Cancer, Coping, and the Every-Day Maces

Today is Christmas!! It's been a beautiful week leading up to today, and the actual 25th was no exception. Here is an excerpt from tonight's journal entry: "I’m trying to give some time to the emotions I was feeling this afternoon. And just process the weekend and all that occurred. Here’s the first thing I have words for: this afternoon was far from our first occasion to open gifts. Days ago, we exchanged with the Oldroyds. Had Caleb’s birthday with the Maces. Received several thoughtful gifts from friends. Today, we opened morning gifts from Santa. And then, this afternoon, we pulled out two LARGE boxes that were generously shipped to us from another DIPG family/charitable organization. The kids opened gift after gift, squealing and bouncing, itching to play, itching to unwrap one more. The quantity and quality of gifts was astounding. My Santa planning has never been so extensive or on-brand- just ask Emily and her 5 new Bluey toys (which she is THRILLED about.) But the...

For once in my young-mom life, I think I’m aware what month and year it is. Yay? Not because I’ve been more dutiful in my calendaring, but because this time has been an arbitrary benchmark in my brain since April 4. DIPG has a traditional “9 months to live” timeline, so if we’re counting (but who’s counting?) this is it, folks.   I watch him carefully and check his breathing every night, but I’m not agonizing over what’s coming. When I say I’m aware of time, I don’t mean I’m fixated on the limited amount we have left (whatever that amount ends up being.) Rather, I’m deeply aware of what’s happening IN and FOR our family right now. I see things happening for us: beautiful Christmas gestures from neighbors, family, anonymous friends. Abnormal treatment timing, because of Hyrum’s brain bleed, that allowed us to be with family for Thanksgiving, Hyrum’s birthday, Caleb’s birthday, and Christmas. I see the miracle of a last-minute opening in a bigger room at the Ronald McDonald house tha...