No mother is ever fully prepared to receive a diagnosis of cerebral palsy for her child. For Ariel Robison, the news was especially hard to take. Recently married, she was stationed in Hawaii with her husband who was on active duty in the military, and she had no family and few close friends to depend on. “It was traumatic,” she says, her usually animated expression darkening. “I still need to remind myself to focus on what’s happening now and on how far he has come.”
And indeed, her son has come far. At the age of 8 months, Luke suffered a brain injury that left him hospitalized. Doctors’ predictions were grave. “They were certain he would never fully recover and that he’d require assistance his whole life.” He was put on both a tracheostomy and a feeding tube. Ariel and her husband could do nothing but wait.
Luke progressed, however, and was soon moved to a ventilator and then put on oxygen. Once he was eating normally, he was assigned to a rehabilitation facility to receive physical, occupational and speech therapy as well as participate in group activities with other children. “He lived [at the facility] 24/7 but they made all the parents go home at night,” Ariel recalls. “It was really, really tough to leave him, but they did that for us. They knew we needed the rest and the sleep.”
The family was transferred in December 2011 to Joint Base Lewis-McChord (JBLM) in Tacoma, a facility known for their ability to serve military families who have children with special needs. Ariel accompanied Luke on a medical transport plane while her husband remained behind to complete his assignments before joining them. It was a scary time for Ariel. “We lived at Children’s Hospital” for several weeks, she said, before finally being released to her new house at JBLM. Luke was given a nurse who cared for him at home seven hours a day until he was able to breathe on his own. “And that,” says Ariel with a laugh, “was the first 16 months of his life!”
Children’s Therapy Center in Tacoma was their next stop for outpatient therapy. “It has been unbelievable,” says Ariel. “Luke still has motor issues, especially difficulty swallowing. He has lots of interest in food but needs to learn how to eat, so we’re working on that now. He’s still on a feeding tube for hydration and takes a canned formula at night.” He also continues to receive occupational and physical therapy.
Ariel bounces her one year old daughter, Ryanne, on her lap as she watches her son work with his therapist. She beams. “I sometimes can’t believe this is my son, doing all these things,” she says. “In fact, we got an MRI a few weeks ago and the doctor was comparing it to the first one he received right after his injury – and it was like the brain damage never even happened. The MRI was totally different. It was so obvious from looking at it that I didn’t even need an explanation!”
The family plans to retire from military life shortly and settle in Texas, closer to family. Ariel is cautiously optimistic. “I’m a little worried about leaving all the support we’ve had from Children’s Therapy Center and Children’s Hospital, but he doesn’t require as much help as he did. And I know we will all be just fine.” Still, she has learned to surround herself with support. “I’m part of three online support groups,” she says. “It’s really helpful to be able to get ideas and feedback from other parents going through the same thing. I love it when adults who have gone through similar experiences themselves weigh in because they can describe things that kids can’t.” Support and faith have pulled her through, she says. “Look where we are today. His doctors thought he would just lay there for the rest of his life. He has certainly proved them wrong!”