The Story

My blood pressure had been high for several hours. The nurse came in, checked my vitals and read my blood pressure to me. It was high again. I made a comment about how high it was and she said, “Its ok, you’ve been through a lot.”

She was referring to the diagnosis I received a few hours earlier.  We welcomed our son Alvaro into the world on February 16, 2013 at 6:24am. At 37 weeks I was full term and induced because I was losing my amniotic fluid.

I remember pushing him out with tears in my eyes. They handed him to me. As soon as I started talking to him, this little baby boy stopped crying. It was magical.

Four hours after he was born, the magical feelings were crushed. The pediatrician, after having examined him, asked everyone but the parents to leave the room. With a shaky voice and an apologetic tone she began to explain to us that she believed Alvaro had Down Syndrome. In fact, she was 80% sure. She shared with us the markers led to her suspicions: the low muscle tone, the slanted eyes, and the crease across the palm in his hand.

While my heart was filled with dread and I felt as if the wind knocked out of me, somehow deep inside I knew it to be true. You see, the first fleeting thought in my mind when I held my baby boy was, “This looks like a baby with Down Syndrome”  I don’t know where that thought came from. I had never seen a baby with Down syndrome before. I had only seen older children and individuals with DS. I pushed that fleeting thought from my mind and told myself it was because we had different cultures in our families that he looked different to me.

 

So here I found myself in the hospital room having been told my son has DS. My blood pressure was sky high for 24 hours. I was in shock. I felt dread. But above all I felt fear. The fear led to questions such as: What did this mean for my baby? What did this mean for my family? How could something be so wrong with such a perfect little baby?

The next few days I experienced confusion, grief, and pain.  But I also felt a fierce protectiveness over this little boy’s life and body. This was still the same baby who grew inside me. The little boy we’d spent months waiting for. I had to reconcile the boy I went to the hospital to welcome and the little baby boy in my arms with Down syndrome. I reminded myself they were one and the same.

All I could see when I looked at his face was that: Down syndrome. My heart broke that I couldn’t see past the diagnosis. I grieved and felt guilt that I wasn’t excited and that I felt so sad inside.

 

A NICU nurse came and spoke with us the day after Alvaro was born. Her own 4 year old son has DS. Speaking to her was like sunlight shining through the clouds of my heart. My immediate fears were verbalized. Then many of my fears were dispelled. She began to educate me about what a wonderful child Ben was. She shared about her triumphs and even sorrows on her own journey as the parent of a child with Down syndrome. She was a Godsend for me. In the middle of the turmoil in my heart, the seeds of hope, joy, and relief were planted.

I spent the next few weeks educating myself about Down syndrome. I read books recommended by friends and the Down Syndrome Society. I joined a Facebook group for Moms with babies who had DS. I joined the chapter of local Down Syndrome Association. I quickly learned that there were more similarities than differences with DS. Alvaro’s extra chromosome just made him extra special. He was not broken. He would live a full and happy life.  He may take a little longer to walk or talk, but these were skills he would master. He would be able to go to school, be educated and have a job. He may get married. His potential is NOT limited because he has an extra chromosome.

Alvaro is nearly 4 months now and is a joy and delight. He has very minimal health issues. We’re lucky about that. Other than working with a physical therapist to keep him on track with areas that are physically a bit more challenging for him, I have noticed very little to no difference from my typical son at this age. He surprises us with all he is learning and doing and I am proud and honored to be his mother.