From the moment Sonia Alvarado saw her son, Luis, in a hospital bed in Landstuhl, Germany, she knew that her family’s life would never be the same.
Army Sgt. Luis Alvarado, then 25 years old, had been severely injured in a blast near Kandahar, Afghanistan, on Nov. 14, 2011. Sonia and her husband, Julio, rushed from their home in Illinois to be at his side.
“Oh my God, when we saw him it was just horrible,” Alvarado said. “We just couldn’t believe it. He was so swollen. He has always been a tough guy, a big strong guy with big arms, you know, big muscles, but this … It was right there at that moment when we saw all the stuff that was happening to him, I said ‘If he survives all this, our lives are changing completely because we have to dedicate our lives now to take care of him.’ And so we made the commitment right there and then.”
The Alvarado family has kept that commitment. Nearly five years later, Sonia, Julio and their daughter, Mariana, are Luis’ caregivers. Every day, beginning at 5 a.m. and ending at midnight, they tend to their son and brother, taking care of his every need. Luis can’t speak, but that doesn’t stop them from communicating with each other.
But this in-home care was hard-fought. Almost every doctor and counselor around Luis’ parents told them he would have to be transferred to a facility that could provide round-the-clock care.
“We heard their speech and then finally I said, ‘OK, now you’re going to listen to me. If you put this kid in a nursing home you’re signing his death sentence. He’s not going to an institution. He’s coming home,’” Sonia said.
The Alvarado family’s efforts on Luis’ behalf were so exceptional they were recognized by the Elizabeth Dole Foundation, whose mission is to strengthen and empower American military caregivers and their families by raising public awareness. The Elizabeth Dole Foundation recently launched a comprehensive caregiver registry that features helpful resources and support. The registry is funded by USAA and other major sponsors. Sonia’s family is featured on the registry website at www.hiddenheroes.org, and she was able to attend the ceremony in Washington, D.C.
Sonia became deeply involved in the Elizabeth Dole Foundation and eventually became a fellow.
While her role at the foundation has many facets, her main focus is connecting other caregivers with the foundation to let them know there’s an organization looking out on their behalf.
“But some people are afraid. They don’t want too much exposure because they are afraid their loved ones will be taken away from them if they don’t follow the rules,” Sonia said.
“There are a lot of misconceptions about caregivers, so my job is to help them,” she added. “I’ve been connecting them with Homes for Our Troops. Two of those families will be getting a home as well. We’ve been trying to help others connect with different agencies to make their caregiver job a lot easier.
“At the same time, we connect caregivers and the mission of the Elizabeth Dole Foundation with our representatives here in town. We meet with different government officials to share with them what the foundation is doing for caregivers,” Sonia said.
“It’s helping us to become more visible for people, because a lot of people, they don’t realize how many of us are in this nation. That’s why they call us the hidden heroes, because nobody knows. We can form connections and at the same time be able to help each other, which is an amazing thing.”
Inside the Life of ‘Hidden Heroes’
Luis and his sister are first-generation Americans. Their parents – Sonia, 52, and Julio, 60 – were both born and raised in Guatemala. They came to the states in 1979 and 1981, respectively. They met in Chicago and were married there and both are United Methodist pastors.
“Luis joined the Army when he was 17 years old,” his mother said. “He was one of these kids that, after 9/11, decided to go into the Army. He quit regular high school and he enrolled in an accelerated high school so he could finish early. He was so eager to join the Army and he loved it.”
Luis, an arms specialist, achieved the rank of sergeant.
“He was one of these kids that started moving faster and faster in the ranks. He loved it. He was one of the youngest to achieve the rank of sergeant,” Sonia said. “He always wanted to make the Army his career, his life. He did multiple enlistments, against our better judgment. It’s what he wanted to do.”
Luis was stationed at Fort Wainwright, Alaska, when he deployed to Afghanistan. He had previously deployed twice to Iraq.
“He never talked a lot about his deployments,” Sonia added. “When I called and asked him how things were going, he’d tell me, ‘Oh, things are going well, Mom. You should see the beaches here. It’s nice and sunny and we have time to relax.’”
His mother knew better.
“No,” she said, shaking her head. “There’s no water. There’s no relaxing. He would always tell us the positive things, the best of whatever situation he was in. There were a couple of times when we were on the phone and I would hear this ‘boom, boom’ in the background and I asked ‘What’s going on?’ He would say ‘Oh, we’re celebrating with fireworks.’ He didn’t want to worry me. He always wanted to make sure that I knew that he was safe – that was the main thing for him.”
Sonia said Luis insisted on treating his soldiers with dignity and respect. He didn’t like yelling at them, like he had been yelled at in boot camp. His biggest concern was having someone injured under his watch.
“He said ‘I could never forgive myself if that ever happened.’ He was very diligent,” Sonia said. “He would tell me, ‘I’m safe and I’m doing what needs to be done and I take care of myself and my men.’”
But his mother still worried, and when Sonia and her husband got the fateful phone call nearly five years ago, their worst fears were confirmed.
“We got the phone call at five o’clock our time, and they told us he was injured,” Sonia said. “I remember the young voice on the other line just trying to tell me he was injured. I couldn’t hear anything else of what he was trying to tell me because I kept interrupting him. My question was, ‘Is he alive?’ That’s all I needed to know. When I found out he was on his way to the hospital I knew he was alive.”
Once Sonia stopped interrupting the caller, she was able to find out what happened to her son. His platoon had been on foot patrol when he decided to go ahead. They were going into an unsecure field and he didn’t want anyone else to go with him.
“That’s when the explosion happened,” Sonia said. “Some of the soldiers who were with him said there was a white pickup truck in the distance, and so they think it was manually detonated – not that he was standing on it and activated it – because as soon as that explosion happened, the truck just took off. They believe they were targeted.”
The explosion knocked some of the soldiers on their backs but no one was injured. No one but Luis.
“When the dust finally settled they started calling each other by name to see who was injured, and so they started calling him and he was answering. He was awake. He was aware of what was going on,” Sonia said. “They told him, ‘Sergeant, you’re bleeding and so we’re gonna get the medevac here.’”
In his usual joking manner, he started to kid around with his friends.
“He told them, ‘Oh, you guys are making too much out of this. Give me a few Band-Aids and let’s get on with the mission.’ And they said, ‘No, no, you require more than Band-Aids.’ Finally they were able to bring in the evac, and so they put him in the chopper. He was still making fun. He was fully awake and knew what was going on. He was on his way to the hospital at Kandahar, and he had a heart attack and he was so bad that they had to open up his chest and manually massage his heart to keep him alive,” his mother said.
Once Luis arrived at the hospital, they were able to stabilize him and stop some of the bleeding. They put him in an induced coma and started preparing him for transfer to Germany. In the meantime, his parents were awaiting word from the Army. When they found out where he was headed, they decided to get on the next flight to Germany.
“The gentleman I was talking to said, ‘Oh, no, you can’t, because we have to make sure he’s going straight there and not to the states. We don’t want you to cross oceans,” said Sonia, who was quickly losing her patience with the Army’s way of doing things. “I said, ‘I don’t care. I’m going to where he is.’”
The Alvarados arrived in Germany at nearly the same time their son’s plane touched down. After realizing what lay ahead for them and making their commitment to take care of him, they became vigilant protectors of Luis.
“Since the moment that we got to Germany we have not left his side,” Sonia said. “We insisted that we needed to come back with him on the plane back to the states. And you know the rules – they allow one family member to fly with them, not both. And I told them, ‘We are not leaving him. Tell me who I need to call, who I need to fight with, who I need to argue with, but we’re both flying with him.’ And so they let us.”
Once they arrived at the San Antonio Military Medical Center, the surgeries began for Luis.
“He had surgery almost every day, sometimes twice a day, trying to clean all the debris, trying to make sure there was no infection,” Sonia said. “Unfortunately a fungal infection got into the right leg, and so they had to go back and cut more and more until he finally lost the whole leg to the hip. The left leg they were able to save so the left leg is amputated above the knee. But the explosion also caused some severe burns on his back, so his whole buttocks and that part of his back – he doesn’t have muscle, he didn’t have skin there. Now, he has a tiny little layer of skin; it looks like baby skin. It’s so thin, that we really need to keep an eye on him to make sure there are no pressure points.”
Alvarado said the brain surgeon in Germany told them the pressure in his brain was minus one.
“That doesn’t happen. How can it be minus one?” Sonia asked. “You know, when we got to Germany they only gave him 36 hours of life, because of opening the chest. The doctor said, ‘This kid’s not going to survive. He only has 36 hours.’
“And so we were in the room and we told him, ‘Luis, Mom and Dad are here.’ Tears just started rolling down his cheeks. I said, ‘He knows we’re here, he’ll be OK.’ In working with him, we told the doctors, ‘God is not done with Luis, and Luis is not done with this world. Because otherwise he would have died, if not in the field, then riding on the copter. There’s something out there for him, so you do what you need to do, and let God and Luis do what they need to do,’” Sonia recounted.
Doctors don’t know what to make of Luis’ mental state, but that doesn’t phase his parents.
“My husband and I have labeled it emerging consciousness,” she said. “The doctors, they don’t see it like that. Some label it a vegetative state but he’s not in a vegetative state because he communicates with you. He’s aware of his surroundings. He knows what’s going on, so now the diagnosis is minimum state of consciousness. They don’t want to call it emerging consciousness because they don’t see him how we see him. They only see him for 10, 15 minutes once every three months. They don’t see him smiling. They don’t see him laughing. They don’t see him laughing at my husband’s jokes. They don’t see him interacting with the family, so they cannot give the correct diagnosis.”
Sonia said her son can be stubborn when it comes to listening to his physicians.
“Luis has always hated people telling him what to do,” she said. “So when we go to the doctor’s office and they tell him, ’Luis do this, Luis do that,” he hates that. And we keep telling them that they can’t talk to him like that because he’s not in the Army any more. He’s not going to respond to you like he used to when he was in the Army.”
“If you want him to do something, talk to him like a regular person and then give him time because his brain doesn’t function the same way as yours or mine,” Sonia added. “Now his brain is taking a few minutes to process the command and come up with a response for the command,” she explained.
Sonia said the team of doctors and nurses working with Luis at the VA have been great to work with.
“Luckily we have a nice team, a nice group of doctors and nurses that are working with us and we’re working together. That makes our job as caregivers a lot easier,” she said.
Luis’ mother spent several years commuting back and forth between San Antonio and Chicago, while her husband stayed with Luis the entire time.
“I made the final decision to move here in June 2015. That’s when I said I just can’t keep doing both,” she admitted. “It was taking too much. I wasn’t being faithful to either one. The church in Illinois was so gracious. They worked with us. They hired someone part time to come in and do my work while I was gone, and kept paying my full salary and my husband’s full salary while we were taking care of Luis. But I said, ‘We can’t keep doing this.’ The church requires time. It requires care and I wasn’t able to give them that.”
The Alvarados now live in a spacious 1.6-acre house near Bandera and Loop 1604. The home was a gift – an answer to their prayers. A friend of Luis’ was visiting him at SAMMC when he asked Sonia, “Have you heard about Homes for Our Troops?” She immediately Googled it.
“I started reading the mission and what they were doing for wounded warriors and so I got on the phone, and explained my situation. At that time Luis was still in the hospital. They said ‘Well, fill out the application and we’ll work with you.’ We did and everything started falling into place and last February we had the key ceremony,” she said.
But finding a handicapped-accessible home in the meantime was a challenge.
“The VA told us once Luis is ready to come home you need to find a place and if the house is not ready then he will have to go to an institution. And I said, ‘Over my dead body. He’s not going anywhere but home.’ So that was another fight with doctors and nurses. His wounds, his injuries, require a lot of care and they told us, ‘You and your husband are not equipped to take care of him.’”
One afternoon the Alvarados met with a VA representative, social worker, one of the doctors, his main surgeon, and two nurses. They came prepared to tell the couple that Luis needed to go to an institution.
The staff members argued and told the Alvarados they didn’t know how to take care of their son, and they didn’t have a house to bring him to.
“I told them, ‘Don’t underestimate me. You don’t know me. Tell me when he’s going to be ready to go home and the house will be ready,” she said. “‘Show us what we need to do and we’ll take care of him. If we have to be trained, train us. If we don’t have the tools, equip us. Help us,’” she said.
The team of doctors and nurses insisted that their way ahead was Plan A and there needed to be a Plan B.
“And I said no, ‘Plan A, B, and C is coming home. There’s only one plan. Nothing else,’” Sonia said. They finally convinced the staff, and were able to bring Luis home.
Sonia said communication is important when the caregivers meet with the medical staff.
“We tell them you need to listen to the families because we spend more time with them. We know what’s going on,” she said. “And if you don’t listen we’re never going to be able to work together because you’re going to see one way of doing things, while we can tell you another way. Listen to us. You may not like what we tell you but you need to pay attention to what we’re saying. We knew them before they got hurt and now we know them even better, so you need to work with us.”
While much of the Alvarados’ daily tasks are focused on Luis’ physical needs, they also make sure that he has as normal a life as possible. A recreational therapist visits him for an hour twice a week, and he has a music therapy for an hour every Thursday. He enjoys listening to Usher.
“We take him to the gym once a week on Fridays for an hour. I mean this kid keeps us busy,” she said. “So in the process of helping take care of him, I have my part time job outside the house. I work in a church in the south part of the city because unfortunately, you know, bills keep coming. My daughter and my husband are the full time caregivers.”
The family often sits together and watches television in their living room.
“His favorite show is ‘Everybody Loves Raymond’ and you can see his face just light up when he watches that show. He smiles at the dumb things that Raymond does. In the morning, his favorite show is ‘Bones,’ and then scary movies – that has always been our family thing,” Sonia said. “Our goal is to try to give him the most normal life as possible and try to help him remember all the things we used to do together as a family.”