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The Sunday Series (110), with Mark Brodinsky

June 12, 2016 By markbrodinsky 1 Comment

It starts with the offering to go deep and to ask a few questions. Perhaps it’s never been explained better than through these words from author Dean Del Sesto:

“The empty pleasantries of dancing on the surface of people’s lives seem the norm when real richness exists in engaging at a deeper, more intimate level. Discovering what is really going on with people is the beginning of relationship, and it can be done without being obtrusive simply by asking great questions, ones that challenge, open up and reveal what is real for a person.”

We need to get real…because everyone has a story.

I am Mark Brodinsky and this is The Sunday Series.


The Sunday Series (110): The Vision of Life

Zach now

We’ve all heard the saying silence is golden, but not when you come into this world unable to hear a single sound.

Rachel Root says it all began when her son Zachary failed his first test. Only one day after he was born, it was standard procedure at the New Jersey hospital to test the new baby’s hearing. “There were a bunch of people in the room when they came to do the hearing screening”, says Rachel. “I went to the University of Michigan, my husband Jared went to the University of Arizona. When Zachary failed his first test, we all joked, we thought it was funny, he must take after his dad.”

baby zach

But on day two when their new baby failed the same hearing test no one was laughing. “It felt like someone slipped a noose around my neck”, says Rachel. ‘What do you mean he failed again?’, I said. “My husband’s uncle is a pediatrician, he told me he never had any kid fail the newborn screening test and had it turn out to be anything significant. But I knew. When I nursed my daughter Emily after she was born she would jump if she heard a noise. With Zachary there was nothing, no recognition of sounds. My husband’s uncle thought I was crazy, I was panicked.”

A week later Zachary’s hearing test was a flat line. At 30 days of life, the same result. The Root’s were given a pamphlet on how to raise a deaf teen. Rachel says, “my husband was punching walls, I was heartbroken.”

For most parents when faced with a challenge to help their child, they leap into action. Rachel is no different, she says she wasted no time, her personality is to do something right away, to fix the problem. But what Rachel didn’t know, though she had her suspicions, another challenge was on the horizon.

She and Jared immediately met with an early intervention team and Rachel says the first thing this woman did was toss the pamphlet they had been given into the garbage. This woman told the couple there was hope, they referred them to a surgeon, Dr. Roland and an audiologist, Theresa Shaw. Rachel says Theresa gave her hope. “She didn’t speak to me like this was a scary diagnosis”, says Rachel. “Others were shocked by all this, she was not shocked, she was very matter-of-fact. There were options.”

The options consisted of hearing aids for a few months, then an evaluation of their usefulness for Zachary to receive cochlear implants at 6-months, a delicate procedure which could change his life. There was also a trip into the city (New York) for Rachel and Jared to visit a hearing center, meet with other parents whose children were recently diagnosed and to hear from some children and young adults who had been born deaf, but for whom the cochlear implants changed everything.

Rachel remembers, “It was amazing for Jared and I. There was a 5-year-old, a 7-year-old, a teenager and a college student. To hear them speak, there was nothing to tell they were deaf. We needed to see proof that Zachary would be OK.” Rachel also needed to know she would be OK, so she joined a weekly support group with other parents going through the same thing. With the support group, and a successful, but delicate surgery at 7-months-of-age, Zachary was finally on his way to hearing and speaking. Rachel says it was such a joy when Zachary learned his name and would look up when she and her husband called to him. “Everything was a huge milestone”, she says. At the same time Zachary was doing what any normal baby would do, growing, and gaining the skills of sitting, then standing.

But Rachel noticed something was a little off.

zach in chair

She says her son was late to sit, late to stand, (later then the other kids around him), and so Rachel started Zachary on physical therapy. The doctors had told her sometimes children with hearing loss can have issues, but as he continued to grow Rachel says she saw more of a difference between Zachary and his peers.

And there was something strange happening at night.

Rachel says, “I would come into his room at night, and he would look right past me. He would ask,’ Mommy, Daddy who is it?’ “It was like he couldn’t see me at all in the darkness. Zachary is also obsessed with Jared and always wanted to see him in the morning, but if there was a morning Jared left early, Zachary would go over to his pillow and lay down to “see” if he was there. All the doctors told me I was crazy, there was nothing to worry about.”

At the same time Rachel thought Zachary might be experiencing issues with his sight, the man who helped bring vision to Rachel’s own life, her father, was killed in a tragic car accident. “It was devastating”, says Rachel. And a soon-to-come family reunion made things even worse.

Emily, Rachel and Rachel's Dad

Emily, Rachel and Rachel’s Dad

“A few months later we wanted to get all of the family together and had some of my cousins over the house. After watching Zachary, one of them who does not have kids yet, came over to ask me if I ever heard of Usher Syndrome. She said she and her husband were trying to have a baby, had been tested and she was a carrier. I was sick about it. I couldn’t let it go.”

After a few months, the Root’s finally managed to get their son tested. The result: Zachary was diagnosed with Usher Syndrome 1f,  a syndrome where a child is deaf in both ears, as well as eye disease which causes night blindness and a gradual loss of peripheral vision, leaving only “tunnel vision” and in a small number of cases, can lead to total blindness over a lifetime.

Rachel recalls the moment she found out: “When the call came in with the news, I told the woman on the other end I would have to call her back in 20 minutes. I was so upset I couldn’t understand what she was saying. We were doing so good. We overcame deafness, my mom getting breast cancer, my dad dying suddenly. And now this… it was one of the scariest things I heard in my life.”

Rachel says there is very little funding specifically for Usher 1F, but a mother in Boston started a collaborative, non-profit foundation, (http://usher1f.org/). And there is Dr. Edwin Stone, researching and fighting for the cause at the Stephen A. Wynn Institute for Vision Research, (Wynn, the billionaire businessman, has retinitis pigmentosa and donated 25 million dollars to fund the center at the University of Iowa). Rachel and Jared also turned to Facebook to share their message about Zachary and to raise funding to help find a cure. They have already raised $200,000 for the Usher 1f non-profit.

vision center

Zachary, who is now 4-years-old has gone through extensive testing. For now its been determined he has cystoid macular edema, cysts under his retina which affect his central vision. The Root’s are doing their own trial and currently put drops once-a-day into Zachary’s right eye. If it works in one eye, then both eyes would get the drops. The family goes back at the end of this month for additional testing.

zach eye test zach hearing test

Rachel says in the first 4-years of his life Zachary has been through so much. Yet it is the resiliency of youth and the wonder of the early stages of life which Rachel says have let her son be just like every other kid.

“He happens to be the sweetest, happiest, most even-tempered boy”, says Rachel. “He doesn’t know he’s different. He has a great group of friends. If his cochlear implant falls off, they put it back on for him. He’s had so much therapy and so that’s made him so good being with other people and working with other people. He has a hard time with balance, a hard time on the steps and it can be tough on the playground with other boys. He’s a little more hesitant. But my mom and I joke God may have taken the other “stuff” from Zachary, but made him the sweetest boy ever.”

Video

“My older daughter Emily, (10-years-old), has had a hard time with everything. She has no symptoms, never did, but all of this experience has happened to her too. She was also very close with my Dad because he would take her and spend time with her while we ran to all these appointments with Zachary.  She did a bake sale at school for Zach. She even brought him into school and explained it all to her class. How she explained it and how accurate it was, was amazing. She was heartbroken when she learned Zach might go blind.”

“My husband and I have become animals when it comes to fundraising and raising awareness about Usher Syndrome. We say it all the time, we will stop at nothing for this little boy. People say you are amazing – we say it’s our kid – we put on a great face – but we are scared, it’s scary. When my dad died the hardest part for me was there was nothing I could do. I had to just take it and accept it. But with Zachy, I can do something.”

As with any challenge in life there are lessons to be learned, perspective to be gained, and a sharing and caring which comes out of all you have experienced and the vision of a long road ahead.

Rachel says she has gained so much perspective: “I think the thing I learned the most is as bad as you feel in the initial moment, it has to get better and it does. My mom, my dad, the usher syndrome, the unknown is scarier then the known. As bad as it is, it’s going to get better. You don’t live in the anxiety part forever. It’s not as scary once you have all the facts. I still have my moments, but it gets better.”

Zach's Teachers & Therapists

Zach’s Teachers & Therapists

Many researchers are confident that in Zach’s lifetime he will be able to see again and there will be a cure. The Root family hopes that vision comes true. In the meantime, they await Zach’s next vision test, and their never-ending quest to see a bright future for their son.

rachel and jared

You can help too – visit (http://usher1f.org/zachary-root/), (http://usher1f.org/) to learn more, or to donate.

And until next time thanks for taking the time,

Mark

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Author: The #1 Amazon Best Seller: It Takes 2. Surviving Breast Cancer: A Spouse’s Story
(http://www.amazon.com/Mark-Brodinsky/e/B00FI6R3U6)

Huffington Post: (http://www.huffingtonpost.com/mark-brodinsky/)

The Profile: (http://www.talkinggood.com/profiles/MarkBrodinsky)

The Podcast: (https://itunes.apple.com/us/podcast/sunday-series-courage-inspiration/id1028611459)

USHEALTH Advisors: (http://www.prweb.com/releases/markbrodinsky/072015/prweb12862708.htm)

 

 

 

 

 

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  1. Featured in the Sunday Series « Usher 1F Collaborative: Vision for Our Future says:
    July 2, 2016 at 4:32 pm

    […] Type 1F and raising a child with Usher Syndrome with Mark Brodinsky in the Sunday Series.  Click here to read the […]

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Mark Brodinsky
Emmy Award Winner, 1996

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Blog Reviews

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!

Gina Glick Jolson

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.

Marilyn Lefkowitz

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.

Lynne Turner Dorsey

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!

Rob Commodari

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.

Amy F.

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 !!!

Gayle Blank

You are quite talented Mark. Thanks for sharing!

Cynthia

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.

Jackie Hetrick

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!

Ed Nemec

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.

Debbie Press

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.

Aileen Braverman

I can’t wait to read the book. I have followed all the blogs and feel so good that I know u guys. You make me cry but you make me laugh too. All the very best to you!

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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

ittakes2_reviews_2

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

ittakes2_reviews_2

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

ittakes2_reviews_2

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

ittakes2_reviews_2

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

 

ittakes2_reviews_2

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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The Sunday Series: (52), with Mark Brodinsky

The Sunday Series begins a new year.  What we do here each week is to share a story, one of courage, hope, or inspiration. A story about you –  you overcoming a great challenge, you lending a helping hand, or helping someone else to simply survive, or you living your purpose, doing what you were […]

It Takes 2, THE WORLDWIDE LAUNCH: It’s Just About… Life.

I believe our lives and our hearts can be as big and as deep as the ocean. With that belief in mind, today I throw a pebble in the water…and make a wave. It Takes 2. Surviving Breast Cancer: A Spouse’s Journey is officially published and launched into worldwide distribution. A dream realized, yes. But […]

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