Join Me in Getting Covered #TakeCareChat

Disclosure: This post is part of a campaign with Ad Council and Get Covered America. I will be compensated for publishing this post and for participating in the Twitter chat. All ideas and opinions are my own. 


If there’s someone who truly understands the value of having good health insurance, it’s me– trust me. I certainly wouldn’t be here without the vigilant care of many good healthcare providers and nurses, and there were times in my childhood when I was literally in and out of the hospital every other week.

Sadly, more than 1 in 6 Americans don’t have health insurance.

This is mostly due to one of the following reasons:

  • They don’t receive coverage from their employer 
  • They cannot afford coverage
  • They were previously denied coverage because of a pre-existing condition


Under the new Affordable Care Act, people cannot be denied health coverage because of a preexisting condition.  This is fabulous news for me, having spina bifida and hydrocephalus! Thanks to the ACA, insurance companies can’t turn me away because of that. 

I feel very blessed and fortunate to have access to good healthcare, and I don’t wish to take that for granted for a single second. But, if you’re not willing to take my word for it, perhaps you’ll listen to this adorable menagerie of pets who have a message for you:



What’s more, most people will have to pay a fine if you don’t enroll in healthcare up by March 31st. The 2014 fine is $95 for an adult or 1% of a person’s income, whichever is greater. (The fine is $47.50 for a child, and a family can only be fined up to $285.)

I’ll be joining Ad Council and Get Covered America TOMORROW from 1 to 2 p.m. E.T. during a Twitter chat where you can learn more and ask questions about getting covered. Be sure to follow @GetCoveredUS on Twitter and Tweet using the hashtag #TakeCareChat to participate in the conversation!



In the meantime, you can visit to find out how you can enroll in health insurance, and to get answers to some frequently asked questions about the process. There are also some pretty awesome tools on the site, like the Get Covered Calculator, which can help you discover how much assistance you could qualify for to help pay for your insurance coverage.

Figuring out how to navigate the ins and outs of the ACA can be daunting, especially since it’s so crucial to your health and to the health of your family. But with the proper tools and resources, you’ll be enrolling in no time– and hopefully by the deadline of March 31st!



The Sad Truth About ‘Selfies’ #NaturalDay

Disclosure: This post is not sponsored. I will not receive any compensation for writing/publishing this post. I am writing it of my own free will. All ideas and opinions are my own.


I’ve had a lot to say lately on the societal front. And I mean, a LOT. It’s no secret that I’ve always had my major gripes with society, and who can blame me? As a young, naïve, kindergarten kid, it was society that informed me that I was different, and not in a way that would be deemed “acceptable.”

It was children in our society that bullied, taunted, and tormented me, and it was parents of those children in our society that stood by idly, shrugging their shoulders, and letting it happen, while my parents made desperate phone call after phone call to plead on my behalf that they talk to their cruel kids. 

But maybe– just maybe, this wasn’t entirely their fault. Because other parents maybe stood idly by while this happened to them as they were growing up. They learned that some kids are just “born different,” and it’s okay to stand by while they get helplessly picked on because of something in their physical appearance. 

I’ve made some incredible friends in the past four years of being a blogger and online activist. Last night, while flipping channels absentmindedly, I grew bored and decided to join the #NaturalDay Twitter party, hosted by my awesome friend, Nadia Jones, of Justice Jonesie and the Niche Parent Network.

The party’s guest of honor was Sanah Jivani, a girl with an unbelievably remarkable story that I’m ashamed to say I’d never heard of until yesterday.

Sanah was diagnosed as a little girl with a rare disorder that caused her to lose her hair gradually. By the time she was in middle school, which is such a critical time in the human development process, she had lost it all.

The target of teasing and bullying, she decided to take a bold step– she took to YouTube and filmed a short video of her removing her wig.

It went viral. She received many supportive and encouraging messages, and she had found her calling. 

Sanah launched a project called “Natural Day” for today, February 13th. The purpose is to get everyone to go without makeup, wigs, or embellishments for one day. The request is simple, but it sends a strong resounding message about who we’ve become as a society. 

We are all smoke and mirrors. On instagram, we are all about filters. 

It’s sad to realize that, in an age so obsessed with “the selfie,” most of these self-portraits are actually staged– with lots of makeup, perfect lighting, and carefully-coiffed hair. Rarely is there any actual spontaneity in these images. And, as a result, rarely is there ever any truth. 

Watching Sanah’s brutally honest video, I can’t help but wonder what my friend Carly Findlay, an Australian blogger and badass appearance activist, would have to say about this topic. She has spent her entire life living with a condition that she can’t hide from.

In a way that might not be obvious to most, I’ve done something very similar with my body– I’ve tried to hide it. I’m reflecting on a post I wrote in 2011, Standing on My Own Two Feet, which I found excruciatingly difficult to write. 

I remember sitting at my laptop, eyes wide and wary, hands cold and clammy, as I hit “publish.” I remember refreshing my Facebook page what seemed like a million times as supportive comments pouring in.

I remember my eyes welling up with tears as I realized that people love me and accept me for who I am.

I remember feeling vindicated. 

So, for Sanah and so many others, here’s my own selfie. No makeup, hair slightly “done” but nonetheless in disarray. No smoke or mirrors– just me. 






Who knows? If Sanah can do this– reveal her true self, little by little, maybe I can, too. 


I never go out without makeup on my face, so for me, let’s just say this is a good first step in the right direction.

Be sure to post your own selfies and videos without makeup and with natural hair today, using the hashtag #NaturalDay! And follow my girl Sanah on Twitter @SanahJivani.

We may be a society that is saturated with images of New York Fashion Week models that are rail-thin and wear excessive makeup and high heels, but we’re all human and we can grow. (To that end, did you see this awesome article in HuffPo about the first woman with a ‘physical disability’ to strut the NYFW runway? Check it out!)

Yes, these are all baby steps, and it’ll take a heck of a lot more than just a selfie or two to change long-held standards of “beauty.” But that’s what’s so fabulous about the internet.

It only has to start with one. 


For more of my thoughts on beauty and self-worth, please read “The Woman in the Mirror,” my post on the BlogHer ’12 Fashion Show, which I participated in as a model, as well as “Standing on my Own Two Feet,” which was chosen for BlogHer’s Voices of the Year in 2012. 



Laurita ♥



My Sin of Omission



Yeah, it’s been a while, to say the least.

I spent the last few hours posting photos, status updates, and responding to Tweets about an event I attended in Orlando, and which I plan to write about on my other blog.

Earlier tonight, I put on my casual-dress-professional-cold-weather attire and was present at an exclusive preview tasting at a chocolatier.

I sipped great wine, ate fine chocolate, and mingled with friends, old and new.

We exchanged lighthearted conversation about our blogs, and weighed in on other recent events many of us have attended.

I exchanged hugs, social kisses, and sincere thanks to the people who hosted and invited me.

And I did it all with the utmost sincerity. Of that, you can be sure. 

No one knew that, for about a week, I’ve been dealing with a persistent, painful bladder infection that has me cringing every time I pee (a.k.a. “self-cath,” but whatevs. Peeing is peeing.).

No one probably imagined that, every night for the past three nights, severe bladder cramps have kept me up late and have almost brought me to tears. (Well, not really close to tears– but only because I have a pretty high threshold for pain. I’ve grown “accustomed” to it, if that’s even possible.) 

No one could have known that, just this afternoon, I was on the phone several times with my urologist’s nurse, scheduling what will be my first appointment in years with him. I’ve been in a urology limbo of sorts, because he is a pediatric urologist, and while technically, he is supposed to see patients until they turn 21, I am a “special case,” because I have spina bifida and an augmented bladder. He performed my bladder augmentation surgery– my most invasive and dangerous procedure to date– when I was 10, and I trust him with my life. 

Indeed, no one, save for my parents, would have known any of this, because, simply put, I haven’t talked about it. 

And why would I talk about it?

Since the holidays, I’ve been to numerous blogger events, celebrated birthdays, weekday happy hours, workshops, and the like.

My posts on Facebook have often been the trigger for playful, harmless jealousy. Friends often comment, wishing they had my life. From what I usually post on my Facebook profile, I can’t say that I blame them. By all accounts, I seem to lead a pretty fabulous life. 

I’ve got news for you, though.

Everyone omits on Facebook. 

Yep, that’s right. From the bitchiest posts to the statuses that are downright inspiring, we are all guilty of carefully vetting and considering the content that we post on our social media profiles. 

Why would anyone assume I am an exception? 

In fact, if anyone has good reason to filter her output, it’s me. 

Because my girlfriends don’t want to hear during our ladies’ night out about how my urine stinks of ammonia and looks as murky as swamp water.

Because, as bloggers, while we all over-share to an extent, no one wants to hear at a professional gathering of social media influencers how Miralax isn’t doing the trick for me just yet.

Because, God forbid I should choose the joyful family Christmas dinner in Puerto Rico as the venue for disclosing how I’ve totally slacked off on my neurosurgery stuff and am now desperate to schedule a follow-up with my neuro to find out the results of my MRI, which I had done before the holidays.

Because God forbid I be more human than people can actually bear. 

Unsurprisingly, the issues I just described above (and many more) are very common topics of discussion on many of the private online groups and forums I’m a part of that pertain to life with spina bifida.

You might find it odd, but I actually don’t share too much in these groups. Don’t get me wrong– I’m eternally grateful for the love and support many of these people show me and others with spina bifida. I’ve forged many great friendships with parents of children with SB, and with adults with SB, all over the world.

I guess that I don’t feel the need to share everything about the spina bifida part of my life with them. Heck, they majored in this, as did I!

But I want to share it with you. 

And I want to be able to share honestly and openly with you– without any of the following responses that I’m dreading right now, and that I always dread:

1. Pity. Please, absolutely NO “I’m sorry you have spina bifida” talk. It makes me feel as if you believe that living with spina bifida is pitiful and shameful. And trust me– I don’t need that. 

2. Discomfort, awkwardness, squeamishness. I’m sorry if I slip up during lunch and casually mention I have to go cath. Usually I say “pee,” but occasionally I will slip up and make some allusion to the fact that I use a plastic tube to urinate. Obviously, I overlooked the fact that you are not as used to this as I am, and any remark that you make along the lines of “ew” and the like will only make you come across as a jerk. Please, grow up and get over yourself. Call me when your pee is prettier than mine.

3. Holy talk. You know what I mean here. I consider myself to be a religious/spiritual person with my own faith and personal relationship with the Creator. And if you say you’ll pray for me, I’ll gladly accept your prayers, good vibes, etc. But please don’t attempt to make yourself feel better about my ailment by saying that “everything happens for a reason.” It’ll upset me, and will only serve to make me wonder why this “everything” doesn’t seem to be happening to you. 

Simply put– I don’t expect everyone in my life to relate to my struggles, anymore than you might expect me to relate to all of yours. If you can’t relate to the situation, that’s perfectly fine. I think admitting you can’t understand what it’s like, is actually the first step towards putting yourself in another person’s shoes.

The ugly truth about life is that permanent chronic conditions like spina bifida can’t be cured, anymore than you can bring your deceased loved one back from the dead or force the cast of F•R•I•E•N•D•S to do a reunion.

It’s just not going to happen like that.

We all go through difficult, challenging, brutal stuff. So from here on out, I promise to try to level with you. I’ll try to be honest.

Are you willing to try to listen?


“Don’t walk behind me; I may not lead. Don’t walk in front of me; I may not follow. Just walk beside me and be my friend.”   –Albert Camus 


The 2014 SoftRock Holiday Giving Gala #SRGiving

This past Saturday, I was invited by a new friend to attend the SoftRock Holiday Giving Gala at Tier Nightclub in Downtown Orlando! Samantha Weaver is senior writer for SoftRock, a media company that designs software and multimedia for businesses.

The premise of their Giving Gala was to invite guests– in exchange for a pledge to give time in volunteer hours for any charitable organization.

I love that concept. 

Indeed, for me, there is nothing better than encouraging employees to support a worthy cause, or even several!

So, when Samantha invited me to this event, I simply couldn’t resist. 😉

Mami was my plus-one at the gala, and we got the star treatment that night! We were picked up promptly by a car service and taken to Tier Nightclub, a trendy spot in Downtown Orlando.


I was really impressed to see so many plush, comfy sofas in a club setting! I wasn’t expecting that.


SamanthaWeaver_and_meWith Samantha Weaver, Senior Writer for SoftRock

I enjoyed drinks and tasty appetizers with Mami, and did a lot of people-watching!


Mami and me. :)


Caught live-Tweeting and instagramming! 
It was great to run into several friends– some of them from way back! 
With Lynn Hoppes, who now works with SoftRock, and who I met as Sports Editor when I was interning at Orlando Sentinel in college. 
With my friend, Jen Vargas, of Central Florida Top 5
With the ladies! Samantha, Jen, me, and Jeanette Scott of J’s Everyday Fashion
With Alec Difrawi, Founder & CEO of SoftRock. 

I’m so glad I was invited out to the party, and even more excited to start the year off by taking a pledge to volunteer in my community!

Thanks, Samantha– and thanks SoftRock!

Laurita :)


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.




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




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 ♥

It Takes a Village

That is, without a doubt, one of my favorite, perhaps overused, sayings. But, I’m a firm believer in its veracity.

I don’t think anyone was put on this Earth to “go it alone,” at least not entirely. If you reach out far enough, there is always someone there.

There has always been someone there for me– many people, in fact. 

For several years, one of those people has been Tracy Jensen. The mother of five beautiful boys, her youngest, Kumaka, has spina bifida. She and I connected on Facebook a long time ago, and since then, her stories about Kumaka’s strength, resilience and overall sense of adventure and humor have encouraged me during difficult times.

Through all of their challenges, Tracy has remained an exceptional mother, as well as a great encouragement to many families in the spina bifida community.

Many parents might raise an eyebrow and think, sympathetically, (and frankly, a little condescendingly), “I don’t know how Tracy does it.” And I’d be lying if I told you the thought hasn’t crossed my own mind more than once. What is most amazing about Tracy and her family is that they always take the time to support their community and involve their kids in great things. Kumaka is currently following in the tire tracks of the notorious Aaron Fotheringham, a WCMX (extreme sports for wheelchair users) pioneer and truly, the resident badass of the spina bifida community. 

While living on the west coast, Tracy and Kumaka also support and encourage Misty Díaz, a runner who has spina bifida and is raising funds to help kids and youth with disabilities compete in sporting events.

So you see, this is a very mutually nurturing community, and our paths often overlap. Now Tracy, the woman who does so much for all our community, needs our help. 

She has reached out– this time, across the globe– and fallen in love with a little girl named Sofi.

Sofi is four years old, lives in Eastern Europe, and she has spina bifida.

During the first two years of her life, Sofi was only bottle-fed and was rarely let out of her crib. As a result, her physical impairments are severe, as she has been deprived of achieving several critical milestones.


Sofi Rose

Still, her sunny disposition are encouraging signs that she will continue to improve, and she now lives in another orphanage, where she is thriving.

But, she needs a family, and a permanent, loving, safe home. And so, Tracy and her family are heeding this little girl’s call for help. They’ve decided to adopt Sofi, and bring her home to the U.S., where they will take excellent care of her, as they have for Kumaka and Sofi’s four other big brothers.

Since August 2012, the Jensen family has been tirelessly raising funds to offset all of the costs associated with Sofi’s adoption– the court fees, travel documents, airfare, hotel stays…the list goes on and on. Indeed, the expenses are astronomical.

The moment that they get to carry Sofi into their home will be priceless. You can’t quantify the value of a family’s love

This isn’t the first time I’ve shared my thoughts and heartache over orphaned children overseas who are living with spina bifida. All of the challenges that children face in an orphanage environment are multiplied many times over by the severity of the child’s condition.

In Sofi’s case, we know the sky will be the limit for her– once she comes home. 

In a classic race-against-time, the Jensens have been presented with the possibility of having her home with them for Christmas, but they can’t do this without our support. 

Please take a moment to visit Tracy’s donation site for Sofi and commit to giving $5, $10, $20, $25– any amount will help, and it all adds up. 

If you can afford that latte (ironic, since I’m typing this at my local Starbucks!), you can afford to help bring Sofi home. 

In Tracy’s own words, “We may be on this journey to adoption because we feel led to bring Sofi home, but you all are on our journey too…you are all part of the steps to bring our girl home.”

I feel privilege to be part of the “village” that wants to help bring Sofi home. From the orphanages of Eastern Europe, to the creature comforts of her new West Coast home, it’ll be quite the journey for little Sofi, but luckily, she has all of us to guide her steps along the way.



It may take a village to raise a child, but it’ll take an even bigger village… to bring her home for good. 


Laurita ♥

Turning My Most Painful Memory Into Triumph


“Yes, the past can hurt, but the way I see it, you either run from it, or learn from it.”
—Rafiki, “The Lion King”

School should have been one of the happiest periods of my life. Instead, it was the source of my deepest pain—even now as an adult. I remember the taunts and jeers in the cafeteria. ”Cripple!” “Retard!” I remember trying to keep up with the others in P.E.

“Run, Forrest, run!”

In high school, I was accepted into the theatre magnet program at my school, a big deal for me. I was passionate about acting. For a while, I was part of a group of kids who were different—creative, outgoing, often misunderstood. We all got along. My ever-doting parents always welcomed all my classmates at my birthday parties. In fact, I became “known” for my house parties.

But by the time I was planning my Sweet 16 party my social life had taken a drastic downturn. I made a list of all the upperclassmen in the hopes that, by inviting them to my party, they’d accept me. A week later, no one would look me in the eye or talk to me.

I was devastated.

To read more, click here.

I’ll Show You My Reasons


Author’s Note: This post was written in October 2013. Over a year later, I still feel this way. Thank God Nicholas made a full recovery from his injuries described below. But his and my family– as well as so many other families– continue to wait for hope. We wait for awareness. 



October is Spina Bifida Awareness Month. We’ve just made it past the half-way mark, and already I’m feeling like a broken record. 

I’m angry. I’m sad. I’m frustrated. I feel helpless. And all because it’s October. 

October is Spina Bifida Awareness Month. 

It’s also Everything Else Month. 

I’m not angry at the other causes– breast cancer, down syndrome, domestic violence– how could I be? They are valid, serious causes, every bit as worthy and deserving as spina bifida of being recognized and honored and supported, not just in October, but every month. 

I’m angry because the excuse that many people give to not support the Spina Bifida Cause is because they are busy supporting these other causes. 

I’m angry because they don’t get it

I’m angry because they believe spina bifida is less serious. Less worthy. Less important. 

On Monday, I visited Nicholas in the hospital. Nicholas is an eight-year-old boy with spina bifida and hydrocephalus. 

Last week, he was the victim of an unexpected, traumatic and heartbreaking incident when he was attacked in a park. While I won’t go into the details here, because it’s a situation that has caused his family– and all of their friends and loved ones– so much pain, suffice it to say he suffered two concussions and began having frequent seizures. 

These seizures could be enough to cause him irreversible brain damage. He already has developmental and speech delays because of the many neurosurgeries he’s had. 

How is Nicholas doing now? Thank God, he’s out of the hospital, as of last night. I’ve been in frequent contact with his mom, Cheryl, who is my very dear friend and who slept at his side every night in the hospital. According to her, his seizures are now under control, but only time will tell if he will get back all of his cognitive functions.

He’s not himself right now, she told me. Indeed, when I went to see him on Monday, the usually cheerful, calm eight-year-old was impatient– he even walked right out of the hospital room at one point, determined to visit the playroom. When he didn’t get his way, he growled and screamed unintelligibly, clearly frustrated.

Cheryl noted that he never behaves this way. She misses her sweet little Angel. 

There was one moment that stood out in a positive way for all of us, when a young hospital volunteer stopped by to perform magic tricks.

Nicholas lit up. His mother, and all of us that were in the room with them, watched in amazement as Nicholas even verbalized what he was feeling. He wanted to know “how he did that” when he demonstrated a trick. He walked right over to the young man and did not take his eyes off him the entire time. 

Watching him was, indeed, magic. 

Of course, many causes will demand your attention– this month, and every month. All of these are important, and we should take the time to learn as much as we can to help those we love– and ourselves– prevent illnesses and other devastating circumstances.

But, to a child living with spina bifida– and to the family that cares for him or her– often, there is no frame of reference outside of spina bifida. Sometimes, there is no escaping the uncertainty and pain that comes from knowing that someone you love is suffering. 

There are plenty of moments, like the one we witnessed with Nicholas, when you get a glimpse of hope, of recovery, of that return to the simple joys of childhood as it should be.


Happier times. Celebrating my birthday 2 years ago with Nicholas and his family– dad Jerran, mom Cheryl, and big brother Daniel.

But spina bifida complicates things. They can turn even the most common illnesses and injuries into a nightmare. Sometimes, we lose hope. 

During those moments, we try to choose to hold on to the moments we’ve enjoyed– the moments that make us laugh out loud, even through tears. The trivial moments. Sometimes one trivial moment can matter more than 1,000 serious moments.

But, my anger remains unassuaged. People still dare to question why this matters to me. 

I can only think of one good reason: 

Because I’ve been there, too. 

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Just days after I was born. The battle to survive and thrive with spina bifida begins almost immediately after birth for most of us.


BlogHer was very gracious in allowing me to share my story with their many followers! Please read, comment, share my post, and let BlogHer know that we need more stories about spina bifida awareness. 



Health, Special Needs & Social Change at LATISM ’13: #InspireCare

Disclosure: Johnson & Johnson was one of the fabulous sponsors of the LATISM ’13 conference. I was not compensated for writing this post. All views and opinions are my own. 


Even though, lately, it seems I’m busier than ever, I’m still gradually processing everything I learned and experienced at LATISM ’13 last month. Indeed, I feel LATISM ’13 was a huge catalyst for all of the positive changes I’m seeing in my life right now. I’m also learning to let go of some things, because if I don’t let go, I can’t embrace the amazing things that are heading my way! 


LATISM special needs panel

(From left to right):  Lisa Quiñones-Fontánez, Eliana Tardío, me, Christina McGeough, and Eileen Carter-Campos during the Beyond Chronic Illness & Special Needs: Life Beyond Your Diagnosis panel. 


One of the greatest opportunities I had at the conference was re-connecting with Johnson & Johnson, which has remained a faithful sponsor of LATISM for as long as I’ve been involved with the organization, at least. This year, there was a big focus on the health track of the conference, and Johnson & Johnson encouraged us to share our own, personal stories on Twitter using the hashtag #InspireCare. 



Ana_Flores_and_meBeing interviewed in the Johnson & Johnson Suite by the fabulous Ana Flores. Love her!



During LATISM ’13, Johnson & Johnson kept posing this question to attendees: What inspires you to care?

I think you’ve all known me for quite some time now to know at least a partial answer to this question, but I will still share with you all how I respond to this query. Below is my interview in the Johnson & Johnson Suite at the Waldorf-Astoria, with the lovely Ana Flores of Latina Bloggers Connect. Thanks so much, amiga, for interviewing me!



On the last day of the conference, I was given yet another opportunity to share what inspires me to care– this time, by speaking on the panel, “Beyond Chronic Illness & Special Needs: Life Beyond Your Diagnosis.”

This informal (no slides!), yet engaging discussion was moderated by Eileen Carter-Campos of Mamiverse and Mommy Teaches, and my fellow panelists were Eliana Tardío of, Lisa Quiñones-Fontánez of, and Christina McGeough of the American Diabetes Association

I’ve spoken on several panels over the past few years, and even moderated one in April at Hispanicize. It’s always fun, energizing, and insightful. But I never could have anticipated just how emotionally-charged it would be. 

During our Q&A session, one mom of a young man with ADHD spoke up, and shared her story. We were all so grateful to her for participating!

Then, the unimaginable happened. After our session wrapped up, and we were exchanging business cards with session attendees, I was approached by a medical doctor and a group of her medical students– all female, nearly all Latinas. They were incredibly interested in my efforts to raise awareness of spina bifida, and I seized the opportunity to share specific statistics and facts with them, as well as compelling stories I’ve been told. 

Some lingered even longer to chat with me, and I’ll never forget the student who asked me ever-so-humbly for advice. She has a sister with severe disabilities, and wanted my opinion on how to interact with her patients without coming off as “overprotective.” I assured her that her personal experience with her little sister was an asset, not a weakness. There are so many doctors who do a fabulous job of identifying with their patients, but very few can empathize like she can. I would tell her, right now, that the very fact that she chose to approach me and wanted that “patient’s perspective” shows that she is far more capable of connecting with her future patients than she gives herself credit for. I hope I connect with her again. :) 

Whenever I share about spina bifida at an event, or even informally, one-on-one with someone else, I think of the moms. I think of all of you who have written to me with your worries, fears, concerns, anger, hope, pride, guilt, triumphs. Indeed, while I will only ever see spina bifida from a first-person perspective, you’ve all challenged me to see things from the mother’s perspective, which is often one of uncertainty.

You’ve inspired me to care. 




My fellow panel ladies and I, posing with our new amigas– these are our future healthcare providers!



So, ladies– all the “special needs mamas” out there– this one’s for you. Thanks for the continued inspiration. And also– to the doctors, nurses, therapists, and health care providers who help reassure moms and dads when the most important thing— the health of their child– is out of their hands.





Laurita ♥