"I wish I had a blog," I just thought, feeling the urge to type out some big feelings and wonderings, and wanting to click "publish" at the end of it. I journaled almost every day in January, wanting to force some reflection (how's that for an Enneagram 1 phrase?), wanting to retrain myself in slowing down my thinking. It was great. I'm glad I did it. 

And then kind of hilariously, on February 1, after my goal of reflecting on each day was complete, Callaway got sick. We spent two days trying to manage it at home, and ultimately had to go to the ER on Friday night. Now it's Sunday, we're home, and I'm wondering at the coincidence that my mandatory reflection period didn't including a hospital stay, which always brings up a lot. 

So. I remembered we have a CaringBridge, and here I am. REFLECTING. 

Since her June 2021 transplant, Callaway has been hospitalized a handful of times. Twice in late 2021, twice in 2023, and now this last Feb 2-3 stay. These have been relatively minor stays, you guys. One was to observe her after a biopsy; one was to observe her during a common cold; one was for a stomach bug; the next for RSV; and this last one for another stomach bug. 

We are learning that Callaway's body gets upset pretty quickly once she's intaking less hydration due to illness. We take her in for labs, which reveal unhappy kidneys and low sodium levels. Once this begins, it's pretty hard for us to right the ship at home. This time, she couldn't tolerate all the pedialyte we were g-tubing into her belly, and when it all came back up, the liver team said we needed to come in. I think typical kiddos can often get a bolus of IV fluid in the ER and then go home, but that's not really an option for Calla. I think because they want to monitor her electrolytes closely AND we know that prolonged stomach issues causes her anti-rejection med, Tacrolimus, to increase in her body. The fancy term for this is "supratherapeutic," where the levels in her body become higher than what is necessary for the job the med is trying to do. This can turn into toxicity, which causes tremors, acute renal failure, neurological damage, etc. 

As I'm writing this, I'm getting closer to the heart of one of my BIG FEELINGS right now:

Tacro. Tacrolimus. This medicine that we give Callaway every 12 hours keeps her liver happy in her body. It blunts part of the immune system, almost blinding it so that it can't "see" the foreign organ in her body (yup -- it's still foreign, even though it's been in her body for longer than her native liver). This allows her to.... uhm... stay alive. It's the most incredible 1.6 mls of liquid I could ever syringe into her mouth at 8am and 8pm each day. 

AND. 

Tacro is responsible for basically all the health complications we are constantly monitoring.
Calla's eosinophils (a type of white blood cell) are way too high, thanks to Tacro. 
Calla's in mild kidney failure, thanks to Tacro (and methylmalonic acid, to be fair to Tacro).
Calla needs to be admitted to the hospital for some respiratory and gastro viruses, thanks to Tacro. 

If you have never gone through a serious illness with your child, you might have the question, maybe even the tiiiiiiiniest bit of judgment, like.... how can you complain about this medicine? Your daughter literally wouldn't be here without it. Everything from here on out is just icing on the cake.

I know. Trust me, I know. You can't gasp at the audacity of any of my thoughts that I haven't already nailed myself to a cross for. Callaway has been hospitalized 5 times for less than 10 nights total since transplant (if you know her journey, you know this is jaw-dropping in the best of ways). This girl LIVES. She THRIVES. She has gotten to take part in so much of what the world has to offer a 3-year-old and she does it all beaming and singing and RUNNING and tantrum-ing and it's just beautiful beautiful beautiful. And it is still absolutely exhausting. And I still find myself a mere human, wishing it could be better; wishing I didn't have to count protein; wishing I'd never have to put her under anesthesia again; wishing I could send her to the forest school with the disgusting "nature potty" and not think twice about it; wishing someone didn't poke a needle into her arm three times before sundown on Friday; wishing wishing wishing for a world free of pain. 

I lamented into my mom's hug yesterday, "I just want to be better at this. I want to be better than I am. I want to be less anxious by now. I want to accept that this is my lot in life, and hers, and just be. right. where. I. am." And I can be, and I will again, and also some of that acceptance includes getting myself down from the cross. Each time. I love tacro. I fuckin hate tacro. I love my life exactly how it is. I desperately want it to be easier. I believe suffering helps reveal the light. But don't give me this type of suffering to reveal that light. 

I am a body and mind of contradictions. Welcome to the planet, Carina. Make yourself at home. Turns out there's room for all of it. 

I've been exploring Pema Chödrön's teachings around hopelessness. I was really hoping Calla wouldn't have to be hospitalized. But she DID have to be, because it was the safest, best decision for her. So the hope actually caused me some suffering, because I was wanting control over something I didn't ultimately have control over: whether or not her body needed more support than I could give at home.

If I have hope, I also have fear. "As long as there's one, there's always the other. In this world of hope and fear, we always have to change the channel, change the temperature, change the music, because something is getting uneasy, something is getting restless, something is beginning to hurt, and we keep looking for alternatives." She says that "if we're willing to give up hope that insecurity and pain can be exterminated, then we can have the courage to relax with the groundlessness of our situation.... Giving up hope is encouragement to stick with yourself, to make friends with yourself, to not run away from yourself, to return to the bare bones, no matter what's going on." 

I get it. We're human beings. Hope is important. It can be a catalyst to find help, to stay on the planet another day, to create change. But it also can add suffering on top of the pain, and so I'm going to keep trying to abandon hope, and be with what is, including my grief of a 24 hour hospital stay. 

How's that for an update? 

Love,

Carina