Met with the doctor again to understand what he means by 'brain damage everywhere'. Before, he'd said it was damage that would cause gross motor skill disability, like cerebral palsy. But now he says everywhere—does that mean that the scope of the potential disability has increased? The answer is yes. Liam could be developmentally delayed, or blind, and prone to seizures, plus the cerebral palsy, which could be viciously severe.
I finally take it up online, googling 'grade IV brain bleed'. And I find this:
Grade IV IVH children should NOT be kept alive, end of story. There should be no debate. It's wrong. It's wrong for the infant who is asked to suffer through this life, going through repeated surgeries and hospitalizations in attempts to try and fix all the consequences of neuro damage. It is wrong to force parents (particularly mothers) into a lifetime of caregiving, foregoing future children, foregoing stable marriages, foregoing careers... THIS is what should be presented to your parents of grade IV IVH preemies. Life after is not pretty.
I wake up in a nightmare, unable to stop crying. We've all been handed a life sentence. I feel selfish for mourning Liam's potential effect on our family, but it's not just that. It's his loss of what he should have been. It's a life of pain and suffering. That's the reality of what we're facing. The odds are just too remote.
I'm furious. I want to throw things, punch someone. Punch every oblivious asshole blessed with healthy, normal children, flaunting them at us. Everyone tells me how important it is to think positively. Then, daring to, I am clearly a deluded fool. We're being managed by the doctors, I think, because they just want to finish this shift and go home.
I wish we could go home.
The potential of mental incapacity... I had thought it safe to rule that out. I asked them, specifically, two weeks ago: just gross motor, right? Not mental? And they told me that's right. But now they say actually, severe retardation is a certain possibility, taking from me not only the body but also the soul of my son.
Whatever you do, don't tell me it's going to be okay. Because it's not.