June 16, 2013 Updated: June 16, 2013 at 5:40 pm
This is the story of a little girl and her daddy, and about appreciating every moment we share with the people we love. It's about the silent communication that flows almost like telepathy in a family. It's about shopping and getting dressed, because the simplest and the grandest moments are equal when you realize all of time is a temporary gift.
It's about Hannah McDill, who will turn 13 on June 27, and who never would have danced if not for her dad, David.
On Friday, Feb. 22, in the hallway outside a banquet room at the Crowne Plaza Hotel, David moves aside the pouf of Hannah's skirt so he can link a baby bottle filled with a mixture of crushed medications and water to the feeding tube leading to her stomach. Hannah's eyes loosely track his movement until he sits down by her wheelchair, uncurling her slack fingers so he can grasp her hand.
"You doing OK?"
A single blink means no, but Hannah's eyelids flutter: yes.
The hallway throbs with the beat of music from the nearby ballroom, where the dancing portion of "A Daughter's Heart" is starting. This is the fifth year David and Hannah have attended the annual father-daughter event, and the first since Hannah's spine was fused in May of 2012.
David leans down to his daughter's ear. "It's been awhile since we danced. We should dance more often."
David sees the tears rimming her eyes, and then the single one that breaks and traces a line down her cheek. Flutter.
Hannah's so sentimental, like her mom, Sandi.
"You did the same thing when your baby sister was born," says David, smoothing Hannah's dress, waiting for the med bottle to empty so they can join the others.
At only 57 pounds, Hannah is a wisp of a girl, with alabaster skin, brown hair and brown eyes. She cannot walk or talk, and communicates by blinking her eyes.
She was born in Cedar Rapids, Iowa, the first child of David, a police officer and major in the U.S. Army, and Sandi, a high school computer teacher.
At first, Hannah seemed like a normal, healthy baby, but then the seizures started.
"Looking back, we remember things like she always had her fists clenched," David says. "She also never really stared at you for a long period of time. These may have been some indicators."
When she was 3 months old, Hannah was diagnosed with severe migratory partial epilepsy of infancy, an extremely rare childhood disorder characterized by developmental delays and seizure clusters that worsen with age, becoming almost constant. She suffered hundreds a day during the first year of her life, Sandi says.
"We basically lived at the hospital," Sandi says.
Anti-seizure medications helped. The high-fat, low-carb ketogenic diet she was started on around the time of her first birthday helped more. Her seizure episodes dropped to only a few a day.
After a lifetime of medical ordeals, poking and prodding by doctors, the McDills suspect that Hannah's pain tolerance is through the roof.
"They ask me to hold her arm down, 'We've got to stick her,'" David says. "You don't want to have to say, 'Hey, man, she's been poked so many times she's used to it.' It sounds harsh."
But you don't want to think the opposite, either - that she feels it the same each time.
The McDills moved to Colorado Springs in 2008, and David took a job at Peterson Air Force Base. In the drier climate, Hannah's respiratory infections, which had plagued her in Iowa, disappeared.
Soon after moving, David heard a radio ad for "A Daughter's Heart." He knew immediately that it was something he wanted to do with Hannah. Their first daddy-daughter date, in 2009, became a yearly event.
"Hannah likes to get dressed up, but she hates to shop," Sandi says. An unwanted shopping trip can put the girl to sleep. "Her cues are pretty clear."
One year, when Hannah was too sick to go shopping with mom, David brought home six dresses - the "potentials." Sandi held each one up for Hannah's approval, adding a special flourish to her presentation of the dresses she liked best ("Do you like this one? Or do you like thiiiiis one?").
"I like the froufy ones, but she tends to go for the plainer ones. She knows what she likes," Sandi says. "We fully believe she understands what's going on and is fully aware of what's happening around her."
Due to her years in a wheelchair, with no muscle control, Hannah's spine had curled into a near 90-degree angle. In May of 2012, doctors opened her back, inserted anchoring pins in her pelvis bone and fused the length of her spine.
A procedure to remove the kidney stones she developed after the surgery led to an infection and septic shock. "We almost lost her," David says.
Soon after, a severe seizure left her with a fractured femur.
"She's had 13 hospital stays since her surgery," David says. "But she's doing better now."
Now is what matters.
The night before the dance in February, David drove out in a snowstorm to buy her fancy shoes and a jacket to match the silver dress she'd be wearing.
"I just knew black," David says. "Black patent shoes and the bows."
Then, it was Hannah's turn to pick out an outfit for her dad.
"In the past, I've just worn one of my tuxedos, but she wanted me to wear my military dress uniform, with the short military jacket," David says.
David carries her when they dance, swaying at the crowd's perimeter. He holds Hannah like he did when she was a baby, her weight supported in the crook of his left arm, right arm wrapped around her back, her head on his shoulder. When she was an infant, she slept like this on his chest, the top of her head resting at his chin.
The song changes to a more rousing number and David carries Hannah back to her wheelchair, against the flow of the crowd.
For most of the dads here, this event is a chance to spend special time with daughters whose own lives and agendas eventually will take over and take them away - to friends, school, marriage and families of their own.
When she initially was diagnosed, doctors in Iowa told David and Sandi that Hannah was one of only 50 cases of severe migratory partial epilepsy of infancy worldwide. Most children with the disorder die before age 2.
"Now, all the doctors want to study her," David says. "She's beaten all the odds."
Almost a teen now, Hannah is in uncharted territory. David doesn't know long he has with his little girl, but does any father?
It's nearly 10:30 p.m. and David can't believe how awake she is. Last year, they had to leave early because Hannah wasn't feeling well and the music was too loud. This time, though, she seems determined to stick it out. The spinal fusion might have helped with her stamina. It could be the excitement, too.
The song ends and David settles Hannah back in her chair, smooths her hair and her dress, and leans down to her ear.
"You ready to go?"
"You want to dance one or two more slow songs?"
Her eyes flutter, and keep fluttering. Yes, yes, yes.
Contact Stephanie Earls: 636-0364