The Way He Lives and Dies

Sometimes I know I need to write something, but there's so much emotion in it that it makes me shaky. Writing is recognizing. Naming. Acknowledging and accepting reality... And that is hard to do.

Hyrum is dying. Not exactly the most shocking news... He doesn't drink anymore, doesn't even sit up. He eats little, and just the act of chewing spends more calories than he'll make from each bite. He is sometimes restless, uncomfortable, bothered by noise. He needs a mid-day nap now just to make it through the day. The shocking part is not that he is dying, though- it's HOW he is doing it. 

Hyrum spends hours laying quietly, staring at his Jesus picture, placed beside his throne. He requested dozens of them, actually, to be taped around the room in specific, easy to view locations. In moments of miscommunication, he never gives up trying to be clear about his needs. Talking is HARD, but he always tries again. He patiently waits through Caleb and Emily's playful chatter until his head is so full that it hurts. His pain tolerance is immense, as is his patience with his caregivers. Even when he's hurt, upset, and so misunderstood, I feel his self-restraint. His strength. His love for me and us. 

Last week, he turned over in bed and handed me one of his precious gold chocolate coins. "For... helping... me", he said. He asked my mom for some new trinket toys, then slipped them into bags for Caleb and Emily, gifting it to them one toy at a time. He's dispersed his California shells to family, explaining "This... will... help... you... remember... me... when... I... die." Hyrum was given his favorite Bugle chips today, and he spent 30 minutes tracking the distance between the bag and 10 small red party cups with his shaky hands. 

He'd wobble as he grabbed some chips, then slowly lift and find the cup, then strain his neck to see the ones he'd spilled. He'd pinch around each fallen chip, then finally feel it, grab it, place it in the tiny cup. So slowly. So unsteadily. So... unbothered by it all. He didn't mind his nerve-shot hands or almost blinded eyes. He wanted to share what he loves, to give good gifts, to serve. He didn't eat a single chip, but shared them with us all. He's calm. Content with what he is. How does he manage that?!

He's sucking every ounce of life from each new day he has. He holds tight to his pocket knife. He asks me not to leave. He chases light and shares it in those tiny, godly ways. He's living, and he's dying... Somehow he is doing both. 

I always thought of death as an event, a sudden end. The impetus is elsewhere, right? Grim Reaper, all that jazz. I guess that's sometimes how it goes. But this? It's something else. Death might come in an instant, but the dying? It is long. It's something you can shape and change, as Hyrum's doing now.

Death is a rightful child of life,
companion to us all.
My living is its childhood.
Will I be intentional?
Do I make death an orphan?
Cast out suffering and pain?
I may, but they've inheritance
that they will come to claim.
Or will I face the truths of death
and let them in my home?
The dying could be lovely,
if I've claimed it as my own.
My Hyrum? He has done it, and still is.
He's earned his throne.