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How it all began

Fort Wayne man's vision problems provide opportunity to help young granddaughter

Despite limited vision, Allen Shaw serves as primary caregiver for his granddaughter, Zuri, who has special needs. (Courtesy of Ryan Perry)

By Kayleen Reusser

Friday, June 13, 2014 12:01 am

It's not often that a grandparent's disability can benefit a grandchild. Aboite resident Allen Shaw is thankful that is the case for his 1-year-old granddaughter, Zuri, and him.In October 2011 Shaw was watching TV at home when suddenly everything became blurry in his left eye. Diagnosed at age 15 with Type 1 diabetes, Shaw was familiar with the dangers of side effects of the disease. His father had lost both legs from the disease. Shaw was insulin dependent and wore an insulin pump 24 hours a day. He was especially familiar with the effects to a diabetic's vision, as glaucoma is a common side effect of the disease. Despite good intentions, family and work obligations had required much of his attention for most of his adult life. Since 1989, Shaw had worked at Triple Crown Services as a train dispatcher. His wife, Deb, worked full time for Taylor University, then for an insurance agency in Fort Wayne.

Besides raising three children, Shaw, a 1981 music education graduate of Fort Wayne Bible College, served as worship leader for Life Community Church (then Aboite Missionary) in Fort Wayne, where he and his wife attend. The various commitments in his life made it easy for Shaw to ignore his increasing vision problems that finally came to a head that day at home. Sometimes the signs his body displayed were deceitful. “At one point I lost 75 pounds rapidly and felt great," he said. “My blood sugar was high with my medication but I believed the weight loss would make my heart healthier.” Unfortunately, by the time Shaw sought additional medical help to control his blood sugar in late 2011, he was almost to the point of being beyond help. A visit to an eye specialist revealed blood vessels in his eyes that would not stop bleeding. The doctor performed a vintrectomy on Shaw's left eye in which vitreous fluid was drained. Another fluid was inserted to stop the vessels from bleeding. Shaw began a series of injections in his right eye, took oral medications and administered eye drops four times a day. “Our goal was to keep my eyes from being misshapen by retinopathy," he said. Shaw also had cataract surgeries on both eyes. He returned to work after healing from the eye surgeries. However, his problematic vision, which had begun with intermittent occurrences, increased in frequency over the next two years. Despite the efforts of treatments and specialists, in March 2013 Shaw was forced to make the phone call to his employer he had dreaded. “I had to tell him I could no longer work," he said. “I could not see well enough to do my job.” Today, his vision in his left eye is limited to 10 percent. While he can see relatively well with his right eye, Shaw continues to treat it for retinopathy with eye drops. During the past 15 months, Shaw and his family have had to make many adjustments. Declared legally blind, Shaw cannot drive a vehicle and is driven to medical appointments – he continues to consult regularly with cornea and glaucoma specialists – and errands. He uses a large type size on his phone to send text messages to family and friends. Though the prognosis for Shaw's vision is not good, he chooses to focus on two areas of his life where he can make a difference. Both are related to the needs of his granddaughter, Zuri. Born in February 2013, her own health was an immediate struggle. Zuri's tiny heart had four holes in it, which surgeons at Riley Hospital for Children in Indianapolis successfully repaired in August. Today, Zuri's heart pumps regularly and she is gaining weight. In addition to the holes in her heart, Zuri was born with an extra chromosome, which has caused her to need extra care as a special-needs child. Grandpa Shaw has been happy to help with Zuri's development. “Now that I no longer work full time, I have more time as Zuri's primary caregiver to engage her in play, which helps her learn," he said. “I would not have been able to do that while working full time.” Zuri's speech development is aided by Shaw teaching her sign language to communicate. “Experts have proven children grasp the concept of using signs to communicate sooner than speech," he said. “It is true for Zuri because, while she does not say the words, she shows me she's tired by making the 'night-night' symbol.” She also signs the words "more," "please," and "Daddy." By sitting on the floor with his granddaughter, often each day, Shaw implements music to enhance Zuri's motor skills. “We sing together, which helps her make sounds and small actions, such as clapping," he said. He can see well enough from his right eye to read children's books to Zuri because the books' text often is in large type. He also works on her slack muscle tone by helping her play with a toy that forces her to stand on her toes to make the buttons go. “I'm not trained professionally to work with a baby with special needs, and thankfully Zuri has speech, physical, and occupational therapists who work with her weekly," he said. “But during all of our times together, I try to build on what the therapists do for and with Zuri so the next time they see her they can increase her challenges. They all say she is doing great.” Shaw pursues another passion – writing – that will enhance Zuri's love for words. He has penned four children's stories that are like a cross between the popular children's book character of Junie B. Jones and the whimsical rhymes of Dr. Seuss. As he is unable to type, Allen speaks the poems into his phone after he has created them in his head, and his wife types them. Shaw has shared his poems with Zuri, his other granddaughters and their school friends. He also wrote an essay entitled "I'm Going Blind, Not Losing My Mind," a humorous reflection on living with limited vision. Caring for Zuri has helped Shaw put his own health into perspective. “I used to not be patient enough to sit on the floor with an infant," he said. “Sometimes, I get discouraged about not being able to see again," he added. "I've learned that if I can laugh at my predicament by playing with Zuri or making up a silly poem for her, then it's not the end of the world. It helps to have a different perspective.”

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