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
