8 Lessons My Baby With Down Syndrome Has Taught Me

On World Down Syndrome Day, a mom reflects on public life with baby Valentina.

March 21, 2013, 10:40 AM

March 21, 2012— -- What if I told you that I have a box containing the secrets to happiness? Its exterior, its wrapping, may look a bit different than other boxes you are used to seeing, but in the end it's a box like any other. What if I told you that its contents, will change your life forever in the most beautiful ways?

Would you get close to the box? Would you open it?

Since many people are unfamiliar with this box they might hesitate to look inside, missing out on the best experiences of their lives without ever knowing it.

That was my case with Down syndrome (DS) before September 16, 2011. That Friday afternoon, my daughter Valentina Guerrero was born, and that's when I found out she came with a little something extra, an additional chromosome on the 21st pair. Up until that day, I had never even met anyone with trisomy 21, or Down syndrome. I was very ignorant about the condition, which led me to a state of shock for a few weeks after her birth. Until then, all I had heard or read focused on the limitations of people with Down syndrome (which at this point are less and less)--I only knew the box looked different on the outside.

Little by little, with some research and the support of good friends, family and organizations, I started understanding that people with DS are capable of living a pretty independent life and achieving great things. The similarities of a person with DS and a typical person are far greater than the differences.

What nobody told me is that people with trisomy 21 are incredibly evolved on a spiritual level. With every day actions I see how they take on challenges with a different attitude than most people, and their view of life is very positive. If we all had an ounce of their bright disposition, the world would be a much better place.

When my daughter was born my mother started pointing out things that Valentina does that most typical individuals don't do, especially at such a young age, and I realized why she is so special, not because of her condition, but because she can teach me much more than I will ever teach her. I consider Valentina my guru, who by example has taught me the keys to a full life:

1. Persevere no matter what: Since she was 3 months old, Valentina has been working hard every weekday morning to achieve her goals which went from lifting up her neck, to sitting, crawling and now walking. She gives her best effort and always with a smile.

2. Be patient: Everything will take her a little longer, but we're in no rush--we now know that everything has its timing. For example she is talking a little longer than the typical baby to walk, but we know she'll do it eventually, so we don't stress about it; actually most parents tell us that every milestone happens too fast for them, and Valentina gives us the chance to enjoy every part of the childhood process a little longer.

She is now saying some words like "Mama", "Papa", "Hola", "Sí" and "Bye" and until she masters the rest she is communicating through Sign Language, she knows over 10 words in this format. I can technically say she is trilingual because she communicates in Spanish, English and Sign Language!

3. Stay positive: Our focus, at any point, is on the glass half full.

4. Live in the moment: We've learned not to worry about the future because you never know what destiny may bring.

5. Celebrate every achievement: Since it takes Valentina extra effort to attain certain goals, when she does achieve them we throw a party, therefore we are in a constant celebration! When she was able to sit by herself we started making a happy dance, and she started moving her arms from one side to the other, so immediately we discovered she also now dances! You can imagine the double celebration we had that evening!

6. Be thankful for what you have: Each of us has plenty, if we know how to see it.

7. Laugh: Her smile is like getting a shot of happiness. I remember when Valentina was born I told a co-worker "when she smiles it's like I literally have injected happiness into my system" and she looked at me like saying "that sounds nice, but I don't know if I've even been there." I then understood that you have to be close to a person with trisomy 21 to experience the level of happiness that they work with. Of course, they're not always happy -- you should see Valentina when she's not in a good mood!-- however since their approach to life is mostly positive, that extra dosis of smiles are truly blissful.

8. Love: The purest thing you'll ever experience. I am talking about selfless, sincere, unconditional and powerful love for others and for life. Their intentions are always the best, wishing happiness for the rest. The best feeling in the world!

We decided we couldn't keep such valuable lessons to ourselves, so my husband Juan Fernando and I have made it our lives' mission to help change the perception of Down syndrome.

It all started when Valentina became the face of the children's line of famed Spanish designer Dolores Cortés, called DC Kids USA. At 9-months-old she became the first person with Down syndrome to serve as the main model for a major fashion designer. She appeared in the fashion catalogue for DC Kids USA and this feat caught worldwide attention. More than 200 media outlets wrote about her worldwide, in countries like Brazil, Indonesia, Israel and Italy. Valentina even made it to the ]cover of People magazine, with the headline "A Fresh Face! A Down Syndrome Baby model"

The difficult part about the campaign was balancing Valentina's daily therapies and her needs as a baby (which were our priorities), with that of a "celebrity" who was constantly giving interviews and being filmed. We had different crews following us for months documenting Valentina's story, and it's not easy having camera on you for long periods of time. We made sure she had her space in between interviews but she seemed to love being in front of a camera, so we supported her. The whole reason why we did this was because we realized we were able to somehow help others and replace outdated stereotypes with positive images.

The best part of being public about our life with a baby with Down syndrome has been the messages we've received from people around the globe: Family members who tell us that they recently had a child with trisomy 21 and were confused or sad until they read about Valentina; mothers and fathers telling us that our story has given them hope and a new perspective. The latest one we received was this week from a fan of Valentina's Facebook Page (yes, she has a Facebook and a Twitter account), and it read as follows:

"Your beautiful Valentina has the mission of changing our ways of thinking, talking and living, congratulations. I do prenatal diagnosis and couples counseling when a baby has any syndrome. I show couples pictures of Valentina and how happy you are as a family, many are so moved that they decide to have the baby. They not only need to hear the medical and scientific explanations of the condition, they need to hear real stories like yours. Afterwards they come back and thank me for the advice and support; these are the 'miracles of life' that you and your brave Valentina do."

The thought of Valentina not only changing a mindset, but saving a life is astonishing and incredibly humbling. I don't know if the people that write to us will ever know how much their words mean to us. They serve as fuel to keep us going with raising awareness. THANK YOU.

All of this has happened in just a year and a half, when Valentina came to this world. Some days are not the easiest because you have to deal with people that still don't know much about the condition and may blurt out an ignorant comment, or Valentina may get frustrated with an activity that she hasn't mastered yet. But then she smiles and it all goes away, or we get an email from a fan and it makes it all worth it. Being a parent in general is hard, and although raising a child with trisomy 21 may entail a few challenges, the rewards are also bigger, the sense of accomplishment is more intense and life takes on a whole new, more wonderful meaning.

In English, Valentina's full name freely translates to Brave Warrior. I now know that I was given a very special child, and there aren't enough words to describe how thankful, lucky and proud I am to be called her mother.

My husband and I will continue to raise awareness through pop culture, events and partnering with various organizations. What people see on TV, magazines, movies and other media is what they accept as the norm, so if you start seeing more individuals with trisomy 21 in the media, you'll be more open to it and we'll start becoming a more accepting and inclusive society.

I hope more people feel compelled to think outside of the box and can begin to enjoy the infinite advantages that come with knowing someone who just happens to have an extra chromosome, but can change your life.

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