The familiar shout of “Mom!” can be annoying to some mothers, but Erictonya “Tonya” Smith would give just about anything to hear it, even once.
Instead, the 35-year-old settles for the smiles that regularly cross her daughter’s face.
Although she is 10 years old, Tatiana Mann weighs only 37 pounds. She spends most of her life in her wheelchair, and her mother makes sure her life is as normal as possible.
But it isn’t easy.
“The daily life of this family is difficult, emotional and involves challenges that many don’t face in a lifetime, let alone every day, all day,” Kit Speirs of Bethany for Children and Families, wrote in her nomination of the Moline mother and daughter for Wish List Quad-Cities. “Tonya took her daughter trick-or-treating, knowing she could only rub the taste of chocolate on her lips.
“Tatiana’s eyes light up in recognition, and she struggles to turn her head when she hears her mother’s voice and when she feels her presence nearby.”
Her mom easily reads the signals.
“She shows a lot of things on her face,” Tonya said. “Every part of Tatiana’s body has a problem, except her heart. She has a trach (surgically created airway), a G-tube (feeding tube) and has had her spine straightened.
“This girl is always getting poked, always having someone in her face. How much more can she take? What’s going on in my life couldn’t possibly be that bad. It’s not easy being in my shoes, but what about being in hers?”
Tonya doesn’t like to complain. She’s crazy about her daughter, after all. As long as Tatiana is OK, Tonya can endure.
“I’m usually in bed around 9 or 10 p.m., and I sleep until about 2 a.m.,” she said. “I wake up again automatically at 6 a.m. It’s important to get Tatiana repositioned, and I clean her trach, give her a (breathing) treatment and change her pants every four hours.”
She uses her limited hours of supportive nursing services to make sure Tatiana can go to school. Her partner, J.D., helps with Tatiana’s care, but the demands of caring for a child with profound disabilities can be exhausting.
Her job as mother has cost Tonya jobs she enjoyed outside the home.
“I really don’t discuss my home life at work (at Hardee’s),” she said. “I just make my off days Mondays and Wednesdays, because those are the days we schedule appointments in Peoria.”
Getting to those appointments also is a challenge, because Tonya doesn’t have a car. She takes a bus to work, which means she cannot take a second-shift job because buses stop running in her area of the Quad-Cities at 8 p.m.
Although she has been nominated for a used vehicle, a big request by Wish List standards, Tonya said it does not necessarily have to have a wheelchair lift. She is accustomed to carrying Tatiana and her wheelchair — 100 pounds altogether — up and down the steps to her apartment.
“If a car wasn’t too small, I could load the wheelchair in and out,” she said. “I’m used to doing what I have to do. As a mother, you mother your child, regardless. Tatiana is my life. She is who God gave me.”