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.