Braille Monitor October 2006
by Gail Brashers-Krug
From the Editor: The following story first appeared in the Summer 2006 issue of Voice of the Diabetic, our quarterly publication that not only deals with managing diabetes, but frankly and constructively addresses the disease's ramifications. Tom and Eileen Rivera Ley have been NFB leaders from the time they joined the organization as students. Here is the inspiring story of their challenging life today:
Five-year-old JonCarlos Rivera Ley looks just like his papa, Tom. JonCarlos inherited his charming smile, his delightful singing voice, and his goofy sense of humor. And a year ago JonCarlos also inherited his father's Type 1 diabetes.
But JonCarlos enjoys an important advantage that most diabetic children do not. He has an arsenal of the three most important weapons against a chronic disease like diabetes: know-how, a positive attitude, and terrific role models. One of JonCarlos's advantages comes from the fact that both his parents are blind.
Step Outside Your Fear
But how can blindness possibly be an advantage? JonCarlos's mom Eileen, who has been legally blind since birth, explains: "Tom and I know that being blind can be rather frustrating at times, but it doesn't mean that a good life is over. We accept that we have to make adjustments, and we get on with life."
Tom, a thirty-nine-year-old devout Christian and self-described math geek, lost his sight to diabetes at age seventeen. He is currently undergoing dialysis three times a week while awaiting a kidney transplant. Nevertheless, he is relentlessly upbeat, positive, and energetic. "You can always think of reasons why you can't, if you're coming from a position of fear. But if you step outside your fear and try, you can usually figure it out."
Much of Tom's hopefulness comes from his strong faith. "I truly believe that God allows struggles in our lives for our good. For example, if I had not become blind, I would never have met my wonderful wife or had my children."
JonCarlos's fourteen-year-old sister Maria agrees: "My parents have never let disabilities stand in their way. Some people think that, because my parents are blind, I do everything for them or that I get away with lots of stuff because they can't see. But it's not that way at all. Mom and Tom are super independent, and, trust me, my mom never lets me get away with anything." Maria is really proud of her family. In fact Maria recently gave a speech to her entire middle school about the strength she and her little brother have gained from their parents' approach to adversity.
Find the People Who Know
The Leys put their positive attitude to work to handle their son's diagnosis. "When JonCarlos developed diabetes," Eileen says, "we knew that handling diabetes would be a lot like handling blindness. The key was to find the real experts, people living with the problem every day. Those people are always out there, folks who are living with the problem and have already found solutions."
The Leys learned this networking strategy from the National Federation of the Blind. When Tom became blind in high school due to diabetic retinopathy, he and his parents were distraught. A gifted math and science student, Tom had dreamed of becoming an electrical engineer. Shortly after he became blind, his father took down a volume of the encyclopedia from the bookshelf and opened it to "blindness." There he read that blind people succeed at many jobs, "and," Tom recalls with a smile, "lo and behold, one of the jobs listed in the encyclopedia was electrical engineer!"
That experience planted the seed of hope, but hope began to bloom fully when Tom met the National Federation of the Blind. Joanne Wilson, then president of the NFB of Louisiana, reached out to Tom. "It was truly amazing. She did things that I never dreamed blind people could do. She had five children!" Tom adds, "Every time I talked to her, she would mention something new, and I'd think, ‘How does she do that? How does she go grocery shopping, or do her job?'" Dr. Wilson introduced Tom to people in the NFB Diabetes Action Network, who taught him how to manage his diabetes independently.
Eileen joined the Federation while a student at Harvard College. Her life has never been the same since. "It was a real relief to meet other blind people who were achieving their goals. It took a lot of pressure off me. I no longer had to be a super blind woman. I could just be myself."
Over the years Tom and Eileen have benefited from the advice and support of dozens of successful blind and visually impaired people. Today Tom is a software development manager for UPS, and Eileen is a strategic planning and fundraising consultant and works on Voice of the Diabetic. Now they mentor others dealing with blindness and diabetes.
The Leys reached out to another, different supportive community when JonCarlos was just nine months old and was diagnosed with severe hemophilia, an extremely rare, genetic bleeding disorder. Eileen: "We were shocked--no one in our families had hemophilia. But we handled it the same way we handled blindness: we knew the key was to find people who had done it before." They found the Hemophilia Foundation of Maryland, and through the foundation's families learned how to manage their son's hemophilia and, Eileen adds, "still help him have a normal childhood." With special IV infusions of a blood clotting factor every other day, JonCarlos's hemophilia is controlled.
Before JonCarlos developed diabetes, Eileen recalls, "Tom would worry every time JonCarlos seemed thirsty. I told him not to be silly. ‘Come on,' I said, ‘you know the odds are very low, and we already have the hemophilia to deal with.'" But when their son turned four, he began to be thirsty all the time and have a constant, itchy skin rash. As the familiar symptoms mounted, Tom and Eileen grew more concerned. "Finally we had a long, tense talk at three in the morning. Tom was very upset. He left the room to be alone for about a half hour and then came back and said, ‘Okay, I'm done feeling sorry for myself. We'll test him in the morning.'"
So when Tom and Eileen learned that JonCarlos had diabetes, they immediately put their NFB experience to work again. First they sought advice from their friends in the NFB's Diabetes Action Network, who assured Eileen that she could manage the glucose testing and insulin dosing safely and effectively. Next they set about finding other families raising diabetic preschoolers. Eileen recalls, "While we were in the hospital dealing with the diagnosis, a dear friend got on the Internet and found the Children with Diabetes Web site. Through it she found several families in our area who have other boys JonCarlos's age with diabetes." With the support of those families, Tom and Eileen learned things like how to train their son's babysitters and preschool teachers.
Managing Diabetes Is All Day, Every Day
Of course their positive attitude does not mean that the Leys are Pollyannas. They recognize the challenges and fears of raising a diabetic child. Eileen recalls, "I couldn't believe my little boy had yet another chronic disease. When he was first diagnosed, I was nauseated all the time. Of course Tom has diabetes, but he manages it on his own. He's the family expert, but he was at work and I was home with JonCarlos. Managing diabetes is all day, every day. I was terrified that I would forget to give him his insulin or give him the wrong food or something."
JonCarlos's diagnosis was particularly difficult for Tom. Tom recalls, "I had so many mixed feelings. I had gone blind and gotten kidney disease as a result of my diabetes. I didn't want my son to have to suffer. Now, with all the intensive therapies and better insulins, I'm hopeful he won't have to suffer complications at all."
He continues, "I don't want to sugar-coat it. Diabetes is a tough disease. You have to be a full-time manager of your diabetes. You're always thinking about it, always planning for it throughout the day. The sooner you embrace this life and accept it as your new normal, the sooner you can move on and keep living your life."
Managing with Adaptations
Managing diabetes can be challenging for anyone, but it is even more so for blind people. As Tom explains, "There are three basics to day-to-day management: giving insulin, testing blood sugar, and counting carbs. Those are all things that blind people can't do without some adaptation."
The Leys employ a number of adaptations to manage JonCarlos's diabetes. For administering insulin, they use the NovoPen Junior by Novo Nordisk to administer Novolog and the OptiClik by Aventis to administer Lantus insulin. The two pen devices are shaped differently, which greatly simplifies identification. The dials on the ends of the pens measure the insulin, and they make audible clicks for accurate dosing. Before switching to his insulin pump, Tom used the Count-a-Dose, a device that provides audible clicks so that a standard syringe can be accurately filled without sight.
For testing blood sugar, the Leys use both talking and nontalking blood glucose meters. Tom uses a talking meter, the ACCU-CHEK VoiceMate, while JonCarlos uses a traditional meter with a visual display, the ACCU-CHEK Compact, and reports the numbers on the display to his parents.
Counting carbs is a bit more challenging. "When a new food comes into the house," Tom explains, "we put a label on it, in Braille and large print, with the serving size and the carbs per serving. After a while, we've come to know from experience how many carbs are in our favorite foods." The Leys use their talking computer to access special Web sites like CalorieKing.com where they can find carb counts.
One of the most helpful strategies they used in managing JonCarlos's diabetes, Eileen recalls, was educating their friends and family on how to manage the disease. "When we first started meeting parents with diabetic children, we heard stories of parents who could never go out on a date or leave their children at all and grandparents who wouldn't watch their grandchildren because they were afraid of dealing with the diabetes. There was no way we were going to accept that." Eileen invested some time in explaining diabetes management to the parents of JonCarlos's friends, "and now he goes on playdates like any other little boy."
But even a glance at this remarkable family reveals that JonCarlos is not like any other little boy, and his family is not like any other family. Diabetes, blindness, kidney failure, hemophilia--it seems that they can overcome anything. Eileen laughs, "One of the diabetes educators I know told me that blind diabetics like Tom are a real inspiration to her sighted patients. She tells them, ‘If these blind people can manage their diabetes and not complain, then you can do it too!'"