Raising Jess: A Story of Hope by Vickie Rubin

 

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.

  

This Will Make You Stronger

 

This will make you stronger; you just don’t know it yet. Ahh, hindsight, that 20-20 vision was spiraling in the wrong direction. When the doctor told us that our baby daughter was delayed in every milestone and would never walk or talk, the news was so shocking that the idea of getting stronger was not even in our thoughts. If somebody had told me, “This will make you stronger,” I may have clobbered them to show my strength! But that’s when the “You just don’t know it yet” comes into play.

What is this Rash?

Our teeny-tiny first child was born on April 11, 1982. Jessica weighed 4 pounds 11 ounces at birth. A week before delivery, I complained to my doctor about a rash, and for a week, he said to me, “The baby is settling, not to worry.” I truly wanted to believe it was nothing. And then my water broke… We arrived at the local hospital, and I told a few doctors about my rash; each dismissed it until finally, an astute nurse (probably an experienced mother) told me my rash looked like “chicken pox”! My mind went into overdrive, racing with the thoughts of: “What? How can this be?” Hadn’t I already had all the childhood diseases?” A physician had to do a biopsy of my rash to confirm if I had chicken pox. I clearly remember labor pain and a scalpel on my blister happening simultaneously. This would make me stronger; I just didn’t know it yet.

Chicken Pox

A biopsy of the pox verified what any experienced mother would have suspected: I had chicken pox. The hospital quickly responded by discharging me, without any medical transportation, to the local children’s hospital. My husband gathered me in the car and drove the twenty miles by car and 1000 miles measured in the stress route. I was a first-time mom and didn’t know how fast the baby would arrive – was the highway going to be listed on the birth certificate as place of birth? Would my newborn start her life with chicken pox? How dangerous was this for my yet-to-be-born daughter? And where the H@#$ did I get chickenpox? This journey was filled with fear and uncertainty, but little did I know it was making me stronger.

Isolation

Once we arrived at Children’s, the medical staff isolated me from everyone and assured us we would be fine. I felt relief from their confidence and was ready to deliver my first child. I labored for ten hours before our little princess was born. The desire to bond with my newborn was strong, yet I was unable to embrace our baby because of the risk of transmitting my disease. With tears and so much sadness, I let the nurse take my daughter to the Neonatal Intensive Care Unit (NICU) for monitoring. My Mom hormones were screaming to hold my newborn while the physicians reminded me that I was still contagious. The isolation and the longing to hold my baby were making me stronger, even though I didn't realize it at the time.

Chicken Pox Free

I was released from the hospital within 36 hours but was unable to see our baby or bring her home until a pediatrician in the community declared that I no longer had chicken pox.

The Actual Diagnosis

Jess did not have chicken pox that day. We would later find out that she had a rare chromosome deletion and would always need total assistance for all daily life skills. In retrospect, it was evident that Jess had unusual facial features and other anomalies. Still, as first-time parents, we were somewhat clueless, and the doctors did not say anything to us. This, too, would strengthen both of us; we just didn’t know it yet.

2024

It is now 2024, and our beloved Jessica is 42 years old. My husband and I went on to have two more children. We found strength, but not immediately. There were many bumps along the way, from medical emergencies and financial strains to marriage struggles and the stress of caring for a child with significant needs. We discovered our strength by watching our eldest daughter take on each day with a smile, a giggle, and a hug. My husband and I found courage as our confidence and experience expanded. The support of our family, friends, and the medical community was invaluable in our journey. Jessica showed us that although things aren’t what you planned, that’s OK. We learned the value of resilience, the power of love, and the importance of acceptance. Before Jessica, I didn’t know what my future would bring. I didn’t think I would find a career that would help me empower other families of children with special needs. Or that I would write a hopeful book about raising Jess and our family. I didn’t know that April 11 would change the course of our lives and that we would not only survive but thrive.

We are Stronger

Our path differed from many of our friends and neighbors. But our opportunities and experiences changed our lives for the better. We looked at everything through the lens of how we would do this rather than how we couldn’t. Raising Jess made us stronger, and now I know it!

 

 

About the Author

Vickie Rubin, M.S Ed. is a three-time award-winning author of the inspiring memoir Raising Jess: A Story of Hope. The memoir encompasses overcoming marriage struggles, having more children, and the sibling experience. Vickie's debut memoir won the 2022 Readers' Favorite Gold Medal Award for Non-Fiction and was a Finalist in the Best Book Award and Books Excellence Award for inspirational memoir. She is an experienced public speaker and passionate advocate for families of children with disabilities. Vickie's essays are published in Newsweek and featured in the Buffalo News and guest blogs worldwide. She is a frequent Podcast guest sharing information about raising a child with a disability, inspiring hope, family dynamics, education, and advocacy. Her blog, Vickie's Views, gives a heartwarming and humorous view of everyday life, including raising a child with a disability, observing daily life, family, marriage, and RV travel. Before writing her book, Vickie was the director of the Early Childhood Direction Center (ECDC) for Oishei Children’s Hospital, Kaleida Health, a New York State Education Department grant-funded program. Vickie and her husband Mitch celebrated their 44th wedding anniversary in 2023. They have three children, three grandchildren, and two very active dogs. 

You can follow the author at:

Website: https://vickierubin.com/

Vickie’s Views: https://vickierubin.com/blog/

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

Instagram: @vickierubin.author

LinkedIn: https://www.linkedin.com/in/vickie-rubin-aa1a09177/

Twitter/X: @vickierubin