To see their son Mark in the flesh — and not from the flat screens of their phones — the Millers had to go incognito.
Sharon Miller donned a white bunny costume and painted on a nose and whiskers. Husband Max drove the getaway vehicle, a Buick with a moon roof. The bunny popped out of that and cheerily, but quickly to avoid being outed, waved to five men outside a group home for people with disabilities. One of those five was Mark, who is 34 and has, in general, the comprehension of a preschooler.
The scene was a poor substitute for being able to run up to Mark’s wheelchair and give him a hug, tell him knock-knock jokes and watch him light up with his characteristic 1,000-watt smile.
But this is life in the novel coronavirus era. Safety means one of the last places of comfort — loving human touch from immediate family — is out for many, including people like Mark who live apart from their parents.
Max and Sharon Miller, both 62, present too big a health risk to their son, his housemates at Mosaic and the staff members who care for them. Mosaic, like a lot of facilities, had to say no visitors. If his parents came at all, they would have to do so outdoors and at a safe social distance from their son.
It would be too hard to explain that to Mark. And because Mark needs consistency, the Millers have made the difficult but, they feel, necessary decision to keep their visits virtual for now — or through a surreptitious drive-by.
“It would be too upsetting for him,” said Sharon, a retired elementary school teacher. “We didn’t want to scare him. We didn’t want him to wonder what’s going on. We’re trying to keep things as normal with him as possible.”
We are now seven weeks into social distance practices that have separated grandparents from grandchildren, nursing home residents from visitors, ICU patients from loved ones and new babies from the aunts-uncles-cousins-neighbors-friends parade.
Human contact with the people we love but don’t live with is one of the hardest things the coronavirus has taken from us. Typically in a crisis, we at least have each other. This still-evolving crisis steals even that, placing households in isolation in order to contain community spread and keep people as healthy as possible and hospitals as able as possible to provide lifesaving care.
Many have developed workarounds: front-yard happy hours with lawn chairs spaced out. Backyard visits, from a distance. Drive-by birthday parties with honking horns. Signs held up in the window. And, of course, screens.
The ability to visit Mark through FaceTime is one saving grace right now for the Millers. They can interact safely and in a way that is familiar. Mark, who has lived apart from his folks for the last 14 years, is used to using the app during their winters in Texas when they travel to see Mark’s sister. Mark is used to his dad calling from the cab of his tractor, which they do in planting season.
But as this grinds on, the Millers wish that they could just do what any parent can in a scary time: hug their child.
Mark was born healthy but started suffering seizures when he was about six months old. Doctors couldn’t do anything to control his seizures, which kept getting longer. When he was 10½ months, he had a fever and a seizure that was so bad he had to be taken by helicopter from York, near where the family lived and still farms, to Omaha.
His brain had sustained damage, and Mark suffered developmental delays, putting him on the trajectory that resulted in his challenges in comprehension today. The injury did not take Mark’s infectious smile, his penchant for jokes nor his ability to bring joy.
He can’t verbalize his thoughts, but he is expressive, and his family and caregivers can understand his wants. But would that happen in a hospital emergency room if Mark were to suffer serious symptoms of the coronavirus?
“It’s why we moved to Omaha — to go to appointments,” Sharon said. “I can say, ‘This is what Mark’s trying to tell you. This is how Mark shows pain. This is how Mark is telling you he’s happy.’ People who can’t express that, if they get sick with this, it’s the concern you have as a parent. Will your child be treated the same as everyone else?”
The virus forced Sharon and Max, both healthy, to recognize that their age puts them at higher risk. They updated their wills. And they found resources online through the Nebraska Department of Health and Human Services to use if an emergency happened.
Mark has lived outside his family home since he turned 21, the age at which federally mandated educational services end. For about 10 years, he lived in Axtell, Nebraska, in a facility formerly known as Bethphage. It merged with another Nebraska facility for people with disabilities and, with locations throughout Nebraska and the U.S., is called Mosaic. Mosaic is headquartered in Omaha.
He got very sick in the winter of 2016 and 2017, so sick that he again had to be flown on a medical helicopter, this time to Lincoln, where he was hospitalized for 70 days. He recovered, and when Mosaic had an opening in a facility in Omaha, his family moved him there.
By then, his two siblings were launched — a brother in Los Angeles, his sister in suburban Houston. His mother had already retired. His folks sold the family home in Geneva while keeping the farmland. The Millers bought a townhouse in Omaha to be near Mark, who lives in a specialty house that provides a higher level of care than he had been getting before. Mark doesn’t require breathing assistance. He eats a special diet but has a stomach tube for his anti-seizure medication.
The Millers are used to visiting several days a week and would do it more but had been trying to give Mark his space and balance his needs “as a young man,” his mother said. Before coronavirus, the Mosaic staff would take Mark and his housemates to the movies or other outings.
“We’ve always tried to respect that Mark has his own life,” Sharon said.
She likes to come during lunch and read him books. She can’t say enough good things about the setup, about the caregivers or about her son and feels, despite the challenge of not being with Mark right now, that the family is lucky. Mark’s in a small facility. He gets good care.
Still, the separation is hard. Sharon and Max had been in Houston visiting their daughter and her family since Dec. 15, although they flew home for eight days in January to see Mark. They returned to Omaha on March 15.
Normally, they would have gone straight to see their son. But the couple had driven through four states and realized that all the stops made them too exposed. They self-quarantined for 14 days.
“We didn’t want to carry anything into his home,” Sharon said.
By the time their quarantine was over, Mosaic was saying no to visitors. The Millers thought about socially distanced ways to still see Mark: Visit, but stay outside. Read to him, but from a distance. But that would have been hard for Mark. He’s physical, and the family is “huggy.” Instead, the best way to have a normal routine was FaceTime.
“FaceTime was his normal,” Sharon said. “That’s what we continued to do.”
It doesn’t make it easy. Which is why Sharon came up with her costume idea.
On Good Friday, when the weather was better than it was forecast for frigid Easter, she put on the costume and face paint. She FaceTimed with her grandchildren in Texas, then hopped in the Buick Encore. Max drove. They had made arrangements with the Mosaic staff to have the men outside for a surprise visit. They were pretty far away from the street, and the Millers gambled that Mark wouldn’t know them.
“He did look a little questioning when I said, ‘Happy Easter,’ ” Sharon said. “So then I just waved and blew kisses.”