MARY ESTHER — In a home that never takes down the Christmas tree lives a 12-year-old girl named Hannah.

 

The blonde hair, blue-eyed girl loves her tree. Confined to her full-body wheelchair, she expresses her joy with a smile and slight wave of her arm.

Hannah's parents, Todd and Karin White, adopted Hannah 12 years ago knowing she would require a lifetime of care. Hannah was born without the right side of her brain and suffers from a complex seizure disorder, brittle bones and dysfunctional adrenal glands.

But the love in the White home is palpable, and to watch the three of them interact is a thing of beauty.

“Pretty girl, what are you doing Hannah? Are you excited?” Karin asked, as Hannah cooed.

Todd didn't use words, instead leaning in eye-to-eye until they both smiled and laughed.

“They think maybe she had a stroke in utero,” Karin said of Hannah’s condition. “When we brought her home she looked like a very normal baby, but they told us she’s going to have some issues with probably walking, talking, hearing and seeing.”

They were also told by many doctors that Hannah was unlikely to reach adulthood.

"At first they told us they weren’t really sure how long she would actually survive because of all of the challenges that she has," Karin said. "So she’s done very well and we’ve been very blessed to have her for 12 years.”

Hannah can only move her head and has minimal use of her arms, but she has found a way to push toys with her hands and 'sing' along to her favorite songs by making similar sounds. During a typical day Hannah interacts with her computer pad with glasses that serve as a mouse pointer. She watches movies and has frequent rest periods when her seizure activity is high. A teacher comes to the White's home to home-school her.

Like other little girls, Hannah loves the Disney movie "Frozen," but her dad says she has a funny way of showing it.

“When a character gets hurt in a movie, that’s when she’ll laugh,” Todd said. “We don’t know what’s up with that, but sometimes she’ll let out a big belly laugh."

Choosing special needs

For the Whites, the road to adoption was surprisingly short. Less then a month after completing classes, they were able to bring Hannah home.

“We came home thinking, ‘This is going to take awhile, and it didn’t really take awhile because we were down in Orlando and we got a phone call from the adoption agency saying, 'There’s a little girl we would like you to consider,' and we were one of the few families that identified that we would take a special needs child.”

After 10 years of marriage and a miscarriage, the couple were eager to start a family, and said they felt led by God to not make any restrictions. They decided together that they would accept any child in need of a family.

"We did a lot of praying about it because we weren’t able to have our own kids," Karin said. "It didn’t matter on the race. It didn’t matter on the age. It didn’t matter on if they were a sibling group or not, and we said that we would accept and consider a child with special needs."

Karin added that as a former nurse in a children's hospital, she felt confident that she and Todd could learn to take care of any child placed in their care.

Shortly after bringing Hannah home, Karin, a pediatric nurse, quit her job to devote her full attention to her daughter. But even with her medical background, Karin said Hannah has taught her new skills.

“There’s a lot of things that Hannah had that I hadn’t experienced before,” she said. “Not everything is comfortable, not everything is easy just because I’m a nurse. I mean, I still rely on a lot of direction and I ask a lot of questions, and if we don’t find those answers we make sure we do because that’s what’s important for us to take care of her.”

Getting to know Hannah

According to Karin, it takes time to understand Hannah. She can be smiling and laughing, but at the same time choking, so learning to recognize Hannah's facial expressions is a priority.

"For these kids, just identifying what those needs are for them and how to recognize what to do and to make sure that there’s a plan ... it takes a lot of training and a lot of feeling comfortable with her routine," Karin said.

Doctors had told them that Hannah may never speak, but sitting in her wheelchair Hannah often makes low-toned sounds that Karin and Todd identify as "mama," "dad," "Hannah," "hi" and "all done."

“She’s a very big girl in our eyes,” Karin said. “Through all the challenges, she is able to tell us that she has to use the potty. She raises her arm a lot or she’ll say ‘eee.’ There’s a lot of special needs kids that never make it that far to be able to let you know they need to use the potty, and that’s been a huge focus of hers for many years.”

With special technology, Hannah is also able to communicate basic needs through an augmentation device she operates using her eyes to make choices on her computer.

"Hi, I'm Hannah," she prompted her computer to say by turning her head to point to the greeting option. Later she also chose the phrases, “I want to call grandma," "I love you" and "I miss you."

After 11 shunt surgeries and three surgeries to correct severe scoliosis, Hannah has seen more than her share of medical hardship.

But through it all, the Whites said Hannah is an overachiever.

“She has proven to the speech therapist that she is a very bright little girl despite all odds against her,” Karin said.

Couple life

Caregiving for Hannah 24/7 also weighs on the couple’s marriage and social life. Todd said that when they first adopted Hannah, they joined a support group with other families with special needs children. But over the years they have lost touch with most of the members. Some have divorced, others have moved and some are grieving the death of their child.

“We’ve got friends who have lost their babies along the way, so we feel very blessed that we still have her.” Todd said, motioning to Hannah.“But it’s tough on the relationship between Mom and Dad, too. Our time is with her, everything we do is with her.

"We’ve had maybe five date nights in the 12 years. Mostly our dates are in the morning when the nurse first gets here, we’ll go on a walk up the road about a quarter-mile to the Waffle House, have breakfast and back in 30 minutes."

Hannah's low immune system also means the Whites stay at home as much as they can.

“We don’t have a lot of interaction with a lot of public areas just because of the chance of her getting sick,” Karin said. “When I go shopping, I hand sanitize everything I touch, because that’s the only way I’m not going to bring anything home to her.”

Over the year, the couple have some respite through home nurses, their church and friends who have volunteered to lend a hand. But the couple says it still gets lonely.

That is when they rely on their faith. 

"All I know is that through our faith and through seeing how much trust and faith Hannah has put in us as parents, that we’ve come a long way," Karin said. "She has taught us a lot about life. She’s taught us a lot about trusting people.

"I think God knew what he was doing when he put all of us together, and we feel very blessed that he chose us to be her parents here on earth.”

When asked if they would adopt again, the couple said the idea of taking in more children has always been on their minds.

“For quite awhile we talked about adopting again, and every time we did she ended up back in the hospital,” Karin said. “But we are trying to look into adoption again, just seeing where the Lord will take us on that because he knows when the timing is right more than we do."