By the skin of our teeth

Happy New Year — late. It’s January 29th and the Thacker Family is functioning. And that is a major win!

It is very easy for me to get bogged down in the day to day medicine alarm reminders, g-tube feeds, sibling fights, homeschool, blood draws, middle of the night cries of pain, toddler viruses, late night work emergencies, dirty laundry, and snotty nosed, chest colds. We got our first virus of the fall right before Thanksgiving and have not been consistently healthy for more than 10 days since. Between Judah’s brain cancer, chemo, pneumonia, and all the GI bugs, colds, and sinus infections we’ve all fought, I’m honestly surprised we made it through the craziness of the holiday season in tact! But we did make it, if by the skin of our teeth.

 

The holidays are always hectic. And I had been ramping myself for them. Building walls to try to protect my tender heart. Because even if you took away all the sickness we had to fight through, we were already looking at a hell of a emotionally trying season. The weight and very real possibility that this would be our last Thanksgiving and Christmas with Judah.

So we made and ate delicious food together. We hiked, worked puzzles, and talked. We played cards, video games, and listened to music. We laughed and cried. We carved out space and memories. I was often caught off guard by how beautifully our families have learned to live in the awkward space that is both completely joyful and completely broken.

 

In Kaitlin Curtice’s book Glory Happening, she says:

We hold hope and despair, one in each area, and we cradle them close to our chest, because they both have something important to say to every moment.

This sentence struck a chord. A great vibrating, knock me off balance, shake some long time stuck thing loose, chord. Because it is truth. Our truth. Hope and despair. The trick, since Judah’s terminal diasgnosis, is to find the sweet spot where they become 2 equal parts of the whole. And it is a careful balance that I fail at more often than not.

I find myself sniping at my children for being children. My husband has become my favorite person to throw senseless jabs at. But he sees me and refuses to let me ‘be’ someone he knows me not to be. With his gentle coaxing and playful poking the darkness that had covered my eyes begins to recede. And suddenly, the problem snaps into focus. Despair has tipped the scales.

Judah has been off chemo for almost a month. He has been on the new MEK inhibitor for just short of 3 weeks. But He isn’t stronger like we’d hoped. He doesn’t have much more energy. His balance is still bad. He cries easily. His body and heart bear the accumulated scars of a life no child should have to live. And he has a host of new side effects from the MEK inhibitor. The gift of hope comes wrapped in the suffocating fog of despair.

Despair exists because. Because Judah’s pain exists. Because he wants to be himself again. Because Camilla Kate and Emmett want their brother to be the brother they remember. Because Matthew and I don’t get to sleep anymore. Because our family is isolated and lonely. Because we never wanted cancer to define Judah or us but it has. Because no matter how hard our friends and family try, they can’t MAKE their kids truly understand that Judah isn’t ‘their’ Judah anymore. They can’t make their kids want to be with Judah. To play with him where and how he can. To be thoughful and kind in word and deed. Because when Judah loses his balance walking on the playground with his friends, it scares them. They are still little kids and they don’t know how, and shouldn’t have to know how, to stay. So a moment of physical weakness turns into extreme embarrassment and despair for Judah. And all the work it took for us to get him to go, to try, to keep working at it goes out the window. They are kids. And this is too hard. For all of us.

How, with all of that, can we possibly bring things back into balance? To tell you the truth, I have no earthly idea. I know that we have to train our eyes to see joy. And we have to be grateful where we can. So in an attempt to rectify the state of my heart, a simple exercise in gratitude.

 

 

We had a beautiful day yesterday and Judah ventured out into it. I got to hug my Mom yesterday. My nephew thought about Judah and how to get him moving in a fun way and told me about it and it worked. Camilla Kate and Emmet have been playing with superhero toys everyday, for hours, instead of watching tv. The reminder alarms on my phone are actually reminding me to do the thing I set the alarm for in the first place. Matthew still reaches for my hand when we are close. One of my sisters has started reading my kids a bedtime story via FaceTime 1x a week and it is an utterly joyful experience. I got a new gas stove. Judah is coming off a bunch of medicines he’s been on for almost a year. My Sonos speakers are magnificent. The snuggles Emmett is giving because he is sick are oh so lovely. Camilla Kate loves art and is forever drawing, painting, and writing cute notes. Classical music played with banjo (Béla Fleck) and mandolin (Chris Thile) is all the things. I adore all of 4 of my sisters and they are my best friends. I got to go walking with a friend recently and it was nourishment to my soul. Matthew is writing music and woodworking again and the products are crazy good. MEK inhibitor protocol has started and Judah’s St. Jude team of Dr’s and Nurse’s are beyond astounding at caring for him and us. Mimi’s (Matthew’s mom) cancer isn’t as bad as we initially thought and she is beginning to get her energy back. It’s almost Spring!

I cried while typing the majority of this blog, feeling so overwhelmed. Halfway through that gratitude list, my spirits were lifted. Gratitude is a powerful thing. Hope and despair have become balanced again.

If you’re the praying type:

  • Judah’s still in pain everyday
  • The MEK side effects lessen
  • That Judah doesn’t get any of the disqualifying side effects that will kick him off the MEK
  • That despair doesn’t win out most days
  • That my kids feel loved and seen
  • Judah gets stronger so he can walk about without falling down
  • Emmett kicks this virus that has had him running a fever for 6 days now
  • Mimi’s lymphoma stays in check
  • Our trip to Memphis in a week goes well and we get great family time
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