Andy Milian’s wheelchair is the biggest I’ve ever seen. It’s almost more of a mobile bed than a mobile chair. His posture is contorted, a permanent condition as a result of his cerebral palsy. His mother, Lilly, crouches down to his level, puts her face close to his, and says, “Hey, big guy.”
Andy turns his head slightly to the right, so that his cheek lays flat against the cushion behind his buzzed head. For someone not accustomed to Andy’s mannerisms, any response he makes could be either misconstrued or go undetected. Lilly says, “Hey, big guy.” She smiles at her son and shakes his arm. Andy makes a gurgling noise. His eyes look like they’re rolled back in his head. Lilly shakes his arm again and he gurgles. She says this noise is compatible with a laugh.
Lilly’s other children, Bianca, 11, and Marco, 8, are also standing over their big brother. Bianca, a spitting-image of her mother with olive skin, black hair, and coffee-brown eyes, smiles at her brother and says, “Hi, Andy.” Marco is more standoffish. His arms rest behind his back, one of his palms gripping the forearm of his other arm. Lilly says Marco fully understands Andy’s condition, recognizes that Andy is different from other children in several fundamental ways. But she also says Marco has trouble interacting with his brother.
“I don’t like doing baby-talk,” Marco says. “Andy’s twelve.”
Lilly smiles at me uncomfortably. Then she turns to Marco. “It’s not baby-talk, son,” she says. “It’s just the way we have to talk with your brother.”
Marco crosses his arms. None of his friends have ever met Andy, and as far as he knows, none of them have a big brother like Andy.
“It’s weird because you can’t really talk to him,” Marco says.
Andy can’t talk. He has hypotonic cerebral palsy, the most sever and restricting kind of CB. He can only move his mouth, his eyes, and in very limited capacities, his neck and torso. He is also profoundly mentally retarded, having an IQ below 20. The crazy thing is, though three weeks premature, Andy was born seemingly healthy. For the first eighteen months of his life, he was a completely healthy baby boy. Lilly had no idea that the relationship she had to her first-born would change so drastically in a matter of months.
“At first, it was wonderful,” Lilly recalls. “He was so cute. He was so full of energy.”
But then, Andy started getting sick. And he lost control of his limbs. His tiny arms and legs would spasm violently, Lilly recalls.
“Then all of a sudden he couldn’t crawl or move hardly at all,” Lilly says. “We took him to the doctor and they ran tests and discovered he had cerebral palsy.”
Sadly, Andy’s cerebral palsy was a combination of being born 3 weeks prematurely and trauma suffered at birth.
“The doctors screwed up,” Lilly said. “When he was born, they said he had suffered some trauma, but they said he would be fine.”
Obviously, they were wrong. After eighteen months of life, Andy’s development would never become fully realized.
“It was the worst time of my life,” Lilly says of those first weeks and months following Andy’s diagnosis. “I was so angry and I cried at some point every single day for almost a year. I just couldn’t accept that my son could never be like other children. I resented doctors for a long time.”
Lilly and her then-husband, Ernesto, filed a lawsuit against the doctors who delivered Andy and were rewarded amply. Andy would receive all the free treatment he needed. An in-home nurse for Andy would be provided free of charge. The Milians even received a full-sized van complete with an electronic wheelchair ramp for transporting Andy.
“It’s been a blessing to have the care Andy needs,” Lilly says. “I love my son so much, and he is so important to me, and I know without winning that lawsuit I would never have been able to afford the level of care Andy needs.”
I ask Lilly a hypothetical question. “What would your relationship be like with Andy had you not have won the lawsuit?”
The question catches Lilly off-guard. Her eyebrows furrow, and a stern expression of thought spreads over her face.
“I don’t know,” she says. “It would be much more difficult.”
Lilly pauses, then says, “To be completely honest, the help we get makes my relationship with my son easier. It enables me to be a mother to him and still have my own life.”
“How is your relationship to Andy different from your relationship to your other children?” I ask Lilly.
Lilly smiles and sighs. “Well,” she says, “the easy answer is that Andy requires more attention than Bianca or Marco. But to go a little deeper, I guess the main difference is that my relationship with Andy is on a very basic level. Because of his disability, his understanding of things beyond his immediate needs and surroundings is very limited. I’ll never talk to him about what he wants to do with his life, what career he’ll pursue. I’ll never talk to him about the birds and the bees.”
There is only a trace of sadness in Lilly’s eyes. Today, the often sad truth of her son’s future does not overwhelm her. Still, Andy’s condition is a hard situation for his mother to accept.
“Bianca and Marco can grow up to be anything they want,” Lilly says. “They are both smart and have the potential to do anything. Andy doesn’t have that opportunity. I guess my relationship to him is one of service. I just want to do everything I can to make Andy’s life the best it can be, whatever that might be.”
Today, Lilly is a 37-year-old single mother of three children. She divorced her husband a little over a year ago.
“With my ex-husband gone, Andy is the man of the house,” Lilly jokes.
She is currently unemployed because she is attending Western Iowa Tech full-time. She is pursuing psychology with the hopes of becoming a therapist someday.
“It’s really hard trying to balance it all out,” Lilly says. “I want to do really well in school, and that requires a lot of time, but my children are the most important thing in my life.”
Bianca smiles at this.
Bianca is eleven and is currently in sixth grade. She excels academically and has always gotten A’s. One of her main interests is in music, and she plays the trombone in band. I asked her what it was like to have Andy as a brother.
“It’s okay,” she says, not sure how to take my question.
“Do you love him?” I ask her.
“Yeah,” she says, nodding her head. “He’s my brother.”
Bianca glances at her brother Andy. He appears to be asleep.
“Do you help take care of him?” I ask Bianca.
“Yeah,” she says. “I talk to him and play with him and help with feeding him and stuff.”
“Do your friends know about Andy?” I ask her.
“Kind of,” she says. “Only two of my friends have ever met Andy in person. But my friend Jessica knows Andy really well.”
I want to ask Bianca what it means to know Andy really well, but I don’t. Instead, I listen to Lilly talk about Andy’s future.
“I don’t know how long he’ll live,” Lilly says. “The doctors didn’t think he’d live as long as he has. There were several times when he was a baby where we thought we’d lose him. But he’s made it this long.”
“We just don’t know how long he has,” Lilly goes on. “It could be really soon. It could be years from now. But however long it is, he’s being taken care of and I’m doing the best I can to make him feel loved.”
Marco has run off to his room to play video games. Lilly and Bianca remain by Andy’s side, quietly watching him sleep. I take a few steps forward and join them. Standing this close, I can hear Andy snoring softly.
“Can he dream?” I ask Lilly.
“I don’t know,” she says.
She puts her arm around her daughter. Bianca gratefully accepts it and leans her head against her mother’s side.
I look at Lilly.
“This is it,” Lilly says. “This is my life. It’s who I am.”