Sunday, January 31, 2021

January 31, 2020

Day 8 of Hospice

Dear Sonzee, 

Today would be your very last Friday and very last January you would ever live during.  Every morning this week before school your siblings all came to give you one last kiss, just in case anything would change during the day.  We asked each of your siblings what they wanted in terms of being notified if something happened, so we knew their wishes.  We made sure to ask them so they would know and understand we respected whatever their wishes would be and aba and I didn't want to force our own thoughts and wishes for them onto them.  Every morning since Monday they would come to your room and jump into bed.  I took so many videos and pictures, I am so happy I did.

Today would be the last walk you took in your stroller.  Aba was adamant he and Nurse Paige take you out, I waited in your room for your return.  You were not in the most comfortable place today, and after your walk that had not really changed much.  It was so horrible to watch you be uncomfortable.  Today was the beginning of the most hellish weekend of my entire life, there is really no way to explain everything that you endured your entire life, but watching you die, while we gained peace and comfort for you, was absolutely the worst experience of my life.

You had another bath, I think we did them at least daily as part of our routine and to help with keeping you comfortable and ensuring that you were always in clean pajamas so you felt your best.

Today I asked myself if hospice was really comfort-care.  I know it was, and that it is, but today you were so agitated I didn't know what to think.  There was a point today where I doubted everything we were doing.  I struggled with wondering if you were just hungry and not actually dying and we were killing you.  I considered throwing you into the car and driving as fast as I could to PCH for them to fix everything and make you better.  I felt like I was going down one of those water rides that resembles a toilet, I was just spinning.  

I was so upset about all of your seizures today.  I couldn't understand why you started to seize again and I HATED that they were making you uncomfortable.  You were on 10ml an hour of Pedialyte and everything seemed so miserable for you.  We had exhausted every medication in the hospice arsenal and nothing seemed to be working, it was absolutely horrific for both of us.  I am so sorry things got so out of control and I hope you don't remember how awful today was.

I had not googled one thing about dying or the end of life, and it wasn't until after I started to doubt every choice we made that it was shared with me that everything occurring was normal for the end of life.  I could have hurt every person who knew that but felt they were protecting me by not sharing things until they happened.  I made a vow at this point to make sure any of your friends' parents who enter a hospice journey are at least asked if they want to know all the details beforehand so they have some warning. It feels like the least I can do in offering support because it really isn't one of those things that you want to just learn on your own.

Today was definitely one of the most horrible days, but this weekend would prove to me that it could always get worse.

Until tomorrow.


The Mighty Contributor

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