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The Sunday Series Begins: It’s Just About… Life.

October 13, 2013 By markbrodinsky 5 Comments

The Scher Family
I begin a new chapter with the blog today, as I continue with the mission: to become more, by helping others to do the same. In essence my goal is to touch other people’s lives, one word at a time. Beginning this week it’s the Sunday Series, something I will make an honest attempt to do every Sunday morning, to tell the world about you, to share your story.

The stories I am looking to share are those of tremendous courage, hope, inspiration, education and joy. In other words, those people who face great challenges yet find a way to overcome. Those who lead a path we all can aspire to follow. Those who have a way of lifting us up when we’re down, AND those who are living the dream, meaning from my point of view, they are doing exactly what they were born to do and have found a way to affect other people. They have been born, and now they know WHY. We can learn great lessons from all of the above.

The first ever in this Sunday Series: Ian’s Story.

His name is Ian Scher. He is the son of Marci and Brian Scher, the twin sister of Becca Scher and for most of the ten years of his life…Ian has struggled. Struggled to move, struggled to breathe, struggled to survive. His family has done the same, because every moment of Ian’s discomfort steals a piece of their heart.

Ian has a rare motor neuron disease, a mutation of the VRK-1 gene, a degenerative muscular condition. Marci says it is best described as a child’s form of ALS. The bottom line… it’s a terminal illness. Those are tough words to think, tougher to write, unimaginable to speak out loud, but somehow Marci is able to harness the will to do so. She can say the words out loud because Marci and Brian have accepted the inevitable. Now it’s up to them to make Ian’s journey as meaningful as possible.

Currently Ian has round-the-clock care, whether it be Marci and Brian, or the daily nurse who comes to the home, (minus the weekend days). Ian has no movement at all, he needs someone nearby in case he wants or needs something and especially if he should experience respiratory distress, (he has a trach and a ventilator, which since coming home from the hospital, have basically saved his life.) Ian can tell you what he needs you to do for him, his parents and his sister have become Ian’s hands, arms and legs. But Ian’s voice is growing weak and communication has become a challenge.

Ian attends a half-day of school (Chatsworth Elementary) and then he is tutored in math at home a few times a week. He is part of the Gilchrist Kids Palliative Care program, more like hospice-at-home. Home is where the heart is, and Marci, Brian and Becca want him to be there.

Brian_Ian003
In light of the darkness, there have been moments of wonder: Ian throwing out the first pitch at the Orioles game at Camden Yards this past August, Ian going to sleep away camp this summer for 13 days at Camp Simcha Special. And a few years ago, through the Make-a-Wish foundation, Ian getting to go to Orlando to meet Spiderman. I would say the honor belonged to Spiderman, since the real super hero was the one who came to see him!

yes I can
There has been heroism in the Scher’s struggle to learn what is wrong with Ian. For most of his life, no one could figure it out. But the Scher’s were not giving up. It wasn’t until a test, Whole Exome Sequencing, which became commercially available a short time ago, that the family finally could learn the truth. Blood was drawn in March of last year, and by July of 2012, the Scher’s had their answer. Ian had the VRK-1 gene mutation, only one of six people in the world known to have the disease. Marci and Brian are carriers. The chances of this happening are astronomical. The consequences…devastating.

But Marci told me a big moment in this journey was finding out why. She said, “having diagnosis was a huge weight lifted off of us. A huge loss would have been him passing away and not knowing what it was that caused it.”

So now there are the day-to-day challenges of Ian’s care, but Marci say it’s much more than that, “I still remember Ian walking and running around. It’s hard seeing other boys doing things I know he wants to be able to do. But maybe the biggest challenge for Marci is, as she says, “in my own mind, imagining what life will be like after. Knowing I can’t fix this.”

Ian in chair
No one can fix it. And this is the reason I chose to tell Ian’s story as the first of the Sunday Series for this blog. Take a good look at the Scher family, facing life’s greatest loss, and watching it happen in slow motion. But each day they find a way to make every moment count, to give Ian every chance to live as normal an existence as possible, to make sure he gets to experience his share of this world, so he can touch others and have them transformed by him… no matter how much time is left.

Yes, the Scher family is redefining what it means to be courageous, determined and devoted.

Marci says she wants the message of this story to be about education. She wants others to know this gene mutation is out there, so they don’t face the same nine-year struggle her family did, trying to find out what was wrong with their child. But whether Marci, Brian and Becca admit it or not, their message goes so much deeper. It’s not easy to find the right words when facing the prospect of losing a child, but you need not look far, it’s the title of Marci’s own journal she is keeping during this journey: Treasure yesterday. Dream of tomorrow. Live for today.

Thanks Marci we will. And, we will pray for a miracle.

Until next time, thanks for taking the time.

Mark

(Update: This story unfortunately ended as the Scher family expected. Ian passed away on September 15, 2015. A true super hero to the very end, the world is a far better place because he came this way.

If you are inspired by Ian’s story and wish to honor his life you can make a donation to: Gilchrist Kids, 11311 McCormick Road, Suite 359, Hunt Valley, Md 21030

 

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Comments

  1. Sheila Weinberg says

    October 13, 2013 at 5:03 pm

    Mark, thank you for telling Ian’s story. As grandparents it is so hard to explain to people what our children are going through, but you have expressed it beatifully for us. Again, thank you

    Reply
    • Mark Brodinsky says

      October 13, 2013 at 5:07 pm

      Sheila,
      I thought about you while Marci and I were talking. Parents live for their children, to see your child’s child in pain, I can’t imagine….
      Live every moment, Marci and Brian are showing you how.

      Reply
      • Sheila Weinberg says

        October 13, 2013 at 5:22 pm

        We are trying! Thanks

        Reply
  2. Mark Brodinsky says

    October 13, 2013 at 8:06 pm

    Reblogged this on Mark Brodinsky and commented:

    Thanks to the Scher family for asking me to share their very personal journey. Their message and their example of tremendous courage and devotion is resonating. Their story has made the debut of The Sunday Series, for my blog, “It’s Just About… Life, the most shared post ever. I’m sure I speak for them when I say… thanks for caring, Mark.

    Reply
  3. Harry & Lucy Blacker says

    October 14, 2013 at 2:05 pm

    Beautiful story. Our prayers are with my cousin Marci and her family. G-d bless you all!!!

    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!

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

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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

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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

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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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