The Resilience of the Doke Family

DeAndra Dycus — Writer and Contributor

Photos By Buonanno Photography

When you hear the words “You’re pregnant,” every emotion that you could possibly feel arises. Joy, fear, adoration, nervousness, and everything in between begin to take over. You then start to exhibit that “pregnancy glow,” beaming “just because.” As you enter the second trimester, you begin to exhale because you feel safe to share your good news about the miracle growing inside you.

But then a cough changes it all. It sounds simple, but truthfully, it begins a complex journey. That dry, annoying cough led to a diagnosis of CMV for Jacky Doke. CMV stands for cytomegalovirus, an infection that can have mild to severe effects on a fetus. According to the CDC, CMV is the most common infectious cause of birth defects in the United States. About one in 200 babies is born with congenital CMV (cCMV). It is the No. 1 cause of newborn hearing loss, but can also cause vision loss, intellectual impairment, and other neurodevelopmental disorders. The cough is often overlooked, so it causes missed or late diagnosis of the virus, which leads to delayed treatment of the potential long-term health complications in the baby.

On Feb. 21, 2007, Emory Doke was born to Jacky and her husband Bob in Noblesville, IN. Blood tests had revealed to Jacky prior to delivery that her baby boy was infected with CMV. He had microcephaly (smaller than normal head size) and although he passed his newborn hearing test, Jacky noticed that he exhibited signs of poor hearing as a toddler. He was diagnosed with degenerative hearing loss at age 3, so his hearing has been tested regularly since then. By 6 months of age, Emory showed obvious delays in physical development, including poor muscle tone (hypotonia) and delayed motor coordination--he didn’t walk till age 5 ½. Eventually, doctors settled on an overall diagnosis of global developmental delay (GDD) for Emory.

Because the infection left a calcification in Emory’s frontal lobe, he is left-side dominant, meaning he has little use of his right side. As his mom puts it, “he knows his right hand is there, but he seldom uses it.” And although he is somewhat verbal, he has his own language, which makes it difficult for others to communicate with him. Fortunately, speech therapy has helped him make great strides in that area.

Jacky and her husband accepted the life-changing circumstances surrounding Emory’s entry into the world and decided to deal with challenges head on. At the time, they already had an 18-month-old daughter, Abbey. A year after Emory was born, the Dokes had another baby boy, Hunter. They also have four cats--Margo, Tikka, Verna, and Dee Dee--and 18 ducks that are part of the family at Doke Duck Farm. A reallife example of This Is Us!

When I was working with Jacky to complete this story, she received a call from Emory’s school informing her that he had gotten sick and needed to be picked up. My initial thought was, “Oh, the joys of motherhood.” Motherhood comes with so many challenges coupled with even more memorable moments. Jacky shared that her biggest challenge is making sure that there is coordination between the family and the school system so that Emory is provided the proper supports for his success. She added that he made great progress in junior high and is about to start as a freshman in the life skills program at Noblesville High School.

Another challenge is “intentionally educating family and friends on how the world is not always accessible for us,” Jacky said. “Until you live this life, you just don’t know how often the seemingly small things are anything but. For example, if we are invited to go out to eat, we need to make sure the space we are going to is accessible

for a wheelchair. Even though Emory is ambulatory, he uses a wheelchair for longer distances, so the family always needs to plan ahead. Are there steps? Is it a tight space? Also, what does the restroom situation look like? ADA is an important factor when going anywhere. “Unfortunately, we cannot simply jump in the car and go somewhere,” Jacky said. “That has improved over the years as Emory has become a bit more independent. But we still need to adapt more than the world adapts to us.”

Jacky went on to say that her best advice to herself and to other specialneeds families is to give yourself grace in this space. Be patient and give grace. While it’s very easy to become irritated with access challenges, it’s better to adapt to the situation and then reach out to those who can assist to make it better. For example, if a space like a restaurant is not ADA compliant, let them know. Until a voice is raised, it goes undetected as an issue. But do so in a kind manner. Ears tend to listen more to calmer voices. There is a way to advocate firmly while being pleasant. It is imperative to be your child’s biggest advocate.

Although Emory’s disabilities were seen very early in his life, it took nearly 11 years for Jacky to find community with other parents and children who have the CMV diagnosis. The joy in her voice when sharing about that community is heartwarming. Having community removes the feeling of isolation. You know others out there get you, and that is key when navigating a journey of any diagnosis, especially one that is so easily overlooked. Although Emory is ambulatory, he still requires lots of assistance at times, especially for his basic needs. “We welcome all support, but our family has been key in making sure we all have what we need,” Jacky said.

The Doke family recently took their very first family vacation. “We took two weeks from the day-today life and adventured by truck to Florida,” Jacky said. Their first stop was Jacksonville to see the Atlantic, then off to Orlando to see Disney World. Jacky was so impressed by how exceptional Disneyworld is in accommodating visitors with accessibility issues. That lessened the stress and worry and enabled her family to enjoy themselves that much more. From a mother’s perspective, she was able to exhale. The trip ended with a visit to Naples to see great-grandma and visit the Gulf of Mexico. “The trip was amazing,” Jacky said. “We had our expected bumps, but it went as smoothly as possible, and we are looking forward to doing it again! Life is precious and can appear to be so short. Traveling and exposing our children to the world around us will happen again. We just must do it and not consume ourselves with the worry of what could be and simply take the moment to embrace what is.”

As all the Doke children enter their teen years, life comes with new challenges. Like his siblings, Emory is growing, and the family must learn to adapt to his larger stature. Emory requires a lot of support--he needs assistance with eating, toileting, and dressing, among other things--and that’s harder as an individual becomes larger and heavier. He also started having seizures about four years ago, adding an extra layer of complication to his condition. But it was obvious early in the conversation that this family doesn’t sit around waiting to figure it out; they jump in, all hands on deck, and they get it done. Together, Jacky and Bob have embraced Emory’s needs and work to make life and all its challenges just a thing they do, not a thing that does them.

“He’s smart and very aware,” Jacky said of her son. “He’s on par with other kids cognitively, but because of his speech difficulties, he can’t always express his thoughts. He loves to leaf through photo albums and books with lots of pictures.” Best of all, Emory has a great attitude given everything he has to deal with, something that brings his mom obvious joy.

When asked how her family finds resiliency, Jacky said, “What are you supposed to do? We just dive in! We go with the flow and we don’t always make big plans. Our life is filled with big obstacles at times, so we embrace all that comes with it. Simply put, ‘this is us.’”

To learn more about CMV, please visit www.nationalcmv.org.