Thank you everyone for your support and prayers. Thank you for sharing the pain and wanting to ease our minds but as Mark posted (and removed)...
"It's Sam. not anyone else. it's SMA, not something else. It's 18 months, and not a few years. We were explicitly told to expect death, and not just the "worst".
Of course we have faith, faith that God knows what his plans are for Sam, whether he takes him home early or not. Faith is not just about believing that God can, coz the truth is he always can. Faith is also about trusting that sometimes he won't, if that's His will, and faith is all about that: His will."
As my OB said, "Lord, Your Will. Nothing more, nothing less, nothing else."
I guess Mark must have removed his comment because he thought it sounded offensive of ungreatful. But its true. So I posted it without permission and hopefully he doesn't get mad... And I do hope you understand.