October 20, 2018 9:59:12 PM
Jan Swoope - [email protected]
A child's trip down a schoolyard slide doesn't rank as a milestone for every parent, but for mom Melissa Rushing, it was a "Mount Everest" moment. On Oct. 8, her daughter, 5 1/2-year-old Emma Rose, independently went down a slide, after four years of coaxing.
"It was as monumental as walking," Rushing said, her eyes moist.
Watching the little girl take the slide and happily scamper across the playground at Annunciation Catholic School in Columbus was a significant mile marker in Emma Rose's journey to her full potential. There was a time doctors weren't sure she would even walk. The road since has been challenging. So challenging, Rushing kept much of it to herself.
"As I've gone through this, especially the past three years, a lot of people have wanted to know and haven't been sure what's happening," she said. It's not something easily answered in the grocery store, when acquaintances kindly ask, "How is Emma Rose?"
"It's such a loaded question," Rushing said. "How does a parent explain?"
Her response was often the courteous equivalent of "fine," because how does a mother share the fearful daily struggle of trying to manage a child's health crisis and also maintain a business that supports the family. "There were times I wondered if I was going to need to be a stay-at-home mom and take care of her," she said. "One minute it can be going great, and the next day you can be in the hospital."
Rushing now thinks sharing part of her story may help someone else. "I feel like there are a lot of families that have special needs, and people don't know what to say or what to do."
Ten weeks ago, Emma Rose enrolled in kindergarten at Annunciation Catholic School. That, in itself, is quite an achievement. It's the first time she's been surrounded by typically developing children. She covered a lot of ground to get there.
First signs of any problems surfaced when Emma Rose was about 3-months-old and nursing. A rash would appear around her small joints within five to 10 minutes after she began eating. The discomfort caused her to stop taking nourishment long before she was full. Ointments provided no relief. The infant was too young for comprehensive allergy testing. The rashes became worse, causing Emma Rose to consume even less. Her mother researched all she could find. Doctors suggested changing everything from laundry detergent to lotions, but Rushing was confident that wasn't the source of trouble.
"I've been in skin care for 18 years," said the owner of Bella Derma Organic Day Spa. "I knew we were already doing everything topical right."
She journaled everything she ate while nursing, plus all her daughter ate and came in contact with.
"I started trying every formula on the market; we tried goat's milk, everything. I did not want her in this pain," Rushing said.
Next came the TED diet -- or total elimination diet, doing away with ingredients then slowly adding them back in, one by one, to isolate which might be causing the reaction. Sugar emerged as the primary trigger -- an ingredient so prevalent that Rushing began specially making all her daughter's formula and baby foods. The issue gradually became more manageable, and although Emma Rose was delayed in some physical functions -- she still wasn't walking at almost 2 -- her checkups didn't raise undue flags.
That was, until the 2-year-old well-baby appointment. What followed was an agonizing gamut of tests and theories.
"A doctor said she may never walk or talk, that she may have muscular dystrophy," Rushing recounted. "Life went upside down and left and right. It was the longest two days of my life until those tests came back."
Her parents took her to Batson Children's Hospital in Jackson, where Emma Rose was tested for epilepsy and anything else doctors felt was warranted. Over time, autism, cerebral palsy, genetic issues and brain tumors were also ruled out.
"She passed all the tests; they kept eliminating all these things, but she still wasn't walking," said Rushing who, by this time in her life, also had an infant son.
"I will never forget the Mother's Day family gathering on May 10, 2015," Rushing recalled. A relative, unaware of any physical limitations, asked to hold Emma Rose. After a time, the relative gently set her down with her feet on the floor. To Rushing's amazement, her daughter took four halting steps toward her mom.
"When we got home, I worked with her for two to three hours straight because I knew she could do it," Rushing said. "I cried tears of joy that night."
Physical, occupational and speech therapy followed, and Emma Rose began going to T.K. Martin Center for Technology and Disability at Mississippi State and PediaTrust in Columbus.
At age 3, she experienced a frightening spell of falling repeatedly. Another stay at Batson ruled out specific diseases but pointed again to connections between foods and neurological function. Next came two weeks of twice-daily vision and additional therapies at Snider Therapy Center in Birmingham, Alabama. Since January of this year, Emma Rose has worn special prism glasses that help her perception of what she sees, her mother explained.
The demands of trying to balance raising two young children, one with special needs, and giving her business the attention it required weren't easy, Rushing admitted. She also had responsibilities as owner of the large downtown building that houses Bella Derma; the family lived in a vast apartment upstairs. In the midst of everything else, Emma Rose's parents divorced.
"I kept feeling pulled, wondering what is my role?" said Rushing. "I had good days where I felt like Super Mom, but most days I felt like I was doing it all wrong and having a pity party about how much effort every day was. Then at T.K. Martin I would see one of the mothers with a feeding tube for her child, or hoisting a wheelchair in a car. There is a whole community of special needs children. ... Things like this teach you what's important."
This past spring, a perceptive teacher at T.K. Martin suggested Emma Rose should try a regular classroom setting, that she was "on the cusp" and would benefit from having typically developing children to emulate.
Once again, Rushing went into research mode, which brought her to Annunciation Catholic School. Annunciation Principal Joni House and Rushing had a candid meeting.
House said, "Melissa was just very understanding that it may not work out, that we do not have the staff that works specifically with special needs students."
Early this semester, Rushing accompanied her daughter throughout the day to discover what she needed most. Now, Jeuel Catledge, who was formerly Emma Rose's nanny, attends school with her, assisting throughout the day.
"She's progressing like crazy," Catledge said. "Just now, we've been working on pencil gripping; she's getting the hang of it. I'll hold her hand and trace it with her."
Emma Rose's gait and speech may not be just like her classmates' -- yet the bar is set high for her, House said.
"We expect the same from her as we do the other students, and we can tell she's making huge strides to reach those expectations."
While Emma Rose makes advancements, her fellow classmates benefit as well, House added. "It's a win-win, because they're learning from her, too."
Emma Rose still has significant food allergies. Her mother still makes all her food and sends it to school in a cooler, along with custom-made treats in case of a special occasion.
"I have a whole new method of cooking," Rushing said. "Basically, I go see what the grocery has that we can have that looks the brightest, most vibrant and is organic. I find the best whole foods, and I google what recipes can I make with these ingredients. ... I had no idea how much food affects the brain."
Other changes are simplifying the family's world. Rushing sold the downtown building and now rents space in it, where her Bella Derma business is thriving. She is committed to the location and to being part of the community.
She, Emma Rose and Fletcher, almost 4, have moved from the upstairs to a cozy house near downtown.
"I went from an about 8,000-square-foot villa to an 800-plus-square-foot tiny house," she said with a grin.
Emma Rose, she feels, is making rapid strides.
"She's discovering what she's capable of. She has special needs, but everyone has stuff they struggle with," her mother said.
To preserve sanity along the journey, Rushing said she learned to tell herself, "This is what is showing up today: What can we do with it to make it an awesome day? ... We're making lemonade," she smiled.
Jan Swoope is the Lifestyles Editor for The Commercial Dispatch.