It's ok if she can't talk 'on time', at least she'll still walk when she's 'supposed' to." Then when she was 3: "Well, she doesn't have white matter, but she'll just take longer to talk and walk than we expected. At least she learns as fast as other 3 year olds." Now that she's the ripe old age of 4: "She's going to die, possibly slowly and painfully. At least she smiles and sincerely enjoys life (at least - for now).