On the morning of June 27, 2007, they prepared my sister to give birth. Baby’s dad, my mom, and I waited patiently. My sister was very calm. I guess the medication was helping, but I could still feel the energy of all of us in the room. We did not know if the baby would live past this day.
During the first few months of my sister’s pregnancy, she was informed that the baby had Trisomy 18, also known as Edwards Syndrome. For those not familiar with what Trisomy 18 is, it’s a severe genetic condition that affects how your baby forms and grows. Babies that are diagnosed with this have a very low birth weight, and can also have multiple birth defects. Based on some research studies I have read, it is said that an estimated 1 out of every 6,000 live births are diagnosed with Trisomy 18 (Edwards Syndrome). It is also said that this condition is more common in 1 out of 2500 pregnancies, that in most cases, at least 95% of the time, the fetus does not survive full term. (If you wish to learn more about Trisomy 18 and read more stories like Jalyn’s, visit the Trisomy 18 Foundation website.)
Due to the diagnosis and also finding a heart defect in Jalyn, doctors advised my sister to have an abortion. This is a tough thing to hear for any parent, and I can’t even begin to imagine what that felt like. Despite the diagnosis and all odds of making it full term, my sister decided to keep the baby. It was not an easy journey for all of us, and it was most definitely not easy for my sister either. All our family could do was offer support and try to be positive. I told her maybe there was a purpose, a reason, maybe there would be a miracle, and she would live a long time. We wanted to keep the hope alive.
That sunny afternoon, our princess Jalyn Molano was born. She was not breathing, she was pale blue. The nurse took her to clean her, and I followed. My mom had tears running down her face. I tried to contain my tears and be strong for my sister. Honestly, my heart just sank; my eyes got watery watching how the nurse shook her slowly. The nurse cleaned her nose and tried to help her breathe. After a few seconds, little Jalyn opened her little dark brown eyes wide open. Jalyn was now breathing all on her own. The nurse wrapped her up and gave the baby to my sister. We all smiled. So tiny, fragile, and beautiful, I was excited, sad, and hopeful all at the same time. I was so happy that we got the opportunity to meet Jalyn, that she could meet us.
That same day at the hospital so much happened. The doctors said she might not make it past that day. So Jalyn got baptized by the hospital priest, my mother became her godmother, and the priest became her godfather. Frustration began when doctors or nurses wouldn’t feed Jalyn. My sister tried feeding her; however, Jalyn could not suck. They did not have hopes of her making it for that long. It was frustrating because I knew Jalyn was probably hungry. After complaining to doctors and nurses for hours, at almost ten o’clock, a nurse from the Neonatal Intensive Care Unit (NICU) came. She apologized for what had happened and took Jalyn. The baby’s dad and I went with the nurse to the NICU. They fed Jalyn through a small soft tube that was inserted into her nose and down into her stomach.
Days later, Jalyn remained in the hospital. She did have daily visits from my sister and family members. We wanted her to feel the love every single moment. My sister became her nurse, she had to learn how to insert the feeding tube. She had to learn to apply oxygen in case she had a seizure. Watching my sister do all this was so admirable. When Jalyn came home, we were all so happy. There were so many emotions, and we grew to love her so much. She was in the hospital many times, but she also had a home aide who came a few times a week to the house to make sure my sister had everything she needed for Jalyn. My sister would change her into different dresses and take pictures. We took all the pictures we could. When we talked to Jalyn, she looked at us and smiled. Jalyn loved to hear her grandpa call and whistle. When he came home from work, he would call out her name; she moved around in her crib, trying to find out where the voice was coming from. So smart.
During the summer months, we took Jalyn to the park. We spoiled her as much as we could. She heard music. I remember my sister doing a mohawk on her hair once. It was so hilarious that even Jalyn smiled. She always had a smile, even after her seizures, which were always so scary to us. Despite her struggles to breathe, sometimes it was so bad that she would turn blue. All we could think was, this can’t be it! Jalyn would come out of the seizure with the biggest smile. Her big brother loved to play and be close to his baby sister. He called her “my baby.” At just one-year-old, he knew his sister wasn’t well.
On October 20th, 2007, we had to rush her to the hospital because she had stopped breathing for a minute or two. She got blue. We spent her first Halloween in the hospital. She was a ladybug, so cute in her costume, although she couldn’t eat them, her pumpkin was full of candy. On November 2nd, she came back home after almost two weeks in the hospital, and my dad had just arrived from the Dominican Republic from my grandmother’s wake and funeral. We were glad they were both home.
November 3, 2007, a day after getting back from the hospital, Also the day after my dad returned from the Dominican Republic. It was a Saturday morning when I got a call that she had passed away. Tears ran down my face as my dad gave me the news over the phone. All he said was “My mother, now my princess” and “She was waiting for me to get back.” When Dad said that, my heart sank even more. I rushed to the house; everyone was there except my mother, who was in Pennsylvania. My sister was carrying her; she looked so pale, her lips were purple, and she was not smiling anymore. We all took turns carrying her, kissing her, hugging her, and saying goodbyes. We waited for her home care nurse to arrive to declare her dead. The hardest part of all was trying to explain to my one-year-old brother that Jalyn was gone.
After the funeral, people took her away. I felt so empty, and I couldn’t imagine what my sister was feeling. As I carried her casket along with her father’s sister into the church, all I could think of was her smile, and I realized she is smiling and always will be in our hearts. We laid her to rest at Maple Grove Park Cemetery in New Jersey.
Jalyn lived for four months, doctors only gave her a day to live. Will forever remember her courage and her bravery. Above all that, her smile. That smile of hope and that said I’m ok, don’t cry, don’t be sad, and please don’t worry. Her life was cut short, but her purpose was to pull a family closer more than ever. She came to show her family and the world that life, despite the pain, sadness, and struggles is worth it. Showed us to be hopeful, brave, and have courage no matter what obstacles life brought us.
I wanted to share her story. I wanted people to know who she was and what a difference she made in the lives she touched every day for those four months of life. She taught us a life lesson, showing us bravery and courage. It is never easy to lose someone. It’s not easy to lose a baby, a child, who had just begun to live. Sometimes they are here briefly to show us a life lesson. Jaylin showed us anything is possible even when we feel all is lost. Jalyn helped me believe everything happens for a reason. She helped me see the bigger picture.
Jalyn I want you to know we all love you. We will always miss you and you will never be forgotten, always remembered as out sweet ladybug!
R.I.P. Jalyn Molano June 27, 2007-November 3, 2007