We’ve been living our “regular life” this winter. That means home school, doctors’ appointments, trying to get Arabella’s anti-rejection meds, and working to steer clear of illness. Since Thursday, I’ve been reminded that our “regular life” seems foreign to most people.
When the Corona virus surfaced in December, it hit our radar. Arabella has been following the Johns Hopkins’ real-time website since January, routinely watching as the virus developed and moved across mainland China and other parts of Asia. When Japan had only 20 people infected—and we didn’t even know it as COVID-19—we were talking with Make A Wish about the safety of travel to Tokyo.
In mid-February, I was advising Make A Wish about a Tokyo hospital canceling its elective surgeries and outpatient procedures due to an infected doctor and the government asking people to stay indoors and away from each other. A week later, I was notifying them that the CDC had raised its travel advisory level, asking people with chronic illnesses to consider postponing non-essential travel to Japan. Twenty days before our departure, I told Make A Wish to cancel our trip. Our medical team supported this decision.
Just under 3 weeks ago, Make A Wish was telling me that they saw no reason for our trip not to proceed.
Fast forward to this week: I’ve been told that Make A Wish North America has canceled its travel through April. Every Disney theme park in the world is closed. The NBA has suspended its season. We won’t have March Madness. Broadway has gone dark. The Eiffel Tower is closed. Colleges across the country have shuttered their dorms. Kentucky’s governor has asked churches to cancel services, schools to close, and employers to allow people to work at home. And we are reading stories of Italian doctors who have to decide which people to save because their healthcare system is taxed beyond capacity.
Today, while I spent 3 hours on the phone (mostly on hold) with insurance companies and pharmacies, I scrolled through Facebook and Instagram. It was during that time that I realized just how different our lives have become. I toggled between two worlds: one comprised of medical mamas—filled with concern about medications manufactured in China, the need for surgical masks to maintain sterile conditions when changing their children’s dressings, and unease about sending their immunosuppressed warriors to school—and the other that had more than its fair share of folks who wanted to remind me that COVID-19 only affects “old people” and “sick people,” or who were upset about not going on a spring break trip, and even some who say this whole event is a hoax. As I listened to muzak, I read every comment on our church’s decision to not hold in person services, finding many comments petty.
And, again, I realized that we used to live a different life. Just 3+ years ago, I, too, would’ve been disappointed if my plans were canceled or if I didn’t get to watch the University of Kentucky win another national championship. It would’ve broken my heart to miss out on the trip of a lifetime. I can’t say for sure, but I might’ve even picked up an extra 24 pack of toilet paper. But our priorities have changed. I now want to keep Arabella—and Canyon, Zach, Bobby, Zoe, Alyse, Henry, Jackson, Caleb, Keanna, Ashleigh, Michael, Cannon, Grace, Gillian, Takuma, Gavin and Avery (to name a few)—alive. I want to help people understand that these children aren’t statistics…they’re fighting daily to get or keep a transplanted kidney. And they’re counting on their communities to “flatten the curve” to ensure that if they need medical attention, it will be available because the system won’t be overloaded with COVID-19 patients.
So, the odds are good that this week you have been surprised by something—an action taken that you’ve never imagined, your plans upended on short notice, your 401k tanked or your own scrambling for childcare since school is closed on Monday morning. If so, I hope you remember that feeling. I remember when it was a shock, but those circumstances have become routine for us. For the next few weeks, or however long this national quasi-quarantine exists, I hope you stop to think of Arabella and know we appreciate the changes you’re making to help her stay well. And we’ll remember that this is a hard adjustment for you—because we used to have a different life too.
