To the Least of These

by Jessica Allinger

" ‘Assuredly, I say to you, inasmuch as you did it to one of the least of these My brethren, you did it to Me’ " (Matthew 25:37-40).

    To the majority of our culture, she is worthless. She is three years old and still cannot walk or talk. She must be fed through a G-tube. She has poor muscle tone and very limited mobility. Her spine is curving, and her hips are moving out of place. In addition, her brain is showing signs of atrophy. If she does survive past early childhood, she will still be severely disabled. She will never be like her strong brothers and sisters. She will never be able to contribute much to society. This is Julia, and Julia is adopted. Why would a family who already had eight healthy children adopt a disabled child? What is it like to adopt a disabled child? The idea of caring for a child with disabilities can be scary. Maybe by learning more about Julia and her family, I will learn to see beyond my fear, to see why others are willing to adopt a child with disabilities.
Jerri Unruh met me at the door with a warm smile and invited me in. She led me over to where Julia lay in her crib near the kitchen, her little black dog curled up at her side. Julia’s eyes were almost closed, and she was making a moaning, crying sound. Jerri explained that she had been making that sound lately, but they weren’t sure why. The rest of the house was busy with daily life. Several little kids were playing, a friend of Jerri’s was cleaning the kitchen, and her friend’s college-age daughter was working on algebra at the counter. The Unruhs homeschool, and piles of schoolbooks covered the dining table. Jerri and I sat down at one end of the large wooden table, and I spent the next 45 minutes learning more about Julia and her family.

The Unruhs are part of an organization called CHASK--Christian Homes And Special Kids. CHASK is a non-profit organization that helps find adoptive families for children with disabilities. On August 23, 2007, Jerri had called the CHASK office to learn about any new kids that were needing homes. The Unruhs weren’t planning to adopt at that point, but Jerri wanted to pray for the children that CHASK was trying to place. One of the children described to her stood out--Julia. Julia’s birth mom was too young to care for her, so Julia was currently in a private foster home in Arizona. She had to be fed through a G-tube--a tube inserted directly into the stomach through the abdomen. After talking with her husband, Jim, and praying together, Jim told Jerri to go ahead and start filling out the paperwork. In addition to paperwork, the Unruhs had to have a home study done, part of which required all those over age eighteen to be fingerprinted. They also needed to find a lawyer to help make sure all the paperwork was in order. The adoption would have gone faster if the home study had already been done before they decided to pursue adopting Julia, but it wasn’t. In addition, Jim had been having some health problems, so Jerri had rescheduled the fingerprinting. These problems caused some delay in bringing Julia home, but, as Jerri told me, "God’s timing is perfect."

Adopting Julia turned out to be more than paperwork and a home study. Jerri had previously worked with disabled children and even had practice working with a feeding tube, but she was not comfortable adopting a child with seizures, which she noted on the CHASK application. The two families who had previously agreed to adopt Julia had backed out; the Unruh family was next in line. Then they got a phone call from Arizona: Julia had been seizing over the weekend. The very disability they did not want. But, as Jerri told me, the fear didn’t matter anymore. They had chosen Julia. They had not been looking to adopt when Julia came up, but now here she was.

"She’s mine." Jerri said. "God placed her here. . . . I’m so blessed by her every day."

In October of 2007 Jim and Jerri, along with their youngest child, nineteen-month-old daughter Lily, went down to Arizona. They arrived back home with Julia on October 14. Then, on the 23rd, Julia’s G-tube came out. She was sent to Spokane, where it was discovered that the G-tube had not been placed properly back in Arizona. Jerri took me over to where Julia lay in her crib and showed me the scar from the first G-tube. I felt it gently. It was too high up on her stomach, too close to her ribs. The doctors in Spokane replaced it, lower this time. Although the Unruhs knew that Julia had seizures, she had never been formally diagnosed. While in Spokane, an EEG was performed, and Julia was diagnosed with Ohtahara Syndrome, also called Early Infantile Epileptic Encepalopathy. In other words, Julia has a severe seizure disorder. Many children with Ohtahara Syndrome do not live past their first year. Some do, but they are severely disabled and usually die in childhood. The doctors did not expect Julia to live long.

After three weeks in Spokane, Julia was able to come back home. In January of 2008, the adoption was finalized, and Julia Hope officially joined the Unruh family.

Julia continued to grow, although development was slow. She did not smile until she was eight months old. She also gained weight, though still using a feeding tube. Trouble with choking sometimes required suctioning, something Jerri became proficient at. In one of her "Life With Julia" articles for the NATHHAN/CHASK newsletter, Jerri writes: A common occurrence around here is to be responding to Julia’s choking emergency with the suction machine, while at the same time being asked, "Mom, where is my math?" or "Hey Mom, can I have a cookie?" To which one of two things happen, #1 I respond with, "You left it on the washing machine." or "No, you can’t have a cookie, wait for dinner." OR #2, I hysterically say, "Please, can’t you see this is life or death?!"

The hospital staff in Spokane was surprised that the Unruhs would adopt Julia, knowing she had serious medical concerns. Even relatives could not understand their decision. Jim Unruh writes in an article for the NATHHAN/CHASK newsletter: "We have heard things like, ‘How can you do this to yourselves and your family? Isn’t there someone else who can raise it?’" The Unruhs feel very differently. "IT!!" Jim writes, "her name is Julia, not IT!"

The birth mom could not keep Julia, and two families had already backed out. No one would have blamed the Unruhs if they had decided to as well. So why did they adopt Julia? Jim writes: "It’s very simple. That’s what God did for us! For while we were still helpless, at the right time, Christ died for the ungodly. (Rom5:6)" God had called them to adopt Julia, and that settled it. I asked Jerri how the other kids had responded to adopting Julia. She replied that their reaction had been very positive.. The kids love to cuddle and kiss her. In one of her "Life With Julia" articles, Jerri gives an example of what she’s heard at home from the little kids: "...Momma, Juya having seezers; mom, come quick she coughed, how can I help? I’ll turn on the suction and get some water to clean it when your done; she’s so beautiful, can I kiss her?" Julia is now three years old. When I asked Jerri how Julia is doing, she laughed and said "Her hair is really long!" When Julia was eight months old, she was floppy, like an infant. Now she can hold her head up a bit, and she can move her limbs some. Julia is still fed through the G-tube, although she is able to eat a little. Jerri explained that Julia can’t eat enough to be off the feeding tube, but she can eat for recreational purposes, for sensory stimulation. She has speech therapy to help with swallowing, and she continues to receive occupational therapy several times a month.

While Julia has made progress, she still has many difficulties. Her spine is curving, and her hips are moving out of position. Her vision also seems to be worsening. Her latest brain MRI shows spaces in her brain that were not there previously, a sign of brain atrophy. Julia will likely never walk.

She cannot talk, and she is unable to show much personality, an ability that most two-year-olds possess. The long-term prognosis isn’t very bright. The Unruhs know that Julia will never be like their other children. Therefore, they do not have the same expectations for her. Jerri summed it up when she said: ‘She’s Julia, and this is life with Julia." Even three-year-old Lily seems to understand that Julia is different. She doesn’t expect Julia to walk like other children she knows. In the evenings, Jerri likes to sit and hold Julia. That means other things may not get done, but, as she told me, in the light of eternity, the other things don’t matter. The cleaning will still be there tomorrow, and the day after that, and the year after that. Julia needs someone to love her now.

What about other children with disabilities? According to the Child Welfare Information Gateway website, it is estimated that 30-50% of children waiting to be adopted have some type of developmental disability. Unlike a child who can develop normally, a developmentally disabled child will require more care.

Adopting a child like Julia requires a long-term commitment because many of these children will never be able to care for themselves. Many times, families who adopt developmentally disabled children already have a large number of other children. They already have experience with parenting as well as with the medical and school systems. The CWIG website says: "The motivation shifts for these families from wanting to adopt infants to form a family to providing for the quality of life for additional family members." Caring for a disabled child takes time and patience. Quoting from The Special Child Handbook, CWIG notes that an important characteristic is "You are able to view people for what they can accomplish, not what they cannot, and you value them according to their own potentials." However, for those like the Unruh family who do adopt a special needs child, the rewards far outweigh the costs.

Jerri says in one "Life With Julia" article: "When we were first made aware of Julia I felt that we needed her as much as she needed us." CWIG echoes this: "Those who have adopted children with disabilities feel that they receive more from the experience than they give."

I concluded my interview with Jerri, and stood up to go. As I walked past the crib, Julia was finally sleeping, her porcelain-like face calm. I left the Unruhs’ home that day with more than pages of scrawled notes. I left with some lessons I hope to never forget.. I learned that love overcomes fear. Love wins out over the fear of adopting a child with special needs. Love keeps you going even when other people don’t understand your decision. Love gives you the strength to give up personal comfort for someone else. Oh, the uncertainty will still show up some days, but it will be controlled by love. The Bible says " . . . perfect love casts out fear . . . " Learning about Julia, her triumphs and her struggles, her life, has made me wonder if I, too, may someday be called to love one of the least of these, one of the little ones whom the rest of the world might consider worthless.