It Takes a Little Piece of My Heart...

Last Friday was one of the scariest days thus far since Skylar has been on hospice. I’m not in denial but I keep hoping that maybe they are wrong. Maybe she doesn’t really need this, but then we have weeks like we did last week and reality slaps me in the face. It seems to be harder each time and sting longer afterwards. I’m use to Skylar having seizures. They suck and they are terrible and I wish I could take it all away but it’s nothing new to see her have them. However, it’s completely new to see her have 20 in an hour and not stop and her pulse ox drops every time she has a seizure. She couldn't hardly get air before she would have another one. It breaks my heart to see her in pain and to struggle.

The most frightening thing in the world is to get a call that your child is being rushed to the ER by ambulance. Skylar’s heart rate was in the 30s and 40s and her temperature got to 90 degrees and she was unresponsive. I arrived at the ER before the ambulance and all I kept praying was that if this is it please don’t let it happen in the ambulance when she’s by herself. I’m not sure how I would have forgiven myself if I knew that she passed and she did it alone. I was sitting in the waiting room waiting for the ambulance and a social worker comes out to get me to take me to a conference room. I panicked. I knew something had happened on the way but she was giving me a more private place to talk to the doctors before Skylar got there. She arrived soon after and it’s intimidating when you have 10-15 people around your child and they are talking about defibrillator pads , her color being off, and to turn the oxygen up because she’s not breathing well. I stood in the back of the room while they poked her and gave her oxygen. They put warming blankets on her and a warming machine and started warm IV fluids. It was like I was trapped in an episode of Grey’s Anatomy except this was real life and this was my life and my child laying there. I just wanted to hold her hand and let her know that it was okay but they were so busy working on her that I just stood there praying that this not be it. My parents came to the ER, Clint came, other family, Hospice, and Palliative Care. It was nice to see the support and to have comfort. Thankfully Skylar’s color started to come back, her breathing started to improve and after a while she eventually warmed up. After a few hours, we were able to go home.

After this past week, she wasn’t quite the same. She is typically a very happy girl but she didn’t smile or laugh like she usually does. It took a few days to get her to smile and act like she was feeling okay. I, on the other hand, am still not there yet. Last week took a lot out of me and I can only imagine what it will be like in the future. The harder she has to fight the longer it takes me to recover from it. To say that I am not ready to lose her is a total understatement. I am terrified of losing her and more terrified that she will have more days like she did last week and they will be more often and I will have to watch her suffer through it all. I wish that I could take it all away and I wish that we weren’t going through it at all. My heart breaks a little each time and I’m worry about what will be left when the time does come because she takes a little piece of it on each bad day.