My Actual Letter to the Mother who Aborted her Baby with Spina Bifida

 

A note to my readers: 

Recently, I received an E-mail from a mom who contacted me for advice. She had a pregnancy affected by spina bifida, and at the recommendation of her doctor— she chose to abort. In addition, she wanted my advice on how NOT to have another baby with spina bifida. As you might have read in my previous post, I felt the entire gamut of negative emotions upon opening and reading that E-mail— anger, sadness, judgment towards her, and just an overall sense of melancholy that seemed to pervade my emotions for several days. 

In a desperate attempt to sort out my thoughts, I took to the only place I felt I could safely share my heart— this blog

 

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The backlash was almost immediate. I expected there would be pro-choice advocates (I am still very much on the fence in the abortion debate— so don’t ask me) who would argue that she acted on her rights. Really, I anticipated that. 

What I didn’t expect was the anger and vitriol that spewed, even from moms of children with spina bifida who know me personally. I was accused of not being a good advocate because a good advocate “doesn’t think of her own feelings.” 

How is it even possible to do that!? I could never put my own feelings aside, for it was my own feelings that helped me become an advocate for the spina bifida community. It is my emotions that fuel my passion for activism and education. I could never turn off my emotions. That is just absurd. 

However, I also was not prepared for the outpouring of love, support, and encouragement from many friends and followers who applauded my article. They felt it was a good tribute to how many parents of kids with spina bifida— and adults with SB, especially— feel when they come across stories like these. I will be forever grateful especially for these people, for they buoyed my spirits up during one of the most challenging times I’ve encountered in my 5+ years of blogging. 

What a difference four days makes! 

After a few days away from the circus (really, it was ridiculous!) I decided to finally reply to this woman with a clear head and lighter heart. I’ve also been physically sick with various illnesses which have had me very preoccupied. 

So, without further ado, this is what I actually said to her— verbatim, raw, uncut, no edits. And it was from the heart. 

 

Dear _____________,

Thank you so much for contacting me. I can’t imagine how difficult it must be to contact someone with spina bifida after losing a baby with spina bifida.

First, let me say I am very saddened and sorry for your loss. However you lose a baby, it is heartbreaking and it must be so difficult. I admit, upon first reading your E-mail, I was quick to judge you. I felt angry that you did not want to have a baby with the condition that I have, as if having spina bifida means that my life is not worth living. This is why I did not answer you immediately. But after much thought, crying, and praying, I have come to realize that there are many like you who do not have the information they need to make this decision. I know for a fact that many doctors put pressure on mothers to have an abortion when spina bifida is diagnosed.

I have lived with spina bifida my whole life, but I have never been a mother, so of course, my advice is based on what I know from having spina bifida myself.

But, I receive many E-mails from mothers who are pregnant with a baby with spina bifida, and many who have children with spina bifida.

Let me start by saying that there is no way to guarantee that you won’t have another child with spina bifida. Nobody can promise you that.

Sadly, there has not been much research or information about spina bifida until recently. Honestly, the only way to guarantee that you won’t have a baby with any disorder or disease is to not get pregnant. A B-vitamin called folic acid has been shown in recent years to help prevent a child from having spina bifida, but even if you take it as recommended by a doctor, it only works about 70 percent of the time. So, that is not going to promise you a baby without spina bifida.

Here is the link to some information about folic acid published by the March of Dimes, a wonderful organization that helps prevent birth defects and support families of children affected by birth defects: http://www.marchofdimes.org/pregnancy/folic-acid.aspx

Finally, because you seem very determined to not have a baby with spina bifida, the final piece of advice I can think of offering you is this: if, by chance, you do end up having another baby with spina bifida, please know that it is NOT a death sentence, or a tragedy. 

I have met many, many families who have children born like me, with spina bifida, and who, like me, grow up to be happy, successful, even healthy adults. Yes, they sometimes go through many surgeries or other medical complications, but most can grow up happy and make friends, and as adults, get jobs, go to school, and even get married and have their own families. I have played with many children with spina bifida I have met through these families, and they are absolutely beautiful and precious, and very smart and active.

It is possible to have spina bifida and live a happy, healthy life. 

I work as a blogger, writer, and social media professional. My work has taken me to different places, as I am often invited to speak at events and conferences around the United States. I have connected with adults with spina bifida and families all over the world who reach out to me for advice or simply to know that someone else understands.

I do not mean to say that I never get sick or feel pain, because I do. I have had 19 surgeries and many, many hospital visits. My family has been through a lot, and it is not easy. Pain is a part of life, and even “healthy” children will get sick, get hurt, and suffer at some point. Every parent feels their job is to take away their child’s pain, but like my parents have done with me, their job is to stand by me, to hold my hand when I am having a hard time. They are my best friends and love me so much.

So please don’t think that having spina bifida means I have had a horrible life. Thank God, I live a wonderful life and I feel grateful for every minute of it.

I hope this serves to encourage you, no matter what doctors say, no matter what others say to you, to be the best mom you can be for your child, whether he or she has spina bifida or not.

That’s all you can really do.

 

May God Bless you and please contact me if you want to talk some more. I am here.

Laurita

 

Social Good at Hispanicize 2014: Be the Change

Hispanicize 2014 took place in Miami from April 1st through 4th, and this year, the organizers stepped it up by demonstrating that philanthropy is alive and well within the Latino community and beyond.

On March 31st, I attended Social Media for Social Good Training for Non-Profits Serving Latino & Multicultural Communities, a half-day, pre-conference event, sponsored by Florida Blue and open to professionals involved with nonprofit organizations.

 

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The presenters were Alex de Carvalho, founder of Social Media Club of South Florida, as well as Regional Development Director at Constant Contact; Katherine Doble, publisher of Los Tweens and Teens and president of Siren Marketing; and Maricela Cueva, vice president of VPE PR.

The topics covered ranged from strategies for E-mail marketing to the most effective platforms and methods for engaging potential cause supporters using social media.

I personally found the training interesting and engaging, and it was packed with lots of resources for nonprofits and individuals alike.

 

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For this cause blogger, one of the most awesome moments of the conference was witnessing Cuban bloguera Yoani Sánchez receive a Latinovator award for her courage and relentlessness in informing the global public on what is going on in Cuba.

The writer and activist has been arrested several times, even beaten, for speaking up.

I was honored and privileged to have the opportunity to meet her last year, when she came to Orlando to speak at my alma mater, Valencia College. After she was interviewed at the Latinovator Luncheon, I got to attend the press conference and ask her a question! What an amazing opportunity. I was thrilled. :)

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I couldn’t believe that Yoani Sánchez remembered me from the Valencia event! I imagine she meets hundreds of new people every week. 

Attending the Positive Impact Awards was yet another amazing opportunity to see social good up, close, and personal. It was also a wonderful time to pay tribute to many awesome Latinos who are making a huge difference in our communities– and in the world.

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I’m very proud to know Hispanicize Founder & CEO Manny Ruiz, and call him mi hermano. Congrats, Manny, on being given the key to the city of Miami!

By far, one of the most emotional moments during the Positive Impact Awards was seeing Hispanicize’s own Founder & CEO, Manny Ruiz, be surprised onstage by being presented with the key to the city of Miami by none other than the Mayor of the City of Miami, Tomás P. Regalado.

I actually had tears in my eyes, watching Manny choke up as he thanked everyone for their support. 😉

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Manny Ruiz gets emotional upon being awarded the key to the City of Miami. Love it!

Even early on in the evening, on the red carpet, I was able to say hello to a few familiar faces…including this one:

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Oh, you know, just hanging out with my friend Edward James Olmos! 

I was so thrilled that actor Edward James Olmos remembered me from last year, when I attended the premiere of “Filly Brown” during Hispanicize! Eeek!

But that wasn’t my only “geek-out” moment of the night. For reals. Yolanda Pagán, whose late husband Louis Pagán inspired the Positive Impact Awards, and I sort of improvised and tag-teamed that evening during the red carpet. It was a really sweet moment as I watched her glide gracefully from interview to interview and from photo op to photo op! Yoli and I have become very close friends ever since we met during Hispanicize last year, and I felt Blessed and honored to witness this shining moment for her.

Well, Yoli came over to me during the red carpet madness, and straight-up told me:

Maria Hinojosa wants to meet you.”

Jaw. Drops. On. Floor. 

“What!?” I gasped. 

“Maria Hinojosa,” Yoli repeated. “She wants to meet you.”

“Why?” I muttered breathlessly. 

“Are you seriously asking that question?” Yoli countered. 

Well…yes I am!  But, no matter. When veteran, award-winning journalist Maria Hinojosa asks to meet you, you ask when and where! 

So, I dashed over to where Maria Hinojosa was being photographed and fawned over. Then, she notices me.

Then, she addresses me.

She said she really wanted to meet me, and that I was an amazing blogger or something like that, but, truth be told, as is the cruel irony in most situations that you should have been taping– I remember very little of what was actually said because of how shocked I was. Understandably. 

But I do recall the million-dollar-moment, as I was basking in my 30 seconds of glory, Yoli watching me the entire time with a huge grin on her face. 

Manny walked over to us (to formally introduce me to Maria, I imagine) and puts his hand on my shoulder and says to Maria (I mean, are we on first-name-basis now!?):

“Laurita is one of the best bloggers in the country.” By this point, I’m fighting back the tears. 

And then Maria totally says, pointedly, to Manny: 

“I know! That’s why I wanted to meet her!” 

By then, whether I was still breathing was questionable. I think I had a pulse, though, because my heart was racing.

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Maria and me. New besties? Here’s hoping! 😉 

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George Torres, founder of the Positive Impact Awards, Yolanda “Yoli” Pagán, wife of Louis Pagán, and Manny Ruiz pay tribute to Louis’ legacy. (Doesn’t she look stunning?)

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Some of the Positive Impact Awards honorees share their moment of triumph onstage. 

I fear I’ve already made this post too long, but I have to share about the panel I spoke on, on Friday! My dear friend and hermano, George Torres, a.k.a., “Urban Jíbaro,” asked me to speak on a panel titled “Hispanic Social Media for Social Good: Corporate Best Practices.”

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(From left to right): Stephen Chávez, founder of Latino Foodie, moderated the #SocialGood panel, which featured George “Urban Jíbaro” Torres, founder of Sofrito Media Group, and Sofrifo for Your Soul, Steven Sánchez, Global Corporate Communications Manager for 3M, Sonia Díaz of Balsera Communications, and me. 

I have been fortunate to be a part of several dynamic panel discussions these past few years, and this one was no exception! Despite being the last day of the conference, and people showing up– *ahem*– at “Latino time” (there were parties every night!), I feel we had an amazing chemistry among our group, and we were able to engage with our audience members.

The best part was being able to tell my story, and hearing everyone else’s personal journeys through social good! I’ll be honest– I came away from this panel learning a lot! 

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With Yolanda “Yoli” Pagán, who is now one of BFFs! I can’t tell you how grateful I am for your support, encouragement, and many pep talks before and during Hispanicize! 😉


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With my longtime amiga, Alsy Acevedo of Catholic Relief Services, Anadel Alberti of Lanugo, and Yoli. Thanks so much, ladies, for supporting me and attending my panel! 😉

Later that day, after I recovered my nerves from speaking, I ran into Matt Wallaert, a behavioral scientist who works with Bing. He wanted to talk to me and introduce me to a group of young students with ASPIRA of Florida that he brought to Hispanicize, so that I could encourage them. Needless to say, I was at a total loss as to what to say to these kids! I have no idea how to foster and nurture young minds; I don’t know what you’re supposed to say to encourage them!

Well, when I saw Matt and a young friend of his, Chantal, they told me that they had attended my panel and that it was great! Matt had walked in with his group of students to watch/hear us! I was so incredibly moved by their show of support, and I realized that, when it comes to the next generation, all you have to really do is be there for them.

The week of Hispanicize was both too long and too fast. There were so many things I would have liked to do but didn’t have the time or energy to do. There’s just so much! That’s why I’m dedicating several posts, here, on Espresso con Leche, and on my hypeorlando blog, to covering everything I can.

By far, the most inspiring and uplifting moments of Hispanicize this year were the ones related to social good. Of course, it feels great to give, and it also feels wonderful to connect with others who are passionate about philanthropy within the social media space.

The best part of using social media for social good is that “the buck doesn’t stop here.” The donation or Tweet that you make, the photo you instagram, the blog post you publish about a cause can have so many impressions and can be shared so many times. Social media knows no boundaries or limits. Social media exists so that we can push our stories out beyond the natural, physical scope of older media channels.

And this week, I got to connect and reconnect with so many others who feel passionate about doing just that!

A hearty shout-out to the following sponsors:

  • Florida Blue, who sponsored the Social Media for Social Good Training for Non-profits Serving Latino and Multicultural Communities training
  • 3M, who sponsored the Positive Impact Awards, this year’s signature event, in addition to sponsoring and participating on our panel, Hispanic Social Media for Social Good: Corporate Best Practices.
  • Toyota Latino for being my sponsor during Hispanicize, and for inviting me to sit at their table during the Positive Impact Awards! I have so much more content to share about you guys, but for now I’ll say that you have truly demonstrated your commitment to social good in every initiative and program you design for consumers. Thanks for taking me under your wings! 😉

 

 

“You must be the change you wish to see in the world.” 

–Mahatma Gandhi

–Laurita ♥