On April 16, 2009, we celebrated our daughter’s first birthday with a ladybug cake. A few days later, her pediatrician called, explaining that her hemoglobin levels came back “dangerously low” from a routine well-child check. He told us to pack a bag and head to Wichita to the hospital.
By the time we were dismissed from that first stay, our daughter had more experience with needles than I have in my lifetime. She also had her first blood transfusion. After that came 18 months of testing, specialist after specialist, all trying to figure out the cause of her abnormal blood count.
Then, an answer! Hereditary spherocytosis. Nevermind there isn’t any family history of this disease, at least we had a game plan that wouldn’t include a bone marrow test. In short, our daughter’s red blood cells are shaped like a sphere instead of a donut and don’t maneuver well through the spleen. The spleen treats the cells as an invasion and kills them. The solution was to remove our 2-year-old’s spleen.
At the time, the general recommendation for a splenectomy with children was to wait until the child was 5, because by then the rest of the immune system would be fully developed. In our daughter’s case, the hematologist did not feel we could wait, as her case was severe. We scheduled the surgery. It was successful and she recovered well, though without a mature immune system, she was hospitalized multiple times with viruses following the surgery for precautionary measures. She has not been hospitalized for almost seven years.
As parents, husband Brad and I have relaxed our guard a bit, knowing that her immune system, while incomplete, is now fully mature and capable of fighting most infections. Until COVID-19. Without data to go on, we have no idea how her compromised immune system will handle this virus. We’re once again flying blind. It feels a little surreal to step back into a world that just a week ago, we felt removed from. We’re working closely with her pediatrician and the school district to make good decisions for her safety.
And she’s not the only one in our family with elevated risk factors. In the last year, my mom was diagnosed with cancer, treated with chemotherapy, had surgery and then continued with “low-dose” chemo. Her body and immune system are weakened. Brad’s grandma is in her 80s. My grandpa is in his 90s. I could go on, but I think you get the idea.
I’m sure when we stop to think, we all know people who stand to be hit hard by this virus. We all have faces we can think of, people with names, livelihoods, families. Maybe you’re in the high-risk category, and you’re scared. Please know, you aren’t forgotten.
I’ve seen and heard enough around the internet to know that there will be people who scoff at what I just wrote. In that case, I’m not sure if there is anything I can say to sway the opinion that this outbreak is fake, that it is blown out of proportion, that it doesn’t matter.
But our family doesn’t have the luxury of being flippant. Many others don’t either.
I know things feel crazy right now.
For one, I can’t explain the lack of toilet paper. And let me tell you, as a family of five, the end of our supply is coming. Some of y’all might need to share.
And I realize how disappointing all the cancellations have been. I don’t want to make light of that. I feel sad for the Hillsboro High School boys basketball team, that its season ended prematurely. You guys played an awesome first round at state. This community is proud of you, and that includes our family. We are so sorry.
Our family has tickets to see TobyMac in concert next weekend. The kids have been excited. Now we will wait until mid-August to try again.
Friends had to decide whether to continue with an out-of-state spring break trip, whether to attend a wedding, whether to go to church or even the store. These decisions are hard.
It’s OK to feel sad about these things, angry even, because it truly is disappointing. However, it is possible to feel these emotions while all the while having compassion. It doesn’t have to be one way or the other.
Consider this: just recently three out of five in our family had influenza. It was miserable. None of us knew we were getting sick until it hit. As it stands, we were contagious a full 24-hours before we had any symptoms, and we exposed people. They got sick, too. That’s how a virus spreads. People don’t mean to spread it. But sometimes you don’t know you’re sick until it’s too late. That’s why cancellations and public-distancing are helpful, even though it is disappointing. Even when it seems extreme.
As a community, I hope we won’t panic and I hope we won’t bury our collective heads in the sand. These precautions are wise, even if it feels like an overreaction. And I’m fairly sure we can all think of at least one face that’s worth looking foolish for, right? Let’s start there.