Moments after I delivered my first born, Sam, and after the nurses measured him, weighed him, cleaned him, and swaddled him, my husband, Dave, brought him to me. I was elated. While Dave was holding him at my bedside, I looked up at Sam, gazed into his calm and curious eyes and told my husband, “He is perfect. He is just perfect.”
Now that I am looking back, I realize that, although there were many other people in the room at the time, including our doctor, nurses, and other medical staff, they were silent and studying us, as we studied our baby. I felt eyes on me as I was taking in the joyousness of the moment. When I turned to look on the other side of my bed, I found those eyes. There was a doctor waiting to speak with us. I presumed he was our future pediatrician, so I smiled and nodded as he explained to me that Sam has Down syndrome. In what seemed to be the next moment, Sam was whisked away to the NICU, so that they could determine if he had a heart condition. When they took him away, I felt completely empty. Although the neonatologist tried to explain Down syndrome to me, I wasn’t really listening. All I heard was that my baby was not perfect and I was ashamed for having proclaimed so matter-of-factly that he was.
I couldn’t sleep that night. I had been separated from the baby that I carried with me for nine months and, since my legs were numb from the epidural, I couldn’t get to him on my own if I wanted to. They told me to rest. I tried to envision what Sam’s life would be like. Will I be able to take care of him? Will he be made fun of by his classmates? Could he ever have a job or drive a car? Will I have to quit my job? Will he always live with us? I didn’t know the answers to these questions because I knew absolutely nothing about Down syndrome.
Sam is perfect. He is just perfect.
So, as any good lawyer does, I started reading and began to educate myself. As I was learning how to be a mother for the first time, I was also learning how to mother a child with “special needs.” By the time Sam was released from the NICU, only 6 days after he was born, I had already read every pamphlet available at the hospital, ordered books, spent hours on the internet, discovered the world of early intervention, and of course, contacted NADS to become a member. This sounds like a lot of work, but it was done between many, many trips to the NICU and while I sat next to his isolette and watched him sleep.
However, Sam had a different agenda. He didn’t want me to get to know him as a baby with Down syndrome, but simply as a baby who needed his mom to take care of him as he adjusted to the world. Once I brought him home, his diagnosis became an afterthought, something I only reflect on at night after he goes to sleep or when I am explaining it to someone. When I am with him, he is just Sam…my sweet son, Sam.
After 3 months of maternity leave, I returned to work full-time and our family established a daily rhythm. During this rhythm, we’ve had countless wonderful moments with Sam as we’ve watched him grow and learn. His smile greets me every morning when he beckons me into his room with baby babble. His smile beams with pride when he drops his blocks into the shape sorter toy. His smile rests on Dave as he plays piano for him or sings songs written just for him. His smile melts my heart as he gently brushes his fingers through my hair. Every day, Sam’s smile laughs when I tickle him on our bed as I change out of my work clothes. And every night, before I put him to bed, Sam gives me a kiss. That’s right. Our 9 month old baby knows how to give kisses and practically demands them.
And now I know. Sam is perfect. He is just perfect.