It surprised me how difficult this Thanksgiving weekend was for me. I thought I’d feel this overwhelming gratefulness. That our house didn’t burn down in the awful fires impacting so many in California. That Thea is doing well with her treatment. That her leukemia is so treatable. That we live in the Bay Area 10 minutes from some of the nation’s best hospitals. That I’m not working this year. That we have the most amazing, frankly humbling support network of family friends. I know these things and more. I feel them every day. But somehow this holiday was different for me. I don’t know if it’s that I so badly wanted to be there for my sister who just delivered twins a few days ago, or that I feel homesick not being near extended family on such a tradition-filled holiday, but deep down I know it’s something else.
It’s shameful to say it out loud because it’s just so ungrateful, but here goes - I mostly don’t like this new life. And not everything is going that great with it. Maybe that’s the least surprising statement ever, but it’s still hard to admit. There are still plenty of bright moments, plenty of facebook-post-worthy nuggets, but that’s not the whole story. Forgive me if you are a rose-colored glasses type person, but I’m going to try to elaborate. TLDR: the day has a hundred moments and 85 of them are hard. Feel free to skip ahead to the section where I write about the 15 smiley faced ones.
Siggy is having a very, very hard time with this new life. I never thought I’d be most concerned with her, but that’s where we’re at. Her threenager self has at least one significant tantrum a day and it breaks my heart because they’re over absolutely nothing and it’s so painfully clear that she just desperately needs to work out a lot of frustration and anger. And wow, does she. They can last over an hour and my patience is gone after twenty minutes. During one, she rubbed her feet together so much that they bled.
The relationship between my girls was something that previously cheered me. It was so heart-melting how they played together. But at the time, I didn’t realize that was because playing together was novel; Thea was at the hospital separate from Siggy so they were mostly apart. Fast forward two weeks spent together and you guessed it, they can barely play for five minutes without a disagreement. This is no different for most siblings I’m sure, but the special sauce here is Thea’s volatility. All those steroids made her violent at times. Some of those behaviors faded but some remain. I’m guessing it's because even without steroids, it’s still pretty hard to be her. Siggy has adopted all of those new behavioral gems herself. A disagreement has gone from something we could work out together to something that could be dangerous to either of them. Scratches, kicks, spitting, and eye gouging now propel me flying across the room to intervene all day long. Watching their relationship deteriorate is draining.
The emotional detritus of our home are the articulate, heartbreaking comments from both of them.
“I just want to go back to Siggy’s birthday when I didn’t have leukemia. I hate being sick and it’s not fair.”
“I don’t like that you go to the hothpital with Thea and leave me. I don’t want other grown-ups taking care of me.”
People ask me all the time how Thea’s doing and oddly it’s a hard question to answer. I mean, she’s doing great in the eyes of medicine. Her body is responding as it should to treatment. I take comfort in that and have made it a mantra, but it’s not the whole story. Obviously these are powerful drugs and there are side effects. Consider the instant switch from Dex to 6MP. Shockingly, Thea went from someone eating 8 meals a day to someone who we argue with and threaten and beg to eat anything. The drop-off is dramatic. She ate ~300 calories today. She has odd aches, pains, and problems all day, every day. It could be as simple as frustration over turning off a show* or as serious as a fever. Her way of expressing these is to groan, shriek, or yell and it sounds horrible. I am biologically compelled to respond to those sounds. For the life of me, I can’t stop my heart from pounding every time. After weeks of this, my nerves are shot and my patience fried. In these moments I can’t bear to imagine the months ahead.
*Please imagine a nimble wild animal crawling up your chest, winding up a clawed hand to strike at your eye, and shrieking their primal scream inches from your horrified face. This is not what it’s really like, but yes, sweetie, it is time to stop watching Chuggington.
Time to Turn this Post Around Already
I can’t imagine the months ahead. So basically — I don’t. That’s my strategy. I don’t think about the future. I stick to whatever needs to be planned for the next week - which is really going to make SFUSD school selection a lot easier. Right now that means some great stuff to look forward to. We have a new nanny starting Tuesday to help with Siggy. We are in a time of healthy-ish blood counts where Thea can theoretically eat anything and have lots of playdates. Thanksgiving at the Cauthens’ was delicious and... without consequence. ⬅️ English provides three tools of punctuation to end a sentence and all would work here.
When the days are hard and/or long, I do reach into the memory vault and think about the good moments I’ve filed away. Even with all the challenges, the day always has its bright spots. The joy of watching the girls decorate our Christmas tree... the look on Thea’s face when a friend is about to arrive... the way Thea is currently the only one who can jolt Siggy out of a marathon tantrum with a cup of water and lovey in hand... realizing it’s 5pm and I can respectably open a bottle of wine... realizing it’s 4:30pm and I can respectably open a bottle of wine….hmmm…. and the quieter moments when Thea cups my cheeks and tells me what a great job I’m doing taking care of her or Siggy asks for a hug and gives me a long one, koala-style. When Siggy puts entire marketing departments to shame and coins the term “hanitizer.” Perhaps most stand-out, the cute bonding with Daddy.
He’s always been the more fun parent, the one with the out-of-the-box ideas, the one that elicits the deepest belly laughs. And now, it’s so weird and unfair and surprising and beautiful how this leukemia, of all things, highlights these superpowers anew, making me bubble over with gratefulness for the way he can turn Thea’s mood and lift up a room.
When he wears a nighttime pull-up diaper on his head to normalize that Thea needs to regress to wearing one in the hospital.
When he takes her to his office on the weekend so they can just color together for hours.
When he and Thea spend hours working on their “magic tricks” and Thea proudly debuts them.
When we meet our new care team at UCSF and rather than withdrawing, Thea whispers to me in a conspiratorial voice, “I’m going to tell the doctor that Daddy pulls on my toes” and I realize Jeff has invented some random story with Thea so she feels like she has something to say in this moment.
When he hides in the bathroom 1000 times so he can be the bear in Thea’s nonstop game of Going on a Bear Hunt and she falls apart with laughter every. Single. Time.
When he inconspicuously teaches her advanced math skills by memorizing a how-much-I-love-you escalating call and response that ends in “infinity squared.” There is nothing cuter than her saying “I love you a googolplex.”
When he dons a too-small tutu, princess dress, tiara, etc. And intentionally knocks into furniture with “graceful” ballerina moves.
It’s not just him. Thea herself is lifting my moods with her unique essence, an essence that cancer’s been unable to obscure. Nothing makes her happier than planning someone else’s joy.
She’s poking at Santa’s backstory with her skeptical mind but is meanwhile eager to figure out what I might like for the holidays. Her preferred method is asking Daddy sideways questions about my interests when shopping for staples with him.
Daddy was indoors so much in the last month he taught himself to solve a Rubik’s cube. Thea is planning to bedazzle him a special box for his $7 cube.
Whether you are 4 or 40, if you enter our home, Thea will race down to her room and grab her ceramic shoe. This shoe contains her “treasures”. For visiting, you will be invited to pick an item from its depths to take home. For the lucky it may yield a tiny hatchimal or plastic gem. For the unlucky, a corroded 1983 penny or a standard paper clip.
Have you seen, spoken, or virtually convened with Thea in any way over the last 5 years? If yes, she has probably discussed her plan for your holiday card. Certainly only 10% are actually produced, but this roughly mirrors Daddy’s idea to output ratio.
I’ve come to realize the wonderful videos you keep sending are her second favorite source of joy in the hospital. Her favorite is planning gifts for others. We learned this when my former administrative assistants came to the hospital with 12 tiny jars of jam for her to give away to the hospital staff. And poof! A formerly scowling Thea was now giddy when staff entered the room. It was magic.
Now that it’s holiday time, it couldn’t be more fitting. This is a time we often think of others - gifts for those close to us and giving to those less fortunate. In Judaism this concept is called Tikkun Olam - fixing the world by improving upon it. For the holidays, if you contemplate a gift for Thea, consider how you can empower her to live in her highest joy, creating special moments for others.