Many people have asked how our family’s been doing during this coronavirus scare. We’ve been doing very well. In some ways, our life isn’t much different. Some things are more difficult — Callie’s going stir crazy because she loves going places. But life is also easier — because we can’t go places. 

Going anywhere with Callie takes tremendous physical effort and mental planning. Not long before the shelter-in-place order, Nathan stayed home from our Wednesday night church dinner and classes a couple of times so he could get some work done. It took me and all three of our boys to survive those three hours. 

Our two older boys unloaded a special activity chair (about 75 pounds) from the back of our van and rolled/carried it downstairs to the church dining area while Peter helped me carry some equipment (about 25 pounds) and I pushed Callie in her stroller (one she uses for riding in the car) with another 25 pounds of equipment on it. 

Callie and Peter attend a class after the meal which meant it was time for more logistical adventures. The boys helped carry equipment as I pushed Callie in her activity chair. There’s a door at the top of the wheelchair lift that connects to the next building where Callie’s class is located. Since that door was locked, one of our teenagers ran around the long way to unlock it from the other side. The boys then went to their youth group as I got Callie settled in for her class.

After class I read a “Warriors” book to Peter and Callie while we waited for the older boys’ youth group to finish so they could help get us all home. They carried her activity chair and equipment downstairs while I carried Callie and put her back in her stroller. The boys put the activity chair in the very back of the van while I lowered the ramp and pushed Callie in. We strapped her chair down and then drove the one mile to our house and did everything again in reverse. This is why Nathan and I say that if someone spent a day in our life they would never wonder why we were late to anything. 

Being home so much has given us a break from this hectic brand of normal. But Callie misses going to school, even as she and Peter have enjoyed the extra time together. They have evolved into what they call their “morning routine” — watching “Little House on the Prairie” during breakfast; playing Minecraft; having a snack; getting some schoolwork done. That’s followed by lunch while watching a movie and then a little schoolwork if we’re feeling extra motivated, then time playing outside. 

Callie can still use her power chair for brief periods of time, and she thoroughly enjoys it. Nathan always has to be the one to take her outside because she’s a daredevil and it causes me major anxiety. I prefer to sit inside and pretend I don’t know she’s flying down the street. 

In some ways, special needs parents are already set up for coronavirus living: Parents don’t have much of a life of their own; health is not a guarantee and your entire life is suddenly dictated by a disease you can’t control; flexibility and innovation are essential. I think many people are getting an inadvertent glance into a special needs kind of life.

How do you make a good life when everything is so limited? You figure it out through trial and error.

How do you enjoy the day when you have no time to yourself, deadlines to meet, people to feed, errands to run (when you can’t take everyone with you but you also can’t leave them at home) and wondering if every little sniffle could be deadly? You learn what actually matters in life and let go of the rest. 

How do you hold down a job at home while also being a full-time caregiver? You mix work and caregiving together (as Nathan does) and do them simultaneously, around the clock, at least 16 hours a day, six days a week.

How do you find your way back to normal? You realize that “normal” has changed and you have to move forward even though you’re still trying to get your bearings. 

How do you know what to do when everyone has an opinion and what one doctor says is the exact opposite of what a different doctor says? You make your decisions out of love, trusting you’re doing the best you can with the information you have.

This is how our family has lived for over a decade. It’s exhausting, painful, overwhelming, and stressful. But it’s also possible. And somehow, it’s better than we thought it ever could be.