Cancer, Coping, and the Every-Day Maces

On February 25, 2023, Hyrum Michael Mace passed away gently, without pain. We miss him already. Before Hyrum was even born, we knew how badly he wanted to be here- in this world, in our family. He was an easy baby and a delightful toddler. He spent his first 6 months living with us above a laundromat, then three years in our south-Provo home. While we lived there, he loved walking to see the horses, visiting the family orchard, and reading books. In 2021, we moved to Oklahoma, and Hyrum quickly adopted our neighbors as family. We took daily swims in our neighbor’s pool, used rocks and berries to make “canal soup” during family walks, and often visited the OKC zoo. Hyrum attended public Pre-K, made great friends, and loved school. On April 4, 2022, we took Hyrum to his pediatrician, thinking that vision problems were the cause of his week-long vomiting. A CT scan revealed an aggressive brain tumor- an incurable pediatric cancer called DIPG. Hyrum underwent 6 weeks of intensive radiation...

For a while now, I've braced myself for this. Yes, for Hyrum's passing, but I've also dreaded THIS. After his coma-like scare and that blog post, it hit me: "I'm the one that tells them that he died." My heart sank. All of you sweet friends... hundreds and literally thousands of you who have volunteered to love us and lift us and watch with us. I am the one to bring you the bad news. Me. I make his death reality. I tell you that he's finally gone. After all you've brought to us this year, what do I bring to you? This. The death you never had to experience. The tears that didn't have to be yours. A pain that didn't have to be shared.   How can I say adequately and simultaneously "I could not have lived this without you" and "I wish you'd never stepped within this painful space"? I'd never choose to hurt you... but you chose to hurt with me. I don't have words for that, but I am grateful. I am changed.  Friends, ...

Well, it’s been a while! Hyrum is still here. He has a few days left, we think. He had a solid week of eating only sherbet (and by eating, I mean letting it melt into his mouth and then painstakingly swallowing it). Yesterday was his last sherbet day. Today he can hardly make a sound. There was a day I just wanted to shout “Just go already!! This is too hard to watch!!” But I asked for a blessing and had a good, sincere prayer with God. I remembered that consecration is not about ME doing more or giving more, (because I could not do more of this)… it is about what God does with what I offer. He is the one that consecrates, not me. I have not done anything more with the days after that, but He has done more with them. He has filled me with more love. More calm. More gratitude. Insight to Hyrum’s jumbled words. Somehow, I am capable of doing the thing I've dreaded the most this whole year: watching Hyrum die.  As I watch him, I've been deeply struck by his tenacity. Hyrum’s been ...

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 chatte...