I Don’t Always Have Spina Bifida

 

1398934_10100702767825013_1036425815_o

Photo courtesy Macbeth Photography: MacbethPhoto.com
 My life consists of many awesome events…and many funny photos! 

 

 

Yes, I know. That’s quite the inflammatory title.

This is a topic I’ve been reflecting on for a long time. I’ve read many articles and posts on both sides of this argument. I’ve read posts from adults with spina bifida, and parents of children with spina bifida, who say that spina bifida doesn’t define them. 

I’ve also seen the other side of the coin, from parents who say that, indeed, spina bifida defines their children. 

One of the most interesting arguments I’ve heard for the latter point of view is from my friend, Mary Evelyn. Even when I don’t agree with her perspective 100 percent, she always manages to make a very sound, introspective and rational case. I can’t help but agree with her on this– to a certain degree. 

To be sure, even now, in writing this, I am on the fence on this subject.

Mary Evelyn, and all of those who agree with her, is right. To a certain extent, spina bifida will always define me and my life. It’s an integral part of who and what I am. I will never be able to shrug off the years, nay, decades, of how spina bifida has molded me into the person I am. The adult I am. 

But there is another side of this coin, I ardently believe, that deserves equal inspection. There are moments, even days, when I don’t feel like I have spina bifida. 

Do you know what I’m talking about? Whether you have spina bifida or not, perhaps you can relate.

I’m talking about those moments when I’m getting ready to go out, and I’m putting the finishing touches on my outfit– my earrings, my eyeliner, etc. I glance at myself in the full-length mirror, and I see…a beautiful woman. Not “a woman with spina bifida.” Not “a woman who has had several brain surgeries.” Not “a woman who is now struggling with lower back pain on a daily basis.” Not “a woman who has to self-cath every three hours in order to live.”

Just…a beautiful woman. 

When I’m out with my closest girlfriends, and having a glass of sangria or a cup of coffee, it’s not the woman with spina bifida they are out with. It’s the blogger, the social media consultant, the coffeeholic (more often than not), the grammar nazi who is constantly editing other people’s words as well as her own (I seriously can’t help it!).

 

Grammar

 

Other times, it’s the flirt (sometimes) who wants to get that cute server’s attention, or the wise counselor, when a girlfriend is struggling with a problem (I’m really obsessed with analyzing everyone’s problems, including my own!), or the goofball.

 

Goats*That awkward moment* at Disney when you can’t figure out why the goats love you so much…and later on you find the bag of edamame in your purse. -_-

 

 

 

In fact, when I’m among my closest friends, spina bifida is a topic that is introduced very rarely. I think, by this point, most of them acknowledge it in passing, the way you would acknowledge a person’s eye or hair color, or stature.

I’m also just as protective of my friends as they are of me…sometimes I’m the “older sister,” and sometimes they are. It just depends on the situation.

That isn’t to say that I feel ashamed of having spina bifida…but it does make me uncomfortable to be around people who barely know me and already feel the need to pepper me with a dozen questions I might not feel like answering at a networking event. Sometimes, I’ve made an unconscious decision to remove that particular hat for the evening…and that’s okay. I feel entitled to that. 

I’ll always be an advocate for the spina bifida cause. That won’t change anytime soon, I’m pretty sure. I’m committed to it, because I understand it. 

But if I paused to dwell on spina bifida every day, every moment, every second when I’m getting dressed or putting on makeup, or picking out my earrings…well, then, I’d never make it out the door on time.

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.

Me_TownCar

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!


MamiAndMe

Mami and me. :)
 

Me_phone

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

 

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. 

 

cropped-Nicholas_and_me_cover.jpg

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.

DSC02970

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. 

Scan 112750001

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. 

Love,

Laurita

Top 5 Moments & Lessons at Top Blogueras Retreat 2013: UNited & UNdefeated

 

Laurita's Lumia_20130918_055

Above photo courtesy of Myrna Calderón.

 

 

I’m not going to lie to you. (You should know that by now!) The past few weeks for me have involved stress, tears, joy, excitement, more tears, and fears of developing a hernia. That’s usually what happens when I get sandwiched between conferences.

But I did it. I managed to attend the LATISM ’13 conference exactly a week after experiencing my first Hispana Leadership Summit in Orlando– and I also was honored to be invited to attend the second annual LATISM Top Blogueras Retreat in-between!

When it comes to attending conferences, my philosophy has evolved over time. I used to engage in the practice of grabbing an agenda first-thing, then circling and highlighting all of the sessions I wanted to attend.

I have long since abandoned that practice, because the idea of planning ahead for anything just seems ludicrous to me now. There’s the plan, and then there’s reality. 

The reality, I’ve learned, is the far better plan! 

Such was the recurring theme of my five nights in New York City. So, without further ado, I’m sharing some experiences and lessons I acquired during the first part of my adventure, The Top Blogueras Retreat and visit to the United Nations.

 

 

1. Eating out in New York with 100 of your hermanas is, in fact, material for a sit-com. 

During our first night together after all the Top Blogueras arrived, we headed over to Havana Central in Times Square– I think. Because I don’t think any of us knew for sure where we were going, LOL! We had to take taxis in very small groups, obviously, so when I got to the restaurant, I thought, “this isn’t too crowded. Maybe not everyone is here.”

About a half-hour later, our posse was still arriving– in droves. We took over the entire back section of the restaurant. It was awesome. 

Everyone is cramped at these long tables, everyone is talking at once, and it’s doubtful that any of us were actually listening to each other. We were just way too excited to all be together, and in one of Manhattan’s hottest restaurants, no less! 

That night, in my mind, was the perfect way to herald our arrival in New York City– Cuban food, drinks, girlfriends, and chatter. I wouldn’t have had it any other way.

 

 

2. Whether you attend the official conference sessions or not, you will get advice, you will get schooled, and you will get “tough love.” 

I barely had time, between stopping in the hallways to chat and catch up with amigas, to attend every session during the retreat. But, no worries! This event is all about Latina empowerment– and all about putting yourself and your needs first. For me, I needed those one-on-one chats, where the person I need to speak with has my full attention, and I can ask questions and we’re engaging each other. 

I got some sound, personalized advice from a financial guru right out in the hall (thanks, Francesca, for pulling me aside for that invaluable opportunity!), and he turned out to be an amazing man who is, himself, using his social power to effect positive change in the world. I’ll never forget my conversation with him.

During the retreat, one of my fellow health blogueras, Laura Termini, pulled me aside (that happened to me a lot last week!) and gave me some hard advice that I really needed to hear. She encouraged me to seize my potential and truly put it to use for the good of my mission. I can never thank her enough for lighting a fire under my feet! 😉

 

 

3. The United Nations is a global force for good that we all should be connecting and engaging with. They are awesome. 

When I heard we were getting an exclusive tour of the United Nations headquarters, I thought for sure it would be a stuffy, uninspired building with official seals stamped everywhere.

I could never have imagined it would be so beautiful, like visiting a museum or art gallery. The works of art that adorn these halls and majestic meeting rooms are an amazing testimony to the multicultural, multi-national mission that the U.N. promotes. Many works– ranging from paintings to murals, from tapestries to sculptures– have been donated by member nations. 

During an increasingly-hostile political climate in the U.S., which is seeing escalating vitriol towards people of different ethnic and cultural backgrounds, it was so reassuring to see firsthand how the U.N. embraces and promotes diversity, even in its décor.

 

4. International organizations, including the U.N., not only need to hear from us– they want to hear from us! 

During our briefing with officials that work with the U.N. at the Ford Foundation headquarters, we listened to speakers discuss the diverse issues that the U.N. is particularly concerned about– access to food, water, health care for all; education; sustainability, etc.

They repeatedly encouraged us to Tweet the U.N., especially during this week, which is the Social Good Summit and the U.N. is convening in New York City. The hashtag is #2030NOW, and the U.N. wants to motivate users to Tweet what they’d like to see happen by the year 2030.

I’m using my voice and my platform to make the public aware of how many Ob-Gyns are pressuring expectant parents of child with spina bifida or another condition, to abortThis is WRONG. When a parent makes an informed decision based on the perceived best interest of his/her family, that is one thing; but when a medical doctor entrusted with the care of mother and baby is insensitive to the vulnerable position that family is in, that is pure, unadulterated manipulation. Parents have the right to get impartial, objective but compassionate information from their health care providers about spina bifida, and all of their options. 

The fact that many medical doctors (Ob-Gyns, specifically, who will only deliver a baby and not go on to “treat” him/her) still push an aggressive agenda of eugenic abortion is a tragedy. It’s a tragedy, not from a pro-life or pro-choice perspective, but rather because the family is being deprived of knowing what’s possible for this child. 

So, if you agree that doctors coercing a family to abort is wrong, please join me in Tweeting and using the hashtag #2030Now to try to bring an end to eugenic abortions (in the U.S., too!) 

 

5. When you’re with familia, it doesn’t matter what you’re doing! You’ll have fun doing it. 

The Top Blogueras and the LATISM Sports Tennis Team were invited to the Billie Jean King USTA National Tennis Center (home of the U.S. Open!) to meet and play with a group of kids with Big Brothers, Big Sisters. Unfortunately, due to several buses breaking down, the children weren’t able to meet with us. :(

We were devastated that we all missed out on the opportunity to get together for some fun, but we did have some undisputed fun on the train ride over to the tennis center! 😉

Check out this short instagram video to see what I mean.

 

 

 

Well, that’s all for now in this edition of Holdin’ Out for a Hero. Please stay tuned as I’ll be working on another recap on the conference itself! Thanks a million, LATISM, for believing in me and choosing me to be among so many ladies that I admire and respect!

Hugs,

 

Laurita ♥

Awareness: The End, Not the Means

When I set out to be captain of my own team again for the SBACFL Walk-N-Roll for Spina Bifida, I never imagined just how many people my humble efforts would reach– in Central Florida, as well as beyond.

On Wednesday night, Chantilly Patiño of Multicultural Familia and Bicultural Mom moderated our very first Walk-N-Roll Twitter Party for Spina Bifida.

An unprecedented online event meant to raise both funds and awareness, we managed to raise $120 for the Spina Bifida Association of Central Florida. More importantly–we did raise awareness. During this Twitter party, the hashtag #SpinaBifida had nearly 2 million impressions! This is a huge leap forward for the spina bifida cause.

I could never thank Chantilly and all the sponsors and co-hosts enough for all their hard work and dedication to this cause. I’m truly moved by everyone’s show of support. I was also amazed by how many joined the conversation– both people who had been touched by spina bifida, and people who knew nothing of spina bifida before this event. Both groups alike joined forces for this effort, and I will always be grateful to all of them.

On Thursday evening, I hosted another event– in person, at Bravo! Cucina Italiana, here in Orlando. Proceeds from ticket sales benefited the SBACFL Walk-N-Roll for Spina Bifida.

An intimate crowd joined us in support of The Cause, including two families who are part of the SBACFL. A special thanks to Amanda Kern, who took some beautiful photos of the event.

 

 

 Why, oh why did I have my eyes closed for this one? An otherwise beautiful family portrait, taken by the ever-attentive Bravo staff.

 

Bravo! Cucina Italiana General Manager Michael Monahan was the one who made it all happen that evening. Thank you so much for caring about the Spina Bifida community! :)


*SIGH* At every event I attend or host, I have to put up with another of Mami’s gratuitous photo shoots. #Mamarazzi

 


Our friend Giancarlo came to support our event!

 

My good friends Brett and Krystal also came out to support me! Love them.

I’m always grateful for Vionet-Edith’s support. She’s a true friend…part of the family. :)

Attendees were greeted by an assortment of appetizers and enjoyed drinks on the terrace. We couldn’t have prayed for better weather!

Speaking of prayers…my beloved priest, Father Bassam, was there to support me and my family.

 

 

I was able to share special moments with other people, including a camera crew from the UCF Cornerstone program. These college students from my alma mater are volunteering for New Hope for Kids, another one of my favorite organizations, and they showed up to interview me about my experience as a wish recipient!

 

 (There’s more photos where that came from! Stay tuned. :)  )

 

Another priceless moment that evening was reuniting with Amanda’s son Chance. Now 20 months old, this incredible little guy has touched so many lives already. Ever since the first time I met him over a year ago, I’ve felt a very strong connection to him. He is definitely very special to me. I love Super Chance! :)

(Note: All the following photos are courtesy of AmandaKern.com.)

 

 

My wonderful family is always so incredibly supportive. I couldn’t do any of it without them!

 

 

It’s true– Amanda went on a *photo* shooting rampage during the event– expect to see some photos of all the Walk-N-Roll team captains as part of the Walk-N-Roll for Spina Bifida publicity campaign!

Other attendees included Shannon Celentano’s family, Dede Mischel. Thank you so much for your support!

When all was said and done, we made $120 for the Walk-N-Roll. Hmmm…I guess that’s my number. Maybe I should play the lottery…?

I feel remarkably blessed to have so many people supporting me. Whether it’s online or off, in person or from afar, there are so many ways that people can impact a life, support a good cause.

So, thanks to each and every one of you who attended and/or promoted either the Twitter party and/or the Bravo! event. I’m amazed and humbled by your love and support.

As if these events weren’t enough to send me into “awareness overload,” a truly remarkable meeting took place on the Saturday following the Bravo event which some of you heard about on Facebook. Yes, I actually met Judy Woodruff of PBS NewsHour for the first time in person, while she was in Orlando covering the campaigns.

 

During our meeting, Judy eagerly agreed to an interview! Below is our chat.

 

And when all is said and done…whether you have given a donation or spread the word, you are helping! Awareness isn’t just a means to an end– it is the end we’re searching for.

 

Love,

Laurita ♥

Parent & Down Syndrome Activist Eliana Tardio Shines Brightly

Sure, many people are skeptical about “love at first sight,” but have you ever thought of the validity of “friendship at first sight“? I’m not sure if it exists, but if it does, my relationship with Eliana Tardío of ElianaTardio.com is a classic example. Like many people I have met in the last few years, she and I didn’t meet conventionally; rather, we met online and our friendship blossomed.

Eliana and I are both blogueras, Latina bloggers with a cause, a mission, a purpose. While  neither of us can fully understand what life is like for the other, we come pretty darn close. While I have spina bifida, Eliana has two children (not one, but two), and both were born with Down Syndrome.

 

Above photo courtesy of ElianaTardio.com

 

If there’s anyone who I imagine doing more to remove the stigma from life with a disability, it’s Eliana. Whether it’s relating a funny story about her children’s wittiness, or posting a beautiful photo on Facebook for all to see of a tender moment between the two siblings, Eliana is constantly showing the world that her life while raising two kids with Down Syndrome, while at times challenging, is wonderful. 

Her compelling words of love, hope, true beauty, wisdom, and universal compassion challenge her readers to view “disability” in a different way– a positive way.

While I am becoming more and more honest with my own readers, I’m a lifelong cynic when it comes to “letting people in.” But with Eliana, I can’t help but always have my guard down, because to me, she reminds me of my own Mami– beautiful, compassionate, and funny, and fiercely devoted to the well-being of her children.

An incredibly gifted and bilingual writer, Eliana is a contributor for various online publications and Web sites, including BabbleMamiverse, Voxxi, About.com and Blogs de Mamás. She has also worked for the Early Steps program, and for Healthy Start Southwest Florida as an Educational Outreach Liaison.

Lisa and I admiring Eliana's passion and conviction as she speaks during the Blogging for a Cause panel at Hispanicize 2012.

 

As is hopefully the case with most unsung heroes, her community has indeed taken notice of her work. Eliana has been interviewed for several news publications, TV news outlets, and blogs, such as Mamás Latinas, Al Rojo Vivo con María Celeste, Univision’s Viva la Familia, and for Telemundo’s Madres Triunfadoras, to name just a few accolades. And this past May, I was honored to stand alongside her and our mutual friend, Lisa Quiñones-Fontánez of AutismWonderland.com, as together, we spoke up during the White House briefing that was the highlight of LATISM’s Top Blogueras Retreat. It was truly one of the most inspiring moments of my life! This was one of just a few times we’ve met in person, but when I do see her in person, it’s like picking up right where I left off…like meeting with a sister!

 

Eliana speaking passionately about special education at the White House, while Lisa and I (again!) look on in amazement!

 

For these and many other reasons, I have chosen to nominate Eliana for the Yahoo! Women Who Shine campaign. I can’t imagine a better nominee for this campaign, and I was so honored and humbled when she accepted my nomination.

The Yahoo! Women Who Shine campaign aims to “celebrate the women out there who are blazing new trails, touching lives or are just being amazing every single day.” That sounds exactly like Eliana to me, so please be sure to vote for her, and she might have the chance to win $10,000 to help kids like her beloved Emir and Ayelén continue to shine on. Please vote for Eliana here! 

To find out more about Yahoo! Women Who Shine, please visit this link.

Please “like” the Yahoo! Shine Facebook page here to stay up-to-date with great content.

 

 

Also, don’t forget to Tweet using the #womenwhoshine hashtag and visit the site to nominate other fabulous women who rock!

 

Disclosure:  I was compensated for this blog post while participating in the SocialMoms blogging program. The opinions and ideas expressed here are my own. To read more posts on this topic, click here.

The Resolution to Resolve: Following Up on the Hilton New York

After I publicly denounced the Hilton New York last week for their gross oversights in wheelchair accessibility, something of a magical nature (as any blogger knows!) happened: I got a response. 

This past Wednesday, only a day after publishing Accessibility is Not Optional: An Open Letter to the Hilton New York, the Resident Manager of the Hilton himself, called me up and apologized for the whole mess. We spoke for almost an hour (!), during which time he repeatedly expressed his regret for all that transpired, and he also took the time to tell me about steps that the hotel administration is taking to ensure better access for all patrons.

One thing that I found really interesting is that some (not all) of the rooms already have a  system that causes lights to go on, illuminating your path on the floor when you get out of bed during the night. He also told me about some other key accessibility features, such as a vibrating pillow in lieu of a clock’s alarm and strobe lights for people with hearing impairments.

They are also working on a separate accessible bathroom, to be used only by patrons with disabilities, on the second and third floors where I spent so much time during the BlogHer conference.

Kenneth Jarka, the Resident Manager I spoke with on the phone, was kind enough to share with me an E-mail that was forwarded to him. It’s related to the elevator incident, and it was sent by the Director of Security of Paramount Group, Inc., the building that leases the space in question and that is used by the Hilton. Above is a screenshot of that E-mail, which tries to explain what happened.

While the changes described by Mr. Jarka are, indeed, very promising innovations, I feel it is still very important to hold the Hilton accountable, especially after an E-mail I received from a fellow blogger, who has been working on a story about this. The Director of Corporate Communications replied to her:

“There was a misunderstanding and everything has been since clarified with our resident manager who spoke to one of our guests who was affected by an elevator being out of service.  Our resident manager spoke to the guest for an hour this afternoon and everything has been resolved.  In fact, she was very pleased at how we handled BlogHer ’12 this year and praised various team members for doing their due-diligence and [taking] special interest in her situation when one of the elevators was affected and personally escorted her to an event on an other floor.”

Well, here, in turn, is my complete response to the blogger, in regards to Hilton Corporate’s statement:

I wouldn’t go as far as to say the issue has been ‘resolved.’ Rather, there is a resolution to resolve it. According to my conversation with Kenneth Jarka, the resident manager, they are putting systems in place to solve these problems. Unfortunately, I didn’t get the whole story while I was staying at the Hilton New York, but after my conversation with Mr. Jarka, here’s what I know: there is, in fact, a working elevator (and I’m told, it’s a nice one) that could have taken me from the second to the third floor for the events held in America’s Hall. Here’s the problem, though: the Hilton leases that space– they don’t own it. It is part of a separate building next to the hotel, owned by Paramount Group, Inc., and the security personnel was in charge of keying on the elevator leading to that space. Well, that didn’t happen– the security personnel in that building failed to do so, leaving me no other choice but to take the cargo elevator. 

My conversation with Kenneth was actually very pleasant, very honest on both our parts, and he genuinely apologized for all of the inconveniences and negative situations that took place. But I think the issue goes deeper than that– it is a matter of communication between the personnel at the Hilton and the personnel at the other building. 

On the bright side, Kenneth took the time to tell me about other innovations that have been made to ensure accessibility and comfort to all guests, and he welcomed suggestions I had that might make it easier for wheelchair users, in particular. 

While the initial feelings of negativity that I was left with after this experience are gone, I’m looking forward to an ongoing communication with the Hilton management in which I can hopefully express some of the needs of people with disabilities in terms of accessibility. I feel very encouraged as to where this is headed, but the Hilton New York– and no doubt, other hotels with similar issues– have their work cut out for them. Accessibility is an issue to be taken seriously by all corporations, not because we deserve ‘special privileges,’ but because we need certain accommodations to ensure we have equal access like all other patrons. 

According to the latest census, there are 36 million people in the U.S. living with a disability. That’s a huge economic power we wield, so we need to hold all businesses accountable to the standards set forth in the Americans with Disabilities Act.”

So, there you have it.  That is my somewhat-confused response to a very confusing situation. I think the real lesson here is that corporations are not single units. Rather, they are large organizations comprised by thousands of people, and while, as a corporation, they might share a core value or general opinion on an issue, for the most part, you will get very different reactions and interpretations from different people on different issues.

While the response from corporate left me feeling as though they are scrambling to do damage control (although my blog post was not written with the intent to “damage,” mind you, but merely to shed light on a problem), my conversation with Kenneth shall forever remain in my mind as a genuine attempt to make personal amends, from one human being to another. 

After all, why go through all the trouble of forming departments such as “human resources” and “corporate communications” and “guest relations,” if we fail to see the value in communicating and relating, one human being to another? 

And that’s what my conversation with Kenneth was all about. No statements, no agenda– just one human being chatting with another. 

I’ll keep you all posted as anything else develops. 

 

Laurita 😉

 

Summer of Blogs

Why did I decide to title my post “Summer of Blogs”? Well, because it seems that, lately, my entire life is revolving around what I’m doing or what I’m not doing with my blogs!

Earlier this month, I survived a near-disaster with Holdin’ Out for a Hero when, in a desperate attempt to re-design, I deleted WordPress. Smart, huh? Thank God I was able to contact my web host and they were very patient and understanding, and got my site restored.

I’m looking into some upcoming changes for this site, that will hopefully be well-received by my readers! But first, I need to learn a little bit more about how exactly to go about this, so I don’t get my site into trouble again. 😉

Also, by God’s grace, I’m attending the BlogHer ’12 conference next week– in New York City!!! (Can I get a *woot woot*?) And– I leave for NYC tomorrow afternoon! (Can you say, “packing panic attack mode”?)

 

I'm going to Sparkle at BlogHer '12

In spite of all the stress, lack of sleep, and constant worries (health setbacks that I’ve already written about, plus the silly stuff!), I can’t imagine a sweeter time in my life than the present. 

Besides going to BlogHer in NYC, I’ll be extended the trip for a few more days to visit a country I’ve never seen before– Canada!! That’s right, I’m crossing the northern border this time, and, more specifically, I’ll be staying in a city I’ve always dreamed of visiting– Montreal, which is in the French-speaking province of Quebec. (C’est magnifique!) 

Needless to say, I’m super excited about this unexpected twist in my summer plans. 

Another “unexpected twist” I’ll have to deal with when I return is starting physical therapy. I know, I know, I promised you guys I’d get this all squared away soon! But finding a place that’s close to home and is covered by my insurance, etc., is easier said than done. I don’t want to jump into this headfirst (actually, one shouldn’t jump into anything headfirst, unless, of course, you’re Olympic swimmer Michael Phelps!). This is important, and I take it very seriously. So, I need to do a little more research. 

Finally, I’m still reveling in the awesome news that I’ve been invited to take part in a fun,  fabulous new event during BlogHer– a fashion show featuring 18 bloggers as models!! Yep, that’s right. I’ll be strutting my stuff on the runway, not slipping on recently-waxed floors. At least, that is the hope. My goal is to always show people that I don’t have a “disability” (except in the respect that everyone has challenges!), but rather that I have many abilities, among them, my world-renowned sense of style. Okay, maybe not “world-renowned”– still, it’s definitely there! 

If you’re attending the BlogHer ’12 conference this week, I’d love for you to be there, cheering me on, along with my fellow fab models! I haven’t met a single one of them in person, but from our recent online exchanges, I can already tell we’ll end up being friends. 

 So, this is basically what’s left of my summer, in a big, fat nutshell– colossal Web site mishaps, crunch-time, for BlogHer ’12, couture, and Canada. 

All this totally beats dealing with sunburn and sand in my shoes. 

 

 

Love,

Laurita ♥

 

**Disclaimer: This post is sponsored by BRITAX, and I will be compensated for this post.

 

 

 

 

This Week’s Rundown– I Need a Schedule!

Every time it seems I’m about to settle into a routine, something comes along to turn my “schedule” upside down. The truth is, right now, I don’t have a schedule. I have a calendar on which I write down potential opportunities as they present themselves, but I don’t really wake up in the morning knowing exactly what I have programmed for the day.

So, what I really could use is a secretary. Any takers? Yeah. Didn’t think so.

On Saturday, I attended Orlando Mayor Buddy Dyer’s 6th Annual Neighborhood & Community Summit at the DoubleTree by Hilton Orlando Hotel. Even though I had to be there by 7:30 a.m., I jumped out of bed with a [partial] smile on my face, because I knew in my heart, it promised to be an exciting day.

During one of the time slots, I went to the “Ask Your Mayor” session. I didn’t hesitate when I asked Mayor Dyer his thoughts on Gov. Rick Scott’s recent cuts to disability programs. He immediately expressed disdain and disgust for the governor’s harmful policies, and stated that he was certain those cuts would jeopardize Florida citizens. At least, there is no doubt in my mind that he is on our team.

I could not leave without making sure that the Mayor and his staff members had my business card. I also made my “elevator pitch” to them, meaning I plugged Holdin’ Out and the spina bifida cause big time. 

With Orlando Mayor Buddy Dyer!

With Orlando District 2 Commissioner Tony Ortiz, whom I first met at Relay for Life, and Juan Triana, and Juan Triana, Neighborhood Champion Award nominee.

As some of you might know, right now I am preparing for a trip to Miami (although I won’t say it too loudly!) to attend SheCon. You might recall what happened the last time my family planned a trip to Miami, and for a blogging conference, no less! I’m going to see if I can’t fit a few more necessities into my luggage, namely: a four-leaf clover, a rabbit’s foot, and a Rosary. (Probably not kidding about the Rosary!)

During the Mayor’s summit, I made a new friend, and she told me about an upcoming blogger event I hadn’t heard of– and which is very close to home! So, now it seems I’ll also be attending the Central Florida Blogger Conference in Maitland. I’m so excited about this one-day, no-travel-required, very-affordable event, which will hopefully be one more venue where I can promote the spina bifida cause.

And now I want to tell you briefly about a wake-up call I received. I got a phone call today from a young woman who was referred to me through a mutual contact, and whose daughter has spina bifida and is in those trying young adult years I’ve written about before. We were on the phone for over an hour! It seemed that, in talking to me, this mom was able to get a first-hand perspective of what those years are like, socially, emotionally, and in other ways. Before we ended our conversation, she thanked me over and over, and blessed me, for listening and talking to her.

So, I want to leave you all with this thought: I started off by saying I needed a “schedule,” but today’s phone call and the heartfelt exchange that followed showed me that God had other plans for me. Instead of just handing over my business card at an event for professionals and speaking to the bigwigs, I comforted a distressed mother. It’s easy to forget your true purpose when you’re busy chowing on chicken and risotto at a Hilton, but I’m glad this young woman reminded me that I live to serve, and not to be served.

Love,

Laurita ♥

P.S. I really missed being able to put a “heart” at the end of my sign-off. Thank you, WordPress!