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The Sunday Series (51), with Mark Brodinsky

December 14, 2014 By markbrodinsky 6 Comments

Today belongs to you. Your story, your inspiration, your courage and the hope you could bring to so many.

This is The Sunday Series.

The Sunday Series (51): Vision of Love

favorite boys photo

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.

mindy and the boys

“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.

Aug 06 kids rehoboth beach by Mindy

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.

josh with a bat

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.

Josh wrestling HS

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.

matt flying plane

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 and josh and matthew

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.

kids recent

Unitl next time, thanks for taking the time.
Mark

For ideas, suggestions, or comments on The Sunday Series, e-mail: markbrodinsky@gmail.com, connect on social media, or leave a comment on the blog.

Mark Brodinsky, Author, Blogger, Financial Services

The #1 Amazon Best-Seller: It Takes 2. Surviving Breast Cancer: A Spouse’s Story
(http://www.spouses-story.com/)

 

 

 

 

 

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Comments

  1. Mom says

    December 14, 2014 at 11:17 am

    Mark
    Thank you for this article. Cannot wait to tell Susan about the iPad and the vision helper.

    Reply
    • markbrodinsky says

      December 14, 2014 at 12:20 pm

      Good idea!

      Reply
  2. Gregory Plotkin says

    December 14, 2014 at 11:52 am

    Great article!

    Reply
    • markbrodinsky says

      December 14, 2014 at 12:20 pm

      Thanks Greg.

      Reply
  3. Gail says

    December 14, 2014 at 8:39 pm

    Great article. Vision is not always seeing. Vision is the determination this mother has for these children.
    Wonderful just wonderful.

    Reply
    • markbrodinsky says

      December 14, 2014 at 8:56 pm

      I agree Gail. Thanks.

      Reply

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Love seeing new blogs hit the ground running like this one (by a dad no less), but I also urge anyone vaguely interested in blogging to stay tuned, I am. Good luck on your journey – glad that I am along for the ride.

Rachel Blaufeld

Great blog Mark! I always appreciate reading what you have to say. You are very gifted and talented and hopefully someday you’ll not just blog, but write a book.

 Stephen Koncurat

I’m definitely along for the ride. We’ve all seen how much damage the written word can inflict. More positive writers are needed. And I love how you are using your personal experiences – those with your wife and children – and your gift of writing to open eyes and to inspire others.

Victoria Endicott

Absolutely beautifully written! The girls in your life must be very proud of you. Thanks for sharing Mark, I look forward to reading more!

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Very shortly this site will be famous amid all blogging and site-building users, due to it’s pleasant posts.

Leila Galloway

Absolutely beautiful! Are you at all thinking of penning a book? You’ve got a fan base out there that really thinks you should Mark. You write so eloquently. Glad that I got onto this site.

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Mark, You are truly a gifted writer and obviously, a special father and husband . Always a delight to read your words.

I’m speechless…beautiful words flow from your heart just like a gentle waterfall into a tranquil stream… thank you so much for the friend request I was blessed the day I clicked confirm.

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From your first writing in 4th grade entitled “People” which was published in the school newspaper, you have always been able to write. Never more so than when you started “Caringbridge” and now your blog, everyone who reads says what a wonderful writer you are. Our DREAM for you is to become an author and encourage people every day. You are by the far the best and we hope and pray you reach your dream.

Bonnie Brodinsky

I know you always thank us for reading but I would like to say thanks for writing.

Stuart Abell

Great piece. You are an inspiration!

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Mark I just wanted to let you know that you are succeeding in your “ultimate goal”. I have gained so much from your blogs. I look forward to reading them for the special lift that they give me. Thank you.

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I love waking up and starting my day with my coffee and your blog! It a great way to start my day with positive uplifting thoughts!! It puts me in a positive frame of mind throughout the day and allows me to reflect on my personal life, make changes, and grow !!!

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You are quite talented Mark. Thanks for sharing!

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I always look forward to your Blog Mark. Thanks for sharing and as you always do, make it a great / remarkable Day!

Chuck Connolly

Thanks for your Blog Mark. It is fun, encouraging and a nice break from a day full of ups and downs.

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With my busy schedule, there is (sadly) little time for reading. But I have two must-reads every time I come across them, the sports section and your blogs. Keep inspiring and following your dream!

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Mark, you are a truly remarkable individual. You do speak from your heart, I can’t wait to read your book. You are an incredible writer.

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Mark, I am glad I clicked on your post this morning, which lead me to your writing, your goal.
Would like to connect. This speaks to me.

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WOW!!! It Takes 2 is a must read for anyone who has known someone diagnosed with cancer or other life threatening disease. This is the real story of a family lead by an incredible woman, Debbie Brodinsky, who took radical steps to beat the breast cancer beast. The story is told by her husband, Mark Brodinsky, through journal entries he kept starting with diagnosis through one year cancer free. This author's unique ability to pour his heart out onto the page draws you in from the beginning and holds you until the very end.

Thanks to Mark and Debbie Brodinsky for this gift...I have a new perspective on what it means to be a breast cancer survivor. You are a hero, Debbie Brodinsky!

TeeBThree
September 25, 2013

ittakes2_reviews_2

This book gives a heartfelt, in depth description of what it is like to go through breast cancer with the one you love. It is beautifully written and I felt as though I was living it with them! I highly recommend this book!

Jgs17
September 24, 2013

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In It Takes 2, Mark Brodinsky windows us into his world where his wife, the cancer patient, is not the only victim. Part journal, part roadmap, It Takes 2 goes to the real humanity of facing the mortality of one's better half. Mark's candid perspective, love, and fierce intention resonate with hope in a story which is about much more than cancer. Mark himself is perhaps the most heroic character for the way he appreciates this life and so many of us in it...as he says, "thanks for caring."

Réné Pallace
September 24, 2013

ittakes2_reviews_2

It Takes Two: A Spouse's Story by Mark Brodinsky should be read by every person who is experiencing serious illness or injury or by a loved one of someone who is experiencing either of those situations. The book is an eloquent testament to the power of love and the healing energy derived from the belief that things will get better. There is not one word of "poor me" from the author or his wife who suffered breast cancer and the radical surgery she elected to have to beat the cancer. Rather, the book is a celebration of the courage displayed by them both in seeing it through.

The book also encourages readers to speak and write down their true feelings and be validated in them. John Mackovic writing in the Palm Springs, CA Desert Sun on November 2, 2013 quoted author and artist Doe Zantamata who said, " To be happy, you don't have to do anything new. You just have to remember how to believe again...Believe everything good is possible. Believe in your dreams. Believe in people. Believe in love. But most of all...believe in yourself." The author, his wife, their family and extended family and friends never stopped believing in his wife's recovery, and I think, in themselves. Read this book and believe.

Paul A. Riecks
November 4, 2013

ittakes2_reviews_2

This book is a must read for anyone with a family member with breast cancer. It takes you through the spouse's perspective from diagnosis to recovery. Mark journaled his wife's journey and put all of his emotions out there. It is beautifully written and inspiring to anyone going through breast cancer. Thank you, Mark for sharing Debbie's story.

Jmu1109
October 23, 2013

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A friend recommended this book. This was a great perspective of a man standing beside his partner and passing along to the reader fear, hope, useful information and a broader story than his own. I loved Vinnie the tattoo artist. This is a great book. Thanks for sharing, Mark and "thanks for caring"

Blahsan

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This book is a must read. What sets this book apart from other books about surviving breast cancer is that it is told by the husband and his point of view, not from the survivor. At times sad, at times poignant but even through the worst of it you can always feel the love he has for his wife, her strength and the strength of their extended family and friends. The posts that are included from their friends and family lets you really into the heart and strength of the family. I would recommend this book to anyone who is currently going through this, whether you are the person or the caregiver. I also recommend this book to anyone who has a friend that has been or is currently going through their fight now. It was an eye opener for me.

L. Bogash
Seven Valleys, PA

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There isn't a shortage of books about breast cancer, but most are written from the perspective of the person who has battled cancer or a physician or other expert. What an enlightening experience to read about breast cancer from a husband and caregiver's perspective! Not only does the author give us insight into his wife's experience and emotions, but he openly shares and reveals his love, compassion, support, and, yes, sometimes anger at the disease as he stands by his wife's side during their journey to beat the beast. Your story may not be the same, but I guarantee if you have a loved one battling cancer, you won't go wrong reading It Takes 2.

 PattiM
September 25, 2013

 

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From the moment I opened this book I never stopped reading. Mark invites the reader to come along on this journey that his family went through. I cried, laughed and learned so much. This book will give comfort and knowledge to those going through similar situations. Most importantly, Mark and his family never give up. They get knocked down and get right back up. They fought cancer together and with their strength, determination and will to prevail... They do!

 Jenny Schloss 

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