When Siddhu and I were going to the hospital 5 weeks 2 days before my due date I was praying “God, don’t make me stay at the hospital for more than a week because I would like to be at home with my daughter as soon as possible.”
On the second day after she was born, nurses said that Samaira is doing fine except she is taking shorter breaths and is not getting enough oxygen. They put oxygen tube next to her nose just so she gets more oxygen in her body. At that time I was praying “God, I hope she gets enough strength in her body soon enough so she doesn’t have to be with the oxygen tube for too long.”
On the third day after Samaira was born and we found out that she has been diagnosed with down syndrome, I wasn’t really praying for anything. But when I found out all the things that could go wrong as a result of this diagnosis (possible heart defect, possible duodenum obstruction, poor feeding pattern, etc.), I was thinking “No matter how long I have to stay in the NICU, I hope she doesn’t have all these other issues.”
Severity of down syndrome cannot be determined at birth. We have no way of knowing the impact this will have on her physical and intellectual ability. Today I hope for the best that can possibly be.
Sometime last week we went back to the hospital to attend our Labor and Birth class reunion. It was for the first time after Samaira’s birth that I saw so many kids of her age group in one room. Everyone was sharing their birth stories and one of the moms started crying while telling her birth story. She was crying because she had a C-section delivery and not a natural/normal delivery. She had a family history of normal deliveries and her C-section broke that pattern. While she had a perfectly normal and healthy baby, not having a normal delivery made her cry. Her point of view is informed by her experiences. Listening to her, I was thinking how blessed she is to have a perfectly healthy baby with no additional diagnosis, no feeding issues, etc. This was also the first time we were in a room with so many other parents talking about Samaira’s birth. I realized how vulnerable I still feel talking about her diagnosis. It is not easy and I am not sure if it will ever be.
Sometime last month we attended down syndrome community sweetheart dance. That was for the first time I saw so many kids, of all age groups, with down syndrome. Siddhu felt really good being there because it was a testimony to how wonderful their lives were, and how wonderful Samaira’s life could be. I, on the other hand, found myself fighting my tears. I don’t know why. It was such a happy place full of a lot of happy faces and I definitely did not want to dampen it with my tears. So I held them back. But I cried afterwards.
I have realized that happiness means different things to different people. I have also realized that happiness could mean different things to the same person depending on the circumstances. It, to some extent, is a self-fulfilling prophecy. We find ways to be happy depending on what surrounds us. It is all about perspective.
Happiness to me means being with Samaira, holding her, playing with her, crying with her, see her smile. Loving her.