New Hospice and the Throne

We're still here! Hyrum doesn't walk or crawl much anymore. He can sit unassisted for a few minutes at a time, then needs to lay down again. His head LOOKS heavy, swinging side to side sometimes as his neck struggles to hold it. We're thickening his fluids to help with swallowing, chopping soft foods to small sizes, and starting to abstain from hard foods like crackers. He speaks less and less. He still does occasional outings with us- sacrament meeting, swimming at the Provo Rec Center, ice skating. Alternative therapy, you know? We play board games, watch Bluey, eat jello, play pretend. 

One of our recurring games is "Royalty", where King Hyrum lays on his pillow throne, and his two pet cats (Caleb and Emily) fawn over him while the adults fetch requested items. Out-of-state cousins came to visit this weekend, and they even made special scanner badges that allowed entry into the throne room. The game seems to have blurred into our reality... the other day Hyrum requested "a royal diaper change" lol

I was very emotionally hung over this week. The suddenness of that bad Friday shifted into the relief for more normal days, which shifted into some distraction/denial while I buried myself in those semi-normal days. Cue the angry me, and then the big cry, the writing, the talking it out, and then some excessive napping to top it all off. I might blame the excessive napping on a minor cold that finally caught up to me after working its way through the whole family. (Did I forget to mention that Caleb was in the ER the day before Hyrum's comatose day? Ah yes, I did...)

The real news is that we DID find another hospice company, and they are great. In fact, I can't stop thinking about this analogy for the whole situation, so I'm gonna share it even though it may sound a little strange. In December and early January, I studied the Nativity story really deeply. Really slowly. I asked myself a million questions about it, pondered alternative scenarios, studied Jewish customs, attended various Nativity events. The things I learned and felt were SO meaningful. 

One of my impressions was that the witnesses of Christ's birth were NOT the people you'd expect. Not Mary's mother, or Joseph's sister to help with the new babe. The new parents were not in the place or circumstances they'd expected. WAYYY off from that. They were hundreds of miles from home with a stable for their birthing center and the lifelong task of parenting the son of God. I took comfort in the tales of Jesus's childhood travels- Bethlehem, Nazareth, Egypt, all before he was grown. He turned out alright... so maybe my kids, with all the instability and traveling of this year, still can also. 

But back to the shepherds, the wise men. They were such obscure visitors! I've speculated and read theories about why they were the ones drawn to Christ's stable, but there's nothing concrete or obvious to explain it. I did observe this in their story: sometimes the most unexpected guests have the most valuable gifts to offer. The wise men brought treasures and testimony. The shepherds brought hearts willing to be changed, voices ready to make noise about Jesus. I don't know why God brought them there, but their offerings and interactions with Jesus are beautiful. 

We began this hospice stuff with a specialized pediatric company- the kind you'd expect, given our circumstances. Buuuuuut it just wasn't right. Through family of family, however, we found our current team (who you can ask me about if you need a recommendation). They don't really do pediatrics. They don't even work with our insurance. For some reason, though, they made arrangements and offered to be part of our story, and they've done it with so much gentleness and comfort and love. 

We've visited with our recurring nurse, their social worker, the chaplain, and the team doctor. They brought donuts. They brought a puppy to play with the kids. They offered to take Hyrum horse-back riding. They brought good questions and they listened to what we know and feel. This isn't just what they do- each one came because they chose to be with us. They are the unexpected visitors in our sacred, vulnerable moment, and their offerings have been inspiring and divine. 

It's still a weird situation to be in. I'm not that old, guys, but I'm planning a funeral and borrowing liquid thickener that was previously used on an Alzheimer patient, and I'm watching my son die a little bit every day. He is ready to go home. I am ready to go home. For now, though, we watch God's hand move in mysterious ways- bringing people in and out of our story, bringing us into and through it all.