Candid Conversation: Raising Jess and Finding Hope

It’s inspiring and comforting to connect with other parents on the special needs journey.

Vickie Rubin is the author of Vickie’s Views, a heartwarming and inspiring blog about raising her daughter Jess. Vickie has a background in early childhood education and special education. This month, she releases her memoir Raising Jess: A Story of Hope.

When Vickie reached out about writing a guest post on my blog, I asked her to take part in my first “Candid Conversation” post – to have a parent to parent chat – and she kindly agreed!

Thank you for reaching out, Vickie. Please tell us about your daughter, Jess.

How to describe Jessica succinctly, hmm. Jess is 39 and was diagnosed with a chromosome deletion 1Q-44 when she was 21. Before that and the development of more sophisticated tests, she had what we called “Jessica Syndrome.”

Jess loves her family, friends, and music. She is usually the bright light in the room. Her smile is pure joy, as is her greeting of screams when she sees a familiar face. Jess lets you know without any words that you are loved and appreciated. She has taught me way more than I have taught her.

Congrats on your memoir! What inspired you to write this book?

Ever since I can remember, my Mom said, “You should write a book.” My response was repeatedly, “I am raising three kids, one who requires total assistance with everything.” The answer eventually included, “How can I write a book; I am working full time?” Usually said with only the annoyance a daughter can muster! And yet, she persisted.

I published many essays in newspapers and magazines, and each time I shared them with Mom, she would say, “you should write a book,” as if it was the first time suggesting it! How annoying!

I retired in December 2016, and my kids bought me an old school dictionary, thesaurus, and journal and said start writing.

Newly unemployed and with time on my hands, I decided to do it! Every day for three years, I wrote. The result was the book “Raising Jess: A Story of Hope,” due out July 2021.

Writer David Wade once said in the London Times that “experience needs distance and what you write of at a distance tells not so much of what you were like as what you have discovered since.”

Unfortunately, as I was writing my book, my mother was diagnosed with Alzheimer’s. After all the years, I finally did what she asked! And I loved every minute of it. Regretfully, it was too late to talk in-depth with Mom about the chapters and process.

I’m very sorry about your mom, but I am glad that you got to fulfill her wish.

I’m on an earlier part of the special needs journey and as you know, “special needs” is such a broad and complex spectrum. One common thread I’ve observed about parents on this journey is the concept of loss and grief.

What is your advice for parents who may be experiencing loss and grief?

My career focused on working with young families of children with “special needs.” I know the essay Welcome to Holland can be considered corny, but it also resonated with me. 

I think families need to acknowledge that the child they dreamed of is different than their expectations. But different doesn’t mean bad. It’s ok to feel loss and grief. But, then you embrace your child, who is different from anyone you imagined, and build a new dream together.

Many families make the mistake of isolating themselves from friends, especially those with similar age children, and family. From the beginning, we remained close with our friends and found a wealth of support and love. I often hear now that Jessica’s same-age peers are amazing advocates because “when they were growing up, they knew a girl…”

My Mom always felt bad for me and was unable to overcome her grief, so that she could genuinely enjoy Jess. Parents may find that their parents are grieving for their grandchild as well as their child.

Support groups – the right ones and not the bitchy-complaining ones – were beneficial for us.

What a great attitude, Vickie! I loved the “Welcome to Holland” essay. Thank you for sharing!

On the flip side, I love that parents such as yourself are using platforms such as blogs and social media to celebrate, advocate and showcase successes. What have been your most proudest moments in your journey with Jess?

For my book, I asked my kids and family that question, and everyone came up with the same reply, Jessica’s Bat Mitzvah. 

This is a clip from my husband Mitch’s speech to Jessica: “This day is so meaningful to our family, an evening where Jessica is celebrated and honored for being a Bat Mitzvah as any other Jewish girl of thirteen. We have come a long way as a family and a community to have total acceptance. It’s not easy; it is many times a great effort, but the outcome of inclusion, acceptance, honor, and love is worth the effort.”

Watching how Jessica’s siblings embraced Jessica and did not feel slighted because of all the care Jessica needed. They believed they could do everything they wanted as a child; it just took longer to get there!

Walking Jessica across the stage for her high school graduation and Jessica winning the Principal Award: The principal for her school invited Jess and our family to a gathering of all graduating students who were winning awards. 

The last award was for Jess and the principal said, “This student overcomes hardships every day of her life.” He spoke of the student’s courage and enthusiasm for school. He went on to say that although this student has many challenges every single day, she still comes to school with joy and a smile and brings that joy to all those around her. “This award goes to Jessica Rubin!”

Thank you for sharing that. I know other parents and youth reading this will feel inspired!

I’m fascinated by the writing process, especially when it’s so personal. How did you decide which moments to highlight in your book?

I think this is one of the reasons it took me so long to start the book. I kept imagining a textbook – which overwhelmed me to no end.

I also imagined a book that started on Day One, we did this etc. But then I read the memoir The Diving Bell and The Butterfly, written in essays, and I knew I found my writing style. I had already been writing essays to our local newspapers, similar to my blogs, which is my writing style. 

The Book Raising Jess: A Story of Hope is written in essay form and covers highlights of our life. It talks about the challenges of caring for our daughter with disabilities to marriage struggles and the question of having more children. The book gives a glimpse into the world of our family and transformation while Raising Jess.

That’s an interesting and pragmatic approach! And your blog is certainly a collection of even more essays.

You recently wrote a touching post about turning lemons into lemonades during the pandemic. As a parent, I feel that adaptability is a quality required to get through the challenges. Where do you draw your inspiration from to turn your lemons into lemonade?

Jess inspires me. She has so many reasons and barriers that would prevent her from experiencing joy in life, yet she appreciates delight more than most. I also think letting go of comparing to peers; it’s so tempting yet so damaging.

Follow your journey. It’s ok. We are all different, and we can all learn from each other.

I had a call the other day from a peer of my youngest daughter. His friend has a baby that will most likely have significant disabilities. He asked me to speak with the parents and told me all he learned from watching Jess grow up. Jessica’s legacy is so far-reaching; she has touched so many people in positive ways. I find that truly inspiring.

Thank you, Vickie, for sharing your story. I’m glad that we met through the blogging community. I’m so moved by your and Jess’ story and look forward to picking up your book. Best wishes with your launch this summer!

About “Candid Conversations”

If you’re interested in taking part in a “Candid Conversation,” my blog’s version of a guest post, please reach out at mylovablepest@gmail.com.

Please note: I don’t accept monetary compensation or promotional “freebies” and I am selective about the content that I share. The intention for these conversations is to amplify inspiring stories and important information – and not to market/promote products.

We can all learn so much from each other and do our part to support each other – and I look forward to hearing and sharing your stories.