We all have them. We all get disappointed when they don’t get met, and that’s where I’m finding myself right now I guess. Disappointed? I’m not even really sure. Sad? Angry? Hurt? All of the above?
It still hasn’t really sunk in, or made sense I suppose, that we’re in this situation to begin with. How DO you really accept when your baby goes from fine (yes, we dealt with many struggles but overall they were ‘fine’, from a brain perspective?) to, not. In an instant. And then come the expectations; of how he’ll recover. You see other kids, and you don’t want to play the comparison game but your mind goes there, automatically.
Right now, our reality is that in 16 days we will take a child home that is nowhere near where we expected him to be and not because he’s further along. We came in not quite knowing WHAT to expect but HOPING he’d be close to where he was before he got sick. Yes, he’s made progress, but part of me is afraid that photos make this whole situation look better than it actually is. About 2 weeks ago we said we’d be thrilled if he can sit independently by the time he goes home. You know, meet one of those significant milestones. Now we’re pretty sure that won’t be the case. He has a LONG ways to go, and no one has timelines, but everyone hopes he will regain all those skills. Reality is tho, we don’t know and we won’t until he does, or doesn’t. It hurts. Breaks my heart. I miss our old Ethan. I’ve said it before: I don’t want to get used to this. But, here we are. Living it, daily, used to it in a sense?
Rehab has been incredible to him. To us. They have worked HARD and our “lack of progress we wanted to see” isn’t due to lack of effort. Goodness no. It’s just the cards we are being dealt. Insert the hurt, angry, sadness, all of the above.
Now that discharge has been finalized – we’re not extending his stay due to infection risk and his progress isn’t fast enough to justify the risks and all that – things are settling in, in a different way. Reality is kicking in more. We’re kind of in this alternate reality right now, but going home will make this all super duper real.
Just pray, for wisdom.
I don’t even know.