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A Parent's Love: John and Mary Ruckelshaus



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"As hard and trying as it is, there is something special that will happen to Jay. I feel it in every fiber of my body. You hold onto that hope. It's what you have to do."
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June 2012

The Ruckelshaus family has battled the odds, but it has only made them closer.

Beginning with their first son Drew's birth in 1987, they were devastated to learn he had inherited the congenital glaucoma gene that the father John had.

At only 3 weeks old, Drew underwent 19 surgeries to correct his vision and prevent blindness. Their daughter, Maggie, was born 18 months later and she inherited the gene as well, needing 21 surgeries.

"It was very tiring as a young parent," John said.

Just as soon as they thought they were in the clear, Drew was diagnosed with leukemia in the third grade.

"Here we just survived a bout of blindness with two children, all the angst, anxiety and all the surgeries and medical bills," said John. "Now all of a sudden, Drew is stricken with leukemia. Our world came crashing down from a medical perspective…the doctor gave us the devastating news. It was a punch to the gut. Doctor said it'd be six months of hell and he didn't shortchange us."

Drew overcame the disease with chemotherapy. Due to the illness he was awarded the opportunity to become a ball boy for the Indiana Pacers in 1994 and it eventually led him to become an athletic trainer. He is now with the University of Idaho women's basketball team and is working on his master's degree.

"It's amazing how difficult things are, something really good and special always comes out the back end," said John.

In 1992 their youngest son Jay was born. With normal vision and an academically gifted child, the Ruckelshaus' knew they were lucky.

"Jay did very well academically," said John. "In seventh and eighth grade he was scoring off the charts. He got the presidential scholarship to attend Cathedral High School."

Only missing one question on his SAT, Jay was on top of the world. Not only did he win the Wells Scholarship at Indiana University, which provides full tuition, mandatory and course-related fees, and a living stipend for four years of undergraduate study on the Bloomington campus of Indiana University, but he was also personally admitted to Harvard, Yale and Duke.

Then the accident happened.

"He dove into Geist Reservoir at night and didn't know how deep it was," he said.

He was left with a broken neck, snapped spinal cord and paralysis from the chest down. Jay spent his first 31 days at Methodist Hospital in the Intensive Care Unit (ICU) on a respirator. He had to communicate by blinking.

"Every spinal cord injury patient is different," John said. "Recovery is measured in years, not days or months. We know this and we live in a society where people want instant recovery. This is completely the opposite and is painstakingly slow. We have a whole new world and our lives have changed. There is still hope. It will be a combination of therapy, medicine and will power. We need all three."

Jay is currently based at the Shepherd Center in Atlanta, which specializes in medical treatment, research and rehabilitation for people with spinal cord injury, brain injury, multiple sclerosis, chronic pain and other neuromuscular problems. Jay is making small steps in the recovery process. With some flickers of sensation in his triceps, feet, his stomach and one of his calves, it will be a long recovery, but there is hope.

Having Jay get as strong as possible is important as he starts Duke University in the fall.

"Duke has been great," he said. "We will have to hire an attendant as Jay will need 24/7 care. His mind wasn't damaged at all…he can use an iPad and a stylist pen."

Winding down the recovery phase in Atlanta, Jay has been part of the Neurological Rehab Network (NRN). He works on a treadmill sending signals back to the brain letting it know his legs are still there.

"This is all very unchartered water," said John. "He is very reliant and dependent on others right now. It has been very tough. At 19 he was very independent, now you are lifeless in some respects."

"It's difficult yes, but it's almost as if we've had training," said John. "As hard and trying as it is, there is something special that will happen to Jay. I feel it in every fiber of my body. You hold onto that hope. It's what you have to do."

Being your child's biggest advocate is important, he said. The medical world is neither perfect nor exact.

"It's not a production line," said John. "You have to be aggressive and stay on it. You also have to let them help themselves. Jay's personality just transcends the injury."


Tags: Local, Parenting

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