We’ve all heard it. I read it in my Facebook feed all the time– usually whenever someone asks about a baby’s sex, many parents will respond with the same canned, well-meaning response: “Oh, we don’t care, just as long as it’s healthy.”
I know you’re probably thinking I’m an insensitive jerk. Believe me, I don’t mean to be. In fact, I wish for the well-being of all of my friends’ and loved ones’ children. And it’s a perfectly naturalparental desire to pray for a healthy child.
I’m sure my parents did.
I’m sure my parents stressed out endlessly and spent many a sleepless night, worrying about the health and well-being of their unborn baby back then. Any good parent does, although I’m no expert.
No, I’m not a parent. I’m not that kid, either. I’m the other one. You know, the one you prayed your heart out that your child wouldn’t be anything like.
The unhealthy kid.
Before this turns into a folic acid debate (don’t we just love those?), please keep in mind– I was born before the medical community was seriously beginning to talk about how to prevent spina bifida with the public. My parents weren’t warned about how beneficial folic acid might be before pregnancy. That being said, they did everything they knew to do to ensure my health and well-being from the start.
I’m sure my parents felt they had been kicked in the gut really hard when they found out I was born with spina bifida, hydrocephalus, neurogenic bladder and Arnold Chiari malformation, among other issues, all serious conditions that would require surgery in a matter of hours.
I’m sure Mami woke up feeling disoriented and confused when she found out that, instead of sleeping beside her, I was, at less than a day old, recovering from my first surgery– in an incubator away from her, in another hospital.
And, I’m sure Papi felt completely torn in half at having to rush between visiting Mami, who was recovering from a C-section and peppered him with questions about what I was like every chance she got, and visiting me, this girl he just met, who was completely dependent on doctors and nurses to keep her alive. Mami didn’t get to see me at all for five full days.
I know they felt helpless.
Mami recalls sitting in the surgery waiting area while I was having one of many shunt revisions (brain surgery, for the freshmen). Another family was waiting for a woman to give birth, and they were speculating whether they would need to buy blue or pink clothes. Mami felt livid. She thought to herself, “I wish I had their concerns!”
Thirty years and 19 surgeries later, my parents are undeniably happy. They adore me, and I adore them. Indeed, if anything, living with spina bifida and hydrocephalus has brought us closer, and it gives me such a great peace of mind to know that, challenges and all, they wouldn’t change me for an instant.
Their “unhealthy baby” became a polished public speaker since elementary school, being invited, often as keynote speaker, at fundraisers and benefits for different charitable organizations.
Their “imperfect child” graduated from the University of Central Florida with a B.A.
Their “sick kid” fought to make her community college accessible to all students, and met with the college’s senior administration to make it happen.
Their “disabled daughter”(ugh– the worst!) started a non-profit organization at age 27, The Laurita Spina Bifida Project, connecting people all over the globe who live with spina bifida, thereby fulfilling a childhood dream.
They no longer wish for that “perfect, healthy baby.” (And please, define “perfect.” I’d love to hear that definition!)
They wish and pray for my health and well-being, whatever that means for me at any given time.
They cry with me during my setbacks, and they rejoice in my triumphs and accomplishments. We work alongside each other, we pick each others’ brains, and we travel together– a lot. We eat, drink, and are merry. We go to Church, and then we go to Happy Hour. We entertain friends and family at our home.
We live a great life. It is not perfect, and yet, it is ours.
I no longer feel afraid that my parents grieve what could have been. I no longer fear that they are waiting for that “healthy baby.” They know now what’s possible, and whatever seems insurmountable to us, we muddle through it with faith and love for each other.
And, rest assured, we are never bored. Perhaps “healthy” is overrated, after all.
“How sad it is that we give up on people who are just like us.” — Fred Rogers (“Mr. Rogers”)
I don’t really remember what it’s like not being able to walk. As parental anecdotes recall, I was about two years old when I took my first steps. My parents were overjoyed, of course, but probably more than most parents, because I have spina bifida. According to my doctors at the time, I wasn’t supposed to be able to walk.
I may not remember what it was like crawling around the house or not being able to stand up, but, at age 30 now, I am beginning to grasp what it means to have limited mobility. My knees and back hurt constantly, and my wheelchair is getting much more mileage than it used to.
As I recently learned through a good friend I’ve never met, there are people in Tanzania, and in many other countries, who do not know the privilege of owning a wheelchair— what a blessing it is to have the equipment to facilitate mobility.
Little did I know until these past few weeks, that there are people on the other side of the world who would give anything to have the freedom I am often complaining about— the freedom to move.
That’s why my non-profit organization, The Laurita Spina Bifida Project, has offered to help the Association for Spina Bifida And Hydrocephalus Tanzania (ASBAHT) by raising funds so they can purchase wheelchairs, walkers, crutches, and a prosthetic leg for a young girl with spina bifida.
Image courtesy Sifa Sylvia, ASBAHT
A shifting perspective
It really gives me pause to reflect on how grateful I am for my “inconveniences.”
Over there, where my friend lives, people aren’t griping because someone took the accessible parking space. Or because their wheelchair won’t fit in their friend’s car when she offers to give me a ride.
They don’t complain about these problems because they don’t exist. Because access to the mobility devices they need doesn’t exist.
Many moms of children with spina bifida and hydrocephalus must push their children in strollers instead of carrying them. If they don’t have access to the brain surgery to have a shunt placed, the children’s heads grow until the parents can no longer carry them. Even these strollers are very hard to come by. As for me, I am only vaguely reminded I have a shunt in my head when the weather changes and I feel a slight headache.
Maybe this will make a huge, life-altering difference for them. Maybe it won’t. All I know is, everyone needs someone in their life who refuses to give up on them.
I have you guys. Now, it’s my turn to be that person for somebody else.
Image courtesy Sifa Sylvia, ASBAHT
How you can help
What we need, first and foremost, ismonetary donations. Whether it’s $5 or $500, every dollar makes a big impact when you add it all up. Trust me on this! How incredible is it that for the price of a latte macchiato you bring us one step closer to giving a deserving human being the gift of mobility?
Here’s a rough estimate of what each item costs, in U.S. dollars:
• Wheelchairs – $140.00 each
Walkers – $70.00 each
• A prosthetic leg for a youth with spina bifida – $460.00
Other ways to help out
If you own a company or know of a company or organization that might be interested in partnering with us to help raise the funds, please reach out to me at firstname.lastname@example.org. I truly believe “it takes a village,” and you are all my shining example of that!
Consider this campaign for your company’s end-of-year charitable contributions. Every donation is tax-deductible.
Also, since there are just so many wonderful social good campaigns during this time of the year, we need your help with getting the word out. Please, post to Facebook, Tweet, share, blog, Pin, Instagram post, etc.! There is truly no action that is too small to make a difference.
Please share / post using the hashtags #TheLSBProject , #SpinaBifida, and #Give5ToThrive (because we want to encourage that no amount is too small!).
Keep up with this campaign by following and connecting with us on social media:
Finally, keep in your mind and heart that we are doing this to pay it forward. We have been so Blessed throughout this entire process, and I’m grateful for each and every person who has been part of The Laurita Spina Bifida Project’s journey thus far.
In the words of my friend Sifa of Tanzania, the angel behind-the-scenes who has put me in contact with the ASBAHT: “It will be an honor for ASBAHT to partner with you or any other organization or individuals out there with the heart to help the forgotten children, youth, and adults living with SBH in Tanzania.”
People often comment on my Facebook posts (especially fellow ladies!) saying what a fabulous life I have. They see me gliding from event to event, effortlessly, cozying up to public figures and instagramming delicious food (and coffee drinks)!
I don’t blame you all for commenting, or even feeling a twinge of jealousy or resentment. It’s natural, and to be completely honest, the same thing goes through my mind when I’m instagram- or Facebook-stalking my friends and colleagues.
But, do you want the brutally honest truth? Because here it is.
There’s A LOT that gets filtered out of my life when I post on social media. Like, a hell of a lot. When I publish a photo of me in a gorgeous dress with my hair and makeup flawlessly done at an event enjoying the company of others, here’s what you don’t see:
You don’t see/hear the laughably-inevitable meltdown/pity-party two hours earlier about not being able to wear the shoes all my other girl peers are wearing (heels, stilettos, etc.).
You don’t see the panic attack I’m having as I’m rushing to make it out the door on time and have to stop and raid every drawer in the house for urinary catheters. Since they are delivered and I need a doctor’s prescription, it’s not like I can waltz into a public restroom with a few quarters and get a catheter out of a dispenser. (But you can easily find tampons or condoms, no doubt!)
You don’t see the frustration I feel when trying to find the perfect purse to match my outfit— that is, one that is sleek enough to carry easily but that will fit at least 5 catheters (because when your LIFE depends on using a plastic tube every three hours, there’s no room for guesstimating. Better to overestimate than…God forbid. And if I have an infection…forget it.)
You don’t see me up all night with indigestion because my digestive tract is much slower than everyone else’s. That expensive dinner I had cost me a good night’s sleep.
But most of all, you don’t see the struggle it is as I try my best to “fit in” (say what you will about being an individual, but don’t kid yourself— EVERYONE wants to fit in) while treading the delicate balance of staying “healthy” (whatever that means, because I haven’t felt “healthy” in many years) and being able to breathe easy and have some semblance of a social life.
That all being said, I know how truly fortunate I am. I have opportunities that many of my peers with spina bifida do not. I don’t lose sight of that.
But, today is Friday. Tonight, God willing, I actually am going out on a Friday night alone (a rare occurrence!) to attend a social / professional function. Just a while ago, I got off the phone after talking to my medical supply provider and my urologist’s office back-to-back. It feels like I am constantly having to negotiate how important a life-saving product is to me. Negotiate how many times a day I am allowed to pee. Can you imagine having your visits to the bathroom regulated? These are questions I actually get from my doctor’s office. (They will actually insist I drink more water, and then ask me why I use so many catheters!)
Not to mention my private medical insurance, which makes me jump through bureaucratic hoops just to be able to receive these bare necessities.
I don’t want to be calculating. I don’t want to be counting catheters. I don’t want to leave half of my meal untouched because I’m afraid of indigestion. I don’t want to walk into the place and immediately scan where the bathrooms are. I don’t want to wonder where I’ll park my wheelchair.
Tonight, I just want to act my age, and know that I’ve earned it. Tonight, I don’t just want to LIVE, I want to feel ALIVE, and know that my posts on social media actually reflect the fabulous reality.
Mea culpa. I may not have been fully “present” on Holdin’ Out for a Hero, but please rest assured…incredible things have been happening behind the scenes– miracles, actually!
Today, after 19 years of wishing, learning, waiting, and hoping, after years of prayers, all answered, not all in the way I anticipated, after much hard work and informal advocacy, it’s happening.
My non-profit organization, The Laurita Spina Bifida Project, is launching today during Hispanicize 2016– in Miami, no less.
Don’t pinch me, please. I don’t want to wake up!
It’s been a long time coming. I mean, really. I remember growing up thinking that starting any kind of organization– for-profit or non-profit– required wealth, and lots of it.
I remember wondering why I wasn’t rich and able to fulfill my dream.
I remember writing my first letter to Oprah Winfrey, and pouring my heart into it, asking her to shoot an episode about spina bifida. And I remember very clearly the polite “no, thank you” letter I received from The Oprah Winfrey Show– at age eleven.
Sometimes I wonder why I just didn’t give up and pursue a different path. I believe anyone with spina bifida can be just about anything within some reason. I could have done anything.
Instead, I chose the road less traveled. The one that hadn’t been trodden before– the one I had to pave myself.
But I haven’t walked it alone.Oh, no. There have been angels. Dozens, hundreds, perhaps thousands of them. And they carried me on their wings whenever I was too exhausted, too angry, too bitter from the failed efforts to keep flying.
It is now that I realize it. My “failures” weren’t failures at all– they were practice; my boot camp. With teachers, mentors, trainers, fellow advocates, cheerleaders, I worked through these failures and got up again.
My initial vision was to host a launch event at a restaurant in Orlando, close to where I live. Instead, I am in the heart of Downtown Miami, surrounded by fellow bloggers, journalists, entertainers, photographers, marketers, and seasoned non-profit industry veterans. Many of these are people I call very close friends.
In retrospect, I cannot imagine launching my precious childhood dream anywhere else, surrounded by so many of the people who are actually helping to make it happen!
Today, as I prepare to meet friends, family, and colleagues for Happy Hour at Toro Toro Miami and our extended community on Twitter at 5:00 p.m., I’m sure we’ll have a lot of last-minute details to think of.
As for me, I’ll also be reflecting on everyone, everything, every incredible moment that has brought me– us– here.
As many of you know, one of my greatest passions in life is raising public awareness of spina bifida and the challenges that affect people living with SB, as well as the accomplishments, talents, and abilities of these very people.
Along the way, I have become aware of so many other worthy causes, in particular other serious conditions and illnesses that also deserve awareness and publicity. It is in sharing information about these causes that I find great purpose.
November 17th is World Prematurity Day. (It’s actually the day after my birthday!)
With many wonderful awareness initiatives, walks, and fundraisers that now take place nationally, it’s awesome to see that much of the public is now more informed about the incidence of premature births.
What many don’t know about, however, is a disease that affects many premature babies– respiratory syncytial virus, or RSV.
It wasthe lack of awarenessof spina bifida that encouraged me to begin writing this blog in the first place. And now, it’s the lack of awareness of RSV among parents that has compelled me to partner with MedImmune to share this vital, potentially life-saving,information.
RSV is a very common seasonal virus that affects nearly 100% of babiesby the age of 2.
Here are some fast facts about RSV and prematurity that every parent needs to know:
Each year worldwide, 13 million babies are born prematurely
75% of parents don’t know the definition of prematurity (birth at or before 37 weeks gestation)
Most pregnant women don’t ask their healthcare provider about the risk of delivering prematurely and the potential consequences of preterm birth for their child
Severe RSV disease is the leading cause of infant hospitalizations in the U.S., with approximately 125,000 hospitalizations and up to 200 infant deaths each year.
RSV season usually occurs from November through March for most of the U.S., but it varies regionally, and from year to year.
Most of the moms I’ve befriended or who befriend me on social media have a child with spina bifida. As pillars of strength and examples of grace and perseverance for their families, these women would doanythingfor their families, and it would break my heart to hear of one of their children falling ill with RSV, especially with everything else they already have to deal with because of spina bifida.
This is why I feel it’s so importantfor me to share the symptoms and warning signs to look out for when diagnosing RSV.Parents, please be on high alert if your child exhibits any of these symptoms:
Persistent coughing or wheezing
Bluish color around the lips, mouth, or fingernails
Rapid, difficult, or gasping breaths
Fever (especially if it is over 100.4°F [rectal] in infants under 3 months of age)
There is no specific treatmentfor RSV disease, so prevention is your best bet. That being said, here are a few simple parents should take to help reduce the risk of your child getting RSV, particularly during high season, which is from November through March:
Understand the risk factors and ask your child’s pediatrician if your child may be at increased risk
Wash your hands and ask others to do the same
Keep toys, clothes, blankets, and sheets clean
Avoid crowds and other young children during RSV season
Yes, this information may seem very overwhelming, and I’m sure that it’s nothing that parents want to even think about. But, as the tired old saying goes, “it’s better to be safe than sorry,” and by taking the proper precautions, parents, especially those whose children have other health issues, will have one less thing to worry about.
And it’s never too early– or premature— to take good care of our children!
Hispanicize 2014 took place in Miami from April 1st through 4th, and this year, the organizers stepped it up by demonstrating that philanthropy is alive and well within the Latino community and beyond.
On March 31st, I attended Social Media for Social Good Training for Non-Profits Serving Latino & Multicultural Communities, a half-day, pre-conference event, sponsored by Florida Blue and open to professionals involved with nonprofit organizations.
The presenters were Alex de Carvalho, founder of Social Media Club of South Florida, as well as Regional Development Director at Constant Contact; Katherine Doble, publisher of Los Tweens and Teens and president of Siren Marketing; and Maricela Cueva, vice president of VPE PR.
The topics covered ranged from strategies for E-mail marketing to the most effective platforms and methods for engaging potential cause supporters using social media.
I personally found the training interesting and engaging, and it was packed with lots of resources for nonprofits and individuals alike.
For this cause blogger, one of the most awesome moments of the conference was witnessing Cuban bloguera Yoani Sánchez receive a Latinovator award for her courage and relentlessness in informing the global public on what is going on in Cuba.
The writer and activist has been arrested several times, even beaten, for speaking up.
I was honored and privileged to have the opportunity to meet her last year, when she came to Orlando to speak at my alma mater, Valencia College. After she was interviewed at the Latinovator Luncheon, I got to attend the press conference and ask her a question! What an amazing opportunity. I was thrilled.
I couldn’t believe that Yoani Sánchez remembered me from the Valencia event! I imagine she meets hundreds of new people every week.
Attending the Positive Impact Awards was yet another amazing opportunity to see social good up, close, and personal. It was also a wonderful time to pay tribute to many awesome Latinos who are making a huge difference in our communities– and in the world.
I’m very proud to know Hispanicize Founder & CEO Manny Ruiz, and call him mi hermano. Congrats, Manny, on being given the key to the city of Miami!
By far, one of the most emotional moments during the Positive Impact Awards was seeing Hispanicize’s own Founder & CEO, Manny Ruiz, be surprised onstage by being presented with the key to the city of Miami by none other than the Mayor of the City of Miami, Tomás P. Regalado.
I actually had tears in my eyes, watching Manny choke up as he thanked everyone for their support. 😉
Manny Ruiz gets emotional upon being awarded the key to the City of Miami. Love it!
Even early on in the evening, on the red carpet, I was able to say hello to a few familiar faces…including this one:
Oh, you know, just hanging out with my friend Edward James Olmos!
I was so thrilled that actor Edward James Olmos remembered me from last year, when I attended the premiere of “Filly Brown” during Hispanicize! Eeek!
But that wasn’t my only “geek-out” moment of the night. For reals. Yolanda Pagán, whose late husband Louis Pagán inspired the Positive Impact Awards, and I sort of improvised and tag-teamed that evening during the red carpet. It was a really sweet moment as I watched her glide gracefully from interview to interview and from photo op to photo op! Yoli and I have become very close friends ever since we met during Hispanicize last year, and I felt Blessed and honored to witness this shining moment for her.
Well, Yoli came over to me during the red carpet madness, and straight-up told me:
“Maria Hinojosa,” Yoli repeated. “She wants to meet you.”
“Why?” I muttered breathlessly.
“Are you seriously asking that question?” Yoli countered.
Well…yes I am! But, no matter. When veteran, award-winning journalist Maria Hinojosa asks to meet you, you ask when and where!
So, I dashed over to where Maria Hinojosa was being photographed and fawned over. Then, she notices me.
Then, she addresses me.
She said she really wanted to meet me, and that I was an amazing blogger or something like that, but, truth be told, as is the cruel irony in most situations that you should have been taping– I remember very little of what was actually said because of how shockedI was. Understandably.
But I dorecall the million-dollar-moment, as I was basking in my 30 seconds of glory, Yoli watching me the entire time with a huge grin on her face.
Manny walked over to us (to formally introduce me to Maria, I imagine) and puts his hand on my shoulder and says to Maria (I mean, are we on first-name-basis now!?):
“Laurita is one of the best bloggers in the country.” By this point, I’m fighting back the tears.
And then Maria totally says, pointedly, to Manny:
“I know! That’s why I wanted to meet her!”
By then, whether I was still breathing was questionable. I think I had a pulse, though, because my heart was racing.
Maria and me. New besties? Here’s hoping! 😉
George Torres, founder of the Positive Impact Awards, Yolanda “Yoli” Pagán, wife of Louis Pagán, and Manny Ruiz pay tribute to Louis’ legacy. (Doesn’t she look stunning?)
Some of the Positive Impact Awards honorees share their moment of triumph onstage.
I fear I’ve already made this post too long, but I have to share about the panel I spoke on, on Friday! My dear friend and hermano, George Torres, a.k.a., “Urban Jíbaro,” asked me to speak on a panel titled “Hispanic Social Media for Social Good: Corporate Best Practices.”
I have been fortunate to be a part of several dynamic panel discussions these past few years, and this one was no exception! Despite being the last day of the conference, and people showing up– *ahem*– at “Latino time” (there were parties every night!), I feel we had an amazing chemistry among our group, and we were able to engage with our audience members.
The best part was being able to tell my story, and hearing everyone else’s personal journeys through social good! I’ll be honest– I came away from this panel learning a lot!
With Yolanda “Yoli” Pagán, who is now one of BFFs! I can’t tell you how grateful I am for your support, encouragement, and many pep talks before and during Hispanicize! 😉
With my longtime amiga, Alsy Acevedo of Catholic Relief Services, Anadel Alberti of Lanugo, and Yoli. Thanks so much, ladies, for supporting me and attending my panel! 😉
Later that day, after I recovered my nerves from speaking, I ran into Matt Wallaert, a behavioral scientist who works with Bing. He wanted to talk to me and introduce me to a group of young students with ASPIRA of Florida that he brought to Hispanicize, so that I could encourage them. Needless to say, I was at a total loss as to what to say to these kids! I have no idea how to foster and nurture young minds; I don’t know what you’re supposed to say to encourage them!
Well, when I saw Matt and a young friend of his, Chantal, they told me that they had attended my panel and that it was great! Matt had walked in with his group of students to watch/hear us! I was so incredibly moved by their show of support, and I realized that, when it comes to the next generation, all you have to really do is be there for them.
The week of Hispanicize was both too long and too fast. There were so many things I would have liked to do but didn’t have the time or energy to do. There’s just so much! That’s why I’m dedicating several posts, here, on Espresso con Leche, and on my hypeorlando blog, to covering everything I can.
By far, the most inspiring and uplifting moments of Hispanicize this year were the ones related to social good. Of course, it feels great to give, and it also feels wonderful to connect with others who are passionate about philanthropy within the social media space.
The best part of using social media for social good is that “the buck doesn’t stop here.” The donation or Tweet that you make, the photo you instagram, the blog post you publish about a cause can have so many impressions and can be shared so many times. Social media knows no boundaries or limits. Social media exists so that we can push our stories out beyond the natural, physical scope of older media channels.
And this week, I got to connect and reconnect with so many others who feel passionate about doing just that!
A hearty shout-out to the following sponsors:
Florida Blue, who sponsored the Social Media for Social Good Training for Non-profits Serving Latino and Multicultural Communities training
3M, who sponsored the Positive Impact Awards, this year’s signature event, in addition to sponsoring and participating on our panel, Hispanic Social Media for Social Good: Corporate Best Practices.
Toyota Latino for being my sponsor during Hispanicize, and for inviting me to sit at their table during the Positive Impact Awards! I have so much more content to share about you guys, but for now I’ll say that you have truly demonstrated your commitment to social good in every initiative and program you design for consumers. Thanks for taking me under your wings! 😉
“You must be the change you wish to see in the world.”
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.
With 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!
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 allgive 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 lotto offer and give to others.
3. Don’t tell us about every medical studyyou’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 anythingto do with that.
Still, neverput 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 wherethis 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.
“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.
Whenever I return from a conference, I suffer from Chronic Recap Deficit Syndrome (CRDS). Yep. That’s in addition to spina bifida!
What is CRDS? It is usually characterized by one or more of the following symptoms:
(1) Panic or anxiety when logging into my blog dashboard
(2) Feelings of inadequacy when reading other bloggers’ recap posts
(3) Frustration (maybe even cursing) while uploading photos
(4) General unease or distress at not being able to summarize events adequately
I’ll admit– here and now– that I live with CRDS. And while there is certainly no cure,I’ve come up with a way to make my life (and yours as the reader) easier: make a list. So, without further ado, here’s my list of the Top 12 Hispanicize 2013 Moments (in no particular order of preference)!
1. The Sherwin-Williams #SWpintura Downtown Miami Design District Tour
At the Grand Opening of a new Sherwin-Williams store in Miami! #SWpintura
Yes, I know I recapped this already, but I can’t help but mention again how awesome this tour of Miami was. We got to see the part of Miami most people don’t think of when they think of this beautifully diverse, energetic city. So at the risk of sounding repetitive– it rocked.
2. Dinner with #ToyotaLatino representatives, bloggers, and communicators in the automotive industry Javier Moreno has been a great friend since 2011. I was absolutely thrilled when he put his faith in me and asked me to be the official correspondent at Hispanicize for Toyota Latino!
To me, it was just an incredible honor to be invited to be a correspondent, so I hardly imagined what Toyota had waiting for me– a multi-course dinner at OLA Miami, one of the trendiest spots in Miami Beach! The restaurant is located inside Sanctuary Hotel, and in it, you can enjoy the Latin American flavors created by renowned Chef Horacio Rivadero.
Oh là là!
Clockwise from top left: Marlin tacos made a very tasty appetizer; Toyota pulled out all the stops by presenting us each with a goody bag; we also get to each take home a coaster; the Chocolate Cigar, very popular at OLA, was the perfect ending to a delicious, sophisticated meal; dinner kicked off with an assortment of tantalizing and upscale Latin appetizers.
Goodies!! Ah, yes, please note: the scarf I’m wearing is part of my “welcome gift” from Toyota Latino! #Spoiled 😉
My very dear friend, Javier Moreno, Assistant Manager of Corporate Communications at Toyota Motor North America, Inc. He’s the one who made this experience possible for me! Thank you sooo much! I owe you a few. 😉
The very first Latina blogger I ever met– and to this day, one of my absolute favorites! Jeannette Kaplun is a beloved friend and “big sister.”
Besides, the amazing food, drinks, and atmosphere at OLA, my favorite aspect of the evening was being able to engage in candid, casual, unscripted conversation with people I normally would not dine with!
I was completely taken by surprise when I found out I’d be sitting next to Jorge Bernal, Entertainment Anchor on “Al Rojo Vivo” on Telemundo, and host of “Tu Mañana LIVE!” on Sirius XM. I’ve been wanting to meet him for quite some time– and here he was, inches away from me! 😉
Sharing a special moment with Jorge Bernalof Telemundo’s “Al Rojo Vivo” during the Toyota dinner. Thanks, Toyota!
Over dinner, we were able to learn about some Toyota’s social initiatives. Toyota is currently focusing on growing programs in the following areas: education, environment,and safety. (To learn more about all of these programs, please visit the Toyota In Action blog.)
The bloggers and communicators were able to express our own ideas and opinions on a variety of topics, and basically outline what matters to us. The stories we shared ran the entire gamut of hilarious, moving, compelling, and informative.
There was definitely an underlying current at the dinner table– a desire to effect social change. I will always be grateful to my friends at Toyotafor making this all possible!
(From left to right: Javier Moreno, Álvaro Castillo, Heather López (seated), me (seated), Javier Mota, Jorge Bernal (seated), Jeannette Kaplun, and Janice Lusky-Greenspan. Photo courtesy of Jeannette Kaplun of Hispana Global.
There are more photos to come on Espresso con Leche, plus an interview with Javier Mota of “Autos 0-60” on Sirius XM Radio Channel 146! Thank you so much, Javier, for interviewing Javier Moreno and myself!
3. Attending a private screening of “Filly Brown” and chatting with the cast during an exclusive Q&A session, followed by an after-party at The Stage!
Yep. This actually happened.
And yep. He really is that awesome. What a classy, fun guy!
Earlier in the day, I had a *totally chance encounter* with Lou Diamond Phillips in the lobby! We weren’t even at the screening yet! Of course, I never miss an opportunity to talk to celebs about The Cause.
The stars of “Filly Brown” and the Director/Writer/Producer, Youssef Delara, held a Q&A session immediately following the film screening.
With Gina Rodríguez, star of “Filly Brown,” during the after-party at The Stage. She is super sweet– and crazy talented!
Lou Diamond Phillips tore it up with “Knock, Knock, Knockin’ on Heaven’s Door.” Oh, yes, he did!
4. The Adelante Movement
One of my absolute favorite moments was meeting longtime online friend DanPérez— blogger, filmmaker, philanthropist, and “all-around nice guy.” Words can’t express what finally meeting him meant to me! Love you, hermano!
I know many people will think the Adelante Movement is just for women, but I know at least several guys who were “man enough” to stick around for this spectacular experience! One of them is my very good longtime friend Dan Pérez, who I got to meet(finally!)for the first time during Hispanicize. That moment was priceless to me! Getting to share it with our mutual hermano, Juan Alanis of Juan of Words, made it all the more special.
Familia. I love these boys so much!
Clockwise from top right: With NHLI founder Maria Elena Toraño; with Rita Moreno of “West Side Story” fame; with Charo, the “Cuchi Cuchi” girl; Nely Galán interviews Charo onstage; with Nely Galán.
5. Hanging out with and interviewing Los Tweens!
What can I say about Los Tweens? Founders Cristy Clavijo-Kish and Katherine Dobleare doing such a fabulous job of raising kids who are at once socially conscious and aware of their own potential. They are now “paying it forward” with their work for Los Tweens, where they share advice, tips, and stories with other multicultural parents of children ages 7-12.
Of course, being raised by blogger parents, the youngsters want to get in on the fun, too! That’s why Cristy and Katherine have created My.LosTweens.com, a safe place where tweens can interact and share their own experiences, traditions, interests, etc.
Here’s a really cool video that I did with Maddy, Sophia, and Olivia!
Thanks so much, Los Tweens! I hope to someday host your Girl Scouts troop in Orlando.
Maddy, Olivia, Sophia, and Cristy (the twins’ mom) from Los Tweens. (Where’s Katherine?
6. Connecting with Sonia Velasquez.
Oftentimes, I’ll attend a conference, anticipating to run into a friend, and we’ll always miss each other, or only see each other once, in passing.
I metSonia Velasquez on Monday, when my family arrived in Miami, and she was the guest of honor during the Sherwin-Williams #SWpintura event. I feel blessed to say I saw her every day until I left on Sunday! We were able to have real, honest conversations, soul-to-soul. There are a lot of people I’ve known for several years. Few people actually talk to me on a soul level like Sonia did– within hours of us knowing each other.
Sonia Velasquez and me. This woman has a heart of gold. So Blessed to now call her a friend!
Her advocacy work for AIDS and domestic violence causes, in addition to her job as host of Extreme Makeover: Home Edition Latin America, make her one of the people I was most looking forward to meeting! And…it was just icing on the cake that she joined my “Blogs with a Cause” panel.”
I want to be just like Sonia when I grow up! 😉
Sonia and me by the pool, catching some rays of sunshine– just minutes before I caught a few too many!
7. Emilio Estefan.
I remember maybe about four or five years ago, being in Miami on vacation with Papi and Mami, taking one of those cliché boat tours where they point out all the mansions of the city’s hottest celebs.
We saw Emilio and Gloria Estefan’s house. I bet the extent of my thoughts was, “Must be nice.” 😉
And then, years later, this happened…
Emilio and me. Gloria was right– eventually the rhythm IS going to get you!
OMG. I’m in the Target #SeHablaMúsica Lounge and Emilio Estefan is hugging me. As Mami takes our picture, he says, “You’re small, just like Gloria.”
OMG. Emilio just drew a comparison between his wife and me. He’s comparing me to Gloria, the Gloria!
What a friendly, classy, awesome gentleman. I will never forget this moment!
8. The McDonald’s “Me Encanta” Yacht Party!
What happens on the boat, stays on the boat– and on Twitter, on Facebook, on Instagram, on Foursquare, on Tumblr– and if you hit the photo booths, they give you a copy to take home! 😉
The McDonald’s #MeEncanta Yacht Party for Bloggers and Journalists, celebrating the Chicken McWrap, was, hands-down, the most fun one can have on the water!
We were treated to drinks, hors d’oeuvres, the best party music, and a floating dance floor (you know, ’cause it’s a boat) for several hours!
9. Carlos Ponce
Let me say that again. Carlos. Ponce. Man, it felt good saying that! 😉
Right before Carlos took the stage to accept his Latinovator award and be interviewed onstage, my friends Vanessa Smith and Janice Lusky Greenspanintercepted him and I got to meet him!
I just handed Carlos Ponce my business card. Carlos has my card. Heck– he has my number. Call me, maybe? 😉
Okay, so I gave him my elevator pitch about The Cause. This was really when I was supposed to sing a few bars of one of his songs and persuade him to let me be a back-up singer for him!
10. The “Blogs with a Cause” panel.
There’s nothing I can say about the panel I moderated without practically bursting into tears. Um, not practically. Actually. Because organizing this session, coordinating with the girls, and actually connecting with them in person was one of the most spiritually enriching experiences of my life! I can honestly say I went to Miami barely knowing these women, and I left with four new best friends.
Denisse, Debbie, Teresa and Sonia– I owe you an overwhelming debt of gratitude for your commitment and your enthusiasm in joining the panel. When Manny asked me to “put together a panel” for Hispanicize, I thought it would be easier to master underwater basket-weaving rather than find a group of at least three people who not only were passionate about a cause, but were fluent in distributing their message across social platforms. Together, Manny and I foundfour.
As they each elaborated on their respective causes and initiatives, and as I asked them questions, I couldn’t help but be in humble awe at the magic that was unfolding. Here were four women from different corners of the U.S. with very different projects, coming together for a common purpose: to educate the public about very urgent, pressing issues in our diverse society.
We also got some wonderful questions from the audience. They went straight to the point– they each wanted to know how they, in turn, could effect change in the world using social media. We discussed how some of them are balancing their “day jobs” with their labor of love, and how we can make money while advocating for a worthy cause, too.
I think the best compliment we received after our panel was from people who friended us on Facebook immediately following our session! We were very grateful to meet people who wanted to connect with us right away.
What we need is a name for this group! Unfortunately, The A-Team, the Powerpuff Girls and Charlie’s Angels are all taken.
Those who attended the session enjoyed the wisdom of these four dynamos for about an hour. But the bond that was formed among the five of us will last a lifetime.
I love you ladies. ♥
11. Meeting Janice.
You know when you have one of those moments of clarity when you just met someone, and realize that you were meant to meet all along? I had one of those moments during Hispanicize, and it wasn’t when I met Carlos, Emilio, Edward, or any of those other celebrities.
It was when I met Janice Lusky Greenspanof PRecise Communications. To call her friendly, sisterly, or even motherly at times (because I definitely needed that!), all seems inadequate. Although I’ve attended plenty of conferences in the past, in different capacities, I had never been treated quite like therock starI felt like during Hispanicize.
Janice looked out for me on behalf of Toyota Latino, and was such a fabulous facilitator of opportunities. Whenever or wherever there was someone to meet, or an event or session I absolutely needed to attend, there was Janice, making sure I didn’t miss out. I feel incredibly humbled and honored to have connected with you on such a personal level. The mofongo is on me when you come visit me! 😉
12. Honorary Mention: The Sunburn
By now, most of my friends have seen on Facebook The Epic Sunburn that literally handicapped me from doing anything other than surfing the Internet in my pajamas for about four days after returning from Miami!
Vanessa Smith and I don’t always use the best judgment when we hang out together, and we spent a long time in direct sunlight on the pool deck after the conference was over.
Great times with one of my besties! It was totally worth it, hermana. 😉
Ouch. Consider this an unofficial PSA for protecting your skin against the sun!
Mercifully, as soon as I posted a photo of my badly-burned back and shoulders (although the arms and legs were burned, too), I immediately received comments from friends, with tips and homemade remedies I could use. Literally, all of these products lived in our kitchen!
Mami had just a little too much fun mixing a potato salad on my shoulders!
The Human Salad Bar. On my shoulders: orange blossom honey, apple cider vinegar, dijon mustard, redskin potato peels. Yum.