Down syndrome, before Ariana, was just a section in my biology textbook that I had to memorize for a week or so to pass my final in order to finish a ge requirement for school. It was just a definition to me: the replication of the 21st chromosome, a genetic disorder. It wasn’t something that I thought about everyday or cared about. But now I see how ignorant I was and the error in my thought process. It’s so much more than a simple definition in a college textbook or a question in a bio final, it’s a way of life. Yes, it might come along with certain stereotypes, a perceived set of limitations, stares and glares and negative comments but all that can be changed. With the amazing progress of Down syndrome awareness I believe that it will be.
When Ariana was diagnosed with Down syndrome I was scared because I had no idea what the future held for her and what we were to expect. I felt very inept. Yes, I knew the scientific definition of what DS was but I didn’t REALLY KNOW what it meant to have DS. I felt uneasy because I had stepped into this world that I knew nothing about.
The only thing that I could do was just go online, and fill my brain with as much information about DS that I could. It was the only way for me to really feel like I was helping and doing something. I found blogs, articles, and lots of great things that really gave me hope that everything was going to be just fine, a little different but that’s ok, being different is ok.
When Mike, and Sarai initially told us, my first thoughts weren’t about Ari they were about them. I was just thinking of how they must have been feeling, and what they were going through. I couldn’t even begin to imagine how they were feeling. I knew if I was sad their sadness must have been deeper than mine. I knew that they loved her regardless of an extra chromosome, and nothing would change the way they felt about her. Likewise, nothing ever changed for me because all I have ever had for Ariana was love and that’s what I would continue to have for her. I guess if anything, if it’s even possible, my love grew because now I felt very protective of her.
I remember when I first held her in the hospital. I was so excited, after four hours on the road I was finally going to get to meet her. I was also scared and sad. I was scared because she was so small and I’d never really held a baby that small. She seemed so fragile and I didn’t want to hurt her. I felt sad because she was attached to the machines and I never expected to see her like that. She looked so helpless and all I wanted to do was help her and make everything better. I was also sad because I knew I was going to have to leave her soon and all I wanted do to was stay with her. I wanted to put her in my bag and sneak her out! Lol, no just kidding, that would have been bad.
When Mike and Sarai took me to Olive Garden I had never imagined that they had taken me out to ask me to be Ari’s godmother. I just thought Sarai had a craving. When they told me they wanted to ask me something I nearly choked on my pasta. There is no greater fear that runs through you that quickly than someone asking you if they can ask you something. No? Maybe it’s just me then lol. Regardless I quickly ran through a list of possible questions but I just drew a blank. When they finally presented the question to me all I could think of was, is this real life? I was very surprised, but I couldn’t say yes fast enough. To say that I was elated is an understatement, I was internally bouncing off the walls with happiness. I couldn’t wait to tell everyone.
I was already imagining what it would be like to be Ari’s godmother and the type of relationship that we were going to have. I was going to spoil her and let her do all the things her parents didn’t. I was going to be the cool, badass godmother that would teach her how to have good taste in movies, music, books and baseball teams. It was going to be rad, I was going to teach HER. But turns out Ariana would be the one doing all the teaching.
Ariana has given me lots of hope and inspiration to be a better me. She has opened my heart and my world. She’s given me something to fight for, to speak up about and raise awareness. In her short life so far she’s touched the hearts of many people and has broken this little, safe bubble that we all live in and exposed us to a new wonderful community. In my twenty years of life, I cannot say that I’ve done half as much as Ariana has. What amazes me is that this is only the beginning of her story. She has so much more to accomplish and many more lives to touch and change. As her godmother, supporter, friend, and advocate I can only promise her to try and keep up with her.
– Rocio Montes aka nina Nara