Dreams and Realities

YVONNE

Our first year with Yvonne was one of adjusting to the reality that Eddie and I now had a daughter after five years of having only each other. She was a beautiful, healthy, happy baby. Yvonne gained weight and made progress in her motor and language skills well within the parameters that Dr. Spock indicated. In our eyes and in the eyes of our family, she was perfect. She had light brown curly hair, big beautiful eyes, a tiny nose, and a smile that melted my heart.

As the stay-at-home Mom that I was, Yvonne became the center of my world. I made sure she was well fed, dry and most of all, happy. I talked to her, sang to her and danced around the house carrying her. When she took her afternoon nap, I took a nap with her too. Eddie and I took her everywhere, that is, to church, the mall, the supermarket, restaurants, parks, to visit family and more. We also took her to the pediatrician for her regular check ups. Her development seemed to be progressing without problems.

There are always memorable moments in the life of a child that only parents treasure. One such event took place the first time Yvonne slept the whole night. She was about three months old. After putting her back in the bassinet at about 11:30 PM, her next feeding would be at 2:30 or 3:00 AM. I woke up at 3:00 AM and my first thought was how strange that Yvonne was not crying for her bottle. Her bassinet was next to my bedside so I sat up, looked at her, and waited; one minute, two minutes, three minutes; she did not move. I placed my hand in front of her tiny nose and felt her warm breath. I didn’t know what to do.

Should I let her sleep or wake her up? I stayed up for almost an hour watching her sleep peacefully. Finally I went back to sleep only to wake up at 5:30 AM to the sound of my baby girl’s hungry and impatient crying. From that moment on Yvonne slept the whole night and so did her thankful mother.

Another moment I have never forgotten is when Yvonne was about nine months old and she started rejecting milk. Friends and family made several suggestions as to how to disguise milk so my daughter could have her daily portion. Two ideas that worked well were to feed her oatmeal in the mornings made with milk, and in the afternoons ice milk as a treat. It was surprising how much Yvonne enjoyed oatmeal for breakfast and she definitely loved the ice milk because it was sweet and cold and tasted like ice cream. In addition to the two healthy foods, my little baby also relished a beverage that was not recommended by Dr. Spock but that she had observed in me, warm milk with coffee. Thus began a ritual of mother and daughter having their morning coffee together. While I had my full cup of caffè latte, I prepared a demitasse for Yvonne with lots of milk and about three drops of coffee. She watched me intently while I prepared our coffee. I can still picture her in the high chair, wiggling with content and eyes sparkling as I held the demitasse to her lips. When she was done having her coffee we both celebrated the moment with hand-clapping and cheers. These solutions to Yvonne’s milk rejection were meaningful to me because oatmeal and coffee had always been my favorites and here was this little person that I had given birth to apparently following in my footsteps. About two months before her first birthday, Yvonne started to take steps in an attempt to walk. Usually she ended up in a heap on the floor which was nothing unusual in a child so young. However, when she was thirteen, fourteen, fifteen months old and did not yet walk on her own, I began to be concerned. When I consulted mother she said, “You didn’t start walking till you were seventeen months old.” That comforted me a little but just in case, I also informed her pediatrician. He reassured me that babies had their own timing, not to worry. I tried not to worry, but when my daughter was seventeen months old, she still could not walk and we noticed that she was having trouble keeping her head up for an hour or two. This time the doctor referred Yvonne to a neurological pediatrician.

The day we went to the specialist’s office, Eddie and I were nervous. Our intuition told us something was terribly wrong, but we had no idea what it could be or how serious it might be. Dr. Mirabal was a soft-spoken, gentle man who asked us many questions about the medical history of our respective families. He examined Yvonne thoroughly and recommended some blood tests, an electrocardiogram, a bone study, and an electromyogram, a test which evaluates the electrical activity produced by skeletal muscles. We did everything the doctor asked. Now we were scared. Six weeks later we were back in his office with all the test results. He informed us that what he had suspected earlier had been confirmed; our daughter had a muscle disease. We didn’t know anything about muscle diseases and the doctor only gave us a watered down explanation of its possible causes and outcomes. We accepted what he said and asked just one question, did this illness threaten her life. He said in most cases it did not and ended the consultation giving us hope. It was late 1972 and the Internet was not yet available to the general public for personal research and more detailed information therefore we only knew what the doctor informed. We went home in a stupor that evening, and after putting our baby to sleep, Eddie and I sat on the edge of our bed holding hands, crying and praying to God that our child be healed through His power and the knowledge of the doctors. We were sitting on the edge of a bottomless cliff.

As parents whose responsibility it is to protect their child from harm and provide a safe haven, we felt inadequate and impotent. Yvonne getting progressively worse. She was no longer able to stand up by herself and the episodes of inability to sustain her head upright had increased. Dr. Mirabal prescribed Prednisone, a synthetic corticosteroid drug, hoping that it would help our daughter gain some strength in her muscles. After a month of treatment, it was obvious she was not getting better. The doctor suspended the medication and asked if it was possible for us to take Yvonne to New York City for special tests. We said yes immediately; my parents had moved back to Brooklyn a little over a year before and I knew they would help. The doctor recommended a well-known pediatric neurologist at Babies Hospital of the Columbia Presbyterian Medical Center in New York City. However, in spite of the assured family support we had in New York, we could not leave right away. We had to wait till I gave birth. I was eight months pregnant with my second child. This turn of events regarding Yvonne’s health was a total surprise. No one on either side of our families had ever known of any child afflicted with a muscle disease; there was no consanguineous connection between Eddie and me. It was a mystery. As we awaited the birth of our second child, we prepared for the trip with high hopes.

Maritza was born on April 9, 1973 at the same hospital as her sister. One month later we left for New York City with both daughters. Yvonne was two years old. My parents cared for our newborn child while we tended to Yvonne. Dr. Mirabal had arranged an appointment with Dr. Arnold Gold at the hospital. After examining her and asking us many of the same questions that the doctors in Puerto Rico had asked, he recommended that Yvonne be hospitalized so the specialists could perform a series of tests. Our journey down uncharted paths continued.