Another Decline

A journal excerpt:

"Today I went on a morning winter walk with a friend. We had a great chat and endured some wicked winter wind! When I came home, I saw a text from Michael that said "Hyrum had a big change last night." And he was right. Yesterday, Hyrum was crawling. Walking with some assistance. Eating normally. Today, he barely rolled out of bed. His speech is much more slurred. He can hardly swallow or chew. I spent a calm morning watching Avatar with him while McKay crafted a brilliant in-bed iPad stand out of cardboard boxes.

The afternoon got messier as I tried to arrange hospice, cancel future doctor appointments, etc. Lots of phone calls. Eventually the hospice nurse came, along with the clerical guy. We sat down to chat with them, but the nurse skipped all the useful questions and went right to advice giving, telling us exactly how to talk to our other kids about Hyrum's death and explaining that when they're teenagers they'll need counseling... Then when I tried telling them what we need from our hospice care, she cut me off to explain some random machine... And to top it off, she was loud and pushy with Hyrum. No listening. No connection. It was all I could do to survive her one visit, and it took me several hours to calm down after the experience.

As I was trying to do so, there was a knock on the door. It was the neighbor family that miraculously found us at Stanford. Our Hyrum and their baby were there at the same time, being treated for very different things. Their little babe is home now, two doors down from us, recovering and growing. Hyrum is here, dying in the basement. They brought glowsticks, orange juice, and raspberries... Hyrum's favorites. She hugged me and they sang "I'm trying to be like Jesus".

That song... It's important to me. Singing that to my sisters in our childhood bedrooms was the first time I remember noticing that I was feeling the Holy Ghost. Hearing it tonight was comforting in exactly the heavenly way I needed. I cried. They left, and I cried some more. And some more.

My parents brought Caleb and Emily home from their house, and we got them into bed. I asked Mom and Dad to stay. I just wanted them here. Mike and I go up and down the stairs, checking in with kids, getting water for Caleb, etc. Twice, Caleb called out, alarmed on Hyrum's behalf. "Hyrum needs you!" He climbed the stairs to say. "Mom!!" He yelled again, when Hyrum was coughing on his own spit. Sweet, sweet Caleb... "How are you feeling?" I asked him. "Nervous? Sick? Okay? Sad? Normal?" He sobbed to me "He is my bestest bestest friend... and I will not get to play with my brother."

And he's right. I cried with him, brought him upstairs for a brownie, then moved Caleb upstairs to a different bedroom. I will sleep with him tonight.

So yes, today was the "This week, my child will die..." type of day. Some of that was peaceful and lovely. Some of that is emotionally draining in a way I can't describe. And some of that is irritatingly bogged down in logistical details that I wish didn't exist. We'll find a different nurse. We'll keep arranging grandparents and cousin play for Caleb and Emily while we take extra Hyrum time. We'll keep crying and talking to each other and breathing fresh air whenever we can. We'll be able to do this... Right?"