Come Back Up! Come Back Up, Elias!
by Sheryl Wilde
He knew what he had to do. It was the hardest thing imaginable for a father to do. But he did it because it was the right, the only thing, to do. And he did it because it was a promise he made to her on her deathbed.
George Saravia, Qualified Intellectual Disability Professional, Mountain Shadows – Riverside, remembers the day. “I was there. I was there the day he brought Elias to Mountain Shadows. And he was a wreck. He was crying. Well, he was bawling his eyes out. I don’t know if you want to include that in the story, but he was a wreck.”
Steve Stanley is Elias’ dad. It has been said men don’t cry. We say it takes a really big man, with a huge and loving heart, to cry.
“I really didn’t know how to respond to his pain, you know?” continues George. “But I understood. I understood. That’s his boy. That’s his son.”
And on that day, Steve was placing his son, Elias, into the care of the Mountain Shadows Family.
“It was hard to watch,” says George. “One of Elias’ brothers was there too. I felt so bad for him. He had to wait in the car. It was hurting him too much. He couldn’t make himself come into the house to say goodbye to his brother. Even though it wasn’t really goodbye, it’s just a new home for Elias, it was hard.”
“When we adopted him, Elias was just like a little ball,” says Steve. “He couldn’t do anything. He was three years old. I think his biological family had just carried him around. They did everything for him.
“Then, when we brought him into our home – with a house full of boys running around and playing – Elias was like, ‘Hey, wait a minute!’ He wanted to join everybody else and do everything they were doing too. I think within a year’s time, he was starting to move on his own.”
Elias was born with an extremely rare condition known as FOXG1 Syndrome. The condition is associated with a particular pattern of brain malformations, which includes an underdeveloped connection between the right and left hemispheres of the brain. FOXG1 affects most aspects of development and children with this condition usually have severe intellectual disability. Most do not learn to sit or walk.
“Elias is a handful,” admits Steve. “When we adopted him, it was hard at first. He’s a non-talker. A non-walker. It was hard at first to understand him, to understand what was going on. But once we learned, once we got to know him, we learned how he communicates with his facial expressions.
“We were fostering Elias. But after his biological mother met our family, she called us and said, ‘I see how good your family is with Elias. I see how well he’s taken care of. He’s in a better place with you.’ She asked us to adopt him.
“My wife, she was a strong and beautiful person. She was unable to have more children. We had tried in-vitro fertilization, and it didn’t work. So, when she heard the word adoption, she ran with it.
“She was able to advocate for Elias, and she worked hard to finally get the right diagnosis for him. And she loved him so much! She would always be on the floor with him. He’d be on his belly on the floor and she’d be next to him, singing the Lone Ranger song – ‘Hi-ho, Silver! Away!’ And she’d do the shooting sounds. And she’d move his hands. Elias loved it. My wife was very family oriented.’”
Then came COVID.
“In January of 2021, we all got COVID,” says Steve. “My wife had some underlying medical conditions. She was coughing a lot. She couldn’t breathe. It kept getting harder and harder for her to breathe.
“She was admitted to the hospital and for the whole month of February, she was there. During the first week, she was still able to talk, and she said to me, ‘Promise me. Promise me that you will find a place that will take good care of Elias.’
“Taking care of Elias is a two-person job – it takes a team. My wife made me promise to find a new home for Elias and not to quit my job.”
“I still miss my wife a lot.”
After his wife passed away, Steve still had three other sons to care for, and a demanding, graveyard shift job. As much as it hurt him, he knew his wife was right. “I just couldn’t take care of Elias alone. We searched for quite some time to find a good home for him. That’s when we found Mountain Shadows.
“I still miss Elias a lot. But I know moving him to Mountain Shadows was the right thing to do. I know Elias is well taken care of there. They have a great group of people there.”
“Elias is a very special child,” says George. “At first, the transition, moving to Mountain Shadows, was hard for him. He just wanted to be left alone. He was like, ‘Where’s my dad? Who are all these people? Who are these other kids? These aren’t my brothers! This isn’t my family! Who are these ladies? They’re not my mom!
“But, over time, he’s made Mountain Shadows his home.
“With Elias there is no middle ground. He can crawl. He can scoot. And he just loves being on the floor. He absolutely loves it! He has a wheelchair, but he doesn’t like to use it. I don’t think he likes being confined. He likes to be free! He also has a gait-trainer that allows him to move around the house and into the yard. He loves the gait-trainer!
“So, as I said, there’s no middle ground. Elias is either scooting on the floor or running around the house in his gait-trainer. He’s either completely relaxing in his bed, or he’s go, go, go, go, go, on the floor or in his gait-trainer.
“Elias is also just a little bit of a troublemaker. He’s so fast in his gait-trainer! If you turn your back for a split-second, he can go from the dining room to the kitchen.
“While Elias cannot speak, he does listen. And he understands.
“Ty-Marri, another resident of Mountain Shadows, has become a good friend and brother-like figure to Elias. Ty-Marri looks out for him, and the other residents, in the house. Ty-Marri is always making jokes, and Elias, he has good ears, and he’ll laugh. And Ty-Marri knows when Elias is causing a little bit of trouble.”
“When Ty-Marri sees Elias in his gait-trainer, then he wants to get in his gait-trainer too,” continues George. “He is not about to let his little brother show him up.
“The two of them play together. That’s great to see. I bought Ty-Marri a blowup tiger – an inflatable boxing bag with sand at the bottom. Ty-Marri loved it and liked to punch it. Well, when Elias saw it, and saw Ty-marri having so much fun, he walked right over to it with his gait-trainer, and he was trying to punch it too!
“He saw Ty-Marri hit the bag, knock it over, and then it came back up. Ty-Marri would hit it, knock it over again, and it would come back up, come back up, come back up.
“Elias was trying to do the same thing, but he didn’t quite understand how to punch. He was trying to wrestle with it, and he couldn’t get ahold of it. It was pretty funny – and they were having a great time playing with it together. They were really having fun. Eventually, though, Elias kind of popped it. But they really had fun with it. They like to play together.
“That’s one of the best things about Mountain Shadows. We are really like a family. We eat together. We play together.
“Recently, one of our residents, Isaac, passed away. It was rough. Real rough. We went to the service and they asked, ‘Does anyone want to come up and say something?’ Ty-Marri was the first person to raise his hand. We had a little Mountain Shadows section, where we were all sitting together. And we all just looked over at Ty-Marri. We were like, ‘Yo. Do you really want to go up there?’ And Ty-Marri said, ‘Yes. I want to say goodbye.’
“So, I took Ty-Marri up there. Everyone, especially Isaac’s family, really appreciated that he went up there. And Ty-Marri said, ‘Issac was a good guy. He was my friend.’ And he said, ‘I miss you, Isaac.’
“So … we share the good times and the bad … we really are a family.”
“I’m going to be a father myself soon,” adds George. “Being with Elias, seeing the friendship between Elias and Ty-Marri, it awakens a new side to me. Just playing with them, taking them out into the community, going for a little walk in the neighborhood, pushing their wheelchairs, just hanging out with them – that is fun! That right there is why I do this.”
“It’s important that others realize that special needs people aren’t scary,” adds Steve. “They’re just people with different issues and abilities. They are just regular people, like you and me.”
“My hope for Elias is for him to continue to enjoy life,” says George. “I want him to be happy. I want him to have a peaceful life, a good life, a good life in a caring environment. And I want him to have fun.
”I want Elias to feel welcome at Mountain Shadows. I want him to feel at home. I think he does feel at home now. He’s very comfortable here.”
“I’m proud to be Elias’ dad and I’m grateful to have him in my life,” says Steve.
As for George, he says, “Maybe I’ll buy Elias and Ty-Marri another blowup tiger. They really enjoyed playing with that.
“Elias has been through a lot. And, like his father, I want him to enjoy life. Elias deserves that.”
While Elias has had what many would consider to be a rough life – born with severe disabilities, losing his biological mother, being adopted, then having his adoptive mom pass away, and now having to be separated from his adoptive dad and family – each time life tries to knock him down with another one-two punch, Elias grabs ahold, and like the tiger, he comes back up … he comes back up.