One Year Later

Exactly one year ago, I was anxiously watching Sebastian sleep in his hospital bed in the Pediatric ICU after his 4 hour long surgery to remove his tumor and right adrenal gland. If you've had to experience your child having a major surgery, then I'm so sorry and you understand how miserable it is. If you haven't, I sincerely hope you never do. Seeing your kid afterwards is both a huge relief and incredibly scary, to see them when they're hooked up to a million tubes and IVs and pale as a ghost.

Look at that poor kid! Yeah that's right, that's an IV line in his NECK. It was placed there while he was under anesthesia, before they started the operation, in case his heart rate or blood pressure fluctuated too much. This way they could inject medicine into that, which would reach his heart faster and potentially save his life. Thankfully they never needed to use it. But they had to leave that in for a couple days after the surgery as well, just in case. This was a necessary precaution as adrenal surgery can be somewhat dangerous and fluctuations of this sort are pretty common, during and after surgery. It was also why he was on that insanely expensive pre-op medication, to help suppress all the extra adrenal hormones the tumor was producing. It was clearly an uncomfortable place to have a line, and Sebastian was afraid to turn his head very much. It was a huge relief that they never had to use it and when they were able to take it out!

That wasn't actually the most concerning line he had in. He also had an arterial line, which is a thin tube right in the side of the wrist, to give a constant reading of his blood pressure to monitor for any fluctuations. The problem with it was it would alarm anytime he adjusted his arm, even a tiny bit. The first time it happened I almost panicked because it showed his blood pressure was crashing. I not-so-calmly asked the nurse what was going on and she immediately fixed it and took a real blood pressure reading from the cuff that was also always on his arm (for further readings once an hour). I spent that first day constantly adjusting his arm to make the alarm shut off. Eventually we had to strap his arm to a board to make it stay in place. What a pain in the ass, and scary as shit for me the parent having alarms going off all the time.

So that was what I was doing on this day one year ago. Fearing for my child's life every time he wiggled his wrist. I'd of course noticed this anniversary creeping up the last couple of weeks. But it didn't hit me too hard until Sebastian started to bring it up the last couple of days. And then this morning around 8:30am I poked my head in his room to make sure he was on his class Zoom meeting, and he says, "Mom, like right now a year ago I was in surgery huh?!" All the emotions washed over me and all I could manage to say was "yeah buddy, you were."

As I walked away, I took a moment to gather myself before moving on with my day, but there have been a few tears every time I think much about it. Tears of happiness, joy, and gratitude that he is alive and well and cancer-free, of course. But also tears of sadness for the me of one year ago. What I wouldn't give to be able to give that me a big hug and tell her everything was going to be alright. Because that is all I wanted to hear and the one thing no one could tell me with any certainty. It was a lot of "shoulds" and "probablys" and shifty talk like that. 

I get it, there are no guarantees in life. Any of us could step off the curb at the wrong time and get ran over by a bus. Or die from the flu, COVID, or whatever other new disease we manage to create through our disgusting habits. It happens. I know. Life is short and precious. This year has been another brutal reminder of that fact. We've lost two people we knew to COVID this past year, one of Brian's uncles a few months ago. And just last week, a very close family friend of my parents. A wonderful, sweet, amazing woman that I've known my entire life. She recovered from COVID but the pneumonia came back and took her from us. Yes they were both in their 70s and had preexisting conditions, but damnit, that doesn't make their lives any less than the next healthy persons, so their deaths are still a goddamn tragedy.

Okay shitty year rant over, back to gratitude. That's what I keep reminding myself to focus on. Not all the terrible shit that's happened, and still happening, but all that I have to be thankful for, which is this boy right here.

And his amazingly healed scar.

And the rest of my beautiful family. Happy and healthy and excited to move into the house we bought! I'll tell you all the details about that once we're in it and I can share some pictures, but we don't move in until June 1st, and it wasn't listed publicly so I don't have much to share with you at the moment. It's less than 4 miles away, still in Beaverton, and in a great location. It is a similar size to our current place but has a really perfect backyard. We can't wait to get in it and start a new garden.

Sebastian's next check-up scan is April 22nd and his follow-up appointment where we will get results is the next afternoon, so I will write another post after that.

And one last piece of gratitude to mention, which is you, for your love and support. Thank you friend!

Hugs and Love,