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.

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

 

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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.

 

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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.

 

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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. 

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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.

 

Join Me in Getting Covered #TakeCareChat

Disclosure: This post is part of a campaign with Ad Council and Get Covered America. I will be compensated for publishing this post and for participating in the Twitter chat. All ideas and opinions are my own. 

 

If there’s someone who truly understands the value of having good health insurance, it’s me– trust me. I certainly wouldn’t be here without the vigilant care of many good healthcare providers and nurses, and there were times in my childhood when I was literally in and out of the hospital every other week.

Sadly, more than 1 in 6 Americans don’t have health insurance.

This is mostly due to one of the following reasons:

  • They don’t receive coverage from their employer 
  • They cannot afford coverage
  • They were previously denied coverage because of a pre-existing condition

 

Under the new Affordable Care Act, people cannot be denied health coverage because of a preexisting condition.  This is fabulous news for me, having spina bifida and hydrocephalus! Thanks to the ACA, insurance companies can’t turn me away because of that. 

I feel very blessed and fortunate to have access to good healthcare, and I don’t wish to take that for granted for a single second. But, if you’re not willing to take my word for it, perhaps you’ll listen to this adorable menagerie of pets who have a message for you:

 

 

What’s more, most people will have to pay a fine if you don’t enroll in healthcare up by March 31st. The 2014 fine is $95 for an adult or 1% of a person’s income, whichever is greater. (The fine is $47.50 for a child, and a family can only be fined up to $285.)

I’ll be joining Ad Council and Get Covered America TOMORROW from 1 to 2 p.m. E.T. during a Twitter chat where you can learn more and ask questions about getting covered. Be sure to follow @GetCoveredUS on Twitter and Tweet using the hashtag #TakeCareChat to participate in the conversation!

 

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In the meantime, you can visit GetCoveredAmerica.org to find out how you can enroll in health insurance, and to get answers to some frequently asked questions about the process. There are also some pretty awesome tools on the site, like the Get Covered Calculator, which can help you discover how much assistance you could qualify for to help pay for your insurance coverage.

Figuring out how to navigate the ins and outs of the ACA can be daunting, especially since it’s so crucial to your health and to the health of your family. But with the proper tools and resources, you’ll be enrolling in no time– and hopefully by the deadline of March 31st!

 

–Laurita

5 Simple Ways to Help Someone Living with Spina Bifida / #GivingTuesday

 

Giving Tuesday

 

 

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 all give 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 lot to offer and give to others. 

 

 

3. Don’t tell us about every medical study you’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 anything to do with that.

Still, never put 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 where this 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. 

Also, like you, we hate twerking.

Happy Giving Tuesday!  

–Laurita ♥

Cover Girl: Emily’s Modeling Debut A First for Parents Magazine

When I first began to write on Holdin’ Out for a Hero, and E-mails and friend requests from parents of children with spina bifida started coming in, Elizabeth Keicher was among the first mamas to befriend me. This was almost three years ago, I think, and I remember thinking what an adorable little girl she has. “Gosh, I hope I get to meet them someday.”

Although that day hasn’t happened yet for me, an equally momentous occasion has taken place for Elizabeth and her precious daughter, Emily, who is three years old. This month, Emily’s beautiful face was featured on the cover of Parents Magazine, and an interview with Elizabeth was promoted on their digital version.

 

The tiny model proudly holds up a copy of the February issue of Parents  magazine– with her gorgeous picture on the cover. 

 

Of course, I couldn’t wait to profile Emily and Elizabeth on Holdin’ Out for a Hero, so Elizabeth was willing to answer some questions for me. Read on to find out why Emily’s debut is such a big deal for the spina bifida community– but why it shouldn’t be a big deal in the long run.

 

How did you initially find out Emily had SB?

My husband Chris and I were first-time parents, and had been trying to conceive for over a year.  We were thrilled to finally be expecting, and [went to] our 18-week routine exam with a sonogram for the baby’s physical.  About an hour into the exam, the technician stopped and told us we needed to speak with our OB.  We were moved to a regular exam room, and our OB came in with her laptop and said the technician spotted what might be a hole in the baby’s spine, and that in some pictures it was visible but in others, it was not.

Then she said, ‘”It could be spina bifida.”

I went numb at the prospect of any medical complication with the baby.  I looked over at Chris, who was listening intently to the doctor.  They immediately sent us to a perinatologist; we were rushed out of the room, given directions to a specialist five minutes away, and somehow composed ourselves and went to the next appointment.

 

Not even four years old, Emily has defied the doctors who once told her parents she’d never walk. 

 

How was SB explained to you? Had you heard of it before?

At the perinatalogist, they did a higher-level ultrasound, and walked us through everything real-time as we watched the screen.  Words like lumbosacral myelomeningocele, hydrocephalus, Arnold Chiari malformation, moderate severe hindbrain herniation, swirled around.  She pointed to the film on the computer and noted the shape of our baby’s head, referring to it as the “lemon sign” as a result of hydrocephalus; she pointed to the cerebellum and explained it had the shape of a banana, a downward displacement blocking the brain stem, noting the tethered spinal cord was yanking the cerebellum down, thus restricting the flow of cerebrospinal fluid.

I told her I had no idea, no idea what anything she was saying meant.  What did it mean for our baby?  What were we talking about?  Would the baby be okay? We were told there were no clear answers, [that] we wouldn’t know the extent until after birth, and possibly not even then, but much later in the baby’s life.  We should expect paralysis, an inability to walk.  No control over bladder and bowel function.  The necessity of a shunt, and a lifetime of shunt complications, infections, clogging, failures – each followed by surgery.  Varying degrees of intelligence challenges, from learning disabilities to severe compromised intelligence, all complicated by each shunt revision and complication.  A lifetime of surgeries, each coming with compounded health problems and deteriorating quality of life.

At 9:00 AM on January 13, 2009, I walked into my sonogram appointment expecting to make a DVD of our baby, which we would hand out as announcements (only close family knew we were expecting).  By 1:00 that afternoon, I was lying on the table in a doctor’s office I had never met prior to that day, listening to medical terms and images I was scared and confused by, and they were asking my husband and me if we still wanted our baby.

In her interview with Parents,  Elizabeth says “These kids are just like everyone else. You’re going to love that baby unconditionally.”

 

What info/resources were you given?

When you are pregnant and told you child has a medical condition, everything stops.  As a parent, you want to secure everything for your child – so this uncertainty of how your child will be impacted by Spina Bifida is wrenching.  Pregnancy was the hardest part for me, the waiting and the months of worry about her.  I think what makes the diagnosis so difficult for the medical community is [that] they cannot tell you what SB is going to look like for your child.  Someone with L4 may walk with no assistance; someone else may use a walker and braces; someone else might use a wheelchair.  A lesion level tells you nothing in utero.  Doctors can’t tell you if they will need a shunt, what the bladder and bowel challenges might be, what therapies will be needed, or how your child will progress.  So what they should say is: your child’s future can range from this to this, but it is certainly manageable and will become your normal.  You are still having a beautiful child you will love and cherish…”  Everything was “won’t, can’t, shouldn’t, don’t”.  But when you have a baby, when you finally get to see them, everything falls into place.  You learn how to take on what needs to be done, regardless of what that entails.  You just do it, because love is the biggest motivator of all.  Having a baby means the opportunity to love someone unconditionally; having a diagnosis of spins bifida doesn’t change that.  Just because someone has medical needs, developmental needs, doesn’t mean you love then any less.  In fact, you come to treasure them, their accomplishments and hard work, more.


What helped you and your family, or what didn’t help you? Did you encounter any blatant misinformation or misconceptions that you would now like to debunk?

For me, finding the support group on Baby Center was key.  There were tons of moms, some expecting, some with newborns, and some with toddlers, just asking questions and sharing things.  I learned so much, and received so much information and support.

Along with that support group, the blogs were amazing.  Being able to hear another parent’s voice in all this was so grounding.  The people that I have “met” online in the SB community are an amazing family.  While most of us have never met in person, knowing there is always someone there who will listen and fully understand is an amazing thing.  I am excited that Emily is here in this day in age, where she, too, can connect with people all over who have a true understanding and sharing of what her thoughts and life may be.

There are a lot of misconceptions out there with regard to disabilities.   I know many people look in on our life, look at Emily and pity us.  They make a two-second assessment of her, based on the walker, and assume life is hard, tough, and sad.   I know this because people approach her, and “tsk” or “awwww” with pity; they tell me they will pray for her, and instruct me to do the same.  Please don’t pity her!  I don’t want to trivialize how hard she works –because she is the hardest-working child I know- or trivialize how challenging it is to manage many aspects of spina bifida.   But everyone is working through, or dealing with, something in their life.  I can totally see they are just processing what they are seeing, but therein lies the issue: people are so unfamiliar with other people, kids, of all walks of life and with various medical diagnoses that they are almost startled.  For some people it is the first time they have ever seen a pediatric walker – people will say “I had no idea they made walkers so small” – which means they never conceptualized that a child might not be able to walk.  This is what I hope to see changed.  Society as a whole need to be familiar with images of people in walkers, wheelchairs in print, television, and media.  Our norms are shaped largely by what we see and hear through these venues.   Where are the daily images of someone using a walker, in a wheelchair?  Having a kid on the cover of a mainstream magazine, who has SB, or who is using assistive technology, should be a regular occurrence; no big deal, because we have fully embraced that as typical in daily life and society.  We have far to go with society as a whole – but we have a responsibility, as her parents, to facilitate this change.

 

Although her parents have rearranged their schedules to incorporate a rigorous regimen of several therapies for Emily, Elizabeth says that soon became their “new normal,” and she is thriving. 

 

 

 How is Emily doing today? What are your hopes, dreams, and goals for her as she grows?

Emily is doing amazing!  She will be four on June 1st and stays home with me (I have a small, web-based business, so I work from home).  Right now she receives Physical Therapy in-home twice a week.  We have had the same therapist since Emily started therapy at three months.  She has been with us and watched Emily grow, and her support and encouragement of Emily has been crucial.  In addition to the PT twice a week, she has aquatherpy once a week, hippotherapy once a week, Speech/Articulation once a week, and Occupational Therapy once a month.  Outside of therapy, she takes swim lessons once a week and we attend a music class weekly.  She is your typical three-year-old: she loves everything Disney – all the Princesses, Mickey Mouse, you name it.  She loves pop music and can identify the song [and] artist in almost a note.  She has wonderful manners, and is super easy-going and friendly, just genuinely friendly all the time.  When we go out, she walks right up to people and says “HI!  What’s your name?” Inadvertently, she is helping break down that person’s judgment of her – many are able to look past her disability, and see her.

She is going to run her second kids’ dash at the Disney Marathon on January 12 and is super excited about getting a bib and a medal!  She has been practicing running in her walker, but honestly she’s already quite speedy!

And of course, our biggest news is, she is the cover model for the February issue of Parents Magazine.  [My sister and I]  are runners for Team Spina Bifida – you fundraise for the SBA, and in exchange they support you in a race: a half or full marathon, triathlon, etc.  So when Parents Magazine reached out to SBA in October, looking for kids interested in appearing for a photo spread including kids of all kinds, SBA reached out to us.  Emily and I headed to NYC for the shoot in October.  It went very well, and two weeks later, Parents e-mailed us, asking that Emily come down and do a cover try!  We were blown away.  We have never even had a family picture, any kind of professional pictures!  We have never even done pics of Emily at JCPenney or anything!  Emily had a blast on set; she asked for Lady Gaga to be played and she had everyone dancing away.  Everyone at the shoot was super professional, yet fun and inviting.  It was an amazing experience for Emily, and I have to say one of the best experiences for me: to watch Emily be photographed for the cover of a mainstream magazine was overwhelming.

What made this so important to us is they were not doing a story on spina bifida.  This is a mainstream parenting magazine, the first of its kind to feature a child who happens to use a walker, or crutches, on the cover.  Emily isn’t on the cover for special needs; she isn’t on the cover because they are taking about SB.  She is on the cover because she did awesome at the first photo shoot and they saw beauty in her, true inner beauty.  And in addition to the print copy, she will be on the cover of the tablet version, and she is the banner on the FB Parents page.  Any other places where Parents is, that image will be [there], like [on the] Parents Pinterest page, for example. [Check them out on Twitter, too!]

In addition to the cover, I did a brief interview with the Editor-in-Chief, Dana Points. That video is on their website and may also run in the tablet version of the February issue.

And there was a brief interview with Ellen Seidman, who blogs for Parents and has is the author of the blog Love That Max.  It’s my understanding that there will be an inverview with Dana Points, the Editor in Chief at Parents, about the shoot on Ellen’s Love That Max blog on Monday.  Here is the article from the Parents website.

I haven’t received the February issue as of yet, but there may be a photo inside the magazine as well, of Emily doing a Valentine’s craft.  But I don’t know for sure (I’m dying for my copy to arrive!)

We have the same goals and dreams for Emily that we had before we even conceived her.  We want her to be independent, confident, strong, and happy.  We expect her to go to college, get a job she loves…and if she wants to be a pastry chef, a teacher, a doctor, a musician, a writer, a businesswoman – whatever she chooses as her path, we will stand behind her and support her.  During the Parents video interview, Dana Points asked the same question…what are our hopes and dreams?  I stopped for a moment and looked over at Emily, who was dancing away, having a truly glorious time.  And I thought about how dark things had been the day we heard her diagnosis, and how uncertain I had been of what her future looked like.  What a blessing, to have trusted things would be okay.  Even though I have no idea what her future holds, I am excited to be part of the journey.

 

 

What do you feel is the most important thing that a new family welcoming a child with SB needs to know? What do you wish you had known/been told when Emily was born?

Get a great support team: get your child into Early Intervention as soon as possible, and make sure you have a service coordinator who will listen and fight for you.  Get a great team of therapists and don’t be afraid to ask for a new one if they aren’t working with you or setting the bar high for your child.  Look into whatever programs you can get to help cover costs: Medicaid waivers, SS [social security], grants, etc.

Trust your instinct as a parent and fight for what you want for your child.  We learned this very early in Emily’s life.  Often professionals will tell you what your child needs, but you have to question their value system, and see if their recommendations match your family’s goals.  When Emily was about one, we wanted to get a loaner-stander to bring her upright.  It was our belief that her cognitive development would be enhanced by being off her stomach or back on the floor.  When we approached the Ortho[pedic surgeon] about it at clinic, he shot us down without reviewing Emily’s medical file, without examining her.  He told us we needed to come to terms with her diagnosis, and accept she wouldn’t walk.

This was unacceptable to us.  We had fully accepted that she may not walk – but never would we allow someone else to tell us she couldn’t do something.  Instead, Chris and I believe in giving Emily as many tools and therapies and technology as we can, and letting her show us what she is, or isn’t capable of.  We promptly changed orthos, and perused the stander through other avenues and had her in a stander within a month.  We now drive out-of-state to see [the] ortho at Shriners in Erie, PA.  They treat Emily as an individual, and work with us as parents.  As you can see from her pictures, she is proficient with her walker, and the same goes for her crutches.  And, on October 23rd, during physical therapy, she turned to our therapist and said “Don’t help me!  I will walk all by myself,” and walked across our family room, wearing her AFOs [leg braces] but completely unassisted.  While she will need the use of her walker or crutches when walking to preserve her hips and knees, we couldn’t be prouder of Emily for establishing what she can do.  She defines spina bifida; spina bifida does not define her.

 

Blissful Emily. 

 

A big thank you and much love to Elizabeth and Emily for allowing me to publish their story. I recognize that every parent of a child with spina bifida has a unique story to tell, one that is theirs and theirs alone. I will be forever grateful to them both for opening up to me, and to all of us. They’re indeed making this world a better place– by making spina bifida “normal.” 

 

Love,

Laurita ♥

 

**Publisher’s Note:  This post is in no way sponsored by or affiliated with Parents Magazine. All photos used in this post are owned by Elizabeth Keicher, and have been published with her consent. 

Parent & Down Syndrome Activist Eliana Tardio Shines Brightly

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

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

 

Above photo courtesy of ElianaTardio.com

 

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

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

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

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

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

 

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

 

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

 

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

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

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

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

 

 

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

 

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

Ms. Tellado Goes to Washington: LATISM Invites Me to Historic Event

In the nearly three years since Holdin’ Out for a Hero was born, my firstborn blog has been fuel for me to step up and challenge myself. Many times it has fueled me, in turn, to challenge our policy makers in Washington, D.C., and ask them burning questions, such as what exactly is the Congressional Spina Bifida Caucus doing?

Never in my wildest dreams could I have imagined that, less than two years after I wrote all thirty-six caucus members, I would have the opportunity to pose these questions– not on Capitol Hill, but at the White House. 

 

:)

About three weeks ago, at the very beginning of my multi-country vacation abroad (more about that coming very soon!), I received an E-mail from Latinos in Social Media inviting me to apply to attend the very first LATISM Top Blogueras Retreat in Washington, D.C.– with the promise that, if selected, I would be able to attend a policy at the most famous house in the country!

It was such an honor to be selected by LATISM to be among 70 blogueras from all over the nation.

If I am to be honest with you all, since this E-mail reached me while I was on vacation, and the event was literally a day after my jet-lagged return, I did not think I would be able to make it. While I thoroughly enjoyed my adventures in Italy, Morocco and Spain, in the back of my mind was the stress that I needed to figure out how to get there.

I need not have worried! Where there’s a will, there’s a way. :)

 

The front of the Executive Office Building, where all of the revolutionary action during the briefing took place. 😉 Photo credit: Melyssa Mendoza

 

Before we could even dream of being invited to La Casa Blanca, a lot of hard work and coordination had to take place. The team that made this unprecedented event possible included LATISM founder Ana Roca-Castro, LATISM Vice Chair of Marketing Elianne Ramos, LATISM board member and Director of Federal Government Relations at McDonald’s Corporation Sylvia Aguilera, Latina Bloggers Connect founder Ana Flores, Todobebé Founder/CEO Jeannette Kaplun, Las Blogueras founder Yoly Mason, Jennifer Lubriani of FHI 360 and so many others I know I’ll fail to mention.

Less than two years ago, I remember all too well my increasing frustration as each day passed and I didn’t get a reply from any caucus members. What amazed and inspired me is that all of us who were selected for this truly humbling honor arrived at the Executive Office Building with a common purpose– to hold our government accountable.

So, on Sunday most of us arrived, and we were immediately welcomed that evening at a reception in the lobby/lounge of the Hotel Helix.

 

Elianne and me. She's truly an hermana to me, one of my LATISM besties! 😀 (Photo credit: Blanca Stella Mejía of MiCaminar.com)

 

We were welcomed by an amazing team-- Cheryl, Ana R.C., Ana F., Elianne, and Jeannette!

 

During the retreat we were well-fed, nurtured, and loved on by the LATISM ladies crew! It must be said– LATISM always goes above and beyond anyone’s expectations.

Jennifer, Cheryl, Ana, Jeannette, Yoly and Elianne!

 

This all could not have been done without the support of the event’s sponsors:

  • Johnson & Johnson
  • Procter and Gamble
  • Mary Kay
  • Southwest Airlines
  • Univision
  • Comcast
  • McDonald’s
  • Fleishman Hillard
  • Babble.com
  • Macy’s
  • Porter Novelli
  • Consumer Reports

On Monday, after a morning of some serious workshopping and inspiration, we headed off to 16oo Pennsylvania Avenue to make history for Latinas everywhere! There, in the Executive Office Building, we were briefed by top officials in the areas of education, health, and jobs.

Well, look who's all freakin' excited! 😀 (Photo credit: Rachel Mátos for Latina Bloggers Connect)

At the podium with Eliana Tardío (at the microphone) and Lisa Quiñones-Fontánez. They are both such great role models, and an amazing support to me! I love you both.

 

Throughout the briefing, many blogueras were allowed to pose questions or concerns at the podium. It was incredible and awe-inspiring to see and her Latinas from all over the nation (and also representing a vast array of Latin American countries) voicing their ideas and opinions in the nation’s capital.

Indeed, the most emotional moment for me was when I stood up before these White House officials with my fellow blogueras (and hermanas!) Eliana Tardío of ElianaTardio.com and Lisa Quiñones Fontánez of AutismWonderland.com. Together, we addressed our concerns in the areas of education for children with special needs, and I voiced my disappointment at the lack of response from the Congressional Caucus on Spina Bifida. (While this was the legislative branch’s, and not the executive branch’s fault, my several letters to the President and the First Lady have also gone unanswered. Besides, why would I pass up the invaluable opportunity to make my voice heard!?)

With the revolutionary Elisa Batista of MotherTalkers.com and MomsRising.org. Talk about a powerhouse! (Photo credit: Papi)

 

With Viviana Hurtado of TheWiseLatinaClub.com, who is also a member of NAHJ. She's got such a wealth of knowledge of politics and policy!

What this event taught me, above all, is that, while is it useful to have goals, you can’t really set an expiration date on a dream. For me, the dream that was fulfilled on May 21st has been several years in the making– even long before Holdin’ Out for a Hero was even an idea that popped into my head.

So many of the people at this event this week believed in me and knew I would get to the White House someday– long before I fully understood the power I harness as a Latina blogger.

I’ve often quoted the saying “It takes a village to raise a child.” LATISM and the hermanas I’ve met along the way have all been such an integral part of my “upbringing” as a blogger and social media enthusiast, but also as an activist.

So, thanks all, for being part of my village– and for allowing me to be a part of yours.

I'm the luckiest chica in the world to be part of such a fabulous sisterhood! (Photo credit: Miguel Tellado-- Papi)

You can see more photos of this historic event at my Flickr album. Also, don’t forget to check out this wonderful recap published on the White House blog– I’m quoted!!  

Ladies, please feel free to share your recap posts using the linky widget below! I look forward to many great reads. 😉

 

 

Love,

Laurita ♥