Another day

I keep writing so its not all so blurry to me later. Bear with me if I repeat myself post after post.

Every day is a huge range of emotions usually including heartbreak, guilt, hope, exasperation, confusion, joy, sadness and everything in between. This morning I woke to a new one.

Terror. I got up and knew Abby was warm, but she seemed so peaceful, I didn't want to bother her. About an hour later I checked her and she was hot. I checked her temp to see 105. I gave Tylenol, because her intestines don't work, I'm limited in what I can give. 20 minutes later she was 106.1. I tried cooling her down with cool cloths, but 20 minutes after that she was blue with a temp of 107. Panic doesn't come close to what I was feeling. Her skin literally blistered on the side she was laying on. I called the hospice nurse, who came right over. By the time she got there, her color had gone from blue to grey, and her temperature was slowly coming down.

Once she cooled off, she's been mostly stable. She doesn't respond much, but seems to make little eye movements if she wants something. Once or twice, she actually opened her eyes.

I had no idea this could go on so long. I am shocked everyday . I think when we finally ready to accept that this was our only choice left for Abby, we saw it as the kindest thing to do at this point. She was in horrible pain everyday. She couldn't recover and we just wanted to let her go peacefully and naturally. I don't feel like what we've experienced is either of those things. She does seem peaceful, but this process is not.

I have to go against every instinct I have as a mother every day. It's not a decision I made once and that was it. I desperately wanted to keep going, even when I knew it wasn't best for her. Every minute since we stopped TPN, I've desperately wanted to restart it. Each day I have to wake up with the resolve to continue to do the one thing on the planet I don't want to do. The longer it goes, the harder that is. Picking up my daughter burning with fever and simply holding her when I feel like I should be calling 911 doesn't even feel real.

I just keep praying that God would take her peacefully. I don't want to be horrified by fever or seizures or any other awful thing in her last breath. This morning, I just kept praying "not like this, please, not like this!". Then she hung on, and I thought yet again how selfish I am. I need to just let go, however that looks. I keep asking Abby why she can't let go so she won't hurt anymore, but it's painfully obvious where that comes from.

I've spent the evening back and forth between hymns and lullabye stations on Pandora while holding a very quiet Abigail. I'm not even sure what to pray for. I guess God already knows what we need.