All Jennifer Hagerty ever wanted was to help others succeed in life. After years of neglect and abuse from her parents, Hagerty wanted to treat others differently than how she was treated. As a result, nursing became her lifelong passion.
“My dad left when I was four and never came back. My mom faced addiction when I was a young child. The best way I know how to describe it is that they loved the high more than they loved themselves and more than anything else in this world,” she said. That’s why nursing provided her “the opportunity to have an impact without having to be in the spotlight. To be there for someone else.”
Hagerty is a 36-year-old pre-nursing student at UCC who hopes to work at OHSU as a nurse. As a mother of two children, 8-year-old Joshua and 6-year-old Jaxon, she has found it’s the precious things in life that bring the most joy.
Her children became part of the motivation and inspiration in pursuing a nursing career. But, life wasn’t always easy for the Hagerty family. Blissful moments were often met with great trials and tribulations.
With a crackle in her voice, Hagerty recalls the complications with the birth of her first son, Joshua.
“He was born without 80 percent of his skin,” she said. “It looked like someone had just dragged him across the pavement.”
Joshua’s situation is unique. He was born with ectodermal dysplasia, a skin disorder where the tissue that anchors the epidermis to the dermis is loose, causing the skin to easily slide off. As a result, Josh is prone to severe skin infections.
At birth, he contracted both MRSA and pseudomonas, both deadly skin infections. He also suffered from heart problems, kidney issues, and a cleft lip and palate.
“It can be really scary,” she said. “As a student and being his mom, in the back of my head I am always wondering ‘What do I do if he gets sick or hospitalized?’ and I would have to put school on the backburner because my son is always a priority before anything else.”
Joshua has endured over 30 surgeries and 100 hospitalizations during his short lifespan. His condition foreshadows a life of intense medical care and exhaustive daily routines.
“We have to give him bleach baths three times a week for ten minutes to kill bacteria and maintain his PH balance,” Hagerty said, reassuring that the bleach doesn’t hurt his skin. “He also has to get lathered with olive oil at night time when he falls asleep because he doesn’t have natural oils in his sebaceous glands.
Playing outside presents its own difficulties for Joshua who suffers from cold urticaria, a condition where his skin welts when in contact with cold temperatures and falls off. However, in extreme warm temperatures, his capillaries dilate, causing bleeding through the skin.
“He doesn’t sweat, so when he is on the playground he brings a water bottle,” Hagerty said.
Unfortunately, due to the nature of Joshua’s disease, his small, frail body, pale skin, and short, patchy hair make him an easy target for bullies. But that hasn’t stopped the 8-year-old from being a playful and active child.
“One day we were at McDonald’s here in town. We walked in, getting ready to order, and a lady said, ‘Wow, that’s a funny haircut,’” Hagerty recalled. She added (in a heart felt tone), “Joshua looked at me as if saying, ‘Is that alright to answer?’ and I looked at him like ‘Go ahead,’ and he said, ‘I have ectodermal dysplasia and you called my hair gross, but I am glad I made you laugh.’ ”
Then later on that night, Joshua asked his mom, “Why would someone who is a grown up ask me that, mom? They should know that that is not okay.”
He further added, “It’s not that she asked about my hair; it is how she asked about my hair. You just have to know how to approach a situation.”
And, in her soft reassuring tone, Hagerty answered, “You handled that perfectly.”
Two years after the birth of her first son Joshua, Hagerty became pregnant with Jaxon. A moment of sheer bliss turned into a new set of overwhelmingly difficult challenges. Although Jaxon managed to avoid his brother’s disease, another one became prominent.
“The day Jaxon was diagnosed with autism was very difficult,” Hagerty said. “I felt lost and confused. I already had a child with medical needs, and now my other child who somehow avoided the genetic diagnosis of ectodermal dysplasia has a completely new diagnosis.”
She didn’t know how to handle it. Autism was something she had experienced only a handful of times. It is a disorder that is still yet to be fully understood.
She would often ask herself, “Will he require 24 hour care for the rest of his life? How will I balance Joshua’s hospitalizations with Jaxon’s sensory needs? How can I possibly parent both boys with two very different diagnoses and still have some sense of self? Who can I depend on for help?”
She decided to turn her fears into strength as she surrounded herself with people knowledgeable on the subject. She reached out to Autism Speaks and local disability services for helpful resources. Additionally, Hagerty found Early Intervention and Autism Behavioral Analysis services that could be able to educate the Hagerty family about Jaxon’s needs.
“I knew that I couldn’t give up. When I chose to become a mother, I knew that it came with risks and benefits, blessings and struggles, and together we would get through this,” she said. “Disney’s ‘Lilo and Stitch’ reminded me ‘that Ohana means family, and family means no one gets left behind or forgotten.’ So after a good, long, hard cry all the way home from the hospital, I picked up my broken heart and put the pieces back together.”
Hagerty’s children have been the driving forces of her life. Although college can be difficult for her with the intense medical care required for Joshua and Jaxon, she wouldn’t trade it for the world. Caregivers have been especially hard to find, but Hagerty uses her strength as fuel to persevere.
“I feel like I had two paths to choose from. I could either be a victim of a circumstance or I could be a victor over the burdens and struggles I have faced in life,” she said. “I choose to be a victor! I hope that some day someone will look at me and my story and say. . . because of you, I didn’t give up.”