Raising Jess: A Tale Of Hope Book Tour

I’m so pleased to be part of author Vickie Rubin’s “Raising Jess: A Tale Of Hope” book tour. Raising Jess is one of the most heart warming, uplifting and honest written memoirs I’ve come across in a long time. Before I welcome Vickie onto the blog, here’s a quick book summary:


Raising Jess: A Story of Hope is the powerful story of one family’s survival when faced with adversity. Written with compassion, honesty, and humor, it tells of a family changed forever by the birth of a child with a rare chromosome deletion and their courageous decision to choose hope. Facing the challenges of caring for her daughter, marriage struggles, and the question of having more children, Vickie Rubin gives a glimpse in the world of her family and transformation while raising Jess. This beautiful, gripping memoir will delight and leave you wanting more.

Publisher: Page Publishing

Print length: 250 pages


Hello Vickie and welcome to the blog 😊

Hello! My name is Vickie Rubin, and I am the author of the award-winning memoir “Raising Jess: A Story of Hope.” This heartwarming story describes the joy and challenges of caring for our daughter, who was born with a rare chromosome deletion. I am a blogger and started my blog in March 2020, about the same time we were all told, “Don’t Leave the House!”  I am a mom to three adult children and Nana to three grandchildren. And Fur-Mom to two dogs (an Italian Greyhound, a therapy dog, and a Hungarian Vizsla). My husband Mitch and I plan to celebrate our 45th (YIKES, that’s a big number!) Anniversary in December.  

 “Raising Jess: A Tale of Hope” is definitely an uplifting and thought provoking memoir – what made you decide to write down your story? 

My Mom always said I should write a book. My adult children encouraged me to start writing after I retired from my career. Perhaps it wasn’t an official retirement since I became an author almost immediately—Hmm, failed retirement?   I felt an inspiration to share our story.  My original thought was that if “Raising Jess” didn’t get published, the narrative would still be a legacy for our family. The book was also written to demonstrate to readers that it is possible to be a thriving, active family, have more children if you wish to, and be involved in everyone’s life, “even though” you are faced with many challenges. Things WILL get better, “even though” it is hard to see that when you are in the thick of it. Additionally, the memoir raises awareness of what it is like behind closed doors for a family raising a child with severe intellectual and physical disabilities, demonstrating survival and hope with humor. It’s vital for professionals working with families of individuals with disabilities to read about the parents’ perspective. Raising Jess is our story of hope.  We believe hopecan be found in family, friends, and groups of people with similar experiences. Hope is all around if you keep looking. 

Your book highlighted for me how hard raising a child with a disability can be, how the need for a supportive network is vital; managing family dynamics as well as  the other various emotions and dilemmas faced ; combined with  moments of pure joy.  What helped you get through your toughest moments when Jess was first diagnosed?

When Jess was first diagnosed, I felt a sense of relief. I know that is not what you expect to hear. We knew she was delayed, yet the pediatrician continued to dismiss my concerns.  At one point, the doctor told me I needed counseling because Jess was fine. Well, perhaps I needed counseling, BUT Jess was not okay.  When my husband and I finally received confirmation from another physician that Jess was delayed in all her milestones, we were heartbroken, yet I felt a sense of relief. Now I can do something to help our daughter! Learning as much as I could from other families, attending therapies, and, at one point, trying alternative exercises for Jess kept my days active.  What helped me was finding friends who empathized with us without feeling sorry for us.  And having more children. Our three children and now our grandchildren are the joys of our life.  

Jess has the rare 1q43-44 chromosome micro deletion syndrome … what’s that exactly? 

1q43-44 microdeletion syndrome is a rare genetic diagnosis in which a portion of the long arm (Q) of chromosome one goes missing. This leads to a mix of symptoms, including developmental delays, intellectual challenges, speech issues, motor difficulties, unusual physical and cerebral traits, seizures, and distinct behaviors. Often, this syndrome arises due to a spontaneous gene deletion, but sometimes, it’s passed down in families.  Managing this isn’t a one-size-fits-all approach. It involves tailored therapies, medical help for seizures, specialized education, community services, and support. Given its rarity (fewer than 1000 cases in the USA), consulting with genetic experts and medical professionals is crucial for up-to-date information and support.

 OK, now the definition in mom-speak is that Jessica is missing a piece of her first chromosome.  It happened suddenly at conception, as confirmed by my husband and my genetic testing.  We are not carriers, so it was not passed down from us. This means that Jessica’s siblings are not likely to have children with the same genetic diagnosis.  Finding the correct diagnosis took 21 years because the technology had to catch up to our daughter, Jessica! 

Were there any aspects of writing your book that surprised you, either by being harder or easier to relate than you expected? 

Writing the chapter on the grandparent and sibling experience was difficult. First, did I really want to hear what Jessica’s brother and sister had to say about their childhood? The answer was yes, and the resulting interview is an activity I would recommend for all families. One example was when I asked Jessica’s brother, “How would you describe Jess today to somebody you just met?” He did not describe her disability, loud noises, wheelchair, or hardships. It was simple: “She’s mysister

Exploring the grandparent experience was more complicated than expected, especially interviewing my parents. I wanted to open a dialogue about Jessica’s grandparents’ perspective, so I sent my initial email to Dad. I informed him that I was interviewing everyone about their relationship with Jess and emailed the questions, hoping it would be easier for him to ponder at his own pace. 

Dad’s reply was the following:

“These are tough questions. I am thinking about them and realize I came up short as a grandfather. The questions have made me go back and think…I know I would do anything to make her life easier, but the interaction was different. It opened up a lot of questions. I am afraid Icame up short.”

I was daunted after I received Dad’s answer to my interview. “I think I came up short” resonated with me. I did not expect that response. My answer to him was:

“The questions were not intended to hurt you—your help made the difference between us making it and not, so if you think you came up short in one area, you exceeded in others.”

I truly appreciated his honesty and tried to make sense of his words. My dad was born in  1930 and raised in a highly different era where individuals withdisabilities were rarely cared for at home. Considering the time period in which my father was brought up, it was important to understand the norms for parents of that period. Back in the day, it would have been unusual for a child with adisability to be visible; most spent their childhood in institutions and were seldom seen in public.

I recognized that my parents’ experience with individuals with disabilitieswas limited, and their views were shaped by society’s attitudes in the decades they were raised. There are no hard feelings about my parents not knowing howto get involved. Perhaps I should have made suggestions or encouraged moreinteraction, but I also didn’t know how. It is a gift that this conversation with my parents was possible; it was enlightening for each of us.

I loved your writing style and the honesty that shone through.  I particularly liked the chapters written by Jess’s siblings about their feelings growing up – it’s so important for them to have their viewpoints heard, too. Did you find writing your story about raising Jess therapeutic? 

Thank you! And yes, writing was therapeutic for me. Writing each day about raising Jess and our family helped me to remember, evaluate, reminisce, and appreciate those years. My husband and children were my first editors, and that process opened up many new conversations and “Ah-Ha” moments.  The humorous instances came back with a roar and still keep me laughing.  

Talking about therapeutic, I was so busy writing, editing, publishing, and promoting during the Covid years 2020-2021 that it kept me sane; writing balanced and helped me look forward to something during those “groundhog” days.  

One thing I did feel was how strange it must have been for you to go from having Jess at home to having her at the stage of life where she wanted to be “independent”and have her own home . How difficult could you adjust to Jess living in a different place?  How well did Jess adapt? 

Choosing a group home for your loved one is monumental. Selecting a residential option outside of our home felt like giving up. We are her loving parents! Were we no longer willing or able to provide the daily physical care for our daughter? Were we making the right decision? Jessica was approaching age 25. As mom and dad, it was unreasonable but understandable to think we would always be around to provide the intense care that Jessica required. The hard reality hit us as she and we aged.  Mitch and I needed to make this decision when we were clearheaded. We knew that moving Jessica into a home in our community, with the proper support, was vital to her future and ours. We wanted Jessica to continue living a happy life surrounded by friends and family.  She deserves the privilege to live with her peers as independently as possible.  It took a while for me to find myself after Jess moved. My identity was my mom, who had a 24/7 responsibility.  Who was I now? Who were Mitch and I as a couple? It took a while to find ourselves, but we did. Even though Jess is in a group home, she is still our daughter and still needs intense family involvement.

Jess adapted remarkably well. Familiar items from home surrounded her, and we visited often. I think she was ready to leave her parents’ house!

What advice would you give to other young families finding themselves in a similar position to you?

●       When I discovered that Jess was delayed, I was so focused on fixing Jess that I didn’t stop to be momma and baby.  I was too focused on the therapy, not the fun (but this didn’t last long). Remember to have fun.

●       Accept support and help from others

●       If you have a spouse or partner, plan twosome time each week. Whether you are going out or on a date at home when your child is asleep.  

●       When you get on an airplane, the flight attendant reminds you to put on your mask first and then help others. The same applies to caretakers. Remember to take care of yourself so you remain strong to care for your child.

●       I found a Facebook group with families who have similar concerns helpful – but you need to be careful that it is a supportive, positive group and not a complaining group that can bring you down

●       Stay positive -Jessica changed our life for the better and has taught me more than I will ever teach her.           

Vickie’s current favourite shoes – Cole Haan Platform Wingtip Oxfords

You have a blog called “Vickie’s Views”  – What do you enjoy most about blogging?  

“Vickie’s Views” offers a blend of heartfelt wisdom, humor, and warmth, combining personal anecdotes and professional insights on disability, travel, and everyday life. I love writing a blog that touches others and receiving comments. Knowing that readers relate to or find comfort and humor in my words gives me joy.  I feel a huge connection with my readers.

Is “Raising Jess: A Tale Of Hope” available to purchase worldwide? Amazon UK Amazon BE

Personal now – what outfits and shoes would you normally be found wearing? 

I spend a lot of time exercising and playing with my grandchildren. So, as much as I like clothes, shoes, and bags, I typically wear leggings, tees, and sneakers! My four-year-old granddaughter is very into princess wear and gowns. She complained that I was not fancy enough for a day of hanging out at home. Below is a photo of formal wear with Noa on a random Tuesday. 

Do you have any favorite shops or online sites?

 I try to shop locally, but when I am unable to do so, I most frequently go to Bloomingdale’s. I admit I buy a lot of Amazon, which is the opposite of shopping locally. 

What’s next on your clothes/shoe wish list?

I have a pair of Armani wide-pleated trousers and a skirt. They look like pants from the front, but the back is a long skirt. Weird, right? They were my mom’s, and I tried them on and loved the fit, style, and, yes, the weirdness of the look. I am invited to a wedding in August and am looking for the perfect top to go with the pants/skirt. Please help! 

Boots or Shoes?

I live in Buffalo, NY, so I guess I should say boots, but I want to say shoes.  I wrote a blog about my first pair of fancy shoes. Finding the right shoe to go with an outfit always feels good!  I try to go for a pop of color like red or pink, more recently, light blue.  But my current favorite shoes are my Cole Haan silvery-gold Platform Wingtip Oxfords.  My husband and I traveled to Texas, and I bought my first pair of cowboy boots. I absolutely love them for their looks but not the comfort!

My real obsession is designer purses. I know, I know—what a waste—but if you divide the cost by the years of wear and tear, it’s not so bad! I own my mother-in-law’s Gucci handbag, which is over 50 years old, but if you look at it, it looks new—and it didn’t even need handbag Botox!

Below are the first pair of fancy shoes– Ferragamo

Links you would like to share:

·        Raising Jess (Amazon)  amzn.to/3DDSQt5  

·        Shop page on website https://bit.ly/RaisingJess

·        Barnes and Noble

·        Vickie’s Views- https://vickierubin.com/  

·        Facebook – https://www.facebook.com/RaisingJessStory

·        Instagram 1- https://www.instagram.com/raisingjessstory.vickierubin/?hl=en

·        2-minute PBS video – Vickie Rubin




Fantastic to chat with you, Vickie – and for that wedding to go with those delightful sounding trouser/skirt combo, how about a brightly coloured patterned or floral camisole/floaty top to contrast with your black bottoms ? Fuchsia pinks/oranges with splashes of black ? 😊

Linda x

All photographs have been published with the kind permission of Vickie Rubin

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