Jackson is all smiles. A 7-year-old who loves bowling and swimming, Jackson has a twin brother named Matthew and an older brother named Jacob. He loves going to school. In March, he will celebrate his 8th birthday with a trip to Walt Disney World provided by the Make-A-Wish Foundation.
“Jackson is the happiest kid ever!” says his mom, Jennifer. She calls him “angel baby.”
Jackson is also a CICOA client.
Jackson and his twin brother underwent fetal surgery at 17 weeks gestation, and were born three months early. Complications from bleeding in his brain caused periventricular leukomalacia, a type of brain injury that softened the white matter in his brain, leaving holes. White matter is the inner part of the brain that transmits information between the nerve cells and the spinal cord.
In Jackson, this condition has caused cerebral palsy, vision impairment, seizure disorder and respiratory problems. So far Jackson has been through 12 surgeries and more than 30 hospitalizations.
Physically, Jackson functions like an infant, yet he is four feet tall and weighs about 50 pounds. He can roll around on the floor, but can’t crawl or put any weight on his legs. He uses a wheelchair and other adaptive equipment, but needs full assistance with all activities. Jackson’s nutrition comes through a feeding tube, although he can eat small amounts of soft foods, like pudding or mashed potatoes.
His speech and cognitive development are similar to a 12- to18-month-old child. He smiles and recognizes familiar people, but can’t express his needs. As long as Jackson is smiling, his mom, Jennifer, is happy. When Jackson’s not smiling, Jennifer really worries.
“About a year ago, he went through a period of seizing, sleeping and screaming. He had no quality of life at all during that time,” she said. “I told the doctors, ‘I don’t care if he ever walks or ever talks; I just want to see him smile.’”
Jackson’s care plan includes skilled nursing care nine hours a day and respite nursing care for 60 hours a month. His twin brother, Matthew, also receives services, although not from CICOA. Matthew’s developmental age is about four years old. He is a flight risk, and very physically active. Jackson’s nurse covers Jennifer’s work hours, and Matthew’s nurse comes in the evening.
Occasionally Jackson’s and Matthew’s nursing hours overlap, giving Jennifer precious time.
“These hours allow me to go out by myself or take care of all the responsibilities that go with being head of a household,” she said. But on most days, she only has the time between work and home before Jackson’s nurse leaves.
Jennifer, a single parent, works full time at Butler University as an administrative specialist in the advancement department. She also has a medical background – she spent time studying pharmacy tech, pre-med and was an EMT – which gives her an advantage in dealing with the medical needs of her children. Jennifer hopes to go back to school someday to study law school public policy. Right now, though, “there’s not enough time.”
Jennifer also has a 13-year-old son, Jacob. She said he is helpful and understanding, but she deals with the same issues as any parent of a teenager.
Jennifer’s parents are getting older too. Her mom is in early stages of dementia, and Jennifer recently persuaded her father to move them closer so she can help.
The hardest part for Jennifer is grief.
“The grieving process really never ends when you’re the parent of a medically fragile child. You know that your child will never get married, never have children,” she said.
Jennifer described herself as an “emotional wreck” after appointments in the developmental pediatrics department at Riley Hospital for Children. These day-long appointments include visits with all of Jackson’s specialists, so she has to face all of Jackson’s diagnoses. Often a new issue emerges.
“It’s a gift that Jackson doesn’t understand how far removed from normal our lives really are,” said Jennifer.
Doctors say Jackson has a 50 percent change of living to age 10. For now, Jennifer is focused on giving Jackson the best possible quality of life and enjoying the time she has with him.
“I want him to have a life where he smiles,” she said.