"They Told Me To Let Him Go"

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Danielle Hawkins refused to believe that an aneurysm could cease the life she and her husband created. Teaming up with rehabilitation therapists, they proved to the world that love does conquer all.

After her husband suffered a severe stroke at age 37, doctors on the east side of the state told Danielle Hawkins he likely would never regain consciousness.

Scott would never again look into her eyes. Never say "I love you." Never squeeze her hand.

And most certainly, he would never function normally. There would be no more trips to music festivals, no more strumming his guitar, no more family trips.

Danielle listened to the prognosis. But she never believed it.

Perhaps this is a story about medical miracles. Or perhaps it's a love story, starring a woman who believed in her husband so completely that love conquered all. Or it's a story of a man whose body was broken, but whose determined spirit resonated so deeply that in the end, life and love mattered most.

The story begins on an April day as Danielle attended a class in a neighboring county and Scott stayed home with their children at their Durand residence.

"He called me and he was slurring his words," Danielle recalled. "He said he had an intense headache and that something was wrong. We both called 911. He got through before I did."

When emergency medical crews loaded Scott into the ambulance, his blood pressure spiked, causing fluid in the lungs," Danielle said. "It was just very, very bad." She paused. A long pause. "Sometimes it's hard to talk about it."

They intubated him in the ambulance. When the couple arrived at the Flint-area hospital, medical professionals encouraged her to call family members. They told her Scott would probably not make it through the night.

"His oxygen levels were in the 60s and 70s. They told me they should be above 90," Danielle said. "But he did make it through the night."

That small accomplishment laid the footing for what would become a huge uphill climb. Scott had suffered a burst arteriovenous malformation aneurysm near his brain stem. The aneurysm, which had been with him since birth, caused a stroke.

Two days later, surgeons attempted to perform a cerebral angiogram and coil the malformation, essentially forming a man-made clot to stop the bleeding. Scott suffered a heart attack during the procedure.

"They lost him for a few minutes," Danielle said. "He had loss of oxygen because of that, too."

The man who interpreted NASA images for a living and had just graduated from Michigan State University with plans on starting graduate school in the fall, was suddenly battling death itself. A geographic information scientist by trade, there was no map to show him how to return to his former life, the one where he could work, play, laugh and love.

A week after the procedure, Scott remained unable to respond or follow direction. Doctors told her at this stage, he was probably never going to wake up.

"They told me to let him go," she said, voice quivering.

But Danielle knew something even the doctors didn't know—the strength of Scott's spirit, and that when she kissed his motionless body, he kissed her back.

Maybe she was imagining it, she admits. But, at that point, it was enough for her to believe in, enough to keep life support plugged in, and enough to forever change the course of their lives, so that one did not journey toward death.

Her belief in Scott was slowly returned in life function, and a small sense of harmony shivered deep in their souls.

After five weeks in pulmonary rehabilitation in the Flint area, Scott no longer needed a ventilator.

"That's where I started proving to everyone (that he could recover)," Danielle said. "He's a musician, so I would bring in thumb guitars. He would flick the notes. Doctors said it was just a reflex. I told him to change the notes and he did."

Danielle said she knew her way around the medical world well enough to know how to cover Scott's tracheotomy so he would be able to talk if he was able.

"I covered his trach and he started talking to me," she said. "The first words were, 'I love you,' the second, 'get me pain medication.' Then, when the doctors asked him, 'what are you playing?' he said, 'an instrument.' The doctors started to believe in us."

Rehab options were limited in the Flint area. A nursing home seemed to be the only option.

But then a social worker told her about Spectrum Health. Danielle toured the Rehab and Nursing Center on Kalamazoo Avenue. Scott arrived there in an ambulance and spent six days a week in rehab for the next 16 weeks.

"He went in on a stretcher only moving his right hand and he left walking with a walker with one hand in the air saying, 'Rock on,'" Danielle said. "The very first day we got there four therapists came in and sat him up on the side of the bed. Kari Ondersma (occupational therapist) sat in front of him and put his head on her shoulder and quietly talked to him in his ear. He couldn't hold his head up. She and other therapists asked him to respond to questions. After the assessment, she said his left ankle is paralyzed, that everything else responded except his left ankle. They started talking to Scott like he was there. I definitely believed he would recover."

Danielle said the therapists and doctors not only imparted a lot of knowledge, they instilled hope.

Spectrum Health music therapist Alika Seu worked with Scott at the Rehab and Nursing Center.

"Scott was a very talented musician prior to his injury so during his recovery he was very motivated to get back to doing what he loved," Seu said. "When I first met Scott, he was very weak and had trouble sitting up in bed and even just moving his head. He also had quite a few memory, attention and other cognitive deficits as a result of his stroke."

Seu used music therapy and instruments, often in co-treatment with speech, occupational and physical therapies, to help Scott regain strength and coordination.

"When he was finally strong enough to try to start walking again, we used live rhythmic music to help provide a steady pulse to assist with cadence, stride length, gait quality and endurance," Seu said. "We even used singing to help address articulation and increase breath support during vocalizations."

One of the first songs Scott was able to play was "I Will" by the Beatles. "Love you forever and forever," the lyrics go. "Love you with all my heart. Love you whenever we're together. Love you when we're apart."

"It brought Danielle to tears to see him doing what he loved once again," Seu said. "I'm not sure he would be where he is today without the love and support of Danielle and his children."

Danielle never left his side. She offered support, encouragement and even tough love when needed.

Scott and Danielle dated at Durand High School—she was 15; he 16. Both moved away after school, reconnecting 15 years later and marrying. Between them they have four children, ages 12 to 17.

Now, they're a family again—at home.

Scott's left ankle is still partially paralyzed, but he walks with a walker, unassisted. He still has short-term memory loss, but Danielle says "he is still the smartest man I know and has the same personality and humor he has always had."

Scott said during a phone interview with Health Beat that he has no recall of what happened. For a time, his long-term memory was affected. He did not recall that he and Danielle were married.

"He was very excited every time I told him," Danielle said.

Despite her husband's memory loss, every moment reverberates with Danielle, still.

"Even when they told me to call the family that first night, I just never felt it," Danielle said. "I never believed he would die. I always had this picture of him walking with a cane. He's playing guitar again. He plays the drums. It used to be he couldn't swallow. He had a feeding tube for nine months, but now he can eat anything he wants."

He can't read regular print yet, but he can do large-print word puzzles and mazes.

Scott, Danielle and their children attended a weekend music festival recently. Scott had a motorized scooter to assist getting around.

"It was an amazing moment to be there again as a family after the year we had," Danielle said.

But there are more verses to come. More proverbial bars to hurdle. More notes to sound.

"I don't think it's over," she said. "He will still have to recover for a very long time. I'm just very grateful for him and the people that stood behind me when I made the decision I made (to not let him go)."

Danielle paused again. Her mind drifted not to her and Scott's experience, but to those of others journeying the delicate crevice between life and death.

"I wonder how many people listen?" she said. "That's what scares me the most."

Recognized for their quality and expertise, Spectrum Health's Rehab and Nursing on Kalamazoo Avenue and Center for Acute Rehabilitation at Blodgett Hospital have CARF accreditation as stroke specialty programs. For more information on stroke care at Spectrum Health, please visit www.shmg.org/stroke.

Written by Marie Havenga.

Photo courtesy of Chris Clark/Spectrum Health Beat.


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