The Path to Diagnosis
The weekend between heeding the advice of Rayna’s keen and compassionate pre-school teacher, Janice Golden, and the start of a gym class to help boost Rayna’s motor skills, brought me to New York City. I was joining Rayna’s dad for festivities at the end of a dental convention he attended. This was the first time leaving the girls. We left them in the qualified hands of my cousin, Barbara. Despite my complete faith in her capabilities, to say I was a wreck leaving these adorable little treasures, ages, 3 and 5, is an understatement. I was only going to be away 36 hours, but it felt like a lifetime!
Upon returning, Barbara pulled me aside. She noticed Rayna seemed to go out of her way not to use her right hand and do everything with the left one. We took Barbara out for dinner as part of a thank you. I sat with untwirled spaghetti and untouched scrumptious Italian bread as I couldn’t get my mind off Rayna. My heart began to pound; I knew something was wrong.
Not only did this discovery put the gym class on hold, but it also threw us into a tailspin of doctors’ appointments, medical tests, fear and uncertainty for Rayna’s future. Seven weeks later, we had a diagnosis. My three-year-old bundle of joy had a bleed in her brain.
Back to that fateful weekend seven weeks earlier. Monday morning, I walked Rayna into pre-school and quietly asked Janice to watch her right hand. Then, I just had to figure out how to fast forward three hours, as if I had control over time. Bottom line? When it was time to pick up my daughter, Janice confirmed my fear; Rayna was only using one hand.
The next day brought us to a quickly acquired pediatrician appointment with Dr. Fred Mandell. “Rayna, touch my fingers, touch my nose…look to your left, to your right....”
61 seconds after the exam began, I heard a word that shot my anxiety out of the ballpark: “Neurologist.” The rest of the appointment time was spent on handholding conversation trying to allay our fears. I don’t remember the remainder of the day or what I did, who I talked to, how many times I found a private place to cry. I do remember the evening when we had a surprise visitor. Dr. Mandell came to the house, not to tell us anything new, and not for any reason other than to do more hand holding. How grateful we were.
Next step. The neurologist talked about a mild case of cerebral palsy as a possibility, but nothing conclusive until a cat scan. I was stunned, yet hugged the word, “mild.” Onto the next step.
Over thirty-five years have passed since that cat scan and I can still remember the angst when I dropped off big sister, Tovah at her friend, Jamie’s house. With our age-appropriate version of explanations of what was happening to the little sister Tovah adored, she too was clearly affected. I ached for her. I stooped down and hugged my precious Tovah good-bye, turned away, and the rest of her family headed to the hospital.