Features That Resemble A Syndrome
The following is the story of the first few days after our son was born. It is the story of our journey from shock and fear to understanding, acceptance and joy.
“He has some features that resemble a syndrome.” These are the words that made my mind go dark, that started the ringing in my ears, that ended my life as I knew it, at least for a little while. It was 4:30 in the morning. About nine hours earlier, I had given birth to my first child after a healthy, normal pregnancy. My husband and I held him and several family members took their first peek at his round face and chubby cheeks. My husband went home to get some rest and I slept for a few hours. A specialist came in before sunrise and I was given the news. I called my husband to tell him our baby was sick, our baby had Down Syndrome, our lives were over.
This moment was shocking and dark and painful. It is a moment during which I realized that one’s heart actually can break and that with heartbreak comes unbearable grief. I did grieve, for the child I had imagined, the healthy child whose heartbeat I had heard at each doctor’s visit, the child I pictured in all the adorable clothes I had washed for him, the child who would grow up and go to college and have a family of his own. This sick child, who was having trouble breathing, who was hooked up to tubes and monitors, who was too sick for me to hold, could not be my child. Yet he was my child and so I already loved him. He stayed in the NICU for one week. In that time, he was treated for a lung infection as well as jaundice. He had a chromosome test and it was confirmed that he had Down Syndrome.
The sadness that came with finding out there was something wrong with my child was like nothing I had ever felt. I cried for him and the way the world would see him. I cried for myself and the way the world would see me. I felt uncomfortable in my life, in my house, in my skin. I could not do normal things, like listen to music , because it only reminded me of the part of my life, the part of me, that seemed to be gone forever. My entire identity disappeared and I saw myself only as a parent of a child with Down Syndrome and I was sure the whole world would see me the same way. I visited the hospital every day and stood by his bed in the NICU. I held his hands and watched him breathe and listened to the beeping of the machines that were monitoring him. I pumped milk so I would be able to nourish him when he was ready. I held him for short periods of time, careful not to tangle the tubes and wires that were attached to his little body. He got healthier and stronger every day.
We took him home and watched him sleep and eat and changed his diapers and bathed him and did everything we imagined we would do in the first few days of having our baby at home. We began to realize that despite his diagnosis, he was the baby we had been waiting for, the baby whose arms and legs we had watched move across my belly, the baby whose ultrasound picture we had studied over and over again, trying to imagine his face. We began to enjoy the things we had been looking forward to all along. Our families surrounded him with love and relished holding him and watching him do the things that newborns do. Slowly we told friends and coworkers about the diagnosis and one by one, they offered their sympathy, understanding and support. We talked to other parents who had similar experiences and began to feel less alone. Light began to seep back into the dark world in which we had been living since that first morning at the hospital.
Two years later, the pain of that morning has faded and in its place is the joy our son has brought to our lives. Rather than lamenting over how long it takes him to reach a goal, we have celebrated each little accomplishment. We are continually amazed by all he is able to do in spite of the fact that every cell in his body carries an extra chromosome. He has a smile that lights up the hearts of everyone who sees it and an equally endearing mischievous look that lets you know he is up to something. He loves to be outside and is happiest when he is in motion. He has an endless amount of energy and enjoys all experiences to the fullest. He has my eyes and my husband’s instinctual love of the sea. He is affectionate and silly and is everything I imagined my son would be. He does have some “features” that make it obvious to the world that there is something different about him, but I think his smile and his laughter and the pure joy he gets from life are much more noticeable. Very few people can look at Joshua and not smile, the fact that he has an extra chromosome pales in comparison to a gift as lovely as that.