Holdin' Out for a Hero

Just this past weekend, I wrote a blog post about an issue that has haunted me my entire life. I wrote it in maybe 15 minutes flat– and then hesitated to press “publish.”

Once I read it to Mami (who is my copy editor and biggest cheerleader!), she convinced me to publish it. My hands felt clammy as I anxiously anticipated the first comments.

I was immediately uplifted at the first few supportive Tweets, comments on my blog, and comments on Facebook.

Some of the people who responded surprised me– not that I don’t expect the absolute best from mt friends, but some of them are people who I just recently met for the first time in person (LATISM ’11 peeps, I’m talking to you!)

Overall, the biggest thing that stood out to me as I read everyone’s reactions was this:

There is a desperate need for understanding and community among people with spina bifida. 

Some of the members of the SB community! (We also all happen to be members of the Latino community.)

This “community” shouldn’t be limited exclusively to people with spina bifida and their awesome families (although they are undoubtedly the most critical component!). Rather, this community should extend to include other caregivers such as nurses, doctors, social workers, and educators, and friends, and mentors, and supporters.

One of my favorite families, the Freestones. Family-- especially parents and siblings-- in an essential part of our community. They should be included in the conversation.

You are not part of my community only if you have spina bifida, as this isn’t the only “community” I interact with. So it’s very important to reach out to our supporters and thank them for all they do for us. It is with this thought in mind that I have created an online forum, the goals being to strengthen and continue to build this community, and to offer moral support to one another. And, yes, to have fun! I’d like to invite each of you to post in our initial thread that I started: “Introduce Yourself!” I want to get to know who’s reading this blog and I want to know what makes you tick.

I will be creating different topics that I think would make for interesting discussions. I’m also really working hard to control spam posts, as the plug-in I installed to get rid of spam doesn’t seem to work. I may have to go with something else.

As always, if you have any specific questions you would like to ask me, please do not hesitate to E-mail me: laurita.tellado@gmail.com.

With that, I leave you to go post your introductions. Let’s make this a community one we can be very proud of!

Love,

Laurita ♥

Everyone– philosophers, religious leaders, teachers, doctors, parents, grandparents– is always warning others to make the most of their lives. They caution against regret, and say that at the end of your life, you’ll regret the things you didn’t do, more than the things you did. 

At 25, I feel blessed to say that there isn’t much that I’ve done that I completely and absolutely regret. Yes, there are things that I’ve said or done that somehow hurt others, and I still carry that pain with me.

But I learned from it, didn’t I?

I was hurt, too. I carried around a great weight with me for so many years…the burden of being teased, bullied and humiliated for who I was– a little girl with spina bifida.

Little did those kids know that this wasn’t all of me. Yes, God gave me spina bifida, but He also gave me a powerful tool– His grace, which in me manifested itself into a desire to reach out to others, through writing, speaking, through communicating. 

Where would I be without words? I hardly know. I can’t imagine what I’d do if I weren’t able to verbally or literally express myself!

But more importantly: I can’t imagine where I’d be without my HEROES. 

Today, I read a post on the Facebook page of one of my now dearest friends. He was urging others to support a great cause. Not knowing that this also related to an aspect of spina bifida that I haven’t yet blogged about– I began to cry. While I’ll posit that I have definitely grown tremendously over the past year, I was hit by the harsh realization that there are still areas of my life– mostly dealing with spina bifida– that I have yet to make my peace with. I know that peace will come eventually.

But what has made the biggest impact on my life is that many of you have come to know me only through what I’ve written. That actually means a lot to me because I feel that you’ve gotten to know me for me– without the added filter of prejudices and misconceptions that inevitably come into play when you meet me in person. You’ve given me the chance to show you who I really am, and for that I will always be grateful!

Someday I will write about other aspects of my life with spina bifida that I have chosen to bury deep. Until then, I will make the conscious decision to open up to at least one other person about the self-called “imperfections,” those traits for which I always fear I’ll be rejected.

I should really give the people who love me more credit. I should really give me more credit.

So until I find the words (ha!) to express my own overwhelmed, confused, and elated emotional state, I’d like to share with you words written by my friend, musical artist Spencer Day:

After receiving my award for Best Latin@ Health Blogger at the LATISM 2011 Awards Gala. Definitely one of the highest points of my life so far!

From the moment you wake you just count your mistakes
Till you fall out of bed and you crawl down the hall
You feel so contrite, you can’t stand the sight
Of the sunlight, the city and all

Now you’re 25, it’s the best year of your life
But you can’t look in the direction of your own reflection
What you see cuts like a knife (and you know)

Everything is changing, and you just can’t take it
Think you’re going crazy, you’re not gonna make it

All your little white lies are beginning to rise
And you thought they were buried (buried)
Dispense wit the pretense, your false innocence
Is now unnecessary
And it’s scary

When you’re 25, it’s the best damn year of your life.

“25″ by Spencer Day

Thanks to everyone who has made this the best damn year of my life– so far!

Love,

Laurita♥

Okay, so I know you are all probably waiting around for a much-needed update with details about what I did for 4 days in Chicago! But I’ve always been a believer in the adage “A picture’s worth a thousand words.” Well, how about a few of those words, set to música?

There were plenty of photographers to go around during the Latinos in Social Media 2011 (LATISM ’11) conference! And believe you me, there was no shortage of music.

So here’s a little something I’ve been working on to get you started. I promise you, more details are coming of all the awesome connections I made, and of the million times I plugged the spina bifida cause! But for now, perhaps, a few of my memories will suffice.

This project is very lovingly dedicated to all of the LATISM ’11 attendees, my fellow staff/volunteers, as well as my fellow chapter directors, the sponsors, and everyone and everything that made LATISM ’11 so incredibly beautiful. El honor fue mío. (“The honor was mine.”)

Love,

Laurita ♥

Today, thousands, perhaps millions of children, will go from house to house in search of sweets and perhaps a fright or two.

Also, today, as October and Spina Bifida Awareness Month draws to a close, an average of eight babies with spina bifida will be welcomed.

Their parents will undoubtedly face fear, uncertainty, denial, anger, and sadness. What most of those parents probably don’t realize right now is that they will also face love, hope, encouragement, resilience, patience, and even humor.

Like most parents, they will have really horrible days and really amazing days. They’ll worry about both the trivial as well as the critical in fairly equal amounts.

Besides dealing with shunt malfunctions and being invited to Spina Bifida Association meetings and holiday parties, they will also deal with the flu or common cold, and will be invited to PTA meetings and neighbors’ birthday parties.

Most likely, their children will have even more opportunities to meet people as they will be part of an additional circle, the spina bifida community that is proud and strong.

Many of the milestones might be the same as for any other child– that moment when they first open their eyes, their first words, maybe even their first steps, the first day of school, that college acceptance letter, the first day of work.

Sure, there will be additional challenges that most kids might not experience, but I guarantee that it will only make that family stronger.

And yes– there are the surgeries, hospital stays, medical bills and therapy sessions to keep track of, but for now, I hope, you are focusing on finishing up that fairy princess or pirate costume, and not dwelling on the negative.

On Saturday, hundreds of people gathered in Blue Jacket Park in Orlando, despite the dismal weather which at times seemed like it would never let up. I was surprised at how many parents brought their infants along even with the risky climate. But then I shook my head and reminded myself that most of these kids had already weathered greater storms– and persevered.

I saw that in the beaming faces of children I stopped to wave and coo at. I saw that in the groups that were proudly showing their team spirit with custom T-shirts or Halloween costumes.

So to keep the encouragement and motivation going, I want to take the time to thank each and everyone of you who helped by donating money, by promoting this on your social platforms, and for simply “being there” for moral support.

Today I found out that the Walk-N-Roll site will remain active through November! That means that all who have wanted to donate but are waiting for their next paycheck, or for some reason missed the opportunity can still do so! I’m counting on you all. Please donate as little as $5 or any higher amount in support of families affected by spina bifida in 22 counties in Florida.

A very special thanks to all of the amazing bloggers, public relations professionals, and social media mavens who organized, promoted and participated in the Walk-N-Roll for Spina Bifida Blog Carnival. The creative and organizational genius of Angelica, Pérez, Ph.D, Chantilly Patiño, and Midy Aponte were paramount to making this cyber-event a success!

So to bring this month finally to a close, I’d like to say to the individuals with spina bifida, and to their parents and caretakers, having spina bifida, like watching a Halloween movie, can often be scary, but you get through it and take comfort in the company of others.

Indeed, when you are a part of the spina bifida community, you never walk alone.

Love,

Laurita ♥

This past week has been– how can I put it?

An all-out caffeine high.

With the Central Florida Walk-N-Roll for Spina Bifida just days away, my stress level is definitely going up and I can feel myself beating the clock to put up last-minute flyers and posters, promote it on Facebook and Twitter ad nauseam, and falling short ofbegging people to please, pretty please, register if they’re going to the event!

In my two-plus years of being a blogger and full-time activist, even when one of those years was spent as a college student, I’ve never known greater stress.

Or, a greater adrenaline rush. In a very strange way, this having-to-do-20-things-at-once-OMG-my-mind-is-gonna-implode feeling is perhaps the best thing that’s ever happened to me. It’s encouraged me to stay focused, even when there are several things going on at once, and it’s really motivated me to stay on top of my faith. By that I mean, not allowing myself to lose faith when things don’t go exactly as I had planned.

Today is a case in point. I was supposed to be interviewed this morning by Local 6 News, for their segment, “Making a Difference.” I had been looking forward to this for a while, so much so, that I actually showed up at Valencia West Campus (where I had agreed to meet the crew) a whole week early! After supposedly being “stood up,” I read over the E-mail again and realized I had the wrong date. Whoops.

Today I showed up, all neatly coiffed and decked out in my Spina Bifida Association of Central Florida T-shirt– only to get a text saying that they had to cancel because of “breaking news.” My reaction was along the lines of… “This is the most commonly occurring birth defect in the U.S. This is  breaking news!”

Sure, I was upset for a while, fuming even, but it didn’t take me too long to realize that God must have some purpose for making me reschedule for Friday (fingers crossed, people).

While I didn’t get my brief moment of local fame today, this day is also very meaningful to me for another reason related to this cause. In honor of the Walk-N-Roll, my bloguera friends Angelica Pérez, Chantilly Patiño and Midy Aponte have teamed up to organize an online event that is the first of its kind: The Walk-N-Roll for Spina Bifida Blog Carnival Fundraiser.

Happening right now, bloggers all around the country (perhaps even the world?) are uploading this post today in solidarity with The Cause. My amigas have been hard at work, organizing an incredible PR campaign for this event. (Check out Hispanic PR Newswire’s write-up for the event!)

These hermanas have put the time and efforts that they are paid to put to use at their day jobs, into this initiative that is pro-bono, and only for The Cause. I could dedicate every single blog post for the next ten years to these fantastic ladies, and it wouldn’t even begin to compensate for all they are doing!

So, here’s my little grain of sand. I’m listing all the organizations involved in making this dream of awareness a reality. I hope you’ll take a few moments to visit each of the diverse sites and learn what they stand for:

Being Latino

Blogs by Latinas

Hispanicize 

Latina Bloggers Connect 

Latina Mom Bloggers

Latinos in Social Media– Español   or English

Multicultural Familia 

New Latina

The Sánchez Ricardo Agency

SoLatina

What has followed these past few weeks, from the moment Angelica E-mailed me on September 13th with the subject line “Very interesting idea!” to today, as personal blogs and corporate Web sites continue to post their entries, is an outpouring of moral support unlike any I recall experiencing in my life.

When I set out to work on this with all these organizations, Mami mentioned that we would be “unleashing the power of social media,” but even that seems like a vast understatement given the results of this initiative!

Here’s what I learned today: black, white, Latino, Asian, Native American, we can all come together to serve the greater good. It was a lesson I needed to see in action today, given my earlier disheartening event.

It made me think of this particular verse in the Bible:

‘”For I know the plans I have for you,’ declares the LORD, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’”   –Jeremiah 29:11

And now, to all of you who have been supporting me, whether it be this month, last month, or who will be there next week– I dedicate this music video (and of course, I mean no copyright infringement!)

Keep spreading awareness…and thereby renewing my HOPE.

Love,

Laurita ♥

October is already at its mid-point, and I feel proud that a lot has been accomplished during the first half of Spina Bifida Awareness Month. I’m beginning to feel the exhaustion of an intense two weeks, and I’m tempted to rest on the premise of being burned out.

But I don’t have that luxury. What’s more, the 166,000 Americans living with spina bifida don’t have that luxury. Yesterday was a particularly trying day. All three California Pizza Kitchen locations held an all-day fundraiser for my Walk-N-Roll for Spina Bifida team. Here’s the catch: people needed to bring in a flyer in order for the SBACFL to get 20 percent of the proceeds, and I had a short amount of time to get the flyer in everyone’s hands! Needless to say, it was an intense week.

Yesterday afternoon, after being told by a security officer at Mall at Millenia that Mami and I weren’t allowed to distribute flyers anywhere on the premises, we both left the mall feeling angry and dejected, even defeated. But we went instead to the Florida Mall, another CPK location, and experienced great success in handing out flyers to enthusiastic, even grateful, recipients. To say that it was a rewarding experience would be a gross understatement. We left the Florida Mall feeling renewed hope and courage.

Eating for The Cause at California Pizza Kitchen!

One curveball that I didn’t expect to be thrown at me at all this month (of all months!) came in the form of concerns about my health. I’m supposed to be having an MRI of my shunt and spine every year to check that the shunt is working, and that there are no signs of issues with my spine (like tethered cord). Well, it had been well over two years since I had last seen my neurosurgeon and I hadn’t had these tests done in all this time. It was just one of those routine things that got placed on the backburner, due in great part (ironically) to Holdin’ Out for a Hero. I didn’t find the time for it until now.

For the past three or four weeks, I have been experiencing some sporadic headaches in my shunt area (on the left side of my head) and also some intense lower back pain. I worried that the herniated disc my neurosurgeon had warned me about years ago was beginning to take its toll on me and that I might need surgery to remove it. So, I put all my other responsibilities on hold for a brief moment and scheduled an MRI and a follow-up appointment with my doctor.

The MRI appointment itself was grueling. I first had to get registered at the office and then proceed to wait– for an awfully loooooong time. For me, boredom often triggers my creativity, so I made a video while in the waiting area of the hospital.

After I made the video, edited and posted it even, I still had to wait a while. But that wasn’t the worst part. The MRI, although classified as “open,” took about an hour and 45 minutes to complete! They took me out of the tube maybe every 30 minutes or so, but it was nerve-racking and annoying. Worst of all– my back pain was more intense than it had ever been while lying flat on metal.

On Thursday I got the results, and they were all good. My shunt is working, my back is okay, and I still have the herniated disc, which I dread, but the neurosurgeon doesn’t want to touch that unless it causes any severe problems. So now I’m back to raising hell and raising money for a great cause!

P.A. Tim takes my vital signs during my neurosurgeon's appointment.

Neuro appointments aren't all that bad.

Dr. Gegg feels my shunt for any signs of trouble...

...and once again, I've tricked him into giving me a head massage.

Don’t wait any longer to make a contribution to Team Holdin’ Out for a Hero. The Spina Bifida Association of Central Florida desperately needs your financial support, and even $5 or $10 can truly make a difference!

Two friends of mine, Cheryl Freestone and Amanda Kern, had their little boys in the hospital recently, both for multiple shunt surgeries. It breaks my heart that there isn’t already a better technology to help them stay out of the operating room.

But, I’ve learned from my new friends that you have to play the hand you’re dealt in life. Check out Amanda Kern’s photography page to see for yourself how some of my favorite buddies continue to beat the odds in the fight for spina bifida awareness.

I think you’ll find a warrior or two…

©Amanda Kern Photography

Laurita

Amidst all my fundraising efforts for the Walk-N-Roll for Spina Bifida and promoting October as Spina Bifida Awareness Month, some very persistent and somewhat concerning neurological symptoms are distracting me.

I finally made a follow-up appointment with my neurosurgeon to address these concerns, but first I need to get an MRI of my entire spine, my head (where the shunt lives), and a series of X-rays, I’m pretty sure.

Once you get past all the red tape of filling out paperwork and answering questions, you have time to sit in the waiting room and worry about what could go wrong and what else could possibly be causing these symptoms. So instead, I’m coping with my worries by doing the only thing I know to do in this situation– blogging.

I also made a vlog during my anticipation of the MRI. Check it out and share, and let’s pray that the next generation doesn’t have to go through such exhausting tests for hydrocephalus!

–Laurita

October is an eerie month, filled with monsters, mummies, and the macabre. But while the occasional witch or skeleton might freak you out, one must concede that there are indeed more frightening things– like finding out your child will be born with spina bifida.

And yet, each day in the U.S., an average of eight families welcome a child with spina bifida into the world. Annually, an estimated 1,500 infants are born with spina bifida each year in the U.S.

I was born with spina bifida nearly two and a half decades ago. The diagnosis came as a total shock to my family, along with an entire set of secondary complications. I was also born with hydrocephalus, or “water on the brain.” During the first ten years of my life, it seemed I was in the hospital every other week with a bladder infection or shunt malfunction. I’d be lying if I said this wasn’t really scary at times.

But then, at age ten, I discovered a fantastic way to defeat my worst fears– knowledge. I vowed I would educate myself and read up on the condition that, up until that point, seemed to be taking over my life. Much like a child who imagines a ghost is in his closet, grabs a flashlight and realizes it’s only an old coat, I had come to the realization that, when you take the time to learn about something, no matter how terrifying it may seem at first, everything is less scary in the light of knowledge.

According to the Spina Bifida Association of America, “spina bifida remains the most commonly occurring birth defect in this country.” Just how common is it overall? PubMed Health, the Web site of the U.S. National Library of Medicine, reported in March of this year: “Myelomeningocele [the most severe form of spina bifida] may affect as many as 1 out of every 800 infants.”

As a 21-year member of the Spina Bifida Association of Central Florida, I’m doing my part to shed light on this condition by raising money for the Walk-N-Roll for Spina Bifida. When my parents and I moved from Puerto Rico to Orlando, Florida in search of better educational and healthcare opportunities for me in 1990, we found a support system away from our family and homeland in joining the SBACFL. My personal search for a public spokesperson for the spina bifida cause, as well as my work as a current member of the SBACFL board of directors, have helped me find my true purpose– galvanizing as many people as possible to support the spina bifida community.

So, in the spirit of shedding light on a little-known condition, and in honor of October, which is Spina Bifida Awareness Month, here are some statistics about spina bifida that might spook you a bit:

• Spina bifida is more common than muscular dystrophy, multiple sclerosis, and cystic fibrosis combined.

• Latinos have the highest incidence of spina bifida out of all the ethnic groups.

• Ireland is the country with the highest incidence of spina bifida in the world.

• Doctors recommend that every woman of childbearing age consume 400 micrograms of folic acid daily to help prevent neural tube defects like spina bifida up to 70 percent of the time. In spite of this, there are currently an estimated 166,000people in the U.S. living with spina bifida– up from just 76,000 just last year. 

I will be raising money online for Team Holdin’ Out for a Hero until October 29th, when we have our Walk-N-Roll event. Donations can be as small as $5 or as large as $50,000. (Yes, I do like the $50,000 better!) Every cent counts! Every cent of every dollar will go towards supporting families affected by spina bifida in 22 counties in and around the Central Florida region and supporting educational and awareness efforts.

Yes, to the new parent, or even to the already-grown individual, spina bifida can seem like a scary thing to deal with. But there’s a power in numbers and a strength in awareness– a strength that gives us the courage to open the closet, shine the light in the ghost’s face, and reduce it to nothing but an old coat.

Thank you for helping me conquer my biggest fear– ignorance of spina bifida.