"Like every first-time mother, I was tremendously excited during Emir's pregnancy," Eliana Tardío tells Univision. "The experience was totally new, and more than ever I wanted to be the perfect mother and receive the perfect baby in a perfect world."
When it was time to learn the baby's sex, the Bolivian woman dreamed of going home "to create a perfect space for the baby."
"To my surprise, his sex was revealed to me along with the news that there was a high probability Emir would have Down syndrome. The perfect world suddenly broke into pieces, and the color of the walls was no longer important because that diagnosis brought with it a world of medical and developmental challenges that I was not prepared for – that no parent is ever prepared for.”
Tardío's son, Emir, and her daughter, Ayelén, both have Down syndrome. For nine years, Tardío has been sharing her experience on a blog. She also has over 200,000 followers on Facebook. She answers questions from other parents who have children with Down syndrome, and she fights against prejudices and stereotypes by showing how her family lives like any other. Tardío, who lives in Florida, arrived from Bolivia 13 years ago thanks to an invitation from the family of her childrens' father. She decided to emigrate when she learned of Emir's diagnosis. “I came here as a tourist and from the beginning I put in a petition that protected me until I obtained permanent residence. It took me 10 years of struggling, money and hard work to become a U.S. citizen, but it was gift and an honor that I would never change and that is worth every tear shed,” she said.
“Along the way, I did things I never imagined and that no doubt made me stronger and braver. I've been a maid, a waitress and even sold food for awhile. Sometimes as I cleaned someone's bathroom or marble floor, I dreamed of having the opportunity to share my message while holding my children' hands, of changing the world even a little,” she wrote in her blog. “I vacuumed Persian rugs while listening to English lessons on cassettes to improve my accent. I was determined to be ready for that great day when I would stand at a podium and people would listen to my voice, the voice of a Latina mother raising two children with Down Syndrome,” Tardío added.
She has achieved the goal of sharing her experiences and giving a voice to all families who have children with Down syndrome. But she also achieved her main goal, the one that brought her to the United States. “I emigrated not because I was smart, but because I was desperate to change the future of my son. It was the best decision of my life, because life surprised me with a second Down child three years later, my daughter Ayelén,” she added.
And if she had stayed in Bolivia?
Tardío left Bolivia in search of better opportunities for her son. “I believe that in Bolivia, the lives of children, youths and adults with Down syndrome depend on the economic possibilities of their parents, like in all of Latin America,” she said. “The children, no matter their status, are victims of the lack of public education and doctors that put them at a great disadvantage – even worse when they have a disability.”
But there are also advantages. “It's more natural when they are born and raised in smaller communities," she said. "People look less at the disabilities and more at the individuals. It allows many children to grow up integrated in society, without formal services but with the natural life experiences that are the best lessons."
"There are sad cases where people do not develop because of a lack of support,” she added. “But there are other surprising cases where people with Down syndrome who grew up in poor communities but were treated no different from others still managed to develop their capabilities to the maximum – which in the end is what all parents want.”
Two children with Down syndrome
During her second pregnancy Tardío refused all kinds of tests. “I learned with my first child that there was nothing to be afraid of, and that to have a child is always a blessing and a great gift,” she said. “I never considered the possibility of not having another child. When I became pregnant, my promise to her was to wait for her and receive her with great happiness – something that all children deserve regardless of their condition. That's where her name comes from, Ayelén, Hebrew for happiness.”
But even though she was prepared, thanks to her experience with Emir, the reality came as a shock. “The nurse that held Ayelén told me, 'Congratulations. She's beautiful' while good and bad feelings battled in my head and then crashed to the floor, leaving behind only emptiness,” Tardío wrote in a book dedicated to her daughter. The baby's condition was a surprise because the probability of a second Down syndrome child was calculated at a meager 5 percent.
“Processing the news was confusing, because no one expects to have one child with Down syndrome, nevermind two. The confusion and desperation were not due to the condition, but to the shortages of medical and educational services that all of our communities suffer,” Tardío said.
Figures from the Center for Disease Control and Prevention (CDC) show that 13 out of of every 10,000 babies born in the United States have Down syndrome – or one out of 769. “The cases of parents with more than one child with Down Syndrome are rare and generally the result of a chromosomal translocation,” Tardío says. “My children have a chromosomal translocation, but we have not been able to find the direct cause of their condition. For parents of children with Down syndrome, it's tremendously important to receive genetic counseling on the probabilities of having more children with the same condition.”
A mother's age is considered the principal risk factor for Down syndrome babies, especially after the age of 35. But Tardío was unusual. “I was 25 when I had my first child and 28 when my daughter was born,” she said. CDC figures show that in fact 80 percent of babies with Down syndrome are born to women less than 35 years old, according to Tardío.
A day in Tardío's home
The first thing Tardío learned about her daughter was that she was very different from her son. “Unlike Emir, Ayelén was always super strong and healthy, and with a wild character that made me realize that children with Down syndrome are not angels, and that like anywhere else there are very sweet people and people born to rule,” said Tardío, who studied marketing. She now heads the diversity department at the Parenting Education Network, a U.S. Department of Education program. The Disney Co. named her as one of the 100 Top Mommy Bloggers and Café Mom & Mamas Latinas listed her as one of Seven Most Inspiring Mothers.
So how does a working mother, who is divorced and has two children with Down syndrome, organize her life?
“My life is very typical in every way. I am a divorced mother who works full time and is following her dream of obtaining a masters' in legal studies so she can better defend her children,” she said. “I work with Education Department funds to help other families understand their rights and make sure their children receive the education and opportunities they deserve,” she said. “So even though my life is a constant struggle, I am doing what I love and growing alongside my children. I feel immensely blessed to work in the service of others, to inspire with my history and to use the achievements of my children to motivate others just starting on this road to learn that you must never settle for less,” she added.
Emir, Ayelén and social media
Social networks are fundamental in Tardío's life. Her blog will soon turn nine years old “and like everything else in life it has seen change, insecurity and changes in its voice and message until it became what it is today. It's my cyber-child in a way, and it is loaded with honesty, love and hope,” she said. Every day she answers questions from all over the world. Should I tell my son that he has a disability? How long does it take to get over the fears? I can't understand when my child speaks. What do I do?
Her work “began with the desire to open the heart and accept that it's not an easy experience, and that alone we cannot make changes. The intent from the beginning is to engage other parents so that we all motivate ourselves, understand each other and feel supported,” she added. The biggest challenge for the mother or father of a child with Down syndrome is change, said Tardío.
“It is a job that is not done and is never done, and which no one can do for us. We have a tendency to complain about everything we lack, and we don't understand that the real change will only come when we the parents refuse to accept the limits that others want to impose on our children,” she added.
Emir and Ayelén are now 12 and nine years old. Both are enrolled full time in public schools. “I also have grown as a mother, and I have become a tireless fighter including for all people with disabilities at all levels,” Tardío said. “It is a constant challenge that never ends because we continue to run into the limits imposed by prejudice and the lack of information.”
Emir even visited the White House about a year ago for an event held by Latinos in Social Media.
Emir and his sister also work on the blog."Along the way, and inspired by my children, I learned that the sky is the limit," Tardío said. "From them I learned that nothing is impossible and that we can reach unimagined places if we focus on our capabilities instead of complaining and becoming frustrated by our weaknesses."
"Seeing these situations up close throughout my life, I believe that the lack of support from the community and society is the problem -- not the disability,” she added .