This will make you stronger; you just don’t know it yet.  Ahh, hindsight, that 20-20 vision 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.

The story below is a companion piece to my book, Raising Jess: A Story of Hope, and includes a 2026 update.

Jessica’s Birth

Our teeny-tiny first child was born on April 11, 1982.  Jessica weighed 4 pounds 11 ounces at birth.  On that snowy day in April, we arrived at the local hospital, and I told a few doctors about a persistent rash; each dismissed it until, finally, an astute nurse (probably an experienced mother) told me my rash looked like chickenpox!

“What?” Didn’t I already have all the childhood diseases?”  A physician had to do a biopsy of my rash to confirm whether I had chickenpox. 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

Diagnosis – Varicella – Chickenpox. Little did I know that the fancy word for chickenpox would be the beginning of my new medical vocabulary. The local hospital quickly responded by discharging me without any medical transportation to the local children’s hospital. My husband drove 20 miles by car, and 1000 miles, measured in 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 as a 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 Hospital (now known as Golisano Children’s Hospital of Buffalo), the medical staff isolated me from everyone and assured us we would be fine. 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 Jess because of the risk of transmitting my disease. With tears, I watched 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.

Although I didn’t know it then, the isolation and my longing to hold Jess were quietly fueling my inner strength. It would eventually help me face other types of isolation a family experiences when raising a child with significant needs.

Since I was unable to physically bond with Jess immediately, I bonded through writing.

Chicken Pox Free

I was released from the hospital within 36 hours (in 1982, they kept you longer than today’s drive-thru deliveries!) but was unable to see our baby or bring her home until a pediatrician in the community declared that I was Varicella free.

The Actual Diagnosis

Jess did not contract chickenpox that day; she developed the disease 13 years later and gave it to her two siblings 🙄.  Many years passed before we learned the technical term for Jessica’s rare chromosome deletion — 1q43-44 microdeletion syndrome— and that she would always need total assistance for all daily life skills. 

In retrospect, it was evident that Jess had unusual facial features and other anomalies suggestive of a chromosomal deletion. Still, as first-time parents, we were somewhat clueless of the road ahead, and the doctors did not say anything to us. I guess they were clueless, too. This, too, would make both of us stronger; We just didn’t know it yet.

2026

It is now 2026, and our beloved Jessica is 44 years old. My husband and I went on to have two more children. We found strength, though not immediately, and there were many bumps along the way, from medical emergencies to marriage struggles and the stress of caring for a child with significant needs. There were also fleeting feelings of isolation as other children Jessica’s age reached milestones she would never achieve or simply went about everyday activities.

At times, life was exhausting, different, isolating, and stressful. Yet the joys outweighed the hard times so much so that when I look back, I see the good times, the milestones, and the extraordinary moments so unique to our experience.

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. 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.

Because of Jess, 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. The support of our family, friends, and the medical community was invaluable in our journey.  I didn’t know that April 11 would change the course of our lives and that we would not only survive but thrive. Raising Jess made us stronger, and now I know it!

What makes you stronger but you didn’t know it at the time?

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For More Information

This blog is a companion piece to my book Raising Jess A Story of Hope. An inspiring, powerful story of love, courage, and hope, chronicling our family's journey through the unexpected challenges of raising a daughter with a rare chromosome deletion. For more information about special education, resources, support please visit Vickie's Views.

PURCHASE RAISING JESS A STORY OF HOPE AT:

FOLLOW ME @

Instagram: @vickierubin.author

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