Lori Johnson surveyed the concerned eyes of doctors seated around her. An intimidating experience to be certain, this midwife with a high school education knew she could not give up. Her six-month-old daughter’s life lay in the balance.
She knew when she started the process of adopting this Chinese baby that something was terribly wrong. No one could say for certain the baby would live. The infant had no muscle tone, and her breathing was irregular. One night she aspirated on her milk and her lungs collapsed. Lori rushed her to the emergency room and the hospital admitted her immediately.
During the next three months and multiple trips to the hospital, the baby was placed on a ventilator twice. Test results made it clear that for the baby to survive she must have a tracheostomy and remain on a ventilator indefinitely.
One physician began talking to Lori about the baby’s quality of life. Even in the unlikely event the infant lived into her teens, he asked Lori, “What kind of life would that be?”
But Lori knew in her momma’s heart that she couldn’t give up on baby Estie. “Every person has value and deserves life!”
A Passion Stirring
Advocating on behalf of special needs children has become the fire in Lori’s blood over the last three decades. Having adopted 28 children – plus raising four biological children – Lori and her husband Willie have poured their lives into giving hope to the hopeless and voice to the voiceless.
Lori and Willie didn’t begin their marriage with plans to raise almost three dozen children. Early in their marriage, with a preschooler, toddler, and an infant, Willie and Lorie relocated from Minnesota to Lamar. Willie started a chimney sweep business, and Lori volunteered at the local La Leche League. Driven by a passion to help women and babies, she and a few other women eventually launched the Pregnancy Crisis Center in Clarksville in 1982.
While volunteering at the Pregnancy Crisis Center, teaching childbirth classes and training as a midwife, she couldn’t shake the heavy burden on her heart. It was a burden so great she described it in the most vivid of words: “I felt like I had blood on my hands.” As a Jewish Christian, she began praying, “What can I do, God?”
Meanwhile, her husband felt some unsettling of his own. While driving a school bus for the kids with disabilities he told Lori he thought they would one day work with special needs children.
In time, Lori and Willie began thinking about adoption, but as a low-income family, it wasn’t a feasible option.
One day she saw an advertisement asking for people to adopt special needs children. “Pictured was a cute little boy with spina bifida, and I knew immediately what we needed to do,” Lori recalls. She made calls, completed a home study (a requirement for adoption), and took classes. Though they weren’t matched with the boy that captured her heart in the picture, they were matched with a 15-month-old boy named Daniel.
Daniel, it turned out, had developmental delays and severe behavior problems. But despite the challenges, about five years later after also having her fourth biological child, Lori’s heart began to stir to adopt again. Lori and Willie waited for a year without a call and then decided to reach out further than the state of Arkansas. Eventually, she received a call about a two-year-old African-American boy with cerebral palsy named Kyle. Kyle could not talk, walk, or sit up. “But,” Lori smiles, “Kyle was delightful. Having him was such a healing experience after the challenges with Daniel.”
Soon Lori and Willie joined the Adopt America Network and began volunteering in the state of Arkansas to help other families match with children in need. Through this connection, she heard about children needing forever homes. Partially because of her experience adopting Kyle, she felt led to adopt another child with special needs. The cycle continued. “I don’t know how many times we said we were done; I even told our adoption worker to destroy our home study. Then I would find out about another child who needed a home and the passion would stir again. We never put a number on it,” said Lori.
One of those children was a 13-year-old girl named Grace. Born with spina bifida and paralyzed in both legs, Grace lived in an orphanage in China for most of her life. But when the Johnsons adopted her, she excelled in life and in school eventually becoming an honor student. “I had never been to a National Honor Society meeting before,” Grace grinned.
In junior high, Grace started playing the flute. When she entered high school this wheelchair-bound second-chair flutist set her ambitions on participating in the marching band. Through Grace’s dedication and Lori’s active advocacy on her behalf, Grace secured her place in the Russellville High School marching band.
Lori’s face lights up when she talks about her children. People some may see as a burden, she sees as a delight. “They are so much fun. They have no inhibitions,” she chuckles.
The Question Everyone Asks
When asked about the sheer work of raising these children, Lori almost shrugs off the question. But how do they do it all?
“We have lots of helpers,” she’s quick to say. From her biological children — now adults — who work for her to the nurses who come in to help with some of the children, Lori and Willie coordinate with many people who help. The older kids and those who can also pitch in. “The kids help the other kids. They make their own lunches. Most do their own bathing.”
Day to Day Living
Lori and Willie’s days begin at 5 a.m., when they each help specific children get ready for school. Then two helpers arrive at 6 a.m.
While the children are at school, Lori finds her days filled with scheduling appointments and taking them to doctors’ offices. “It’s constant advocacy on behalf of your child, fighting for them to qualify for this service or that. There’s hours of sitting at doctors’ offices, lots of waiting.”
One child must routinely travel to Delaware for a specific surgery. Much planning is involved for travel but also in making sure everyone else at home is taken care of.
“Summer is also a challenge,” Lori says with a laugh. “It is hard to find affordable activities for the children. One trip to CiCi’s costs over $100.” They do take advantage of free community events and activities designed for special needs children.
The other challenge is transportation. “We’ve outgrown our shuttle bus,” she chuckles, and adds that when the family travels together her husband drives the shuttle bus and she drives the 15-passenger van.
Last summer their family took the trip of a lifetime to Disney World thanks to the Make-a-Wish Foundation, which could be another story on its own.
What She Wishes Others Knew
When asked what she wished the community knew about children with special needs, her lighthearted tone grows serious. “I wish people would understand that kids with special needs are just kids. They have the same feelings as everyone else. One year we threw a birthday party for one daughter and nobody from her class came. We won’t make that mistake again. Now we just do family parties.”
When referring to the children who are unable to walk, she says, “Most people just see the wheelchair, but I wish they would look past it and see the person.”
A Hard but Most Satisfying Way of Life
The interest and support for adoption in the past few years hasn’t escaped Lori’s notice. “More families are choosing to foster and adopt,” said Lori, and this thrills her.
Still, she shares from her experience. “Adoption is not easy. You have to be prepared to change your lifestyle. And there are sorrows like we’ve never known.” Lori points out that they have lost children, including her biological daughter. “Sometimes I get envious of people who choose a more simple life or so-called normal life, never having to face the tragedies we have by opening our lives to the broken and unwanted. But even in the pain I find joy, watching my children grow and seeing their accomplishments both big and small, and acting on the passion God has given me to help to find homes for the weakest and the most unwanted. Those sorrows are more likely with children with special needs. But there’s also so much joy. I could not be more fulfilled.”
Estie, the baby Lori fought for in the tenuous earliest months of her life, is now a ninth-grader at Russellville Junior High, and she still requires a ventilator part of the day. Lori continues to research on behalf of her daughter in hopes of someday finding a cure for Estie’s undiagnosed condition. But amid the uncertainty of her illness, Estie thrives and is a motivational speaker even at her young age.
Through the highs and lows of this unique lifestyle caring for special needs children, Lori and Willie both insist they wouldn’t have it any other way. “I can’t imagine my life being satisfying without these kids.”