We had pizza on Long Ridge road in North Stamford, Connecticut after our daughter was conceived on January 2nd 1994. We lived in New York City and I was 37 and this was our first child. I was more afraid of losing the pregnancy than of having a child with Down syndrome so I declined the amniocentesis because I knew that this might be our only baby and there was a risk of miscarriage with this test. Nine months later to the day our daughter was born and she was massively brain damaged during the birth. We don’t know what happened but right before she was almost born the doctor said: We have to get the baby out. She’s not happy where she is right now. He used forceps to pull her out and the emergency doctors who had been called from the NICU intubated her as I lay in a panicked stupor too terrified to speak as they tried to find her heartbeat and quickly brought her to the NICU.
Seizures began immediately. CT scans and X-rays were done. Nothing was found. No information was given to us. She was breathing on her own and she slept for 5 days because of the drugs for her seizures. At 12 days we brought her to my parents who lived near the hospital. The seizures had stopped and we weaned her off the Phenobarbital. We thought we had escaped this life of sick children and terror.
During the next 9 months things didn’t work out. New seizures came back and she wasn’t developing any physical control of her body. She couldn’t grasp with her hands or hold up her head or roll. An MRI of her brain revealed multiple strokes and damage to the Basal Ganglia. I was still pretending that she would ‘catch up’. When I could get out of the apartment I’d go to a Barnes & Noble bookstore and find the section with information on brains and seizures and babies. The news was devastating. We had priests lay hands on her, she was injected with steroids for the seizures for 28 days by my amazing husband and when the seizures stopped and she started smiling again life moved forward very slowly.
I tend to get hysterical which is why I knew nothing could happen to my daughter. I wasn’t strong enough. I wasn’t one of those ‘good people’. One day while watching her happily lying flat on her back I moaned to my husband: Will she always be lying DOWN? He calmly replied in his soft Polish accent: She may be lying down. But she may be very happy.
This is what happened.
Our daughter lived an amazing life. She was joyful. She woke up every day smiling. She loved music and movies and rollercoasters. She loved handsome men. She adored her younger sister and her aunts and uncles and grandparents and the small family of caregivers that helped us take care of her when she got home from school in the afternoon.
Lueza gave us everything. We are grateful for her life. 1994-2011
Thank you Andrew Solomon for telling some of the stories of our ‘tribe’.