Originally Posted by MotherWhimsey
oh, and you have to make horrible choices. Do you give your dying child more attention because you have to fit it all in before they die, but then you risk seriously screwing up the kid that's going to live? Or do you give the kid that is going to live more attention cause the other one won't grow up to be screwed up?
Here's my two cents on this one. Take it for what it's worth because I have NO experience with this and I'm going from childhood memories of my own (when I was four and wet the bed - NOT even close to what you're going through, and I SO realize that).
BUT - here's my master plan (and I hope it at least gets the wheels turning so that you think up something that WILL help, even if my advice is so far out there as to be laughable).
Say Linden needs a bolus for his G tube. And say he eats every three hours. And say it's a time consuming process to feed him and your daughter feels left out. Have her help. Maybe she can hold the syringe, or hold the container that the food is in while you draw it up. Maybe she can talk to Linden and hold his hand or stroke his hair. Maybe she can give him a play by play.
My point is, you don't necessarily have to choose. For the times when you DO have to choose, my only advice is to do what all parents do - go to whoever needs you most at that moment. Don't think of it as "who do I give more attention to", think of it as "who needs me now". Is there anyone who can free you up to get one on one time with your daughter after work or whenever? Or the reverse?
Honestly, the sad truth is, Linden most likely WILL take up more of your time. And it's not fair and it never WILL be fair, because it's not even Linden getting that time, it's the endless caretaking activities. It's the feeding round the clock, it's making sure stuff stays clean and uncontaminated (tubing and the like) it's the breathing treatments, and that's not even counting the therapy appointments! And it will most likely get harder as he gets older, because you'll have to worry about turning him and lifting him and all sorts of other stuff. Even diapers are EASY now, but what about ten years from now (assuming you're blessed with ten more years)?
So yeah, your daughter will feel short changed at times. The only way I can think of to even TRY to make it more equitable is to involve her as much as possible, because then you're spending time with BOTH of them, and she gets to help.
I REALLY hope that helped. I'm totally shooting from the hip, here, but I REALLY want to be just right enough to give you some support.