"The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails."
- William Arthur War
Bubbe has started to wake up screaming in the night. It's that "I'm in pain" cry. Sometimes he falls right back to sleep. Sometimes, like last night, he's inconsolable. I wish I knew more about what's normal for a baby his age (ie teething) compared to what we can expect with his diagnosis. I've tried to read up on typical development, but it hurts to see how far behind Braxton is.
I've been in a state of hypervigilance. I think if Brax was a typical baby after changing his diaper, feeding him, checking his fingers, toes and nose, bouncing, rocking, giving baby Tylenol, I would have let him cry it out. But Bubbe isn't typical. I feel obliged to do more, and so I stood holding a pacifier for him to chew on for half an hour (he never got the hang of sucking his soother), and then ended up taking Bubbe to bed with me. I worry that one day I regret not doing everything possible for this little man.
But what does doing everything mean? Its hard not to impose my ideals and dreams on Braxton. I wanted so badly to take my little man so the zoo, to teach him to read, to have him play sports....so many ambitions placed before he was even born. Now I have to adjust my thoughts, and make new plans.
I want Bubbe to rise to his potential, and will do what it takes to keep him happy. And that means some nights with little sleep and some plans for the future changing.
- William Arthur War
Bubbe has started to wake up screaming in the night. It's that "I'm in pain" cry. Sometimes he falls right back to sleep. Sometimes, like last night, he's inconsolable. I wish I knew more about what's normal for a baby his age (ie teething) compared to what we can expect with his diagnosis. I've tried to read up on typical development, but it hurts to see how far behind Braxton is.
I've been in a state of hypervigilance. I think if Brax was a typical baby after changing his diaper, feeding him, checking his fingers, toes and nose, bouncing, rocking, giving baby Tylenol, I would have let him cry it out. But Bubbe isn't typical. I feel obliged to do more, and so I stood holding a pacifier for him to chew on for half an hour (he never got the hang of sucking his soother), and then ended up taking Bubbe to bed with me. I worry that one day I regret not doing everything possible for this little man.
But what does doing everything mean? Its hard not to impose my ideals and dreams on Braxton. I wanted so badly to take my little man so the zoo, to teach him to read, to have him play sports....so many ambitions placed before he was even born. Now I have to adjust my thoughts, and make new plans.
I want Bubbe to rise to his potential, and will do what it takes to keep him happy. And that means some nights with little sleep and some plans for the future changing.