February 2, 2020

Day 10 of Hospice 

Dear Sonzee, 

Today was the last Sunday you ever lived.  Today was the last complete day you ever finished.  Today was one of the worst days of my life, but I am hoping for you it was close to being one of your best.  Today was a day that your soul was no longer in your body, it was obvious, but yet you continued to breathe and be physically present.  Of all the situations I have ever been faced with as your mother, these next and last 36 hours were by far the absolute worse.

As you know, we weren't given a time line, but I can't tell you how many times I would hear from the new hospice nurse each shift that they would find it hard to believe you would still be alive for x amount of time.  Then that time would pass.  

Aba and I agreed we wanted to remain at home with you.  We hadn't really ever spoken about transferring you to Ryan House during the week, but when I mentioned I wanted to remain at home, he didn't say anything against that and I remember feeling such a sigh of relief.  Nurse Paige worked today, but she was supposed to leave at 4pm. I was petrified of you dying without a nurse present.  Thankfully hospice worked out that one of their amazing nurses would come and spend the time with us.  He sat with us for hours.  He had been privy to some unnecessary family drama over his time in our house, but he lightened the mood when he said it wasn't the first time.  I wonder though if he just said that.

He said he could stay until 8pm, but when it was getting close to that time, you were still with us and I panicked over being alone.  He mentioned your time was limited, so we called Nurse Paige.  She came back.  I think by 9:20pm he left, and nurse Paige wouldn't end up leaving until after you took your last breath.  I was always so thankful for her presence in your life and our life throughout your life, but even more so during your time on hospice, and especially the last few days.

We took more pictures with you and of you today.  The one regret I will always have is after Laeya took a selfie with you I said I didn't want any more pictures.  The picture of you two is so hard for me to look at, but in saying no more pictures, that in turn meant the last pictures of us together occurred today. It would take another two months for me to realize the repercussions of my request.  I wonder if I had allowed pictures if I would wish I hadn't?  I guess we won't ever know, but as another learning experience, I share with those on the same path, take the pictures, you can always erase them or just not look at them.

I won't go into the details of how you presented today.  I think that is something best left to those who have to endure this indescribable experience.  I also don't have the ability to write it out in words.  My last letter from our time on hospice will be tomorrow.  Until then.

Love always,

Ema