By Lyndsie Kiebert
Jessica Rachels is no stranger to educating people on the lasting effects of a virus — in her case, cytomegalovirus, which she contracted while pregnant with now nearly 15-year-old daughter Natalie, who was born with cerebral palsy and other disabilities due to CMV.
Rachels believes she contracted CMV while working in child care, but her doctor never made her aware of the risks associated with working with kids — the primary spreader of the virus — while pregnant. To help keep future Idaho mothers from experiencing the same difficulties, Rachels worked with the Idaho Legislature, Idaho Department of Health and Welfare and the Idaho Council on Developmental Disabilities in 2017 to pass a bill allocating funds for more CMV awareness materials to be distributed to pregnant women across the state.
The latest project on Rachels’ advocacy journey is a children’s book titled Natalie Bug: My Life With Cytomegalovirus — written by Rachels from Natalie’s perspective, and illustrated by her other daughter, 13-year-old Makala. Rachels said the book has been two years in the making.
“There are some books out there and those are from the parents’ point of view,” she said, “but I thought this would be a unique way to look at life with this virus from the child’s point of view.”
Natalie is nonverbal, but expressive in her own way. Rachels said that by giving Natalie a voice, she hoped to create a greater connection with the reader. Rachels said “it wasn’t too difficult” to empathize and channel her daughter’s experiences into written words.
“Especially with children, they would connect more reading this through Natalie’s voice, hearing it through her voice — seeing what her life is like through her eyes,” she said.
Natalie Bug, titled after the Rachels family’s affectionate nickname for Natalie, features Makala’s vibrant paintings alongside commentary from Natalie’s perspective about her lifestyle, the effects of CMV and what people can do to both avoid the virus and make those with lasting disabilities feel respected and loved.
“Some people — kids, even adults — will see someone in a wheelchair with disabilities and they kind of ignore them or don’t know how to interact,” she said. “[The book] touches on that, [saying], ‘We may not say hi, but a smile means a lot to us.’”
Aside from making expectant mothers aware of CMV, bringing attention to how people view and treat those with disabilities is a huge part of Rachels’ advocacy work.
“It’s something that definitely needs to be addressed — that they’re people, too,” she said. “They’re different, they have different abilities, [but] versus focusing on the disability, they just have different abilities.”
Rachels will donate a dollar from every book sale to the National CMV Foundation.
“God took us down this other path for a reason,” she said, “and Natalie has inspired us to advocate for her and others.”
Find Natalie Bug: My Life With Cytomegalovirus at Vanderford’s Books and Office Products, The Corner Bookstore, Sandpoint Superdrug and on Amazon. To learn more about CMV, visit idahocmv.com.
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