Saturday, January 30, 2021

January 30, 2020

Day 7 of Hospice

Dear Sonzee, 

Today was your last Thursday.  You can guess that again today was filled with an abundance of hugs, cuddles, kisses, and love for you from so many people.  On today's list of squeezing in a lifetime of memories into a small amount of time, it was a family hand mold.  I was searching for hands mold kits on amazon two days ago when I came across a kit that was for an entire family.  I did a moment of hesitation and then it landed in the cart and then into the house.  I had a lot of naysayers, (echem, Aba), but I was determined to master this challenge, and not to brag, but boy did this mold turn out to be the most amazingly beautiful item our entire family will ever create together.  Thankfully pop-pop took a video of the majority of it, and it one of my most favorite videos of all time.  So much chaos, laughter, insanity, and screaming that it's hard to watch it without laughing and smiling the entire time.

Today was the day that I arranged how we would be giving your GJ tube syringe to those who would be handling your care after you died so they wouldn't struggle with removing it from your body.  Really it was Mrs. Zupnick thankfully who took care of it all, all I did was send her a picture of the tube itself so she could explain it best.

Today your rash came back.  It was on your cheeks mainly this time.  Bright red and also puffy.  I was really wanting to know what the rash was, it didn't matter, but I needed to know.  Your eyelids also began to get puffy again, it was so confusing to me because you had next to no fluids going into your body at this point.  In the end, I think we attributed this rash to the liver failure you were in, but nothing really ever confirmed that theory.

I had been really good about screening all my messages, phone calls, texts, etc., but today one of those random ones fell through my screening.  I stupidly thought because the person who reached out had a child diagnosed with CDKL5 it would be a message of comfort, but sadly, it was the complete opposite.  They went on to share with me that they knew exactly the position we had found ourselves in, except, she was selfish and decided to keep her child in the hospital so their child is alive, but next time they would do hospice.  It was at this point that I stopped caring about comforting others, or if I sounded like a b*tch, and simply wrote back that "this wasn't a choice, but thanks."  I no doubt assume they meant well, but sometimes (really 100% of the time) less is more, and not saying anything is better.

Aba and I spent months discussing choice regarding placing you onto hospice or not, in the end, our conversations were pointless because you made the choice for us. I will always be thankful to you for doing that for us.  I just wish people wouldn't say stupid things not understanding entire situations.  I wish people understood that hospice can be a choice that is made when your backs are up against the wall and there are no other options besides hail marys.

Today was the day we were listening to relaxing music during the day and Uncle Mathias looked like he had fallen asleep sitting against the wall, eyes closed, fully relaxed, only to abruptly jump up and literally run out of the house like Forest Gump.  I wish I had saved the camera recordings from the house and your bedroom so we could watch that moment forever on sad days.  I think we laughed for literally hours and days over this.

Today was the day your body for some reason would begin to seize, something it had not done since January 17.  I was so angry, I was so upset.  I didn't tell anyone about the first one that I saw except nurse Paige saw it as well.  Eventually, we told Aba.  It was really disappointing.  I had no desire for you to be seizing while you were actively dying. That was not how things were going to go.  Your body was so tired and weak it was even more horrible watching you seize than it had been your entire life.  Seizing was your claim to fame, you seized like a champ, you perfected that art, I wouldn't let it go down with you half hazardly being able to seize.  I was really angry with G-d over this.  I just wanted you at peace and in complete comfort.  That was not on my list of things allowed during your last days on earth.

Today my eyes and face would start to turn a permanent shade of red myself as the tears were challenging to keep at bay.  I stopped allowing as many visitors from this point forward because I wanted everyone to remember you awake and in your typical Sonzee manner.  I had thought it was already bad, but this weekend would prove to be some of the most difficult days of my life.

Until tomorrow.

Love always, 


The Mighty Contributor

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