I try to keep positive about this situation but some days are just too much. It is too much to hear people complain about the ordinary things that happen in life. Your house is a wreck, your kid lost their shoes, you had to take your kids to the doctor, you don't have enough time in the day for whatever it is you want to do, blah, blah, blah, freaking blah. I have a hard time going to the store and seeing how poorly people treat each other. I just want to grab folks and shake them and say "Your life isn't that bad" and drag them to the CICU where Weston fights for his life everyday.
Being in the CICU for almost a year, surrounded by children fighting for every breath, has changed me. Changed what I find interesting in life-changed the things I miss-changed how thankful I should have been for my messy house, cooking dinner, dirty dishes, and wild children. Maybe that was God's plan.
I am finding it hard to talk to my friends. Not that I don't love everyone back home but my trip home made me feel even more like a stranger. It felt empty and sad. I wanted to fly back as soon as I got back to our house because our house didn't feel like home without all of the kids. No one really understands how we live everyday. No one understands the roller coaster of emotions that we go through everyday. Any maybe I sound a little whiney but I just want my baby to get better and for us to go home. I don't even care where that home is (which will be a whole other post for later). I am exhausted emotionally, physically, and socially. I can't even have a real conversation with most people because we no longer have anything in common. I know God has a plan and he never told us it would be easy so I pray for strength.
In kind of good news, we have started some preliminary talks about Weston going to the CCU (the step-down unit from the CICU). I am torn on this decision. It would be great because Weston would have to be completely off the nitric and some of the drips so this would be progress and he would be healthy but he would also have much more freedom and I don't know what would keep him from leaving. I mean, if I go to take a shower, if he isn't connected to his IV pole and nitric tank, what is going to stop him from hopping on the elevator and leaving? The nurses are 1 to 3 which isn't terrible but I still worry. It is just a lot to deal with.
So, my whine fest is over. Thanks for listening.
I won't pretend that I understand what you're going through - you make the 7 weeks we were there seem like a walk in the park. But I do remember feeling just as isolated. On the one hand, I desperately wanted news from the outside world, so that just for a moment I could imagine something else and think about other places.
ReplyDeleteOn the other, I couldn't take whining about everyday stuff. It seemed so trivial. And facebook is full of whiny people! It's tough, but you have to remember that ear infections and messy houses really are difficult for other people to deal with, and it isn't fair to compare others' struggles. There are always those who have it easier and those who have it harder than you.
And while it's great to meet other people at the hospital, it can really piss you off when they go home after 2 days and you're stuck there indefinitely. It's a tension that's hard to describe and impossible to understand if you haven't been there.
Lots of people are praying for Weston. Tonight, I'll spend extra time praying for you.
Exactly! I hear people talk about "finally" going home after just a few days or weeks and I am thinking "really???". The social worker at the GOL House has asked me to join the houses support group but even those folks have only been here a few days/weeks plus most of their loved ones are able to wait at home for their transplant. After I went the other day, I felt even worse so I probably won't go back. I don't even really want to talk to anyone about it because I get more than my share between talking to the doctors and updating Adam. It is just nice to talk about something non-hospitalish but I barely remember how to have a normal conversation. When you are in the hospital this long, the hospital folks become your friends and your old friends kind of become strangers. It is weird. I talked to Meredith about it and she said lots of long term families have similar struggles but they adjust-which made me feel like less of a freak.
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