The blood. Two years later

Two years ago today, my teenager spit up a blob of blood in a parking lot. I remember us both standing over it dumbfounded as we stared. It seemed so insignificant at the time. However, it’s changed both of our lives in so many ways, it’s hard to explain the impact to others and have them understand especially since two years later, we find ourselves still a bit confused. 

My daughter is an anomaly. There is not one thing about her that’s standard or normal. Explaining this to countless doctors over the course of two years has made my life not only difficult, but also a little complicated. I’ll give you some examples. First, it’s impossible to spit up blood for two years and have normal blood counts. This we know isn’t true because it’s been 731 days and my kid’s Hematacrit and Hemoglobin are ticking along. She’s got some powerful red blood cells. No one feels pain under anesthesia. Sadly, my redhead does. No one is allergic to lipids. She started to go into anaphylactic shock to prove that wrong. These are just three of the many medical anomalies that leave doctors scratching their heads. 

Earlier this fall, we did get an answer to almost all of my teen’s bizarre health conditions. She has Ehlers-Danlos Syndrome. EDS patients also have migraines, POTS and often have stomach pain, however, my teen’s pain is on the right side and has been for months. That’s an anomaly. So, today we met with our pediatrician for our follow up from our hospital stay and asked to have further tests run since we just had normal imaging. The radiologist mentioned yesterday that you can have a bad gallbladder with a normal ultrasound. He bought in. 

Our pediatrician deals with some pretty sick kids in the NICU and in his practice. The majority of them are hooked up to some kind of medical device. So, he has a good understanding of what it’s like for parents and patients to deal with chronic illness on a daily basis. Today, he asked about school and as I relayed that we had a positive meeting this week I mentioned what do they do when a patient has cancer. He said, “you know. That’s an apples to oranges comparison….but Rosie’s health conditions can be just as debilitating as cancer.” He gets it. We wish more people did. 

It’s been two years since the blood started. There have been too many doctors visits and hospital stays to count. We’re hoping that our neurologist’s recommendations help abate some of the daily symptoms Rosie has. We’re also hoping that there’s a problem with her gallbladder and they can pop that baby out so she doesn’t have abdominal pain and vomit all the time. Since she took out her NJ tube, she’s lost three pounds. The pediatrician wants her to add smoothies made with ice cream to her diet to keep her weight up. So, we’ll try that next.

Two years ago, I decided to start writing about all the intimate details of chronic illness. I wanted to help others who sat with a child like ours that didn’t have a diagnosis. The health care system is incredibly hard to navigate when you have the unknown. So, are our schools. While writing about this journey has been cathartic for me, I feel gratification every time someone emails me to tell me thank you or contacts me to tell me their story. While no one has the same as us, we’re all in a fight for our kids. Invisible illness is a mean bastard that turns your life upside down and often, you don’t know where to turn. I hope that I give others good advice, a little push to fight harder and a little inspiration. 

As for inspiration, I don’t have far to turn if I need a little. My daughter has amazed me the past two years. While there are bad days where she’s mad and feels a little sorry for herself, they don’t happen often. That in itself is an anomaly. She laughs, smiles, talks about going back to school and dance. She dreams of doing all the things the kids her age do and this past weekend did something extraordinary. She was in the Miss Kansas Teen USA pageant. 

It was a hard weekend for her physically but it was a wonderful experience for her emotionally. She met some amazing girls and had the chance to experience all the things an exceptional teen does. She had a blast and it was heartwarming to watch. We need more chances to see her shine like this. She’s already planning to do another pageant in the winter. Good for her. 

We’re closing the door on the past two years. Yes, the blood’s still there but so is the little girl who thought she could conquer the universe so many years ago. She’s proven that she’s not defined by illness or disability. She’s a lovely sight to see and we hope we see a lot more of her this year.