Synopsis

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.

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Guest Post

THE FRIEND NETWORK: The Importance of Friends When You Are Facing Life Challenges

Western New York is not my original home, nor is it for my three friends, Sheryl, Ellen, and Barbara. When one leaves their family home, one must find a new family. Barb, Ellen, Sheryl, and I are family by choice, not by blood. We are all New Yawka’s! (Read with a thick NYC accent). I never expected these women to include our daughter, Jessica, in their friend network.

Jessica

My husband Mitch and I married in 1979, and our first child, Jessica, was born in 1982. Mitch and I were young, naïve, and ready to start our family. We did not predict that our life would never be the same once our eldest daughter was born with a rare chromosome deletion (1Q 43-44). When Jessica was eight months old, a pediatric neurologist confirmed that she was delayed in every milestone. Jess received her formal diagnosis much later in life.

Jess cannot walk or speak with words; she needs assistance with all daily life skills. Our daughter is musical, enthusiastic, charming, and loving. Without a spoken word, she brings you into her friendship circle. Smiles, facial expressions, hugs, and screams of glee let you know that Jessica is happy to see you!

Jessica moved into a group home when she was 25; the home is two miles from our house. (For more information on the hard decision of moving to a group home, please visit my website)

Barbara

Barbara and I met by chance when Jessica was six months old before we knew about Jessica’s delays. Here is our meet-up story. I was shopping with my mother-in-law (MIL) and stopped to speak to a woman who also had a new baby. When I left the conversation to return to my mother-in-law, she asked me if I had the woman’s number. I was confused – was I picking up women in stores?

My MIL insisted that I go back and get Barb’s contact information. Bashfully, I returned to Barbara and asked for her phone number. It was not a great pick-up line, but it worked!

Barbara instantly became my best friend, and we met almost daily with our growing families. I always thought a higher power was working above when I met Barb. I only had a few friendships as a newcomer to the region. Barb’s professional background was working with families and people with challenges. How fortunate that we would meet before I knew Jessica had a disability.

Barb guided me at my most vulnerable times- by loving our family. Saying the right words of encouragement, and always sitting in our corner.

Barb moved out of town when Jessica was five years old. Yet all these years later, when we Facetime, Jessica immediately recognizes Barb with screams of joy. She never forgot the love that Barbara showed, nor did my husband and I, even though Barb left our region 37 years ago!

Ellen and Sheryl

Ellen and Sheryl met Jess when she was five. There was an immediate bond with Jess, and that warmed this mother’s heart. Knowing that other people see through the wheelchair and disability to the beautiful person who is our daughter is a priceless gift.

When Sheryl visits Jessica at home, she enters with her New Yawk accent and greets Jess with a Barbara Streisand flair, “Hello, Gorgeous!” Jessica, of course, responds with total adoration and joy. Their interactions are a beautiful testament to the joy and warmth that Jessica’s friends bring to her life. Jessica’s five housemates often look for Sheryl when I visit. “Is Sheryl with you?” Maybe I need to improve my Barbara Streisand repertoire.

Ellen worked with families of individuals with disabilities. She became one of our steadfast advocates. She attended all meetings to discuss Jessica’s progress and future services.

This type of devotion from Jessica’s friend network is not just unique, it’s rare. The intensity of their feelings for Jess is something I never expected, and it’s a testament to the depth of their commitment.

Thank You?

I always express my gratitude when Jess’s friends visit. Their response, however, always humbles me. They’re not doing this for me; they’re doing it because they’re friends with Jess and her housemates.

When your child has significant needs, it is sometimes hard to view them independently. I often think of Jessica as an extension of myself. But I am wrong. Even though Jessica has so many limitations, she also possesses numerous gifts. She lets people know they are cherished and appreciated. We could all use that gift; the world would be less hostile.

So, I need to let go of the notion that Jessica is a child and see her as a charming adult, living as independently as possible.

Adversity Opens Doors

I am unsure how it happened that Jess and I were blessed with special friendships. Adversity in one’s life also opens doors to seeing the capacity of others to care. I know Jessica’s superpower is creating friend networks. Her reaction to people she loves is off the excitement meter charts. Without speaking a word, Jess will tell you very clearly that she is happy to see you.

As Jessica’s mother, knowing that others adore our daughter and see the love Jess gives back is monumental.

Our Friend Network

Mitch and I share a group of cherished friends; each respects and accepts Jessica. However, there is a unique Friend Network that embraces Jessica independently of us; as I said before, it’s not about me or us. Sheryl, Ellen, and Barbara embrace Jessica as their chosen family member and friend, and we are forever blessed and grateful for their bond.

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 44rd wedding anniversary in 2023. They have three children, three grandchildren, and two very active dogs.

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