Rory and Carolyn met in seminary, fell in love, and got married. They decided to hold off on starting their own family while they settled into their first jobs in North Dakota. After a few years, they moved to Minnesota, where Rory accepted a job as a minister, and Carolyn enrolled in a hospital chaplain residency program. At the time, they did not know how important the decision to move would be for their future family. When they moved, neither North Dakota nor Minnesota had SMA on their newborn screening panel. It wasn’t until March 2018 that Minnesota adopted and implemented newborn screening for SMA, and then several months later, in 2018, Rory and Carolyn’s only son Edan was born.
The other day, I stumbled across a column I wrote a few months back asking people to stop glorifying being homebound. I’d always get comments about how glamorous it must be to lounge around all winter doing whatever I please, and truthfully it hurt. Many people didn’t understand the havoc that home confinement would have on my mental health, so their comments stung.
Now… we’re all in the same boat! I’ve had so many people reach out for pointers on how to stay sane at home because they didn’t realize just how challenging it was. Somehow knowing I’m not alone in this quarantine this time around is bringing me solace.
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