A Mother’s Story

May 1, 2015 | By More

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The small white house is plopped down right behind the local Taco Bell. A wheelchair ramp leads up to the doorway and a smiling face waits behind the screen. Stephanie Tanner, known inside this house as mom, and her assistants Melissa and Haley are welcoming and kind, but on guard—they have to be.

Mark, 22, is on the couch in the fetal position napping. Carson, 12, claps incessantly and searches the room with dimmed eyes, mouth agape. A.J., 10, is sick and home today from school, a place Carson will never get to go. Kaelin, 18, is a junior at Russellville High School and the only Tanner child to have once been pen pals with Russellville native and NFL kicker Zach Hocker. Reagan, 17, and 14-year-old Maali are out and about today. Allie was 7 when she died of complications from the flu. Charlie is 4 now and has enough energy to wear down mom and her helpers.

These are Stephanie’s children. The couple’s only biological child is Charlie. Their other children came from across the country—California, Kentucky, New York, Texas—but their home and family is here.

The sum of their stories creates the meaning of Stephanie’s life.

Kaelin’s story…

“I got my degree in English from Sam Houston State in Huntsville—that’s where the state prison is in Texas, but I swear I was at the college—and worked as a case manager for Friendship Community Care,” Stephanie says. “My plan was to work there a few years and then go off to grad school. Well, that was 23 years and eight kids ago.”

At 27, she began to question the necessity of having a “traditional family.” Her father was a Southern Baptist minister and she says they moved often and always had foster children, foreign exchange students and the occasional live-in uncle or aunt staying with them. She has always been used to the idea of family being what you make it. So she set out to make her own.

“My knight in shining armor hadn’t ridden up yet, so I began to adopt,” she says. “I flew to California to get Kaelin. He has Prader–Willi syndrome, which means he has behavioral issues and chronic hunger that disallows him from knowing when to stop eating.”

She says Kaelin is a typical teenager because her IQ has dropped significantly in his mind, which is fine with her as long as he says sir and ma’am when appropriate. His behavior has improved with age and been noticed and commended by those who interact with him.

“Last night I cried and cried because I was told Kaelin would receive the Cyclone Achievement Award for character, and I think it’s his being able to adapt so well that earned him this,” she says. “If I make this world a more accepting place because of how I raise my kids, I’m happy.”

Reagan’s  story…

Eight months later, Reagan, a baby with downs syndrome, was born. Stephanie adopted her, and at 3 years old her heart was failing. She would either get a new heart or die.

“Doctors told me she wouldn’t get a transplant because of her condition,” she says. “I told them she has to be listed; she deserves a chance.”

After Reagan’s story was told in The Courier, people started reaching out. Former Sen. Tim Hutchinson contacted a Washington liaison who said no one could be denied based on a diagnosis, and in 2001 Reagan received her transplant heart.

“This year will be her 14th anniversary with a new heart,” she says. “They say most hearts are good for 10-12 years, so anytime I go to the transplant clinic they could tell me her heart is going bad. I drive her crazy, listening to her heartbeat with the stethoscope all the time. I get up every day and am so thankful everyone is still here.”

Mark’s story…

Stephanie adopted Mark, who has downs syndrome and autism, at the age of 6. Three years ago, Mark needed a tracheotomy and a feeding tube, but doctors did not want to operate because of his condition and low-functioning level.

“I told them to let me worry about his condition,” she says. “After the surgery he’s been doing great, so they’ve trached at least two other people with his level of ability. My son has served a greater purpose.”

Although Mark is nonverbal and cannot express what that purpose is, his mom still derives meaning from his every move.

“He’ll put his fist to his chin, and I’ll always say ‘Oh! He’s thinking,’” she says. “Then people will ask how I know what he’s thinking, and I tell them I don’t, but I give what they do meaning and it blossoms from there.”

During her most recent hospital visit with Mark, doctors asked her when she’d stop trying to save him. She’ll never stop.

Allie’s story…

Allie came after Mark, but she didn’t stay with her mom long. She was born with a brain stem injury and died in 2008, a few days after a tornado tore through Atkins.

At this moment, Stephanie turns to A.J. who is still in the corner painlessly tearing out gobs of hair and asks where his sister went, other than heaven. “Duke,” he says.

Allie’s body was sent to Duke University for medical research, so accordingly her brothers and sisters became devoted Blue Devil fans.

“When Duke was playing in March Madness, they all were cheering and screaming, ‘I have a sister that goes there!’” she says.

This is the meaning she gives to her kids’ lives, which is multiplied and given back to her every day. An otherwise meaningless Duke National Championship win becomes a family’s rally cry, a requiem celebrating Allie.

“I can’t remember a time without my kids; I’d give any second of my life to have Allie back,” she says.

Maali’s story…

It’s pronounced like Molly, but uses the Russian spelling, which means precious, instead of the English spelling, which means bitter. They gave her this name to remind people abuse and neglect as an infant caused her health problems, not her own choosing.

“She was 17 months old when I got her, and she never cried,” Stephanie says. “I promised her as soon as I put her in my car that there’s nothing she could do to make me not love her.”

Maali has Prader-Willi syndrome and is extremely maladaptive and self-injurious. Stephanie has had to make a rule that if Maali removes her own tooth, the tooth fairy won’t give her any money.

At the mention of the word tooth, A.J. raises his head and says, “Look out, Maali. Bite. Bite.” Mom laughs and says everyone in the house knows Maali’s a biter, so you better look out.

Prader-Willi makes her unable to feel pain, and this combined with self-harming has had devastating effects.

“A year and a half ago she opened up her entire back with her fingers all the way to her knuckles,” she says. “When I walked in she just said ‘Look Mom!’ Professionals have told me I should put her in patient care somewhere, but as long as I can provide her with the tools she needs, I’m not doing that.”

Stephanie has kept her promise to her daughter.

Carson’s story…

When Stephanie got a call about a baby in Kentucky who was medically involved and rife with complexities, she again opened a place in her heart and home.

Carson has CHARGE syndrome. He’s blind, deaf, has heart and kidney problems and brain anomalies.

“Carson’s not supposed to do anything,” she says. “The neonatologist actually turned off life support and said he wasn’t worth it. But Carson is the happiest guy in the world. He doesn’t like the word no and is as ornery as all get out, but he brings great joy to all of our lives.”

With the help of an in-home teacher, Carson can now say holler, hi, momma, dada and hallelujah. When he wants to go somewhere, he’ll grab your hand and lead you to the door. Because of coloboma he’s missing the center of his eyeballs and has no spatial awareness, but he’s learned to use his peripheral vision and often climbs to the tops of shelves for a thrill.

His mom began to notice he was identifying cause and effect, a skill doctors said he would never acquire. As a test, after he had spilled the dog’s water bowl, she took his favorite stuffed animal, Bear Bear, and put it away in her room. In retaliation, Carson threw her diet coke as hard as he could at the ground.

“I couldn’t even be mad because I was so excited he made that connection,” she says. “The neurologist was just as excited as I was. My kids are always doing things doctors said they never would because I believe in them.”

A.J.—Aiden Joon’s story…

As with Kaelin and Maali, A.J. has Prader-Willi. When Stephanie advocated for other prospective parents to adopt kids with the syndrome, the agency in New York asked her to become mom to a seventh child, 8-month-old A.J.

“He has grown into a very interesting young man,” she says. “He’s very talented with computers, phones and puzzles.”

She points to the top of his head, sparsely covered with dark hair, most of which he has removed by hand, and says he has trichotillomania, a disorder causing him to pull out his hair.

“The hairstyle is of his own design,” she says. “He feels very little pain, but it’s nerve racking, and I have to always be aware of what each kid is doing. Sometimes it gets the best of me.”

Melissa interjects now saying, “There is nothing in the world that could make me go without a full night’s sleep. Stephanie never gets a full night’s sleep. She’s up at 10, 11, 1, and 3. She does kid checks all night long.”

Stephanie only smiles and says, “I’m two steps from heaven every day. I’m no different than any mom out there. I chose these guys, but God brought them to me.”

Charlie’s story…

“After A.J., I decided to give my conservative Southern Baptist parents a heart attack and go on EHarmony, where I met my husband Robert,” she says. “We’ve been married nine years and we had Charlie, my only biological child, four years ago.”

She says her comfort zone and skill set is in special needs kids, so Charlie has been a new and challenging experience for her.

“Last night after he had been through a full day of preschool, an hour of dance and an hour of his brother’s basketball game, he came home and was spinning in a chair. We wonder if he’ll ever run out of energy.”

She says Robert calls himself the voice of reason because if it were not for him, she’d probably have even more kids. He’s probably right.

Mom’s story…

Stephanie says she feels like people who aren’t close with her don’t understand why she chooses to live the way she does.

“If tomorrow someone out there has a brighter day after interacting with my kids, I’ve done what I’m supposed to do,” she says. “That’s my job because they’re my babies.”

But she also says her selfless drive is fueled by wanting to know what makes each person tick, because “every little thing about you is what makes you you.”

She knows who all of her children are. Her adoration and compassion toward each son and daughter helps them to become the best version of themselves, the hope and prayer of every mom.

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