Leading From the Heart: 2018 Special Olympics USA Games | #TeamWalmart #ChooseToInclude

“You are the stars and the world is watching you. By your presence you send a message to every village, every city, every nation. A message of hope. A message of victory. The right to play on any playing field? You have earned it. The right to study in any school? You have earned it. The right to hold a job? You have earned it. The right to anyone’s neighbor? You have earned it.”

                                 –   Eunice Kennedy Shriver, Special Olympics World Games,                                                                              South Bend, Indiana (1987)

 

Eunice Kennedy Shriver, image courtesy of Special Olympics Georgia

 

When my friends at Walmart invited me to attend the Special Olympics 2018 USA Games as their social media influencer, I wasn’t exactly sure what to expect. Of course, having spina bifida, I have grown up in the disability community, so I am familiar with many advocacy circles.

But this was different. This was the first time a brand invited me in my capacity as a blogger to represent them in covering an event that caters to the disability community.

If you know me, then you probably know I do not consider myself an athletic person, despite having competed in “adaptive” sports in middle school. Not being familiar with the Special Olympics culture, I didn’t realize how big this event was going to be, either. I knew I was just honored and humbled to be invited, and I was also excited the games would be held in Seattle, a city I’ve dreamed of visiting for years!

 

Pics or it didn’t happen, right? You can’t visit Seattle without photographing the iconic Space Needle!

 

 

The experience was even more meaningful, as Special Olympics is celebrating 50 years of games and a commitment to inclusion that is stronger than ever, as seen through their #InclusionRevolution campaign.  

I could barely hold back the tears when I arrived at Sea-Tac Airport and saw all of the signage warmly welcoming Special Olympics athletes to the city! Despite Seattle being so big with so much going on, you could spot Special Olympics banners or promotion everywhere. The entire town seemed consumed by the games, and it looked like everyone there was thrilled to be a part of this event.

My arrival at the Sheraton Seattle was even more impressive, as I was staying in the official hotel for the Special Olympics.

 

 

 

 

 

 

 

 

Why Walmart?

As it happened, Walmart had 15 of their Associates competing in different sports in the games. This was their first year as Sponsor of the Special Olympics USA Games!

During my stay in Seattle, I got to witness Texas Walmart associate and athlete Jordan Carter compete in the 400-meter relay…for which he won the Bronze medal!

 

Jordan Carter, front, races in the 400-meter relay for the Bronze! 

 

 

 

 

I had the opportunity to “track” down and chat with Jordan Carter after his relay race! Congratulations, Jordan! 

 

Meeting Jordan Carter at the track after his big relay race!

 

 

While I did not get to meet Special Olympics relay athlete and North Dakota Walmart Associate Heather Martell on the track, I got to watch her shine in her sport!

 

North Dakota Walmart Associate and Special Olympics athlete Heather Martell smiles broadly on the track. 

 


I also got to interview Shayne Curtiss of Connecticut, who won the Gold Medal for Bowling!

 

 

                       

With Shayne Curtiss and his coach, Lisa Thomasco. 

 

 

 

Indeed, having grown up and attended school in a culture that constantly told me “you can’t,” it was beyond moving and life-affirming to be surrounded by parents, coaches, sponsors, and fans who support these elite athletes in their respective journeys.

I definitely felt very fortunate that Walmart was allowing me to be a part of that.

 

(Check out below the dynamic squad of cheerleaders who came from Texas to show their support for Special Olympics athletes!) 

 

During the Opening Ceremony at University of Washington’s Husky Stadium, I was able to meet and mingle with athletes, as well as my friends from Walmart, and enjoyed an amazing breakfast in the comfort of a large lounge.

 

 

 

Then, I watched the ceremony. I could never have expected the giant lump that formed in my throat during the National Anthem, or when the athletes processed out onto the field, one by one, from every state in the country. I couldn’t have anticipated what a mess I’d become when watching videos of the athletes speaking about the importance of being included.

 

Husky Stadium filled with different colors as teams from each state in the country processed out onto the field. 

 

I dare anyone to tell me their eyes were dry when Special Olympics Chairman Tim Shriver came out onstage, hand in hand with Frannie, the youngest athlete to participate in this year’s games!

 

 

 

 

 

But most of all, I couldn’t have anticipated meeting Special Olympics Chairman Dr. Timothy Shriver, son of Eunice Kennedy Shriver, who founded the games in 1968. The Special Olympics USA Games are celebrating their 50th anniversary this year.

 

 

When the ladies of the Walmart team and I noticed Dr. Shriver was in the lounge where we were having breakfast, I totally geeked out. With some encouragement from my girls, I got up the courage to approach him, despite him being constantly surrounded by people chatting with him. Let me tell you, he is one of the most personable and genuine people I’ve ever had the pleasure of meeting! I couldn’t believe how accessible and down-to-earth this nephew of JFK is!

 

 

When I told him I have spina bifida and explained about my advocacy work with The Laurita Spina Bifida Project, he seemed very excited. I couldn’t believe I had my photo opp with him that early on. Then, a few hours later during the Opening Ceremony, I had the opportunity to interview him! I will let the conversation speak for itself, but suffice it to say it was one of the most inspiring, enlightening, and rewarding interviews I’ve conducted in my career.

 

 

 

 

While I didn’t get to meet her, I was thrilled to be able to watch the behind-the-scenes video produced by the Walmart team of Catoosa, Oklahoma Associate Liz Hubert, who took home the gold medal this year for powerlifting! She is bright, determined, and a very hard-working athlete who put it all out there and makes the Walmart community proud, as well as her hometown!

 

 

Indeed, for me, one of the most meaningful aspects of covering the Special Olympics 2018 USA Games in Seattle was spending time with “my girls,” Emily and Rosalynn “Roz” who I met in Bentonville when I visited the Walmart Home Office, and Debbie, Amber, and Denise who I met in Seattle. They all truly made me feel that I am “part of the family,” and did everything in their power to ensure my stay in Seattle was the best, and that I had every opportunity to talk with athletes and Special Olympics organization officials!

 

Rosalynn “Roz,” me, and Emily. Should we name ourselves at this point? I feel like we need a name! 

 

One more VIP I got to interview is Chad Jones, Vice President of Strategic Partnerships for Special Olympics. You know when you meet someone and start talking with them and just “click” as if you’ve known each other for years? That was Chad and me! What a beautiful soul and a remarkable human being.

 

 

 

 

Another highlight of the events for me was attending the “Future of Inclusion” panel, which featured Brad Smith, President of Microsoft (another very key sponsor of the games), comedian Tig Notaro, actress Lauren Potter of “Glee” (GLEEKS! I totally gleeked out), and my new friend Dr. Tim Shriver.

 

 

Each panelist spoke about their personal connection to the disability community and the importance of inclusion in our society. However, no one moved me more than Lauren Potter, who spoke of the teasing and bullying she suffered, all because she has Down Syndrome. After the panel, when the floor was open for questions, I took the opportunity to address her directly and let her know her experiences were quite similar to mine as a child growing up with spina bifida. I wanted to remind her that she is not alone. Thank you, Lauren, for sharing your story with us!

While it’s been a while already since we returned from Seattle, I am still unpacking the myriad memories I made there. To get to experience such an inclusive, warm, and inviting event, where competitors not only congratulate each other, but actually hug each other and genuinely seem to have each others’ backs, is not something I am used to seeing in the highly-competitive, “I must be #1” culture we live in. Why can’t this be the norm for all of us, all of the time? We don’t treat each other like that for the most part!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

It is beyond refreshing that, at Special Olympics, the motto actually is as Eunice Kennedy Shriver stated it at the inaugural Chicago games in 1968:

 

“Let me win, but if I cannot win, let me be brave in the attempt.”

 

 

Thank you to Walmart, to the passionate Special Olympics team comprised of 3,000 athletes, 1,000 coaches, and 15,000 volunteers, and to all of the athletes for allowing me to bear witness to your bravery.

 

Thanks to the fabulous volunteers who poured their hearts into this event and into making each attendee feel so welcome!  I felt right at home in Seattle thanks to you. 

 

“Show the world what it looks like to lead from the heart. Because the world is looking. The world is looking for leaders who value compassion, who value dignity and respect, who value unity, and you, my fellow athletes and friends of Special Olympics, you are the ones the world is looking for. You are the leaders the world needs at this critical moment. So show America what it means to shower respect on your fellow human beings. Show the world what it means to choose to include. Show others, where they see tension and fear, show them togetherness. And when others see division, I’m asking you, show them love. Because we are living in a country that needs you right now, and we’re here to take a stand for a different kind of America.”

Dr. Tim Shriver, Opening Ceremony, 2018 Special Olympics USA Games, Seattle

 

As Long As It’s Healthy– Right?

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.”

Ouch.

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 natural parental desire to pray for a healthy child.

I’m sure my parents did.

 

 

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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.

 

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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.

 

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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.

To Tanzania with Love | The Laurita Spina Bifida Project wants to donate wheelchairs

“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.

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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.

This holiday season, I am fully committed to making the freedom of mobility a reality and not just a dream for at least several people in the Tanzanian spina bifida community…people who are much like me.

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.

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Image courtesy Sifa Sylvia, ASBAHT 

How you can help

What we need, first and foremost, is monetary 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 laurita.tellado@gmail.com. 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:

The Laurita Spina Bifida Project on Facebook

@TheLSBProject on Twitter 

@TheLSBProject on Instagram

Remember what it’s all about

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.”

Thank you, Sifa. We’ll do our best.

Love,

Laurita ♥

In Case You Are Jealous of My Friday Night

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Laurita Spina Bifida Project to launch at Hispanicize 2016

Why, yes. It has indeed been a while.

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.

Today, I finally know it was all for good.

Please join us today on Twitter using the hashtags #TheLSBProject and #SpinaBifida (#EspinaBífida para español, también). Be sure to RSVP here to be eligible to win some awesome prizes!

And if you’d like to contribute to our crowdfunding campaign, that’s here.

To see the fabulous press release that my friends and colleagues at Hispanicize Wire published about our launch, please click here.

 

Till tonight! And…thank you. 

Love,

Laurita

On Sitting Alone at a Starbucks on a Sunday

 

 

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Let me preface this post by stating that I rarely eat alone. Or drink alone. Or think alone. In fact, I usually hate being alone. In any situation. More often than not, being “alone” to me, means listening to my Pandora stations or binge-watching videos on YouTube. Even reading by myself is difficult to do.

 

But, today I found myself drinking a latte at Starbucks. Alone. Don’t misinterpret me. I needed this “alone time,” badly. I needed time to think and feel and wallow and assess and reassess and analyze and reflect. The thing is, the longer I sat at that Starbucks alone, yet surrounded by strangers, the more I realized I have been doing this to myself in many ways for a very long time. A very long time. 

 

I’m not an introvert, and I’ve known all my life that I thrive when being surrounded by people who love and support me, and who enjoy working with me.
So, what happened? Well, what usually happens? Life situations change, or people change. Or in my case, it seemed like both. At some point, as fiercely as I loved the people in my life (and I have the innate capacity to love fiercely and loyally), I realized I have long outgrown the dire need of acting like a 21-year-old. Why? Well, for starters, I just turned 29. My interests, though much the same as before, have evolved. I have evolved. 
 
I have long prided myself on purposefully seeking out friends who share my somewhat sophisticated, even precocious interests. I have always enjoyed spending time with the “grown ups,” and even as an adult, it pains me to say that I am quite often afraid of seeking out my peers. Perhaps it’s just “only-child syndrome.” Or, perhaps not.
So, the invites would come, and I’d turn them down out of cowardice or pure lack of interest in said activity. But the more invites I turned down, the less the invites came, and pretty soon, I began to feel isolated and ostracized. My closest “friends” felt more like strangers, and it made every single one of my attempts to communicate with them feel more like a confrontation.

 

It was then that I began to see it. Weekend after weekend of events I was not invited to. Social activities in my social circle I was excluded from. Friends who had been like family turning their backs on me.

 

I started feeling like I was back in grade school, or in high school, during those incredibly painful and humiliating years of ostracism and exclusion. As much as I’d like to say that I’m older and wiser now, and that I know better than to get caught up in the petty toxicity of social media, I wasn’t above it. I’m still not.

 

No matter how many times I would reach out to my friends, they would not reciprocate. My own invitations, my own attempts at repairing a grossly misunderstood rift, went callously ignored. And it’s nothing I hadn’t experienced before in my life, since early childhood.

 

It hurt. It bled. And whenever I would think I was already numb, another weekend would pass and the tears would begin to flow all over again.

 

Now, with open eyes and a heavy heart, I truly realize what was so simply yet accurately expressed in the film “The Jane Austen Book Club”: High school’s never over. 
 
Just because I quickly grew tired of the partying and booming music of my twenty-something peers, doesn’t mean I grew tired of them. 

 

But to my chagrin, I guess I’m still that girl. That girl who is forgotten when the sleepovers are planned. That girl who isn’t invited on road trips or to house parties or even Sunday brunches. That girl who has all but given up and now spends her weekends praying and spending time with those who truly adore her– her parents.

 

That girl who wants to change the world but can’t seem to find anyone to have coffee with on a Friday afternoon.

 

That girl, I see, has been proverbially sitting alone at a Starbucks on a Sunday all her life. Waiting. Hoping. Crying. Grieving.

 

The irony of it all is, this girl is often the envy of others who follow her Facebook page and complain about what a fabulous life she has.

 

I suppose since we tend to post about what we do and not what we don’t do, it’s an all-too-simple mistake to make.

 

Yes, I know I have an amazingly encouraging extended network– family and friends that live in other cities, other states, other countries even. Some, I have only met on social media! Sadly, most of these people are too far away for me to invite to lunch (or coffee!), but I will never stop appreciating their unconditional support and love. And yet, I still feel alone. 

 

That girl who is sitting by herself at the Starbucks, staring at a nearly-empty, now cold cup of coffee, is tired of waiting. She picks it up, throws it in the trash, and walks on.

 

The numbness has closed in on her once more. For now. But it’ll be back.

It’s never over. It never stops hurting. I’m never immune.

 

 

Your Shoes are Killing Me

 

One of the definitive moments of the feature film, “Sex and the City,” shows protagonist Carrie Bradshaw entering the large closet of her would-be new apartment. As the lights flicker on, she takes in the size of it (really, it’s ginormous) and imagines all of the designer shoes she will fill it with.

I cringe whenever I watch that scene, as much as I love that film (can you say, “guilty pleasure”?).

Because I would never find enough “sexy” shoes to fill that closet with, even if I could afford them all.

Because the shoe industry has neglected to make shoes for women like me. Women with small feet. Women with spina bifida

For me, an assertive invitation of “Let’s go shoe shopping” from Mami evokes feelings of being a lamb dragged off to the slaughterhouse.

I’ve been that girl— the one who has broken down in the size 5 aisle of Payless, or many a shoe store. Because they don’t carry anything smaller for me

Indeed, some of my cutest “girly” shoes are in children’s sizes. And yes, they’re flats

I can’t wear heels unless they are even. None of those stiletto-style heels or wedges— even the shortest heels will have me teetering off-balance within seconds of standing.

 

Shoes

One of the few pairs of shoes in my closet that have short heels. I wore this outfit to a vintage-themed event. When I posted this as my profile pic a while back, I received compliments on my cute pose. Little does anyone probably realize I am grasping at the tree to keep from stumbling.

 

As I visit shopping malls and see signs indicating accessible entrances and restrooms, and ramps conveniently placed across from accessible parking areas, I am reminded of how far we’ve come as a society that is striving to welcome people with spina bifida and other disorders.

As I scour the ladies’ footwear section of any major department store, I am cruelly reminded of how far we still need to go. 

Indeed, I think my gender makes things worse for me as a shoe consumer. Men can get away with wearing more comfortable shoes, and even dress shoes don’t have heels. In fact, they could probably get away with wearing the same pair of shoes for a week straight, and no one would be the wiser.

The entire culture of being a woman in the 21st century is centered around footwear. “I don’t know if I have shoes that will match this outfit!” “Let’s go shoe shopping this weekend.” “Oh, my shoes are killing me, and I didn’t bring rescue shoes.” 

Guess what? Your “rescue shoes” are what I would wear to a social function. For me, there is no such thing as rescue shoes, because I cannot wear the shoes you need so badly to be rescued from. 

I can recall so many occasions on which I’ve attended parties with girlfriends. Near the end of the night, they are complaining about their shoes. “God, my shoes are KILLING me, Laurita! You are so lucky you get to use that wheelchair. Can I borrow it?”

No, you may not borrow my chair, because it is not a one-time deal. With this wheelchair, (which I use often for events, especially when I have to resort to wearing uncomfortable boots to match an outfit) comes a lifetime of regret. A lifetime of envy, resentment, and anger, because I cannot wear the shoes that are killing you right now. Because I wasn’t granted the luxury of being able to wear strappy heels that I will remove in less than two hours to dance barefoot on the dance floor after my feet have blistered.

Because as much as I hate to admit it, especially to myself, I LOVE the shoes that every woman loves— the strappy, shiny heels that you seem to glide effortlessly in, while I stumble clumsily in my flat boots.

Because Fate long ago decided that I do not get to live the Carrie Bradshaw fantasy for one lousy night, because that’s life.

Oh, your shoes are killing you? Then by all means, be my guest and remove them. You know what? They’re killing me, too. 

My Actual Letter to the Mother who Aborted her Baby with Spina Bifida

 

A note to my readers: 

Recently, I received an E-mail from a mom who contacted me for advice. She had a pregnancy affected by spina bifida, and at the recommendation of her doctor— she chose to abort. In addition, she wanted my advice on how NOT to have another baby with spina bifida. As you might have read in my previous post, I felt the entire gamut of negative emotions upon opening and reading that E-mail— anger, sadness, judgment towards her, and just an overall sense of melancholy that seemed to pervade my emotions for several days. 

In a desperate attempt to sort out my thoughts, I took to the only place I felt I could safely share my heart— this blog

 

CamelMeme

 

 

The backlash was almost immediate. I expected there would be pro-choice advocates (I am still very much on the fence in the abortion debate— so don’t ask me) who would argue that she acted on her rights. Really, I anticipated that. 

What I didn’t expect was the anger and vitriol that spewed, even from moms of children with spina bifida who know me personally. I was accused of not being a good advocate because a good advocate “doesn’t think of her own feelings.” 

How is it even possible to do that!? I could never put my own feelings aside, for it was my own feelings that helped me become an advocate for the spina bifida community. It is my emotions that fuel my passion for activism and education. I could never turn off my emotions. That is just absurd. 

However, I also was not prepared for the outpouring of love, support, and encouragement from many friends and followers who applauded my article. They felt it was a good tribute to how many parents of kids with spina bifida— and adults with SB, especially— feel when they come across stories like these. I will be forever grateful especially for these people, for they buoyed my spirits up during one of the most challenging times I’ve encountered in my 5+ years of blogging. 

What a difference four days makes! 

After a few days away from the circus (really, it was ridiculous!) I decided to finally reply to this woman with a clear head and lighter heart. I’ve also been physically sick with various illnesses which have had me very preoccupied. 

So, without further ado, this is what I actually said to her— verbatim, raw, uncut, no edits. And it was from the heart. 

 

Dear _____________,

Thank you so much for contacting me. I can’t imagine how difficult it must be to contact someone with spina bifida after losing a baby with spina bifida.

First, let me say I am very saddened and sorry for your loss. However you lose a baby, it is heartbreaking and it must be so difficult. I admit, upon first reading your E-mail, I was quick to judge you. I felt angry that you did not want to have a baby with the condition that I have, as if having spina bifida means that my life is not worth living. This is why I did not answer you immediately. But after much thought, crying, and praying, I have come to realize that there are many like you who do not have the information they need to make this decision. I know for a fact that many doctors put pressure on mothers to have an abortion when spina bifida is diagnosed.

I have lived with spina bifida my whole life, but I have never been a mother, so of course, my advice is based on what I know from having spina bifida myself.

But, I receive many E-mails from mothers who are pregnant with a baby with spina bifida, and many who have children with spina bifida.

Let me start by saying that there is no way to guarantee that you won’t have another child with spina bifida. Nobody can promise you that.

Sadly, there has not been much research or information about spina bifida until recently. Honestly, the only way to guarantee that you won’t have a baby with any disorder or disease is to not get pregnant. A B-vitamin called folic acid has been shown in recent years to help prevent a child from having spina bifida, but even if you take it as recommended by a doctor, it only works about 70 percent of the time. So, that is not going to promise you a baby without spina bifida.

Here is the link to some information about folic acid published by the March of Dimes, a wonderful organization that helps prevent birth defects and support families of children affected by birth defects: http://www.marchofdimes.org/pregnancy/folic-acid.aspx

Finally, because you seem very determined to not have a baby with spina bifida, the final piece of advice I can think of offering you is this: if, by chance, you do end up having another baby with spina bifida, please know that it is NOT a death sentence, or a tragedy. 

I have met many, many families who have children born like me, with spina bifida, and who, like me, grow up to be happy, successful, even healthy adults. Yes, they sometimes go through many surgeries or other medical complications, but most can grow up happy and make friends, and as adults, get jobs, go to school, and even get married and have their own families. I have played with many children with spina bifida I have met through these families, and they are absolutely beautiful and precious, and very smart and active.

It is possible to have spina bifida and live a happy, healthy life. 

I work as a blogger, writer, and social media professional. My work has taken me to different places, as I am often invited to speak at events and conferences around the United States. I have connected with adults with spina bifida and families all over the world who reach out to me for advice or simply to know that someone else understands.

I do not mean to say that I never get sick or feel pain, because I do. I have had 19 surgeries and many, many hospital visits. My family has been through a lot, and it is not easy. Pain is a part of life, and even “healthy” children will get sick, get hurt, and suffer at some point. Every parent feels their job is to take away their child’s pain, but like my parents have done with me, their job is to stand by me, to hold my hand when I am having a hard time. They are my best friends and love me so much.

So please don’t think that having spina bifida means I have had a horrible life. Thank God, I live a wonderful life and I feel grateful for every minute of it.

I hope this serves to encourage you, no matter what doctors say, no matter what others say to you, to be the best mom you can be for your child, whether he or she has spina bifida or not.

That’s all you can really do.

 

May God Bless you and please contact me if you want to talk some more. I am here.

Laurita

 

To the Woman who Aborted Her Baby with Spina Bifida

 

Dear Woman,

First off, let me say that I am not writing this on an impulse. In fact, I have given this a lot of thought and have decided to give this situation a “grace period” in which I could cool off, reflect, cry, pray, gain perspective from others in your situation, and allow myself enough time in which to answer you without anger or bitterness.

Of course, this time has allowed me to be more merciful and fair to you. But please know that I needed this time as much as you did. It’s not easy to for me to process my emotions about an issue that is so personal to me.

But, you E-mailed me asking for advice and answers. After choosing to terminate your pregnancy of a child with spina bifida, you want my advice, my insight, my wisdom, on how to have a “healthy” baby.

How’s this?

I have nothing to offer you. No advice, no answers, no wisdom, no tips, no magic crystal ball to predict what your next child will be like. 

My first instinct, upon reading your E-mail to me, was to hate you. After all, you managed to break down wall after wall of cautious, precarious illusion of self-esteem that I have spent 28 years painstakingly building. And for 28 years, it has worked for me.

 

Mami_baby
My Mami when she was about eight months pregnant with me. I am my parents’ only child.

 

When I first began blogging five years ago, I was moved by the many moms who contacted me. Most have had children with spina bifida, and some were pregnant with a baby with spina bifida, and wanted advice on how to handle the birth of a child with “special needs.” Or maybe they wanted solidarity; just the notion of knowing someone else out there in cyberspace can relate. I was elated at the idea of being able to help these women; give them a glimmer of hope for what the future held for their children. I offered them my friendship and unconditional support, and in return, I have been rewarded many times over by their reciprocity, their encouragement in my difficult times, and their genuine happiness at my triumphs.

Then I opened your E-mail. It’s as if five years’ worth of fortresses of support and encouragement from these moms and little white lies I told myself quickly eroded around me. I was exposed. Vulnerable. You shattered my illusion of invincibility.

I built a community of support and encouragement, of sharing knowledge along with the good, the bad, and the ugly about spina bifida. Women all over the world contact me to thank me for simply sharing my story, trivial as it may seem to many. Because the story of my normal yet fulfilling life gives them hope. It helps them to know their children can aspire to this.

And yet, I cannot help you, because you aborted your baby. You cut the common thread we would have shared. Now all I see is a large, dark chasm between us, because I am nothing like you. 

No, I am that child with spina bifida, the one you chose to abort. I look in the mirror, and I see the life that was discarded because it wasn’t deemed worthy of living.

And you ask me for advice because you don’t want your next baby to turn out like me.

And I am angry beyond words. Because in spite of all I have accomplished in my life, no one wants to have a child like me.

Not even my own mother would have wanted that. But she did.

 

Mami_me_crawling
I was about 18 months old in this picture. Whether or not Mami envisioned having a baby with spina bifida, she and I have always been thick as thieves.

 

And that, plain and simple, is what frightens me the most. That maybe, just maybe, your story and my mother’s are not all that different. You each won the lottery that no one wants to win.

I wish you well…and maybe next time, take a second glance at your lottery ticket.

It’s Never Too Early #RSVawareness #PreemieProtection

 

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

 RSV_image

 

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

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

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

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

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

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

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

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

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

 

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

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

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

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

 

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

 

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

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

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