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Different but Essentially the Same

April 1, 2018

I was in my tenth week of pregnancy when a regular genetic test came back with an unexpected result: our little one was growing with a high probability of having Trisomy 21, or Down syndrome, a genetic condition produced by an extra pair of chromosomes that cause various disorders. 

 
I was in shock. My husband was traveling and I could not talk with him as he was in a different time zone. Fortunately, my mom was visiting and I just hugged her until my tears dried up. I was so afraid, so confused--I did not understand what had gone wrong. When I could breathe again, I decided to call my spiritual master to tell him the news and we had one of the sincerest conversations that we’d ever had. The life that was inside me was the life that my husband and I were looking for and the love that we could feel for her wouldn’t change because of a pair of chromosomes.
 
Maya was our third pregnancy; the two previous ones did not make it. Maya was not a mistake, she was not wrong, we were not wrong, nothing was wrong, and that was the first lesson Maya had in store for us. People are simply different, all of us come with our own pattern of colors and Maya came to this world with hers, to shine in her own way.
 
The day when we finally got to know her, we knew that she was part of our team and we fell in love with her immediately. I think there are no words to describe the feeling of being a mother, but I feel it must be the closest to divine love and I am sure that my love for Maya is no different to any other mother’s love because of her condition. 
 
Maya is now thirteen months old and I can share that it has not always been easy, but I can also say that I don’t know parents who would say they have an easy life; raising kids is not exactly ‘practical’. Besides all regular baby necessities, Maya has some extra activities that we have to organize, such as extra medical check-ups and some therapies that help her with her low muscular tone, but don’t get me wrong, Maya is not sick, she is not taking any medicine because of her condition and she won’t lose her Down syndrome condition at a certain age. Maya is just a kid who advances at her own pace.
 
Maya is the most persistent person that I have ever known, and I love to be witness of that day by day. Due to her muscular tone, she has gotten to her development milestones with a lot of effort but I have seen that she never felt defeated, rather she constantly worked harder. 
 
I think all of us have different challenges in life. Some people want to study for a professional career but instead they first need to work a lot to pay for it; others would like to have a family but they cannot; and some people would love to travel but they have no time for it. Life is becoming easier if we learn how to handle our challenges and tolerate that everyone comes to this world with their challenges specifically to learn how to live with them. This is something both my husband and I learned from our encounter with our daughter.
 
Giovana Santillan
Maya’s mother and social scientist living in Thailand