This article originally ran in The (Wilmington, Del.) News Journal  on March 27, 2005. It is reprinted here with the kind permission of the paper.

'I was determined to win it for her'

Lizzie DelleDonne inspires her sister and brother

By DOUG LESMERISES / The News Journal

03/27/2005

Lizzie knows she is in a strange, new place.

She is here because this has been a good day.

A few hours ago, her sister received the call that Lizzie was coming to the game. It is her first time at one of sister's basketball games.

"I was real nervous before the game," said her sister, "but when my mom told me Lizzie was going to make it, for some reason it gave me motivation. I was really determined to win it for her."

This is a blessing, and exceptional timing. No one ever knows with Lizzie. The days don't blend together with any certainty or expectation. A day of smiles with her family, of real progress with her teacher, can crash into chaos with the next sunrise, Lizzie panicked and clinging to her bed.

"When Lizzie has a good day, the house has a good day," said her mom. "When Lizzie's not having a good day, the house has a horrible day."

Lizzie is less than a month from her 21st birthday. She is blind and deaf. She has autism and cerebral palsy, and was never expected to walk on her own. Now she can make 20 feet sometimes with her cane.

Tonight, her mother pushes her in her wheelchair through parts of the first half. The large walkways at the Bob Carpenter Center allow that. Lizzie would rather be outside, like she has been for some of her brother's football games. But she has her comforts here.

On a couch in a lounge at the top of the arena, Lizzie reaches for her mother's head, pulling it down until she can bury her face in her mother's hair and inhale deeply. Touch and smell connect her to the world.

In her hands, she feels the sign language symbol for pretzel and for cookie. She'll eat. Lizzie knows about 40 signs, the hand-to-hand strokes and movements her form of communication. Many of the symbols are for food. Lizzie understands only what directly affects her. She has learned "mother" and "father." She and her teacher are working on creating signs for her brother and sister.

For her brother, it's the sign for muscle.

Her sister is represented by an index finger dragging from the base of her palm up to her fingers.

It's the sign for tall.

Her sister is 6-foot-4 Ursuline freshman Elena DelleDonne, one of the best high school basketball players in America and the Delaware Sportswriters and Broadcasters Association's girls basketball player of the year.

There are 4,800 fans at this game, the state championship, the largest crowd ever for a high school girls basketball game in the state.

They all know Elena DelleDonne is a star.

All of them but Elizabeth DelleDonne.

Lizzie can't know.

Elena, 15, is the second DelleDonne selected as a player of the year. Her brother, Gene, 18 and a senior at Salesianum, was named offensive player of the year during football season.

Many people don't know there is a Lizzie.

"I'll say I have two sisters," Gene said, while sharing one of the couches in the family's stately Centreville home with Elena, "and, of course, everyone knows her. But they're like, 'Oh, you have another one?' They're totally oblivious that I have another sister."

They don't know because Lizzie so often isn't a part of the hectic high school lives of her siblings outside the doors of her home. Out there, teams revolve around Gene and Elena, and the attention of the sports community, good and bad, is ever present. They are on the radio and in the paper, their names on the lips of fans and rivals every week.

Drive the one-quarter of a mile down the winding, lighted driveway, step through the daunting black double doors at the back of their home, into the entryway with the arching staircase, and Lizzie is in control.

Ernie, her father, is 6-foot-6, Gene 6-5, Elena 6-4, and her mother Joanie is 6-2. Their sleek Great Dane, Champ, weighs 175 pounds and gallops over the hardwood floors like a horse. Everything about the DelleDonnes is bigger than life.

At 5-8, her black hair held in two ponytails by pink scrunchies, Lizzie is in complete control.

"People would think Gene and I are the center of this house," Elena said, "but it really revolves around Lizzie."

On the bad days, when Lizzie is frustrated and acting out, and no one knows if it's a sinus headache or a tethered spinal cord, they may all have to hold her down. There are days she won't stop crying, times when the kicking and hair-pulling and thrashing show off her surprising strength. After her corneal transplants - Lizzie has had seven in continuing attempts to allow her to see some light and shadow, with the effects always fading - they took shifts holding her arms at her side so she wouldn't scratch them out.

The inner turmoil is her greatest challenge, far more of a test than what she can't see or hear. There are days when something happens inside Lizzie, and it's then that her inability to explain it can wreak havoc. During last basketball season, she slept for six weeks, waking only to eat. There was fear it was a brain tumor. It wasn't. One day, she just came back to them, the family knowing too well to hope for an explanation.

The bottom floor of the house is Lizzie's domain. It's where she has her bed with the vibrating pillow, her sun lamp and her hot tub, the jets and soothing heat relaxing her even on those days when her body won't stop shaking.

Lizzie sets the dinner menu. She puts her hands under those of her parents or teacher and makes the sign for steak. Sometimes, the family has it four times a week, and when Lizzie is especially hungry, everyone cuts off a portion to share with her, because no one knows when she'll want to eat again.

Gene swims with Lizzie in the hot tub and pool. Ernie lies down and snuggles with her on the couch. Joanie rests her head in Lizzie's lap for those deep breaths. Elena spins Lizzie around the property in a golf cart, the breeze in their faces.

"She'll smile or wave her hands," Gene said. "It's kind of like the best feeling you can have."

"It's that feeling that we're making her happy," Elena said, "that we're making an impact on her life."

Sandy Robeson, Lizzie's teacher, comes each day from 9 a.m. to 2 p.m. for school. Lizzie's challenges are so great, and in such a rare combination, the state provides her a one-on-one tutor at home, though that will end soon after she turns 21. Robeson calls Lizzie the most exciting and exhausting challenge of her 18-year teaching career, a jigsaw puzzle that can change just as the pieces start to fit.

Liz Nguyen, her caregiver for nearly 13 years, arrives at 2 p.m. and stays until 7, and on Saturday is there for Lizzie from 10 a.m. to 7 p.m. This is Nguyen's full-time job, and more. When Ernie and Joanie travel with Elena to a national AAU basketball tournament, or when they will want to watch Gene play at Duke, Nguyen takes Lizzie into her own home for days at a time.

"You can't not fall in love with Lizzie," Nguyen said. "I've been around so long, it's like she's my baby, too. If they let me, I'd bring her home for good. But they love her too much. They always say she's their inspiration. Elena can play with a hurt hand because Lizzie can just get through life."

The help allows Ernie and Joanie to be present in the lives of Gene and Elena in ways they couldn't be otherwise. Everyone calls Nguyen a godsend, and refers to Robeson as Lizzie's Anne Sullivan, the teacher for Helen Keller.

They are invaluable bench players. But they can come out of the game.

The DelleDonnes are their own starting five.

"It's like we're a team at home," Elena said smiling, "and Lizzie's the all-star player and everyone has to worry about keeping her well. We all have our roles in the family.

"She's the one who keeps us humble in the family. OK, I won a state title, but she wasn't supposed to walk, and look at her now. So, she really overshadows everything I've done in my entire career."

No average family

Life with a teammate like Lizzie affects every other relationship in your life and changes how you feel about a game.

How can the DelleDonnes fear pressure created by a scoreboard and a clock when every game and practice, the opportunity to fully commit two hours to a sport, is a relief and a reward?

You hear stories of players who compete while a friend or family member struggles in a hospital, about how they can "focus" through a "distraction." The worry over Lizzie never leaves.

Lizzie has undergone more than 30 surgeries in her lifetime. After a seizure on Thanksgiving, Ernie and Joanie raced her to the neurologist, leaving Gene and Elena with a turkey cooking in the oven.

"You never know if you're going to get a phone call that Lizzie's in the hospital," Elena said. "So, that's always on your mind. And, of course, when we leave and she's not having a good day, you think about how your parents are doing at home with her, if they need any help."

This is life as Elena and Gene know it. Even as preschoolers, there was never time to throw a tantrum over the color of your lemonade, not when your sister couldn't see the pink or yellow, hear the clink of the ice cubes or raise the glass to her mouth.

The wealth provided by the real estate development company Ernie started with his father 24 years ago affords the DelleDonnes solutions to problems other families would be denied. Though Lizzie's list of issues is unique, the DelleDonnes know handicapped children who can't enjoy the simple pleasures, like a warm brownie and glass of milk, that make Lizzie happy.

For 2 1/2 years, hospitals and doctors and anger and the heartache that came every time they saw a healthy child, was all that Ernie and Joanie knew. One day, they looked at a squirrel scanning for acorns and thought the same thing: That squirrel can see, and our daughter can't?

Then came Gene, Ernie scared to death for his arrival, because the doctors could offer no reason for Lizzie's handicaps. For the same reason, Joanie felt no fear. In another 2 1/2 years, Elena arrived.

"We got to experience the normal life of being parents," Joanie said. "All that anger and the 'poor me, poor me' goes away. It's not even that they're doing amazing things. It's that two healthy kids came along. It made everything make sense. And then you see what [Lizzie] brings to the family, and you almost think, we're the lucky ones because we have the best of both worlds. We have this special child who brings something special to our family that other families don't get to experience. But it wasn't that way in the beginning."

There are times when Joanie thinks of the natural physical gifts two of her children were blessed with, and all the burdens Lizzie must bear, and she can only laugh at the extremes. There is no such thing as average in the DelleDonne home.

None of them can see it any other way.

"I don't want pity," Elena said.

"We do have a great life," Joanie said.

"There's no place I would rather be," Gene said. "I wouldn't want it any other way."

Championship feeling

Lizzie can't see it. Lizzie can't hear it. But when the arena is sold out like this, the drums beat and the cheers of thousands rattle the gym, and Lizzie can sense the vibrations. The hands and the voices of her sister's fans reach into her chest.

There's another 3-pointer. More cheers. Her sister is speaking to Lizzie with every basket, the fans carrying the message from the court to the top of the stands.

"There are athletic heroes," said Dr. Charles Bean, Lizzie's neurologist since she was born. "But I believe there are other kinds of heroes - those who create a safe place for others to grow and develop. No one applauds, and no one sees it, but this family and those two kids have created a safe place for their sister."

On this night, Elena leads Ursuline to a second consecutive state championship. With DelleDonne averaging more than 26 points per game, the Raiders finish 25-1, ranked in the top 20 in the nation.

Lizzie can't know any of that. She's wearing a red T-shirt that reads "#11's sister." Yet, Lizzie can't know.

After the final seconds tick off, Elena runs up the 47 steps to greet Lizzie at the top of the arena. Then Lizzie sits in her wheelchair at the corner of the court as the Raiders cut down the net and Elena is filled with as much joy and accomplishment as any 15-year-old could be. Lizzie came, and that allowed Elena to win for herself, too.

Someone calls it a miracle that Lizzie made it all the way through the game.

This is a good day.

Contact Doug Lesmerises at dlesmerises@delawareonline.com.