When She’s Good, I’m Good

At 25, Tina Jackson was filled with optimism for the future. Newly married and excited to expand her family, she and her husband had just purchased their first home when they received the joyous news—they were expecting their first child.

Tina’s pregnancy began smoothly, but complications arose in the final weeks. A sonogram revealed potential concerns, yet Tina, ever the pragmatist, remained hopeful. “It was concerning, but I needed to see and feel it for myself,” she said.

Thankfully, Tina didn’t have to wait much longer to meet her beautiful daughter. As soon as Tionna Jackson made her entrance into this world, she became her mother’s world.

“She was the most gorgeous baby. She was radiant. Her skin was beautiful, just glowing. Her eyes were dark and piercing,” Tina recalled with a smile.

Knowing there were potential complications, Tina did a mental assessment of her daughter. “I consciously scanned her toes and counted them. Everything seemed okay. And I breathed a sigh of relief. She’s okay.

“Little did I know.”

After her birth, Tionna needed to be transferred to another hospital for further testing, a separation that was agonizing to Tina. When she was released and able to see her daughter again a couple of days later, she was devastated by what she saw.

“She appeared to be having seizures. She wasn’t eating. She was not thriving. She was actually failure to thrive,” Tina said.

A few days later, a doctor delivered a life-altering diagnosis—Tionna had Trisomy 8 Mosaicism, a rare genetic condition. He told the new parent that Tionna most likely wouldn’t survive. But the doctor didn’t know Tina, a woman driven by an unshakeable love for her daughter and a determination to fight for her future.

Early in Tionna’s life, Tina witnessed her daughter’s strong spirit. A memorable night in the hospital changed everything. “We came in late, thinking she was asleep— her head was facing us when we came in,” Tina recalled. “And this little one looks at us then turns towards the wall! My husband and I looked at each other and said, no, that couldn’t be real. So we called her name again. ‘Tionna, Tionna,’ and she looks at us and then she turns her face away from us!

“I thought ‘is she mad at us?’ We’re late. We didn’t show up when she expected. And that day, we said to her, you have earned our respect. We are going to call you Miss T. So she became Miss T before she ever left the hospital.”

From birth, Miss T displayed that same bold persistence not only to live, but to live well. Her parents brought her home. Though they were in survival mode with a lot of fear and uncertainty swirling around them, Tina wanted Miss T to have her needs met in a way that would also support and foster her development.

Receiving no guidance from their medical care team, Tina began to research Miss T’s diagnosis. She wanted to understand what it was and what she could do for her. She researched programs and interventions and started working with her to advance her development.

And Miss T took off.

Tina homeschooled Miss T and her younger sister, so they could go at their own pace. Each day was a challenge Miss T met, and she continued to grow and thrive.

“We created a path for them to be well-rounded and successful,” Tina said. “I positioned myself in leadership positions, like being on the managing board for homeschoolers, on advocacy boards in our community. I’d teach a class to other families and kids—how to knit, how to crochet, how to make ice cream from scratch—and I would have my girls help me. They’d be right up there with me.”

She took her girls to Disability Day at the Capitol. She found an opportunity for Miss T to be on a national task force for people with disabilities. She was the only representative in the state of Missouri to do advocacy work, and she ended up in the White House because of it.

“There are no limits we accept,” Tina said. “No ‘I can’t do it.’ Because there’s always another way.”

With her years of research and advocacy experience, Tina took what she’d learned and decided to use it to help families in similar situations, founding Kids Rare Care. The organization’s mission is to empower parent caregivers to reignite past passions and redefine their identity, which leads to becoming their child's most confident advocate. “At the hospital after your baby is born and there are issues, you don’t have time to talk with people, because it’s hard to explain what a rare disease is. No one knows what your child’s going to be capable of doing.” Tina emphasizes early intervention is crucial to lead a happy, fulfilling life like Miss T.

As for Miss T, she continued to meet every milestone. “She just rises up to it and exceeds it,” said her proud mom.

As she entered into early adulthood, Miss T got her first job at a deli, working hard and asking to have more responsibility. She became Employee of the Month and started taking her own transportation to work. Tina and her husband were starting to look at options for Miss T to live on her own, helping her gain even more independence.

And then Miss T had an unexpected medical crisis that landed her in the ICU and on life support. Tina turned to CaringBridge.

“CaringBridge was the first thing that came to mind for several reasons,” said Tina. “One, I was not about to tell the story again and again verbally. Two, I did not want the information to get watered down as it does when you share something and get other people’s perspectives and insights. I wanted our voice in real time. Updates to be heard in our own way.”

“CaringBridge was amazing, Tina added. “I was journaling and it was lifting my heart, my thoughts right there in a safe place on my own time. In a few minutes, I was able to create this platform and start connecting people to it. For the first several days, there wasn’t much change in Miss T’s condition. It gave me the opportunity to share more about who she is, sharing her journey from the beginning and uploading photos. People were commenting, connecting, giving us gift cards for meals.”

True to her fiery spirit, Miss T eventually got off life support and out of the ICU. However, she had to learn how to walk, eat, and talk again.

Her mom never left her side, helping her recover not only back to where she was but to how far she could go. Along with her husband, Tina continues to pour her love and care into Miss T to ensure the best life possible for her.

“It’s an honor to be her caregiver,” Tina said. “It’s because of who she is. She’s full of love. Every day she’s telling me what a great mom I am and that she’s thankful to have me as a mom. And when she’s good, I’m good.”

Because of Tina’s personal experience with CaringBridge, she decided to partner with CaringBridge in her professional life as well. She makes sure the families she works with through Kids Rare Care know that CaringBridge is a resource for them.

“I just recently started looking to partner with organizations who are fulfilling their mission, their vision, and their goals, who are compassionate. The first organization on my list was CaringBridge,” she said. “A lot of my families will be going through really unpredictable times. You don’t know how it’s going to end, and constantly talking about it exhausts you. But if you’ve got a place like CaringBridge where you can go and park information, you don’t feel pressured.”

Whether it’s advocating for families in need, supporting her daughter’s journey, or sharing her story through CaringBridge, Tina’s dedication shines through. “I see the bigger picture now,” she said. “What we go through isn’t just for us—it’s for so many others. I’m just doing my part.”

Through her journey, Tina has become a fierce advocate, a loving mother, and an example of determination in the face of adversity. She continues to shine a light on Miss T’s journey, and in doing so, inspires others to live fully, no matter the challenges life may bring.