My Heart Warrior

Noah underwent his first open heart surgery on May 11, 2018.

“Pretending everything was OK while my heart was breaking inside was the hardest role that I ever had to play”

May 11, 2018 is a day that I will never forget because it was the day that Noah underwent his very first heart surgery. Congenital heart defects are one of the most common conditions associated with having Down Syndrome. It was confirmed shortly after Noah's birth that he had a heart defect that would need to be repaired in the near future. Noah had to see a cardiologist regularly and it was during one of those visits, that we were informed that a surgery date had to be scheduled.

Before we knew it, the surgery date was here. I remember that morning so vividly. We had to be at the hospital by 5 am that morning so I hardly slept the night before. That night, I was up leaving things at home in order and preparing for our hospital stay. My oldest son, Khayri, had spent the night to accompany my husband and I to the hospital. My grandmother was in town and staying with us for a few months. As we were walking out the door that morning, she broke down in tears. She was so upset that we had to drop everything just to calm her down for a few minutes before we could leave. I said to her "he is going to be alright, but you have be strong for me". She said OK and we headed out the door.

When we arrived at the hospital I felt numb. I was breathing through an indescribable pain in my chest. Everything I did from the moment we stepped foot in that hospital felt like I was in a dream. I was physically there but emotionally numb. What I remember most about that day was the moment my husband and I had to say goodbye to Noah in the operating room. I kissed him and said to the medical staff "please take care of my baby". As we walked out and heard the door close we both fell to the ground and began to cry. We were both hurting but this was the first time that my husband showed any emotions. When I realized how upset he was, I stopped crying and began comforting him. We were both dealing with the same pain but up until that moment I thought I was the only one really hurting. It wasn't until that very moment that I realized how much this had affected my husband as well. I finally saw the fear he was holding inside. From the moment I received my Down Syndrome diagnosis, I was the only one crying and showing my love and fears for our child. On May 11, 2018, I realized that I was not alone.