Emotional Inflation

 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, normal life for a minute. This Friday morning, Hyrum cried and dumped out the airplane activity bag I'd packed for him - he hated everything in it. We still made brownies and walked around the zoo that day, but I watched the tightness creep back into his face. 

All day, he wrestles with a "loud" head, varying energy levels, and irrational emotions. It is WORK for him to engage in semi-normal family interactions. He blows off steam by acting extra silly, or retreating into quiet spaces like Disney+, his art notebook, our 3-week schedule, etc. This time around, we know the drill: In case of anger, drop the details. Do not escalate the situation. Retreat and allow space. Return later with a gesture of good will: an activity invitation, compliment, or a smile and wave. Do not take rejection personally.

Just like that, our normal days are over.

I've spent a lot of time researching clinical trials. Did I ever mention that the Utah trials we originally looked at are probably full? Nothing can really be decided until his end-of-June MRI, but a new feeling came over me this week and I knew that a few phone calls needed to be made. As easy as it would be to drown myself in the endless possibilities and variabilities of picking a trial, I'm surprised to report that hasn't been the case. I'm feeling little whispers of "Search again", or "Enough. That guidance, combined with my conversations with Michael, has led us to a good place. In fact, last night I had a dream in which nothing happened and nothing was said- I just felt a deep, warm, lasting peace about clinical trials. 

Things may not be normal... ever again. But I think they can still be good.