Remembering Javi
Courtesy: Big12Sports.com
          Release: 08/31/2009
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By Wendell Barnhouse | wendell@big12sports.com
Big12Sports.com Correspondent

The pictures and the video show a happy family - father, mother, two brothers. The main character is the youngest child, a dark-haired charmer with a big smile.

He plays with sidewalk chalk, in bare feet, a band aid on a toe. He playfully bops his dad on the head, holds his mother's hand and shows off a prized-possession sailboat sitting in the window of his room.

You can watch the video here. Watch it and then continue reading.

Javier Santiago Restrepo, the youngest son of Oklahoma volleyball coach Santiago Restrepo and his wife Heidi, died at the age of 4 on July 31. After being diagnosed with leukemia, Javi fought like a warrior for over two years until he could fight no more.

If you watched the video or watch it now, what is so heart-breaking is that Javi doesn't look sick. He looks like a normal four-year-old. Add the lovely lullaby "Godspeed (Sweet Dreams)" by the Dixie Chicks and the tears flow.

"Javi smiled all the time. I called it his cheese smile. He lit up a room," Oklahoma volleyball assistant coach Kelly Files said. "He had passion, exuberance, he was intense, full of life, he had no fear. After everything he went through, I can't even describe how tough he was.

"It's been a roller coaster and a nightmare."

Fate can be cruel and life isn't fair but those words also don't describe what the Restrepo family endured starting with the first diagnosis of Javi's leukemia over two years ago. The news was devastating, but the doctors believed the chances of survival were great.

Massive doses of chemotherapy sent the monster into hiding. The cancer went into remission. Javi regained his strength and energy.

Last summer he started feeling sick again. The leukemia was back. The treatment was more chemo to pave the way for a bone marrow transplant from older brother Diego.

More bad news. Aside from having its intended effect, the chemo damaged Javi's liver so that he needed a transplant. Javi spent two months in a Delaware hospital. The transplant was a success and in March Javi returned home.

Again, signs were positive. Javi again strengthened and improved.

Then came a check-up in mid-July. The leukemia was back and half of Javi's bone marrow was infected. The doctors had no more answers, no options.

"I remember seeing Santiago after he took the phone call," said Files, who has known Restrepo for eight years. "I could see it in his face. Seeing Santiago and Heidi feeling helpless … horrible … horrible, horrible, horrible."

Oklahoma assistant athletic director Dr. Nicki Moore, who oversees volleyball, has been through her own personal tragedies. Pregnant with twins last summer, she lost one baby at 21 weeks. Last week, her mother died of cancer. Through all that, seeing Javi and his parents perseverance provided sunshine.

"I wouldn't necessarily say it's been difficult," Moore said. "For me, it was more inspiring to see his parents do whatever it took to take care of him, anything they could to help him get better. I never saw them feel sorry for themselves. They had a dogged determination to press on and make the most of every opportunity."

About five days before Javi died, Moore remembers seeing Heidi go into "mom mode" when Javi was being possessive of a toy and keeping it from his brother. When OU mascots Boomer and Sooner visited, Heidi saw her husband tearing up. "You've been watching too many Lifetime movies, mister," she chided.

Moms have to be moms and life goes on even if life comes with burdens that seem unbearable.

If grace in the face of pressure is commendable, what is grace in the face of unthinkable tragedy? Heidi Restrepo attended the funeral of Moore's mother in St. Louis. Less than a month after attending her son's funeral, how much strength and faith did it take to attend another funeral?

"Grace. I can't think of a better word to describe how Javi and his parents handled things," Moore said. "They're dealing with the grieving process in a graceful way."

Moore says that being able to reach out and help Javi's family helped her deal with her mother's illness. When it became clear that Javi's days were numbered, those in the Oklahoma athletic department felt desperation.

"We're all 'fixers.' We want to make things right, get things done," Files said. "We had always looked for the positive, that there was always a chance. We didn't want to hear that there was nothing you could do."

There was nothing anyone could do but that didn't mean people didn't try.

The athletic department organized a mini-Olympics for Javi. He ran the bases at L. Dale Mitchell Park, played football at Owen Field, dunked a basketball (with help) at Lloyd Noble Center, kicked a soccer ball at John Crain Field. Sooners Sam Bradford (football), Gerald McCoy (football), Garrett Buechele (baseball), Whitney Hand (women's basketball) and Ryan Wright (men's basketball) were among the Sooners athletes who helped with Javi's Sports Day.

"He had to wear a mask and stay inside for almost two years because of germs, the possibility of infection," Files said. "For one day, he got to run around and play like a little boy."

Oklahoma football coach Bob Stoops, hearing that the Restrepos were making two-day drives to Delaware during Javi's liver transplant, paid for a private jet for the trips. And after the final, fateful diagnosis, Stoops again paid for a private jet to send the family to a Florida beach for a one-day getaway.

Oklahoma women's basketball coach Sherri Coale arranged for a portrait photographer, Shannon Ho, to spend time with the Restrepos to take pictures and produce the video linked to earlier in this story.

Oklahoma athletic director Joe Castiglione arranged for family members to be flown to Norman for Javi's funeral.

The priest who had married Santiago and Heidi and had baptized their sons, flew in from Ireland to conduct the services. What shouldn't happen - a funeral for a four-and-a-half year old - was an affirmation of life and perspectives.

"There was peace in that Javi is in heaven, he's playing and he's having a good ol' time," Files said. "He's not having to fight anymore, he's not in pain."

The start of another volleyball season seems trivial in the wake of a family's loss and grief. Santiago Restrepo's players and assistant coaches have supported him as he has lived through a father's worst nightmare. They'll wear special patches on their uniforms as they dedicate the 2009 season to Javi. Conference volleyball officials also will wear special patches when they work OU matches. Life - academics, athletics, laughing, crying - goes on.

"There are constant reminders of him," Files said. "Santiago and Heidi want people to know what he went through, the grace that he had, that he kept fighting. That's our motto, we've got to fight every day.

"We think about him every day. I think about him every day."

The Dixie Chicks: "Godspeed, little man … sweet dreams."

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