A *Breakdown* Journal Transcript

It's *relatively* calm moments like these when I forget what this blog is actually about... And wonder why some of you sweet friends are still reading? I don't always have a concrete cancer update to give, and I guess that's alright. I guess if I can put words to some of this strange experience, and if you take the time to read them, it's one way you volunteer to be with me. It's one reminder for me that I'm not alone. And it helps.

That said, this is usually a strange, raw, emotional monologue, and no one actually needs more of that in their lives lol My apologies and gratitude to you brave souls. Below I've included an August 24 transcript from my cheap spiral bound notebook. It's half "summary of an ultra-breakdown" and half "therapeutic musing while I put myself back together". Since breakdown, I'm trying to do the "live gently, feel deeply" phase where I expect less from me, try to talk about the feels, and consciously make sure happy still happens. 

"I haven’t cried like this since diagnosis. Tonight, it all came back: the tingly fingers and toes, hyperventilating, etc. This time I even vomited. Woohooo... I worried this would happen when we came to Utah. That the sentimental places and people and conversations would take the scab off and force me back to the beginning. Here I am.

And what if this is the carousel of my life from now on? Small ups and downs within an ever-evolving cycle in which I am once again shattered and forced to heal? Is that really even healing or just biding time until the next heartbreak? If it was so easy to lose this pulled-back-together shell that I spent 5 months making, how can I ever legitimately be a real person again?
I remember losing pre-DIPG Hyrum. It took a while to let him go. Now I genuinely, deeply love my emotionally explosive, tender, grieving, clinging-to-childhood Hyrum and tonight was brutal reminder that I will lose this one too. I will lose the “I can still walk” Hyrum, and the “I can still talk” Hyrum. In this mess of the advancing disease and the invasive medical procedures we’ve approved to try and stop it, we lose some of him every day. Tonight, he asked me twice what number comes after 8. Michael recently had to reteach him how to spell his name.

So here I sit, drowning in a lifetime of losing Hyrum. I’ve thought about it, and I can’t even ask God to take this cross away from me, because I know what else would go along with it. Take this darkness, and I step away from love, the kind a mother has. Lift this burden, and my presence in these moments is less real. Dull my pain and I prevent my soul from bending it into blinding compassion, patience, and peace. I can’t ask for a pass.
Do you think God can help me heal it better this time? If my obvious option is brute strength, just muscle through, it’s funny to know how many naps and walks and cries and hugs and prayers and snacks it takes to fuel that kind of strength. You’d think this would look more holy, but every day just feels messy.”