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Showing posts from June, 2022

The Real Disneyland

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Our whirlwind travel/party month is coming to a close. WHEW!! What a blessing to have those trips and those memories provided for us. Today was Hyrum's end-of-rest-period MRI, and he did so well. Despite medications that should have left him lethargic and grumpy all day, he had a miraculously happy, normal day today. Tomorrow, we talk with our brain team about the results of the MRI and continue our ongoing discussion about Hyrum's potential clinical trial. Who knew that would take SO much WORK to figure that out?! Plans have changed several times and I'm realizing how many variables apply here. Personal prayers help me regain peace about it, but there are persistent parts of me that just want a plan NOW!  It's one of the gut-deep realizations that I've had many times, in various forms: the things I want most are always partly out of my control. Healthy body. Safe and peaceful home. Safe, happy, healthy family. There's so much involved there that I don't get

Oregon!

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The summary: A perfect, beautiful week. Our life is not the carefree, sunshiney experience that we had last year during our Oregon travels, but Hyrum decided this trip was still better. We still had sick moments, doctor phone calls, cries, and rain, but we had an incredible amount of perfect weather and perfect moments. We did the aquarium, the beach, tide pools, Octonauts, endless strawberries, and a Hillsboro Hops baseball game. (I am falling in love with minor league baseball, ya’ll. Great people, great atmosphere, and chili cheese TATER TOTS. Officially one of the foods I will eat in heaven.) I bought all the Costco frozen foods that I’ve always restrained myself from buying, and my parents did all the dishes. Heavenly. Two of my highlight moments: Cape Kiwanda: It’s a small state park that bookended our beach. Huge driftwood, giant rock jutting out into the sea, and an incredibly large sand dune. Hyrum, being a true son of my indomitable husband, decided to climb the dune, theref

Snapshot of a Grief Moment

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(Italicized portions written June 7, while sitting next to my sleeping Hyrum and looking out at a beautiful beach.) "Oregon! The travel day was beautiful. I’ll write more on that later! It spent all of his energy, though, and today he vomited several times. Low fever. Tired. We watched Spidey together then he fell asleep on the couch. I wanted the quiet time with him, so Michael ceded his spot and let me stay while Hyrum slept. The fam is flying kites on the beach.  I answered a couple messages and caught up on emails. I’ve already studied scripture today… With no obvious task next, my feelings come creeping in. I scroll social media for a while, then take a deep breath and put down my phone.  My mind bounces between various thoughts. Will Hyrum be capable of tide pooling later? Will Disneyland next week be too much? Do we need to travel to Utah sooner so he can say goodbye to people and places? Was there something we should have done yesterday or this morning to make this physica

Emotional Inflation

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 You know that inflation we're all experiencing? Groceries, cars, gas... We Maces are experiencing "memory inflation", in which normal, average moments take on epic emotional proportion, thanks to our ever-present awareness of Hyrum's limited time.  Three weeks ago, I took our three kids to Winco. Everyone was happy. Emily held my phone and pretended to read the list. For his treat, Hyrum picked fresh peaches and Caleb chose chocolate gold coins. They played together with the toys in the checkout aisle. Hyrum loaded food into bags and Caleb pushed the conveyer button. Meanwhile, I took pictures. Hyrum selecting produce, boys sitting together on the floor, all 3 of my kids buckling their car seats. I cried in the car. I wish I didn't have to take pictures of those moments.  Hyrum's last week of radiation and the two that followed were a blissful "post-radiation honeymoon phase". We played. We swam. We laughed. We cried. We lived a (relatively) easy, n