Friday, December 20, 2019

How Being Chronically Ill During the Holidays has Taught Me About the Real Meaning to Christmas

I've been posting on facebook for the past couple of years everything that happened on that  certain day when I was in the hospital fighting a deadly spinal fluid staph infection in 2005. I never realized I would still be talking about it 14 years later. But that's when I realized all of the lessons that I learned during that 4 week stay. It's really true that the important lessons you learn in life stay with you always, and as I'm getting older I'm realizing that's true.

If we aren't friends on facebook, let me give you a little bit of background. I had a shunt revision in November of 2005. and I was in the hospital for 3 days, went home, got all my makeup work done, thought things were going great. But then on the 13th of FDecember,  I went from going to school, carrying a 15(let's face it it was probably more 20) lb backpack, to not  being able to stand up straight AT ALL. So my mom took me to the pediatrician. We were still newbies in the neurosurg world, we never thought that oh the shunt drains into the stomach, this is probably a shunt problem. Never crossed our minds, until we were in the ER at Evanston hospital. My mom had been keeping my surgeon's nurse updated, and my mom knew when she was talking to her on the phone and suddenly her demeanor changed, and she said in a somewhat chilling voice, please get her out of there and down here as fast as you can." After 3 hours of pleading with the doctors, I was in an ambulance headed for U of C. You may think that's where the action ends, but oh how wrong you are. When I got there, they were expecting me to have all of the traditional shunt infection symptoms, but I didn't. No elevated white count, no fever, just a stomach ache that wouldn't quit. So they couldn't take me to surgery for no reason. And they didn't want to test my fluid because that could be potentially introducing more infection. And so I'll never forget my doctors words, he said, "well then we will just wait, because if this is an infection, it will make itself known within a couple days of absolutely 0 antibiotics. He was right. 3 days later, screaming and almost going into sepsis, I was rushed to the OR, to get my shunt externalized.

I was then put into the PICU and was put on bed rest. Other than my once daily walk. This probably brings us to about the 17th of December. I was thinking a lot, because there was not much to do when you were on 24 hours a day bed rest, with 1 daily walk. But it was during that once daily walk that my eyes were truly opened. I saw all these rooms with children in them but no adults, and I had my mom with me 24/7; I asked my mom where their parents were, and she said that a lot of them had to work, or maybe they were single parents, etc. That's when I said well we have to pray for them, so they can go home soon and be with their parents soon!

My mom I think knew I would be in the hospital for Christmas, but she chose not to tell me because she knew it would mean breaking to me that I would also be missing my trip to Disneyworld. But I think in my heart I knew. I would indirectly ask my nurses questions that translated into how long will I be here. But when my mom brought in my American Girl doll Christmas Tree, and a bunch of ornaments from  home to decorate my IV pole my heart more or less sank. But I will never forget what my mom said, she looked me in the eyes and said, "this will be the best Christmas of your entire life." Looking back on it I know 100% I probably rolled my eyes, but in hindsight it was the best Christmas of my entire life. As you get older, you realize Christmas is less about what you will be getting, and more about who you are spending it with. My family was with me, no I wasn't home, but I was in a place where I would get better, with all the best minds I could find on my case.

So fast forward to 14 years later. How have my holidays changed? My holidays for the past 13 years have been spent at home which I'm so grateful for. But that doesn't mean by any stretch of the imagination that I forgot what happened in room 428-C in 2005. I have learned that the real magic to Christmas, isn't what's under the tree Christmas morning, it's who's around you, every other day of the year. I have also learned that health isn't an automatic, but a gift to be cherished. I'll never be considered healthy again, so now my view of health has changed, I've redefined what health is, because that's what you have to do when you're chronic. Merry Christmas everybody. And always remember the kids in Comer on December 25. I know I will. Because I was one of them.