RUSSELLVILLE, Ark. (AP) — When the Johnsons adopted Estie, they didn’t expect the baby to live.
One lung had collapsed, and she needed a tracheotomy. Doctors said to go on with the procedure would mean the child would only be able to move her eyes, would lead a life that wasn’t worth living.
“And we said, ‘No, we’ll make her quality of life,'” Lori Johnson said, raising her voice over the sounds of Estie, now 16, plunking away at the piano keys and singing in a clear, soprano tone.
She was practicing for her Christmas choir concert at Russellville High School.
Most Read Nation & World Stories
- 8 bombshells from Cassidy Hutchinson’s testimony at Jan. 6 hearing
- Men rush to get vasectomies after Roe ruling
- One woman dominated a local fair's food contest. The internet went looking for her
- Texas thrusts itself into the center of battles over personal freedom
- Cruz takes a shot at Elmo the muppet over getting a COVID vaccine
Estie, who gets her sustenance through a feeding pump stored in a zebra-printed bag hanging on the back of her wheelchair, said even though she wouldn’t be able to eat her family’s Thanksgiving Day feast, she was excited for all her brothers and sisters to be home.
The Arkansas Democrat-Gazette reports that Lori and Willie Johnson, Estie’s parents, have 32 children. They adopted 28, all of whom have special needs. Today, 17 children still live with the Johnsons. Most of their children’s disabilities are physical.
The most recent adoption was finalized in February for little Samuel (who has the same name as one of his older brothers).
They started adopting children in 1980, after moving from Minnesota to Arkansas with their three biological children. Lori spotted a boy in a wheelchair in a newspaper article about “Wednesday’s Child,” a program that encourages the adoption of children with special needs.
“I said, ‘Oh, I want him,'” Lori said. “And so we looked at it and talked about how you go through the home study process, and we called the Department of Human Services and started our home study.”
The Johnsons were not selected to adopt the boy from the article, but they did get Daniel, a 1-year-old with autism and other developmental disorders.
Daniel proved to be a challenge because he was physically aggressive. He became too dangerous to be around their other children, and when he was 11, they moved him to a care facility more equipped to deal with his behavioral problems.
Despite the difficulties with Daniel, they decided to adopt again.
“It’s a passion,” Lori said. “You see a need, and you know you can fill it. It’s a lifestyle. It turns into a lifestyle.”
Willie said the lifestyle was something he was familiar with — when he was growing up, his family adopted two children from a Japanese orphanage who each had one black parent. That was in Morrilton in 1957, the same year Little Rock Central High School first opened its doors to black students.
“Nobody said anything,” Willie said. “My mom just said, ‘We’ve got two other kids to put in school.'”
His experience of adoption made the concept seem like a normal part of life to him, he said.
Lori finds the kids, usually through adoption agencies, and then they make the decision about whether that particular child will fit into their family.
“Once we adopt a child, it’s like ‘How would we be without this child?'” he said as he laid out the bread to make grilled-cheese sandwiches for lunch.
Cooking is Willie’s job, and it usually doesn’t take too long. They stick to simple meals and, like Estie, seven of the kids are on feeding pumps.
Estie said she likes growing up with so many siblings, likes the noise and bustle of living with lots of other people.
Several of her siblings have grown up and moved out, although they often come to visit.
Kyle, the second child they adopted, lives just around the corner with caretakers. Kyle likes to go to the movies and comes home on the weekends. He is quadriplegic and has cerebral palsy, Lori said.
“After Daniel being so difficult, to get Kyle, who was so loving and the smile just lit up a room. … It kind of restored our faith,” she said.
Daniel is one of five Johnson children who is nonverbal. Some communicate using a device.
Zeke, their nonverbal 10-year-old, sat in the next room, watching TV with his nurse. He has a tracheotomy covered in yellow cloth and is about 2 1/2 feet tall. He communicates using hand gestures, Lori said.
“We know what he’s saying,” she said, smiling at her son.
There are helpers who come in to spend time with the Johnson children. One who likes art is going to paint the wooden ramp in their backyard with graffiti.
The ramp is used as a slide and lets the kids slide down on their scooters, bikes, skateboards or wheelchairs. Little Samuel likes to get out of his wheelchair and army-crawl up the ramp.
“Mom, are you watching?” he crowed before pulling himself onto a scooter and propelling himself down the other side.
Samuel’s spine never grew to the full length, and his legs sit useless in the wheelchair beneath him, Lori explained, as he rolled himself back inside after having a spat with one of his brothers about who got to play with one of their toys.
“The thing is, each child really needs something, and we’re able to give it to them,” Willie said of Samuel’s adoption.
The Johnson household is equipped with easily accessible showers, bunk beds with stairs instead of ladders, and a wheelchair lift that goes up the stairs. The lift is broken, though, so the kids have to crawl upstairs, Lori said, before nudging aside their cat, Luna, who is deaf.
Learning about the kids’ medical needs took some adjusting. Lori used to be a midwife and had some medical background, but she said doing procedures on her own children was different.
“We call it ‘bagging,’ and it would be rescue breathing,” she said. “I remember I was so scared that I would have to do that on a baby that I delivered, and then here that was an everyday thing for Estie.”
The medical equipment for all the kids can get expensive, although many of them have Medicaid waivers, and government assistance helps, Lori said.
Estie, who is now more medically stable, wants to be a motivational speaker when she grows up.
“I would tell them that sometimes you’ll have to go through a lot of hard times in your life, but then it brings a good outcome after,” she said.
The family has experienced its share of hard times. Two of their children and two grandchildren have died from medical complications.
One, a biological child, died in 2012 from a heart defect. Rachel was 35, and she left her parents with guardianship of two of her four children — Ian and Conneth. The other two went to live with their father.
“They say time heals, but it really doesn’t. You just live each day until you can live again,” Lori wrote in an account of their journey through adoption.
The other child who died was an adopted boy named Emmanuel. He died in 2009 at 4 years old. He caught a virus that was going around the house, and he never recovered, Lori said.
He was one of three children who were on oxygen at the time, but he developed pneumonia from the virus and spent several weeks in the hospital before he died.
“In the evening at bedtime I would, one by one, carry the little ones upstairs to their beds,” Lori wrote. “Because Emmanuel was so quiet and not demanding, he was always last. I would pick him up and tickle him and he would giggle, then I would tell him, ‘I saved the best for the last.'”
Lori said that although the kids are generally healthier now, the loss of a child is something she knows they might face again.
“I mean that’s something that nobody wants to go through, and we have kids that may have a short lifespan,” Lori said. “We don’t know. We hope to keep them alive as long as we can, but we know that we may be facing that again at some point.”
They make sure to celebrate every birthday, sometimes more than one at a time. Nov. 24, they loaded all the kids into vans to go to the roller skating rink for three birthdays, Lori said.
They also try to take the kids on trips every once in a while. When Make-a-Wish Foundation gave Estie and her family a trip to Disney World, between clothing and medical equipment, they had 32 pieces of luggage to manage.
Most trips are divided into boys’ and girls’ trips, Lori said. She and Willie occasionally take trips without children, although their alone time is usually spent sipping coffee together at 5 a.m. before the time comes to start getting the kids up and ready for school.
Some of the kids take the bus, although Grace, who is earning a biology degree at Arkansas Tech University, needs to be driven to and from class every day.
They are working on teaching her to drive using a car with hand controls. Grace has spina bifida, a birth defect that causes the spine to stop developing, and she uses a wheelchair. She wants to work in the medical field someday, Lori said.
A few of their children have gone on to live alone and have gotten jobs, but Lori said she and Willie are happy with the small victories; they just want their kids to grow up to be good people.
“We don’t expect a lot from them,” she said. “We try to see what they’re good at and promote that, but our expectations aren’t that high because we have kids that are really, really low-functioning and if they recognize us, we’re happy.”
Information from: Arkansas Democrat-Gazette, http://www.arkansasonline.com