Kali Weinand’s 1-year-old son Oliver has a rare metabolic disorder that affects how his body processes protein.
So in order to protect him from covid-19, she homeschools her daughter Lily, who also has autism and ADHA, and keeps her two other sons, Jeremiah and Elliot, home as well.
“Definitely a lot more to get in all that she needs in, plus everything else I have to do. So it’s definitely been stressful,” shares Kali Weinand, Hazen mom.
With her husband working, Kalie relies on respite care to help, but finding respite workers is not easy, especially in rural North Dakota and during a pandemic.
“We actually ended up using my mom who works full-time so it’s not super convenient,” says Weinand.
Katynka Morrissette is a Bismarck mom of three who can relate.
All three of her kids, Joey, Medrick and Eleanor have a rare condition that changes the way their bodies use and store glycogen.
With all of the care required with the disease, respite is vital.
“It’s helpful to have respite during those times because we have three of them and still have somebody on hand to run a feeding pump, fluids,” Katynka Morrissette, Bismarck mom explains.
But even with respite, the pandemic has complicated even everyday appointments and therapies.
“You can’t have two people in an appointment anymore and so it was like her sitting in the car with one kid while I ran the first kid into their appointment and swapped out,” says Morrissette.
Both families worry about illness often, but just like the rest of the world, staying home 24/7 is not an option.
Weinand explains, “We can’t just stay home because my vulnerable child needs these medical services and appointments in order to thrive.”
“There were times we had to take very calculated risks and a lot of tears, I cried and cried and cried because we had to go to cleveland in September,” says Morrissette. “And three kids on a plane going to appointments for an entire week, that was nerve wracking.”
And with the need to take those calculated risks, both families were very concerned when the number of available hospital beds was shrinking.
“Kids get sick, even common stomach flu could be deadly to him and it definitely worries me because if he needs a hospital stay even unrelated to covid, it’s like ‘is it going to be available,'” Weinand asks.
And even after taking all possible precautions, Katynka’s family fell ill to covid.
All three of her children were in the hospital at one point in time.
Morrissette, “Just knowing that we did everything we can and if we got covid at that point with how restricted we were then I felt confident knowing that I didn’t intentionally put other people at risk. Watching people go live their normal lives made me remember how privilaged people are to have healthy kids.”
Kali and Katynka both say it boils down to one thing.
“Just show some compassion,” says Weinand. “I’ve heard before ‘you shouldn’t even be going to Target if your kids are vulnerable.’ But we have four little kids, we need a lot of stuff. I have to go out to the store, it’s not possible for me to just stay home and never leave.”
Morrissette suggests, “Be kind to each other because when you say the vulnerable can stay home … at some point, our kid’s mental health also matters.”
Many families have faced a shortage of alcohol swabs, medical gloves, tubing for medical machines and even glucose monitoring strips.
Fortunately, as Katynka shared, much of the special needs community has come together to help one another out whenever possible.
Reporting for KX News in Bismarck, I’m Alysia Huck.