The Brain Bleed

Here I am, living the Utah life, with raspberries to pick and trampolines to jump and so many wonderful people to be with. The beautiful fall vibes keep me out in random corners of my parents' yard most of the day- on the old wooden bench, talking on the phone with Michael. Laying on the grass, journaling in the sun. Under the apple trees with Caleb, teaching him how to climb. 

Hyrum and Michael are hanging in there. A "fast MRI" revealed that sometime in the last 2-3 days, his tumor/brain started and stopped bleeding for a short period of time. The excess blood is hanging around, waiting to be absorbed again. It's another complication... But we think things are fine?? Hyrum isn't talking or eating much. NG tube is nourishing him for now. But hypothetically with more rest and time to recover from the tumor's inflammation, the blood won't do much more damage than it already has. We think?

I was doing such a good job staying calm about Hyrum's treatment, our family separation, our travel plans (we return to CA on Tuesday). But as soon as I heard about the bleed, so much worry and anxiety and sadness and anger crowded into my mental space. I've been writing it out, talking a little, running some, staying busy, staying outside, making jokes, saying prayers, holding still... But dang, sometimes those feelings are so big. And sometimes they just don't budge.  

Tomorrow and Sunday, there's a really cool (and free lol) Christian conference, broadcast worldwide with messages about faith, family, and hope. It's something my little family attends every six months. In fact, it was the last thing we really did together as a family before Hyrum's diagnosis in April, and it was one of the landmark experiences of Hyrum's life. He shares this experience often, so I'll paraphrase it here, with a little context.

Hyrum is a giver and a learner, so independent, loving, nurturing, and capable. He has deep intrinsic motivation and a keen sense of his role in the world and in our family. As with any young boy, sometimes his intentions outpaced his execution, and he felt that deeply. Last General Conference, we spent the weekend watching 8 hours of prophetic messages on TV, all while stringing cheerio necklaces, building Duplo temples, and playing sticker games. 

At the end of  it all, we gathered at bedtime and I asked the kids "What was one thing that the Holy Ghost told you during the conference?" Hyrum's quiet, thoughtful response was "He told me that I don't have to be right or true." He was joyful, reverent, calm. "So you don't have to be perfect all the time?" "Yeah." "It's okay if we just try our best and let Jesus help us?" "Yeah." 

It's a lesson that took me 19+ years to learn (and still learning), and Hyrum only needed 5. Tonight I sat and asked myself what I'm hoping to feel this weekend. What answers or direction do I hope to receive from God? I'm not with all my family right now... And this time, Hyrum may not be able to hear anything at all. So I guess, just more peace. And I guess, for strength enough to separate my worry from my reality, my fear from my gentle guidance from God. 

Fear is so loud. Tonight it finally dawned on me: I'm worrying myself into an alternate reality (where Hyrum is dying and I'm not there and I'll never hear him speak again) because I'm actually just really sad and disappointed about my actual reality (where I really wanted this to be an easy recovery after the infusion, and it's just not.) Hyrum, we think, is stable right now. I'll see him in four days. If I make my brain and heart hold still, I don't actually think he's going to die this weekend. I don't. But apparently I'd rather stew on that thought than spend 2 or 3 days just being really sad I'm not with him. Today, I let my brain spin instead of letting myself fall, feel, cry. 

I'm trying... But man, it takes so much work to just BE SAD when I know it's not easy for my family to see, and it's not what I really want to feel. When it's awkward to explain and when it requires me to ask for even MORE help. For a snack, a hug, some quiet, someone to just be close... So even though I know it feels better to just be sad than to be worried/angry/anxious/isolated, sometimes I still forget. 

The good news is that God knows how to be sad (Moses 7, ya'll), and He's pretty good at helping out when asked. That is my plan this weekend. Love to you all, in the many places you're at, with the many things you're carrying. Thanks for being on our team.