Results tagged ‘ spina bifida ’
Want to know what motivates Javier Baez? It’s his “miracle” sister, Noely. On Christmas day, Javier will gather with his family to celebrate, just as others do, but for them, every day is a holiday because of her.
“[Christmas] is very, very special,” Baez said. “When my sister was born, doctors said she wouldn’t last 20 minutes, that she wouldn’t last from one room to another one. Last November, she turned 20. Every day is special.”
Noely Baez, 20, has spina bifida, the most common permanently disabling birth defect in the United States. It literally means “split spine,” and happens when the spinal column does not close all the way. Noely can’t walk, but that’s about the only thing she can’t do.
“She’s very, very independent,” Javier said from his Jacksonville, Fla., home. “That’s why I don’t like people to feel sorry for us. She’s very independent. When we’re in the house, we cannot touch her wheelchair. If we touch it, she’ll lock the wheels, and say, ‘No, don’t push me.’ She wants to do it by herself.”
Javier and Noely and their two older brothers were born in Puerto Rico, but the family moved to the U.S. so Noely could get better health care. Before arriving in Jacksonville, they were traveling three or four times a month to the U.S. for treatment.
Javier and his two brothers developed a love for baseball because of their late father, Angel Luis Baez. He died when Javier was 10 years old.
“He was a big part of my life,” Baez, 21, said of his father. “I like people to know who he was in my life.”
Angel Baez worked with a landscaping company in Puerto Rico, which meant long hours and tough, physical labor.
“He was one of the most amazing dads,” Baez said. “He got home from work at 6 o’clock at night, and he’d get to the house and take us to the field almost every day. He was really important in our lives. He is a special person in our history.”
So is Noely.
“We don’t see her as someone who is different from us,” Javier said. “She’s a miracle for us. She’s a miracle in our lives. We don’t feel sorry for her, like, ‘Oh, we have to do this for her.’ God put this miracle in our lives and He did it for a reason. There’s no time for us to feel sorry about it.
“When I was a little kid, and I didn’t understand her situation, yeah, I thought, ‘Wow, we have a handicapped sister’ and it’s hard for my mom,” Javier said. “Once I started growing up and lived with her everyday, I realized this is not hard for us. God gave us this miracle. That’s what she is, a miracle. She’s in our lives for a reason.”
And Javier Baez wants to do what he can to raise awareness of spina bifida. Last winter in Jacksonville, he hosted a pizza party for local children with spina bifida. When the Smokies played against the Suns in a Minor League game in Jacksonville, Baez invited the children to attend.
It was quite a day. On Aug. 6, Tennessee’s Eric Jokisch threw a no-hitter in a 10-0 win. Baez went 4-for-6, hitting two doubles, driving in three runs, stealing a base and scoring three runs. He also helped save the no-hitter with one out in the ninth by making an acrobatic play when he dove and caught a ball behind the second base bag.
“They saw me, and they were excited to watch me play but I was more excited that they were there for me,” he said of the kids.
He’s hoping to do another event for the spina bifida children in Jacksonville before he heads to Arizona to begin Spring Training. This will be his second season in the Cubs’ big league camp, and Baez already feels more at ease.
“I learned everything [last spring],” he said. “I was looking around to see what I could get from the other guys, the big leaguers. That’s my goal to get where they are. I’m a real quiet person on the field, but I’m always looking around and picking up stuff from everybody. I’ll feel comfortable once I get there next year because I’ve been there already. I’ll continue to learn from everybody, from the new guys who come in to the veterans. I learn from everyone.”
This offseason, he was reminded once again how fragile life is. On Oct. 13, Baez tweeted, “Pray for my sister please.” Noely had to be hospitalized.
“We thought we were going to lose her,” Baez said.
His sister’s lungs stopped functioning, and for three weeks, she was on a ventilator. The doctors finally decided to take the ventilator out.
“God put his hand on her,” Baez said. “She stopped breathing. They said, ‘We can’t do anything else. We have to see how she’ll react.’”
She survived, and it’s taken some time for Noely to get her strength back, to be able to eat solid foods. She plans on going back to school in January, and has made it clear she doesn’t need her mother to take her to school. As Javier said, Noely feels she’s old enough to go by herself.
“I go places and people ask me, ‘Oh, I heard about your sister — what does she have? What’s happening to her?’” Javier said. “People don’t know [about spina bifida]. Sometimes I talk to people about it, and I have to explain what it is. People still don’t know.”
What Baez does know is that when the Cubs do promote him to the big leagues, he wants Noely there. Not only does he have a tattoo of the MLB logo but also one for each of his brothers and his miracle sister.
“We celebrate Christmas and it’s a very special season, but for us, every day is special,” Javier said. “Every day we wake up and see her laughing and playing around, and it’s special for us.”
– Carrie Muskat