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This is The Sunday Series.
The Sunday Series (51): Vision of Love
You don’t have to have perfect sight to have tremendous vision, nor do you have to see clearly to feel perfect love. I bet if you ask Matthew and Josh Lipsey they would tell you the love in their eyes is focused squarely on the woman who has given her vision and her life to them, their mom, Mindy.
“I’m the type of person who needs to know”, says Mindy, “and once I knew I could tackle it and handle it, I was good. It’s the gray area that is so hard to deal with.”
It took more than a year to get the definitive diagnosis for her son Matthew. A year Mindy would like to forget because there was a time she was being told her son would not only lose his vision, but the genetic disease would also claim his life. A year of discontent – a year of fear – a year of the unknown. It turned out Matthew’s life was not in danger, but his inability to see clearly would affect the rest of his life. At the age of 7 the diagnosis was definitive, Matthew had Stargardt Disease.
Stargardt is an inherited form of juvenile macular degeneration that causes progressive vision loss usually to the point of legal blindness. Matthew’s troubles surfaced around the age of 6, and after the long process to get the true diagnosis, there was also another concern. Stargardt Disease is a genetic orphan disease, meaning both parents were carriers and there was a 25% chance Matthew’s siblings were at risk, his younger brother Josh and little Emily, less than two years of age. The doctor took blood and DNA samples from the children and the family waited. Four months later when the phone rang, the doctor was in tears…Mindy simply asked, “which one”? Emily was safe, but 4-year-old Josh was not, he too had Stargardt Disease. It was the last straw. Mindy immediately cancelled her work trip to Hawaii and in short order left the working world behind. It was time to focus on her boys, their challenges, and to learn all she could to help them to adapt to a world with limited sight and to be there full-time for her baby girl Emily.
When Josh turned 7, Mindy decided it was time to let him in on the secret which would affect the rest of his life. She brought 10-year-old Matthew into the room and together they told Josh the news – even though Mindy says she was concerned about his reaction, the time had come. Josh listened and then turned to Matthew – “cool bro, we have the same thing.” His reaction was a relief to Mindy, after all Josh had never seen his big brother be limited in anything that he wanted to do and so Josh was taking the whole thing in stride. But but down the road it wouldn’t be so simple, when Josh’s inability to see would rob him of his passion.
Mindy says it takes an entire village and a team of resources to help when someone lives with low vision and she learns from the best, especially others who share the experiences with their own children on social media, and from teachers and specialists. There are local non-profits that offer a world of information and support, including the Maryland School for the Blind, (http://www.mdschblind.org/), the National Federation for the Blind, (https://nfb.org//), and the Foundation for Fighting Blindness, (http://www.blindness.org/). Mindy says it’s all about education, staying on top of all the latest technology to assist her sons, and keeping it all in perspective.
“As a parent, you grieve the loss of their vision”, says Mindy, “but my boys don’t notice it as much because they have been dealing with it for most of their lives. The boys say they don’t know what they are not seeing. When you are older and you have macular degeneration your brain fills in the parts it knows used to exist in your sight, but when you are young and you start losing your vision at 6, the brain can’t fill in what it never experienced.”
Then there are the stereotypes. Mindy says, “society has an incredible misperception of what the blind are capable of, especially in the areas of science, technology, engineering and math- they are constantly told they cannot do certain things – you need to have a strong parent, or parents and the proper education.” Matthew and Josh have a TVI, teacher for the visually impaired and an OM, an orientation and mobility specialist, to help empower them with the vision to overcome their challenges with their sight.
Technology plays a huge role and we can thank Steve Jobs for helping those with low vision to see more clearly. The iPad has a built-in low vision feature which can help to enhance sight for anyone, a feature which can magnify anywhere from 100 to 500 percent. Mindy says sometimes Matthew, who is now 17-years-of age, uses the iPad before he goes out to a restaurant with friends to look up the menu and other information in advance, to be prepared for his outing when its time to order. Or he will text a friend in advance of being dropped off at the movie theater so there is someone there to meet him and help him inside to grab a seat and “see” the show. Both Matthew and Josh have peripheral vision and use sounds and conversation to gain information. Many times when one of the senses is diminished, the others become stronger.
Mindy says both boys adapt well, but there have been heart breaks. She says she has never seen Matthew get truly upset about his condition, but she did witness Josh, just once, let it go. Josh has been an athlete since the time he was 2-years-of-age and he loves baseball. He had become a good pitcher and it was his greatest passion. But eventually his limited vision made it impossible for him to see the ball until it was right in front of his face and he had to quit the game he loved so much. It was on that day that Mindy says she saw the tears flow and it broke her heart.
But her boys are resilient. Mindy says, “Josh discovered wrestling one summer at Camp Airy and he was hooked. He realized he could feel passionate about a sport again and he was determined to succeed.” Last year Josh won the coveted Thomas B. Scheffenacker Memorial Award, presented to one Maryland Junior League Wrestler each year in recognition for outstanding sportsmanship, character, academic achievement and community mindedness, all qualities that enhance the image of the sport.
Matthew is also making his mark, taking on leadership roles with the B’nai Brith Youth Organization. He also took part in a program called Global Explorers and accomplished the feat of hiking the Grand Canyon and then white water rafting down the Colorado River. And Matthew is also showing everyone his tremendous courage and determination when it comes to transportation. Because of their challenges with sight the boys cannot get a driver’s license, but Matthew, with the education from his orientation and mobility specialist, is learning to tackle the challenge of using public transportation and to cross the street safely.
Mindy says it’s all part of the journey. “You go from the diagnosis to the acceptance part of it. Every one or two years presents a different set of challenges. So every time I cross one thing off the list to help teach them and say things are going well, there’s another change, or challenge. When Matthew’s friends started getting their drivers licenses…wow that affected everybody. I always knew it was going to happen, but it snuck up on me. It really affected the family.”
She continues, “it’s just learning to do things differently. I feel bad for the parents who don’t put in the time, and believe me it’s not easy, and give their children every opportunity to be successful. I’m not going to be around forever and the thing I say to them (her boys) all the time is – ‘what would you do if I wasn’t here?'” Mindy is on a mission to make sure her boys will be as self-sufficient as possible.
Mindy says the greatest thing she has learned from this is adversity makes you stronger: “If you let something overcome you and you don’t overcome it, what you are dealing with becomes you.” These are words to live by and her boys have taken the determined lessons their mother has taught them to heart. Josh recently penned his thoughts about his disease and the new sport he loves:
I remember the day like it was yesterday. The words are all fresh in my mind, even though it’s been 7 years since my Mom told me I was losing my vision due to an eye disease. There is no treatment or cure for Stargardt Disease and there are not glasses available to “correct” my vision. Imagine never being able to drive a car, see the board at school, recognize friends faces in the hallway and lunchroom, or watch television. When I wrestle, I can’t see the timer or the score, and I don’t recognize the face of my opponent.
When I was first diagnosed I was angry and scared about losing my vision. I was equally upset about having to quit baseball, but thankfully I discovered wrestling. Wrestling has taught me discipline, sportsmanship and to never give up, even when I’m not on the mat. I have a great deal of respect for the sport and much gratitude to the coaches for all they’ve done for me. I know blindness is just one characteristic that describes me, but it doesn’t define me. I want to be remembered as a “good” wrestler and a contributing team member and not a “good” wrestler despite being visually impaired.”
It is our vision, not our sight, that defines us. What your heart and mind can see will always take you much farther than what your eyes can bring into focus. A vision of love can give you the power to go places you never thought you could go.
Unitl next time, thanks for taking the time.
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Mark Brodinsky, Author, Blogger, Financial Services
The #1 Amazon Best-Seller: It Takes 2. Surviving Breast Cancer: A Spouse’s Story