My daughter's Chiari 1 Malformation repair surgery went well (decompression and duraplasty). The doctor didn't have to remove any of her brain. Thank you to all who offered prayers and support in our behalf.
It took longer than expected because she has an extra thick skull. (The doctor said it was about three times as thick as most, and if he'd had to remove any more he'd have had to get a new saw because he burned through the one he was using.) He removed a piece of her skull. He removed the back half of her first vertebrae and shaved off part of the second. He opened up the dura (the covering of the brain) to make more room and patched it with a piece of her scalp. She goes back next week to have the staples removed and make sure everything's healing well.
She's still quite medicated, so it's tough to tell if any of her symptoms are better.
Three long days in the hospital with her were exhausting. I was sleep deprived when we got there and it only got worse. I tried to take care of myself while taking care of her. I ate some. Slept some. Neither enough. Because she was my top priority. She needed me there in order to feel safe. She was scared.
Since we've come home it's been better. She's slept more. I've slept more. I'm keeping her on a strict medication schedule to stay ahead of the pain -- absolutely no waiting until it hurts. As soon as she can take more meds, I give them to her. It won't be this way for long. I will start to stretch it out when I think she's ready. But right now she needs to be able to relax a little and sleep so she can heal.
I am sleeping on a mattress on the floor of her bedroom at night. There was an oxygenation issue in the hospital that's got her a bit paranoid. Having me there to make sure she's breathing lets her relax. It's a small price to pay.
While I was at the hospital with her those three days, my oldest daughter played mom at home. She got people up and off to school. She kept track of people. She ran things. All while finishing up classes and studying for finals. She was a life saver for me and now has a better understanding of how hard it is to be a mom -- I understand there were some tears. (Don't ask where my husband was. We had a fight that started while my daughter was in surgery and continued throughout the day, both of us sleep deprived and stressed. He was not in a good place those three days.)
Since we've been home, my daughter's ex-boyfriend-but-still-best-friend has spent most of the daytime sitting with her in her room, running errands for her and/or me, and giving me a chance to rest. This would have been incredibly difficult without him.
And I have had to give up a lot of things. I've let a lot of things slide.
All of that brings us to my point. Balance is a myth. Life isn't about making everything we want fit into a tiny space of time and energy. Life is about deciding what's most important and choosing that. Life is about letting go of things that don't matter to focus on things that do.
I wanted to be at my oldest daughter's concert, but I was needed at my other daughter's bedside. I wanted to go to a discussion on literature of world religions, but needed to take care of myself.
There was a time in my life when I would have demanded it of myself to keep doing all I was already doing and find a way to squeeze this in there, too. Luckily, I'm wiser than that now. I know that's not healthy and not something to strive for or admire.
My priorities right now are my daughter, my health, and the other people in my life. The house will wait. There will be other fun opportunities. And anything that really needs to get done can be farmed out.
Life is about seasons. We do one thing for a while, at the proper season. As the seasons change, we need to be willing to change with them. We need to find the beauty in each season and not feel like a failure because we leave the other season behind. We need to be willing to let a season go when it's time to move on.
This is my season to take care of my daughter and help her heal. And it's the perfect season for me at just this moment.