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“…he is my angel in heaven.”
Nicholas Cupo, Trisomy 13, 1/22/1989 – 2/3/1989, Tom’s River, NJ
I have many Angels in my life, but the one that I am writing about is my first Angel, my Son Nicholas. Nicholas was born on 1/22/1989, he came into the world in the usual way, we weren’t expecting anything other than a “normal” baby, but life had other plans for us. He was my firstborn, and with him all my hopes and dreams came true. As I waited for his first cry, his first breath, I knew something was wrong. They whisked him to the special nursery without me getting to see or hold him. My husband went with him and came back and said something is wrong, they aren’t saying what, but he is being attached to tubes/machines, but he is alive. Those first few hours were agonizing for me not being able to see or hold him. Once we has stabilized in the NICU, I got to see him. I thought my heart would burst from both the pain of seeing him hooked up on what seemed like hundreds of machinesr, but also from joy because he was my baby boy. He had a wonderful team of nurses and Drs in the NICU. His Dr. told us right away what she believed he had, she said they could transport him to a Level 1 NICU 80 miles away, or keep him where he was and he would receive the same loving care from their staff. We opted to stay where he was born. The Dr. showed us books, pictures and shared with us what it meant if he was diagnosed with Trisomy 13. They sent his blood out for testing, and sure enough it was full blown T-13. The Dr, explained to us at that time, most babies diagnosed with this disorder, only live a few minutes when born, or would die before being born. She said he must be very strong to survive not only Birth, but to manage to live past a few minutes/days. We were fortunate to have him for 13 days. I lived years in those 13 days. I held him, talked to him, sang to him and took him through an entire lifetime in those 13 days. I will never forget the joy that he brought into my life, nor the pain and sorrow I felt when he died. He would have been 24 this past January and the joy and pain are still with me every day. I was blessed to have him for that short while and he taught me more about life in those 13 days, than it would have taken me a lifetime to learn. I knew what true unconditional love was for the first time, I felt a Mom’s pride when he would look at me snd turn his head to find me when I spoke, and when he wrapped his fingers around mine, I could melt, I learned patience as I was taught how to hold him, change him, feed him through a tube, listen to make sure that the tube was in his belly, not his lungs, I learned humility, I learned that there are some very cruel people in this world and also a lot of loving and accepting ones. When he died, I thought I would die with him, I wanted to die with him….. I thought my heart would break in half, and that was when I learned strength and what it takes to move ahead and that life is wonderful, amazing and yes very painful as well. He taught me accept things that I can’t change, make the most of every day, live life to the fullest for none of us knows how much time we have on this earth. I know he is in a better place and watching out for me and his Dad and his 3 younger sisters, he is my Angel in Heaven.