Vickie Rubin: An Introduction
Author of “Raising Jess: A Story of Hope”
Many years ago, my husband Mitch and I received news that would change the course of our lives. Our daughter, Jessica, was born with a rare chromosome deletion, and very little was known about what her future might hold. Like so many parents facing the unexpected, we learned as we went—celebrating victories, navigating challenges, and discovering joy in places we never imagined.
Those experiences became the foundation for my award-winning memoir, Raising Jess: A Story of Hope. But Jessica’s story is only part of mine.
On this website, you’ll find inspirational stories about family, caregiving, disability, friendship, aging, and the everyday moments that connect us all. You’ll also find RV travel adventures from the road, reflections on life, a bit of humor, and occasional observations that begin with, “You can’t make this stuff up.”
Whether you’re a parent, grandparent, sibling, caregiver, educator, RV traveler, or simply someone who enjoys a good story, I’m glad you’re here. I hope you’ll find something that makes you smile, think, laugh, or feel a little less alone.
Grab a cup of coffee or your favorite beverage and stay awhile.
About My Book:
Raising Jess: A Story of Hope
When doctors couldn’t tell us what our daughter’s future would look like, my husband and I did what most parents do—we worried, hoped, asked a million questions, and somehow kept moving forward. Along the way, we learned that raising a child with severe disabilities requires patience, perseverance, creativity, and a very good sense of humor.
Raising Jess: A Story of Hope is the story of how our family learned to navigate severe disabilities, endless appointments, advocacy battles, and the lifelong role of caregiving. It’s also the story of birthday parties, family vacations, unexpected friendships, laughter around the dinner table, and the countless moments that reminded us that joy can thrive even in difficult circumstances.
With honesty, humor, and plenty of heart, I share the realities of raising my daughter Jessica, who was born with a rare 1q43-44 chromosome deletion syndrome. There were challenges we never anticipated, tears we couldn’t avoid, and lessons we never expected to learn. But there was also laughter—often at the most unexpected times—and a deep appreciation for what truly matters.
Whether you’re a parent, grandparent, sibling, educator, therapist, caregiver, or simply someone who enjoys an uplifting true story, Raising Jess offers a window into the disability experience and the resilience of families who live it every day.
At its heart, this award-winning memoir isn’t just about disability. It’s about family, hope, perseverance, and discovering that sometimes the life you didn’t plan becomes the one that teaches you the most.
About 1q43-44 Microdeletion Syndrome
1q43-44 microdeletion syndrome is a rare genetic disorder in which a portion of the long arm (q) of the number one chromosome is lost. For healthy development to occur, all 46 chromosomes should contain the correct amount of genetic material. Loss of the genetic material in individuals with 1q43-44 leads to developmental delays including motor and speech difficulties, as well as intellectual disability. Affected individuals also have distinctive physical features, variable structural brain anomalies, seizures, and behavioral differences.
Most often, this syndrome arises due to a spontaneous chromosomal deletion, but occasionally it can be passed down in families. Molecular cytogenetic tests are the diagnostic test of choice, providing a detailed look at the missing genes within the deleted region.
Managing patients who have a 1q43-44 deletion isn’t a one-size-fits-all approach. It involves tailored therapies, medical management of seizures, specialized education, and community services & support. Given its rarity (fewer than 1000 cases reported in the USA), consulting with genetic experts and medical professionals is crucial for up-to-date information and support.
»Parent Resources for Chromosome Disorders and Rare Diseases
Vickie’s Views: Short, Funny, Heartwarming Blogs
Life with Jessica, my remarkable adult daughter with a rare chromosome deletion, has been an enlightening journey. Each bend in our path has revealed moments of joy, enduring memories, and strengthened our familial bonds. “Vickie’s Views” offers a blend of heartfelt wisdom and warmth, combining both my personal anecdotes and professional insights on disability.
From the highs and lows of parenting to the joys of grandparenting and stories from our travels, you’ll discover narratives that resonate. Think of it as sharing meaningful stories over coffee with a friend. Explore “Vickie’s Views” for tales that touch your heart, and stay for the inspiration, humor, and virtual camaraderie.
About Vickie Rubin, M.S. Ed.
Vickie brings a fresh perspective by blending her background as a special education professional with her firsthand experience as a parent to an adult with a rare chromosome deletion who needs assistance with all daily life skills. Her insightful essays have been featured in Newsweek, Buffalo News Opinion, and various notable blogs. Additionally, if you’re a podcast enthusiast, you’ve likely heard Vickie discuss topics ranging from the challenges and rewards of raising a child with disabilities to instilling hope, understanding family dynamics, education, and advocacy.
Before writing her book, Vickie led the team at the Early Childhood Direction Center (ECDC) at Oishei Children’s Hospital, a role supported by a New York State grant. She has shared her expertise at local educational venues and has also taught in the Exceptional Education Department at Buffalo State College. To cap it off, she earned her master’s degree from SUNY Buffalo State College, receiving the prestigious President’s Medal for Outstanding Graduate Student. With her blend of experience and passion, Vickie’s journey epitomizes the best of both worlds.
Vickie Rubin, M.S. Ed., and her family were honored with the Children’s Guild Community Recognition Award for their exceptional contributions to the special needs community in Western New York. The Children’s Guild Foundation is committed to enhancing the lives of children with special needs through grants and advocacy in healthcare, research, education, and therapeutic recreation.
In 2006, Vickie received the title of Family-Caregiver-Advocate of the Year at Developmental Disability Awareness Day. This award recognizes a parent, guardian, family member, or advocate who has significantly enhanced the lives of individuals with developmental disabilities.
Get In Touch
Reaching out to readers like you is always rewarding. If you have questions or believe a conversation with me could be beneficial, feel free to send an email. We can collaborate and learn from one another.
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