In Case You Are Jealous of My Friday Night

People often comment on my Facebook posts (especially fellow ladies!) saying what a fabulous life I have. They see me gliding from event to event, effortlessly, cozying up to public figures and instagramming delicious food (and coffee drinks)!

I don’t blame you all for commenting, or even feeling a twinge of jealousy or resentment. It’s natural, and to be completely honest, the same thing goes through my mind when I’m instagram- or Facebook-stalking my friends and colleagues.

But, do you want the brutally honest truth? Because here it is.

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There’s A LOT that gets filtered out of my life when I post on social media. Like, a hell of a lot. When I publish a photo of me in a gorgeous dress with my hair and makeup flawlessly done at an event enjoying the company of others, here’s what you don’t see:

You don’t see/hear the laughably-inevitable meltdown/pity-party two hours earlier about not being able to wear the shoes all my other girl peers are wearing (heels, stilettos, etc.).

You don’t see the panic attack I’m having as I’m rushing to make it out the door on time and have to stop and raid every drawer in the house for urinary catheters. Since they are delivered and I need a doctor’s prescription, it’s not like I can waltz into a public restroom with a few quarters and get a catheter out of a dispenser. (But you can easily find tampons or condoms, no doubt!)

You don’t see the frustration I feel when trying to find the perfect purse to match my outfit— that is, one that is sleek enough to carry easily but that will fit at least 5 catheters (because when your LIFE depends on using a plastic tube every three hours, there’s no room for guesstimating. Better to overestimate than…God forbid. And if I have an infection…forget it.)

You don’t see me up all night with indigestion because my digestive tract is much slower than everyone else’s. That expensive dinner I had cost me a good night’s sleep.

But most of all, you don’t see the struggle it is as I try my best to “fit in” (say what you will about being an individual, but don’t kid yourself— EVERYONE wants to fit in) while treading the delicate balance of staying “healthy” (whatever that means, because I haven’t felt “healthy” in many years) and being able to breathe easy and have some semblance of a social life.

That all being said, I know how truly fortunate I am. I have opportunities that many of my peers with spina bifida do not. I don’t lose sight of that.

But, today is Friday. Tonight, God willing, I actually am going out on a Friday night alone (a rare occurrence!) to attend a social / professional function. Just a while ago, I got off the phone after talking to my medical supply provider and my urologist’s office back-to-back. It feels like I am constantly having to negotiate how important a life-saving product is to me. Negotiate how many times a day I am allowed to pee. Can you imagine having your visits to the bathroom regulated? These are questions I actually get from my doctor’s office. (They will actually insist I drink more water, and then ask me why I use so many catheters!)

Not to mention my private medical insurance, which makes me jump through bureaucratic hoops just to be able to receive these bare necessities.

I don’t want to be calculating. I don’t want to be counting catheters. I don’t want to leave half of my meal untouched because I’m afraid of indigestion. I don’t want to walk into the place and immediately scan where the bathrooms are. I don’t want to wonder where I’ll park my wheelchair.

Tonight, I just want to act my age, and know that I’ve earned it. Tonight, I don’t just want to LIVE, I want to feel ALIVE, and know that my posts on social media actually reflect the fabulous reality.

It’s Never Too Early #RSVawareness #PreemieProtection

 

This is part of a sponsored collaboration with MedImmune and Latina Mom Bloggers. However, all opinions expressed are my own. 

 RSV_image

 

As many of you know, one of my greatest passions in life is raising public awareness of spina bifida and the challenges that affect people living with SB, as well as the accomplishments, talents, and abilities of these very people.

Along the way, I have become aware of so many other worthy causes, in particular other serious conditions and illnesses that also deserve awareness and publicity. It is in sharing information about these causes that I find great purpose.

November 17th is World Prematurity Day. (It’s actually the day after my birthday!)

With many wonderful awareness initiatives, walks, and fundraisers that now take place nationally, it’s awesome to see that much of the public is now more informed about the incidence of premature births.

What many don’t know about, however, is a disease that affects many premature babies– respiratory syncytial virus, or RSV.

It was the lack of awareness of spina bifida that encouraged me to begin writing this blog in the first place. And now, it’s the lack of awareness of RSV among parents that has compelled me to partner with MedImmune to share this vital, potentially life-saving, information. 

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RSV is a very common seasonal virus that affects nearly 100% of babies by the age of 2. 

Here are some fast facts about RSV and prematurity that  every parent needs to know: 

  • Each year worldwide, 13 million babies are born prematurely
  • 75% of parents don’t know the definition of prematurity (birth at or before 37 weeks gestation)
  •  Most pregnant women don’t ask their healthcare provider about the risk of delivering prematurely and the potential consequences of preterm birth for their child
  • Severe RSV disease is the leading cause of infant hospitalizations in the U.S., with approximately 125,000 hospitalizations and up to 200 infant deaths each year.
  • RSV season usually occurs from November through March for most of the U.S., but it varies regionally, and from year to year.

 

Most of the moms I’ve befriended or who befriend me on social media have a child with spina bifida. As pillars of strength and examples of grace and perseverance for their families, these women would do anything for their families, and it would break my heart to hear of one of their children falling ill with RSV, especially with everything else they already have to deal with because of spina bifida. 

This is why I feel it’s so important for me to share the symptoms and warning signs to look out for when diagnosing RSV. Parents, please be on high alert if your child exhibits any of these symptoms: 

  • Persistent coughing or wheezing
  • Bluish color around the lips, mouth, or fingernails
  •  Rapid, difficult, or gasping breaths
  • Fever (especially if it is over 100.4°F [rectal] in infants under 3 months of age)

There is no specific treatment for RSV disease, so prevention is your best bet. That being said, here are a few simple parents should take to help reduce the risk of your child getting RSV, particularly during high season, which is from November through March:

 

  • Understand the risk factors and ask your child’s pediatrician if your child may be at increased risk
  • Wash your hands and ask others to do the same
  • Keep toys, clothes, blankets, and sheets clean
  • Avoid crowds and other young children during RSV season

 

Yes, this information may seem very overwhelming, and I’m sure that it’s nothing that parents want to even think about. But, as the tired old saying goes, “it’s better to be safe than sorry,” and by taking the proper precautions, parents, especially those whose children have other health issues, will have one less thing to worry about. 

And it’s never too early– or premature— to take good care of our children!

For more information and tips, you can visit www.RSVprotection.com.

 

Keeping Perspective: ‘Hero’ Spencer Day Twitter Chat a Success!

When you’re going through life, struggling to keep up with everything that’s going on with you, around you, it can be a real challenge sometimes to remember why you “do what you do.”
Three years and eight months ago, I had the opportunity to meet my new musical “idol,” contemporary jazz singer and songwriter, Spencer Day. I was simply overjoyed to meet him, and I honestly never thought much would happen after that.

 

DSC01390Spencer and me, enjoying a cup of coffee in NYC in August 2010. 

 

I couldn’t have been more wrong.

Since our initial encounter in Clearwater for a jazz festival, after which we talked at length and I briefed him on my campaign for raising awareness of spina bifida, we have remained connected. He knows I’m moving forward, deciding what the next step will be for this cause, and he wants to be there to support it, in any way he can.

Several months ago, the opportunity arose for me to be involved in helping his career, by collaborating with his fan club and promoting events, music, and Spencer’s latest projects on different social media channels.

Out of all the work I’ve done thus far in my life– including past jobs– few things have been as rewarding for me as the experience of being a part of Spencer’s Fan Club Social Media Team. We started as a motley crew, an assortment of people who clearly share a common interest– an enthusiasm for Spencer Day’s music.

About a month ago, a crazy, random idea popped into my head: Hey, guys, why don’t we host a Twitter party for Spencer? 

It seemed like a harebrained project to take on, considering I’m always on the go, and everyone is busy during the holidays. But we decided to do it.

Yesterday evening, I hosted, along with Spencer as our guest of honor, a Twitter chat with many of Spencer’s biggest fans, in addition to quite a few people who are new to Spencer’s music. The conversation was lively, informal, and very funny at times! Attendees were encouraged to ask Spencer anything– and they did, and he responded. 😉 

As I sipped on my coffee (in my pajamas!) while trying to keep up with the conversation thread, I marveled that such an awesome cyber event could be pulled off in such a short window of time. I also couldn’t help but feel gratitude toward all of the people who participated– even if only for a few minutes during their busy evening.

As a social media consultant, the number of “impressions” or “pageviews” matters. It’s a measurement of quantifiable success, and it’s the most “tangible” evidence of whether or not an online event was a success.

As a person, however, I realized that shouldn’t matter to me. 

What mattered is that everywhere I looked in my Twitter feed, I could see familiar “faces,” avatars and usernames of my friends, some bloggers, some non-bloggers, who showed up in support of me– and in support of Spencer. 

We also got to reward some of Spencer’s fans and followers! We gave away 5 copies of Spencer’s latest album, “The Mystery of You,” as well as 6 digital copies of Spencer’s holiday album, “If Christmas Doesn’t Kill Me.” It was so rewarding to make people happy by sharing his music!

The report I generated afterwards showed that, in the past week, the hashtag #SpencerDay has had over 1.8 million impressions.  That’s not bad at all, considering how many holiday/Christmas parties, family gatherings, business events, and other commitments everyone has going on during this season, that make it difficult to participate in online events.

 

SpencerDayTwitterResults

 

For a social media consultant, those 1.8 million impressions are the definition of success. 

For me, however, it’s those familiar faces, the “avatars” I know so well, that made me feel like a winner. 

I’m truly blessed to have so many people who genuinely support and “get” what I do. Even my parents, who years ago found the words “blog” and “Tweet” intimidating, pitched in by Tweeting and making sure I had a hot mug of coffee to help me stay alert. 😉

Yes, it’s true– there are people who might measure success in different ways– by monetary earnings, job promotions, or how many conference speaking gigs they landed in a year.

That’s all good and enticing. (Hey, who wouldn’t want all that?!)

But sitting at my laptop, Tweeting furiously and watching as the stream flowed constantly with new comments, questions, and retweets from people both familiar and unfamiliar, I couldn’t help but feel like the luckiest girl in the world. 

Thank you, from the bottom of my grateful heart, to all of you who joined, shared, Tweeted, promoted, and encouraged. Thanks to all of you who had the most awesome things to say about Spencer’s music, whether it was the first song you’d heard or if you’ve been a longtime listener. 

Thanks for being there anytime I’ve wondered if I could do something. Thanks for lifting me up.

 

Thanks, above all, for helping me to keep my perspective.

 

If you aren’t already following Spencer, please do so here:

 

Spencer Day on Twitter 

Spencer Day on Facebook 

Spencer Day Fan Club on Twitter 

Spencer Day Fan Club on Facebook

 

 

Love,

Laurita ♥

5 Simple Ways to Help Someone Living with Spina Bifida / #GivingTuesday

 

Giving Tuesday

 

 

Today is Giving Tuesday, a movement for social good that is taking social media outlets by storm. 

Thousands and thousands of people are sharing ways in which we can all give back to great causes. 

I don’t wish to add to the cacophony of causes by asking you to donate to this or that. Instead, I want to give all of you — even those with limited funds some tips on how you can support a friend or loved one who has spina bifida, or who lives with someone who has spina bifida (caregivers need support, too!) 

So, read on for some musts and must-nots.

 

1. Don’t exclude us from social gatherings. 

I remember how painful it was growing up, and the teen years were just as awkward as my early years. It hurt me deeply when I found out some of my girlfriends were hanging out and choosing not to invite me. The reason? They thought I might bring my mom along. Although it wasn’t true at all, it still hurt. My so-called friends didn’t think I was independent enough to attend a social function on my own, without my parents at my side.

If you have a friend with spina bifida, ask them what hobbies or activities they enjoy. Invite him or her to your next outing. If you have any doubts as to what their capabilities or limitations are, ask, but never assume. 

 

 

2. Ask us for help or advice when you need it. 

Believe me. This can actually be one of the greatest gifts you will give someone with spina bifida. Many of us with spina bifida are so tired of being “helped” all the time, and many times people won’t approach us to ask a simple favor out of fear that we won’t be able to help, or we’re too “burdened” by our lives. That, if you ask me, is an even greater burden.

So, go ahead and ask! The worst possible thing we could say to you is “no.” 😉

You might even find that we have a lot to offer and give to others. 

 

 

3. Don’t tell us about every medical study you’ve read about pertaining to spina bifida! 

No, seriously. We don’t want to hear it. Especially if it involves the prevention of spina bifida, medical research is based on a lot of different variables, and while your intentions may be noble, mentioning something like this can sound like you’re trying to “fix us.” Most people with spina bifida go through countless surgeries and hospitalizations, and often have different therapies to learn to maximize their potential, physically. Many times, if there is a procedure we can benefit from, chances are it’s already making the rounds in online support forums for families with spina bifida!

 

 

4. Don’t tell us God will heal us, or that there’s a reason we have spina bifida. 

I’m a deeply religious and spiritual person, and I have my firm beliefs. I personally do believe things happen for a reason, but if you’re saying this to me after I tell you about spina bifida, you’ll come off like a total jerk. Does that mean God chose for me to deal with spina bifida? Maybe. Then again, there are a lot of great things in my life that have come from having spina bifida, and also, a lot of great things that don’t have absolutely anything to do with that.

Still, never put us on pedestals because of having spina bifida. That’s just…creepy. 

 

 

5. We’re not sheltered. You can talk to us about…anything. 

I don’t know where this crazy misconception was born that people with spina bifida aren’t exposed to certain things– like sex, alcohol, rock n’ roll, the rise and fall of Communism, and Miley’s infamous twerkfest. 

We’re human. We read the tabloids from time to time, usually in the bathroom, just like you do. 

And we also like to party. Hey, you can’t expect us to sit around and watch C-SPAN all day, right? (Fun as it sounds.) 

What’s more, many of us have graduated high school, or even college or grad school. We like to talk. And I love Google and Wikipedia! So, even if I don’t understand what you’re talking about, give me about 30 seconds with my phone to impress you. 😉

Oh, and we also have brag-worthy lives filled with riches and diamonds and yachts and filthy-rich-jetsetting, so make sure not to hog the entire conversation. 😉

 

 

Hopefully that sheds a little light on some basic things you can do to keep someone with spina bifida in your life. (Yes, we grow tired of being overlooked, just like you would!) The most important thing to remember is that our lives don’t revolve around having spina bifida. There are so many facets of our lives, and many of them are similar to yours. 

Also, like you, we hate twerking.

Happy Giving Tuesday!  

–Laurita ♥

Your Journey: Who is Riding Shotgun?

Disclosure: This post contains affiliate links, which means that if you click on one of the product links, I’ll receive some compensation.

 

They say the journey is as important as, if not more important than, the destination. It sounds cliché, but you know what? I believe it.

As the new year kicks into full swing, I can’t help but reflect on how much has changed– and how much my life has changed– since springs past.

Spring is supposed to be a time of “renewal” and “change.” In reality, every season of every year can bring changes, good or bad.

Although I no longer have a designated spring break per sé, this past spring break was quite the memorable one, having been named one of La Prensa’s Mujeres Destacadas (Outstanding Women) in the Central Florida community earlier this month. I will be eternally grateful to those who have supported me, encouraged me, and advised me throughout the years. But I also need to take a moment to reflect on how I’ve managed to help myself, because personal growth has been such an important factor in the equation of my life.

Overwhelmed with joy at receiving the “Young Leader” award during La Prensa’s Mujeres Destacadas ceremony, alongside some pretty amazing women. The most amazing of all, Mami, is to my left. :)

 

If someone had told me five years ago that I was going to become a blogger, I would have laughed in their face. Hard. I didn’t think I knew how to “do the social media thing.” What I really wanted to be was a traditional journalist– in either  print or television broadcast media.

I remember in 2008, attending a ceremony for a journalism scholarship I received from the National Association of Hispanic Journalists. I couldn’t believe I had been selected for such an honor. It was completely unexpected. That trip to New York City in March proved to be one of the most memorable spring breaks of my life, as I shared that moment with my family.

Fast-forward to five years later. I have a lot more confidence than I used to at that time, and I realize now that people are often really seeing me, and not my spina bifida. To me, that is just amazing, after a lifetime of fighting to be seen and heard for my own merits, and not my physical traits.

 

Carrying a lovely floral arrangement during the NAHJ Scholarship Gala in 2008, in New York City.

 

That Saturday evening in March, when I stood up in shock to receive the Mujeres Destacadas award, I marveled at how it had all come to pass. As I looked around the room, I saw many faces I recognized, starting with my mother’s. My family has been with me through all the vacations, the road trips, the plane rides, and yes, many a spring break, whether here or elsewhere.

I realize now that it really doesn’t matter where you’re going, or what you’re actually doing on the journey. We each have our own personal journey, and what matters is who chooses to ride shotgun with you. 😉

 

 

**Disclosure: This post is sponsored by Britax (follow on Twitter) and I will be compensated. I am a member of the Britax Latina Advisory Board. All ideas and opinions are my own.

 

 

Hispanicize 2012 Recap Part 2 – Cruisin’, Cubans, Cronies & Croquetas with #ChevyHispz!

As my body and mind seeks to recover from all the fun and excitement of Hispanicize 2012, and I work to keep up with the connections I’ve made, I’m finding a lot of merit in my idea of compartmentalizing my experiences into separate posts. The truth is, I honestly couldn’t consolidate it all into one blog post if I tried.

So alas, here’s the second installment of my Hispanicize 2012 series!

On the first official day of the conference, Tuesday, April 10th, it was very exciting to begin seeing friends from all over the country pouring into the JW Marriott Marquis. I reconnected with many old friends from LATISM, NAHJ, and also from many local organizations I’m familiar with.

 

I started off the day at the Non-Profit Case Study: Using Social Media to Deliver Health Messages to Engage Latina Moms and Families" presentation, with Carla Briceño of Bixal and Lilliam Acosta-Sánchez of March of Dimes' nacersano.org.

 

One especially interesting session I started the day off with was with Carla Briceño of Bixal and Lillam Acosta Sánchez of nacersano.org, the Latino outreach branch of March of Dimes. I had the honor of being a co-panelist with Lilliam at LATISM 2011 in November. The information they gave during the session really highlighted key ways that organizations, whether non-profit or not, can engage with the Latino community and get their message across effectively using online channels.

During the panel, Lilliam actually called on me to explain folic acid’s role in helping to prevent spina bifida! It caught me completely off-guard. Fortunately for me, I can talk about this, even in my sleep. 😉

 

An amazing, Caprese-style appetizer at lunch!

A great turkey wrap. Because ALL good food deserves to be photographed!

 

Right after lunch, I ran into one of my good friends, who until that moment, had been online-only– Eva Smith, legendary co-founder of Latina Mom Bloggers!

With Eva Smith of Latina Mom Bloggers. What an awesome moment! :)

 

Then I was distracted by coming across even more of my cronies– Cristy Clavijo-KishLibby Juliá-Vázquez, Lynn Ponder, Fernando Rodríguez, Andy Checo, and a new acquaintance, Albert Collazo (Albert and I became fast friends, though!).

 

(From L to R): Me, Cristy, Libby, Albert, Lynn, Fernando and Andy. Priceless pic! :)

 

Getting my badge always makes it more official!! :D

 

Perhaps one of the most invaluable things for me was being able to personally thank the people who made it possible for me to attend Hispanicize. I loved meeting Katherine Johnson!

With Katherine Johnson, one of Hispanicize 2012's organizers. She's so awesome!!

 

Ever since we met during BlogHer ’10 in New York City, Blanca Stella Mejía and I have been like blogger besties! To say that she has been an inspiration, a mentor and like a sister to me would be a vast understatement. She has been one of the most supportive people for me in the social media world, and offline, she’s the best!

Blanca was one of the first blogueras to interview me for her own blog, MiCaminar.com. She, Jeannette Kaplun of Todobebé, and Maria De Los Angeles of Sex and the Beach are no doubt my best friends in South Florida!

 

With Blanca. I can't imagine what my life would be like without knowing her! :)

 

The next part of my day was spent cruisin’ around in a Chevy Volt, which is an electric-powered car. It will use electric power for the first 40 miles, then the battery takes over. The Chevy Landmark Tour was one of the most clever features of Hispanicize 2012, as it took attendees on not only a scenic tour of Downtown Miami, but it also engaged all the senses.

 

With Arturo Villar, Publisher of Hispanic Market Weekly, just before we each loaded into vehicles for the Chevy Landmark Tour!

 

From the moment my parents and I jumped into the Chevy Volt, it was a pretty smooth ride!

The Car. A brand-new Chevy Volt.

Juan, our driver/tour guide, was great! He's from Colombia-- I love that Latin America really represented.

 

I was quite fascinated by some of the Chevy Volt’s high-tech features.

 

This. Is. Awesome.

 

The tour took us to the Little Havana area to see the Cuban Memorial Plaza, where cubanos who had been exiled from Cuba and who fought in the Bay of Pigs invasion are remembered with reverence.

In Cuban Memorial Plaza. :)

 

During my excursion in Little Havana, I got to meet a group of Cubans who are protesting the the incarceration of political prisoners in their native land.

Even if my interaction with them was very brief, I felt the energy of their cause, and it certainly ignited a fire in my activist’s heart. :)

 

My new amigos. May God keep them safe and guide their efforts in the name of justice.

 

But visiting Little Havana wasn’t all politics and patriotism. I saw a few more great sights and grabbed a bite at the famous Café Versailles.

 

At a very famous intersection: Tamiami Trail ("Calle Ocho") with Cuban Memorial Boulevard.

 

They really roll out the welcome mat for visitors!
Love this architecture!

 

I really identified with Miami's rich heritage of revolutionaries and activists.

 

No visit to the most famous Cuban neighborhood in Miami would be complete without a little Latino flavor! The tour stopped at Café Versailles– where tour participants were treated to coladas (tiny shots of espresso) and croquetas– both staples in the Miami diet!

 

:)

 

How exciting!!

 

I'm oh-so-excited about trying one of these croquetas!

 

Okay, maybe MORE than one...try five or six!?

 

I need something to wash down the fried food explosion in my mouth...how about a coladita?

 

Okay, I'm sold! Can I get something dulce to go?

 

Too. Many. Choices. But I went with my usual, a quesito, a sweet, creamy cheese-filled pastry. Never fails!

 

I had sooo much fun cruisin' in this Chevy Volt. Here I am, between Juans-- the one on the left dropped our Chevy Traverse off at home to use for the week, and the one on the right was our tour driver!

 

Still need to explore more of this beautiful, diverse city!

 

Thanks so much, Chevy, for the awesome! memories!

 

There’s much, much more to come soon on Holdin’ Out for a Hero about Hispanicize, including a review of my panel discussion, Blogging for a Cause, with Lisa Quiñones Fontánez, Eliana Tardío Hurtado, and Chantilly Patiño. Keep checking back for updates, and don’t forget to also visit Espresso con Leche for bilingual content and more photos!

 

–Laurita 😉