Growing up Quickly with a Disability

When you are born with a permanent disability (cerebral palsy) classified as severe, as a vulnerable child, you have no idea what life will bring. Imagine a regiment of constant hospitalizations, initially solely orthopedic in nature, requiring incredible organization and planning by my young mother.

A young girl…

My story began with my premature birth in 1954, conceived in love and brought into the world just an hour after the first labor pain. Incubator technology at the time was primarily about providing large quantities of oxygen for tiny, underdeveloped lungs and keeping babies warm and clean. Babies born very early had such sensitive eyes and eardrums that normal light and sound could cause permanent damage.

My parents were informed of the 50-50 chance of my survival and possible intellectual impairment if I did survive.

The daily care tasks my mother faced must have been overwhelming. Fortunately, my parents had a strong support system with grandmothers, neighbors, and friends who pitched in to help. My journey involved constant hospital visits to Newington Children’s Hospital in Hartford, CT, doctor consultations, evaluations for special leg bracing, and planning a series of orthopedic surgeries paired with my growth and intensive daily physical therapy.

The hospital, initially called the “Home for the Incurables” in 1898, evolved over the years to become the Newington Home and Hospital for Crippled Children. I remember a beloved therapist who became a surrogate caregiver during my many hospital stays. During one surgery, I was in a heavy white plaster cast from my feet up to my chest, with my legs spread apart widely and a steel bar in the middle to 'flip me over' like a pancake. This hospitalization lasted six weeks, during which I attended the Newington Children’s Hospital School. If you would like to read more about the evolution of the Home for Incurables, see this link: Connecticut Children's Medical Center: Once the Home for Incurables.

I was one of the lucky ones who got to go home after surgeries. However, many other patients considered the hospital their home, which fostered my sense of compassion at an early age. I had to endure even more frequent vocal cord surgeries for juvenile papilloma of the larynx, making me a 'frequent flier' patient at Hartford Hospital. (A respiratory papilloma is a wart-like growth or tumor on the surface of the larynx (voice box). Respiratory papillomas are caused by the human papilloma virus (HPV). They're usually benign (non-cancerous). These growths can lead to vocal cord damage and airway problems.) This condition required a permanent metal trachea tube in my throat to breathe, which needed frequent cleaning. In total, I underwent 33 throat surgeries. By puberty, the viral warts stopped growing, and I was able to have the trachea surgically removed, followed by speech therapy to learn normal breathing and talking.

Negotiating the two hospitals, surgeries, and therapies while being able to return home and back to school was an monumental achievement by my mother. She orchestrated it all while raising my two siblings, with my dad being the hardworking breadwinner and visiting me in the hospital in the early evenings. My mom and I spent many hours in the hospital playrooms playing Candyland and Chutes and Ladders, watching TV, and looking forward to visits from my paternal grandmother, ‘Nana,’ who often brought surprises. My maternal grandmother couldn’t visit as often but provided support in other ways. Despite the challenges, a routine was devised so I could get what I needed, and we remained a family.

Making news….

I was the poster child for a cerebral palsy mail in fundraiser.

Not being able to talk and walk was a monumental challenge for me. I know I cried, was lonely, and frustrated. However, my parents instilled in me a can do attitude and, fairly or unfairly, they pointed out other children who were worse off than me. I grew up quickly understanding that, even with all of the challenges, I had a good life and other kids did not.

I definitely did not like the sights, sounds, and smells of the operating room. As a vulnerable child, wearing scratchy blue and white striped seersucker pajamas and flimsy nightgowns, I was always cold entering the anteroom to the operating room. Ether was still used as an anesthetic, which I could not tolerate, so I would ask a nurse to cover my nose to avoid the smell. The operating room lights were bright, like eyeballs staring at me, amid cold steel and the whooshing sounds and chatter of doctors. I missed my mom and wanted her near me, but I knew I couldn’t have that wish. Instead, I would ask the nurse to hold my hand until the anesthesia took effect.

A vivid memory from my childhood hospital experiences involved a young boy sharing my room. He had all kinds of tubes, drains, and medical equipment attached to him. I later learned he had ingested a household cleaner, leading to severe internal burns. This profoundly affected my dad, who insisted my mom use cleaning products only once and then throw them away to prevent such accidents. The little boy did not survive, a harsh reality I faced as a child, teaching me to grow up quickly and develop resilience to become a survivor.

As I grew older, I learned that the outlook for survival to old age with cerebral palsy was uncertain. Many medical professionals had limited knowledge about the long-term effects of aging with this condition, and still do.

Despite these uncertainties, I became an overachiever. I excelled academically and professionally, using my experiences to advocate for others with disabilities, victims of crime, and marginalized communities. My life journey has been about overcoming challenges and making the most of every opportunity.

Yes! Old Lives Matter…..

And here I am today! I’m still surviving and accomplishing things that are contributing to living my best life!