Christmas Star

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 that made these past weeks much more comfortable than times past. A church ice-skating activity that fulfilled Hyrum’s “first dream” and made some serious magic for our whole family. Having amazing helpers and renters in our home. We are being taken care of in so many beautiful ways. 

I also see things happening in us: a greater personal peace in each member of my family. A deeper recognition of God’s goodness and more feelings of all-around gratitude. A greater ability (again, in all of us- even my 2 year old) to just be sad and also be okay. A hugely enlarged family love for each other- one that prompts my children to spontaneously hug and pat and listen and share and play and laugh with each other. They are, at this point, far better, fuller, kinder, and more joyful little people than I could ever have imagined. And Michael and I? Are still carrying a lot… but I am finally learning to live without expectations. And Michael is finally learning to grant space for his personal needs. Quite frankly, I did not think we would EVER be capable of changing those parts of us, nor did I think that God’s way of helping us change would look like this… but here we are.

I guess I’m at peace with the fact that some things just end. Our initial shock at Hyrum’s diagnosis, Emily’s phase of 24-hr “Hooray”s, my 4th pregnancy, Hyrum’s angry days, my young adult perfectionist era, Caleb’s bedtime sobbing about Clara, our carefree Oklahoma life before all this, that one evening flight where all the kids were sick and Emily screamed the whole time… they ended. Eventually, Hyrum’s life will too. Luckily, small-scale endings, in and of themselves, do not interrupt life’s forward flow. My panic about them… yeah, that does. Just ask Michael how I handled Hyrum and Caleb’s transition from the crib to a bed lol

Instead of panicking now at the massive transition looming ahead, I’m finding that the finite nature of our time is teaching me to see today holistically. To treat it with more tenderness. To simply let it be. To love each part, allowing value in each time and space. Looking at our December through those eyes, the fullness and beauty that surround us are as bright and all-encompassing as God’s shining Christmas star.

As for the logistical update, Hyrum has an MRI on Monday that will determine if he qualifies to receive continued treatment here at Stanford. It’s the big “Is it working?” moment and I have no idea what the results will be! But I do know that we fly to Utah on Tuesday for a wonderful holiday. Merry Christmas to all you people that we love!