I took for granted

that Javier would have the world laid out in front of him, with only the normal wackiness of youth as his personal hindrance. We all took that for granted the first time we saw him. The infinite possibilities have given way to an intense hope on good days, a terrifying anxiety on others. The hope we hold out for is that there will come a time when science will catch up, that Javier is here when it does and that one day… one day we will be rewarded by being able to take something as extravagant as Javier turning 30 for granted.


I have almost as many hopes and dreams for Javier as I know he does for himself; dreams that will go unfulfilled if he doesn’t have the time to live them.  This disease seems insurmountable as a whole so what I need to do is take one tiny step at a time at combating it.  If you knew you would never see your child again, what would five more minutes to gaze into their eyes and smother them in kisses mean to you?  Please help me get just five more minutes.  Give me five more minutes with Javier and five more minutes to fight and I will find a way to buy 5 more.  And then another 5.  And another.  And eventually, a lifetime.