I’m Catching a Ride to #Hispz13 with #ToyotaLatino!

 

Yes, it’s true. Once again, I’m heading to the Hispanicize conference in Miami! Only this time, *I’m shifting gears* and “catching a ride” with my friends over at Toyota.

Although this will be my very first time partnering with Toyota for anything, I daresay we’re both entering uncharted territory here. As their first blogger sponsoree, I’ll be setting a precedent for future bloguer@s interested in partnering with this amazing automotive brand.

 

 

My assignment: to be the official correspondent for Toyota during Hispanicize! Oh em gee!  

I’m unbelievably excited about this opportunity, and my mission is to meet and interact with as many people as I can during the week, to find out what they’re up to, and also to share with attendees my experience traveling to the event in a Toyota vehicle (which will be announced later!).

Of course, the second part of my mission is to absorb as much Miami culture as I can, because I love that city. I wish I could live much closer to a town with such a flair for all things Latino. So, I will be doing my part to share with you as much as I can of the sights, smells, sounds, and flavors of Miami! To get the full experience, please be sure to stop by my other blog, Espresso con Leche, where I’ll be elaborating on my culinary, musical, and all-things-cultural perspective of Miami!

Also, during the conference, I’ll be Tweeting from two Twitter accounts: @Laurita86 and @EspressoYLeche, and I’ll be using the hashtags #Hispz13 and #ToyotaLatino. And…don’t forget to follow my friends over at @ToyotaLatino on Twitter, and to “like” them on Facebook

I want to give a very special shout-out and gracias to Janice Lusky Greenspan of PRecise Communications, and to my dear, longtime amigo, Javier Moreno, for making this all possible. 

I also owe an overwhelming amount of gratitude to Hispanicize founder and CEO Manny Ruiz, who invited me to moderate a session called: “Blogs with a Cause: Meet the Bloggers Devoted to Social Good” panel on Saturday!

I’ll have the honor of introducing some amazing movers and shakers in the social media sphere:

I simply cannot say enough about these women to actually do justice to their labors of love. You’ll just have to wait until Saturday. ;)

Above all, I need to thank Godseriously. You have Blessed me so richly and abundantly, more than I could ever possibly deserve or imagine!

To all of my friends looking forward to learning more about entertainment, technology, social media, and marketing– ¡nos vemos in Miami!

 

;)  Laurita

Your Journey: Who is Riding Shotgun?

Disclosure: This post contains affiliate links, which means that if you click on one of the product links, I’ll receive some compensation.

 

They say the journey is as important as, if not more important than, the destination. It sounds cliché, but you know what? I believe it.

As the new year kicks into full swing, I can’t help but reflect on how much has changed– and how much my life has changed– since springs past.

Spring is supposed to be a time of “renewal” and “change.” In reality, every season of every year can bring changes, good or bad.

Although I no longer have a designated spring break per sé, this past spring break was quite the memorable one, having been named one of La Prensa’s Mujeres Destacadas (Outstanding Women) in the Central Florida community earlier this month. I will be eternally grateful to those who have supported me, encouraged me, and advised me throughout the years. But I also need to take a moment to reflect on how I’ve managed to help myself, because personal growth has been such an important factor in the equation of my life.

Overwhelmed with joy at receiving the “Young Leader” award during La Prensa’s Mujeres Destacadas ceremony, alongside some pretty amazing women. The most amazing of all, Mami, is to my left. :)

 

If someone had told me five years ago that I was going to become a blogger, I would have laughed in their face. Hard. I didn’t think I knew how to “do the social media thing.” What I really wanted to be was a traditional journalist– in either  print or television broadcast media.

I remember in 2008, attending a ceremony for a journalism scholarship I received from the National Association of Hispanic Journalists. I couldn’t believe I had been selected for such an honor. It was completely unexpected. That trip to New York City in March proved to be one of the most memorable spring breaks of my life, as I shared that moment with my family.

Fast-forward to five years later. I have a lot more confidence than I used to at that time, and I realize now that people are often really seeing me, and not my spina bifida. To me, that is just amazing, after a lifetime of fighting to be seen and heard for my own merits, and not my physical traits.

 

Carrying a lovely floral arrangement during the NAHJ Scholarship Gala in 2008, in New York City.

 

That Saturday evening in March, when I stood up in shock to receive the Mujeres Destacadas award, I marveled at how it had all come to pass. As I looked around the room, I saw many faces I recognized, starting with my mother’s. My family has been with me through all the vacations, the road trips, the plane rides, and yes, many a spring break, whether here or elsewhere.

I realize now that it really doesn’t matter where you’re going, or what you’re actually doing on the journey. We each have our own personal journey, and what matters is who chooses to ride shotgun with you. ;)

 

 

**Disclosure: This post is sponsored by Britax (follow on Twitter) and I will be compensated. I am a member of the Britax Latina Advisory Board. All ideas and opinions are my own.

 

 

Help Keep a Hero Moving Forward

A few days ago, a longtime friend of mine, Julie Harley, reached out to me and told me about a contest she entered for her daughter, Ruby. Ruby has spina bifida. Ruby also has been diagnosed with autism.

As a mom, Julie spends a lot of time, energy, and love making sure Ruby and her sister have the best quality of life possible. I remember several years ago, the first time she contacted me through Twitter. She seemed like most of the fabulous moms I know– worried, anxious about the future, often frustrated with the lack of resources or knowledge in the community.

A precious moment between Julie and her daughter, Ruby.

 

Julie is not like most moms, though. She might be like most moms in the spina bifida community– strong-willed, determined, compassionate, and activist-minded. She also isn’t afraid to share even her family’s most vulnerable moments, in the hopes that their story will help others.

One of the greatest challenges Ruby went through recently was when she had to be on a strong antibiotic for an infection. As a result, the prolonged use of the antibiotic resulted in her contracting C-Diff, a dangerous infection that is very difficult to get rid of.

In addition to her daughter’s own challenges, Julie has struggled through back surgery and multiple knee surgeries, making it hard for her to lift 75-pound Ruby into their current van.

Now, she needs the support of her community– our community. She has entered to win a custom wheelchair-accessible vehicle so that she can continue giving beautiful little Ruby an amazing life!

Normally, I know I don’t write posts like these. But, I have come to care so strongly about the Harley family, as they are a true example of people who are always smiling, no matter what they’re going through. I have nothing but admiration for all of them!

And while Ruby is indeed the focus of this contest– the little heroine– there is no doubt in my mind that she inherits her courage and resilience from her incredible mom.

Please, take a moment to visit this link, and vote for Ruby. It won’t take up more than 30 seconds of your time, but it will be life-changing for Ruby and her family.

 

Love,

Laurita ♥

Britax B-READY Brightens the Fabric of Child Safety

Disclosure: This post contains affiliate links, which means that if you click on one of the product links, I’ll receive some compensation.

 

The first month of a new year generally ushers in the promise of great, significant changes. There’s an idealistic, staunch resolve to make the upcoming year better than the previous one.

The second month of a new year usually serves to prove the first month is a moot point, as a typical slacking-off ensues and the peak of enthusiasm and motivation of January eventually plummets and plateaus.

Not so for Britax, however. The child safety company has spent the start of 2013 hard at work on improving their products and making them better and more efficient.

 

A Britax B-READY stroller in Mossy Green, one of 3 new colors. 
 

To that end, Britax is also committed to making their products more fun, which is why they unveiled some new colors that their B-READY strollers are sporting this month. In addition to the colors that are already available, customers will also have three new shades of fabric to choose from:

  • Mossy Green (pictured above)
  • Slate Gray
  • Bright Copper

 

“Our fashion selection strategy involves more than just changing or mixing primary colors,” explains Michelle Davis, director of fashion design at BRITAX. “At BRITAX, we draw inspiration from fashion research, listen carefully to our customers, and then bring colors that appeal to a parent’s sense of style. Together, these three new colors complement our evolving, fashion-forward stroller line.”

But the “chic” strollers feature more than just a keen fashion sense. The B-READYs boast three key safety measures:

  • Foam-filled rubber tires
  • Four-point suspension
  • Can hold up to 55 pounds

These features will ensure that, whether it’s a 6-month-old or a mobile toddler that’s riding in their own set of wheels, baby will be cruising comfortably– and safely.

Perhaps safety is the one thing all parents can agree on, that never goes out of style.

 

–Laurita :)

 

**Disclosure: This post is sponsored by Britax (follow on Twitter) and I will be compensated. I am a member of the Britax Latina Advisory Board. All ideas and opinions are my own.


10 Things About Me That Might Shock You

Okay, I really, really didn’t want to have to do this. Don’t get me wrong– I think some people’s naiveté is so gosh darn cute!

But lately, I’ve seen an onslaught of “disability is so-frickin’-inspiring” stories that have made me roll my eyes and, sometimes, want to log out of my computer for a while. :(

So, whether you’re ready for it or not, here’s the truth– the brutal truth. Granted, some of it may upset you, but I’m okay with that.

 

1. I don’t cry myself to sleep at night, lamenting that I have spina bifida. 

I hate to break it to you, but most nights, I crash into bed and sleep, non-stop, for eight hours or so, after either blogging till the wee hours of the morning, or watching a funny video or doing something else that helps me unwind. So do many of my non-spina bifida peers.

 

2.  I drink. 

Yep. I don’t mean the “stumbling-out-of-Walgreens-at-3-a.m.-after-buying-a-cart-full-of-junk-food-and-tuna-fish” drinking, but yes, I drink socially. I always drink with trusted friends, or family members around. I never put myself in situations where the person I’m riding with has been drinking. That’s just not cool.

 

3. I don’t just automatically become BFFs with everyone who has spina bifida, like me. 

It just doesn’t work that way. I love connecting with others with spina bifida, of course, and many people do befriend me after visiting my blog. But I don’t necessarily “click” with everyone who has spina bifida, and that’s fine. It would be like saying, “all Latinos have to get along,” or “all African-Americans have to get along.” Are you kidding me? What century is this?

 

4. I have many friends who don’t have what is perceived as a “disability,” and we have a great time together. 

I’ve been blessed to meet people at so many different events and conferences. Most of them have very different characteristics, and you can’t lump them into one category. I love that! When I meet people for the first time who only know me through blogging/social media circles, I am often struck by how insignificant my “disability” is to them. It’s because they met me online first, without seeing the wheelchair or other things that people might otherwise see first. They value me for my qualities, and I value them for theirs. We have intellectual conversations. We have inside jokes. We have a true bond.

 

Coffee = Bliss. :)

 

5. While romantic love would be nice, I don’t necessarily seek out people “just like me” as potential partners. 

Yep, it’s true. Believe it! I don’t aspire to a “matchy-matchy” relationship where my partner has spina bifida just like me. I look at intellect, personality, common interests and future goals as criteria for potential partners, and not their physical abilities/disabilities. I expect the same from a potential partner, too. I don’t want to be disqualified because of a perceived “disability.” It’s always a mystery why certain couples are attracted to each other. I don’t think I’m supposed to question why “some opposites attract” and others don’t. Please, don’t question me, either.

 

6. I can open doors, tie my own shoes, go to the bathroom on my own, fix myself a sandwich, etc. etc. 

While my cooking abilities are still questionable (LOL!), I do a lot of things for myself, on my own. And I’m still learning. Aren’t we all?

 

7. I can probably out-spell and out-edit you, or anyone you know. 

Writing is my thing. Spelling and grammar are also “my things,” I suppose. Name the time and place. Chuck Norris and I will be waiting.

 

8. I use a wheelchair part-time, when needed. And hardly ever inside the house. But I can dance like nobody’s business. 

I’m not talking Gangnam Style here, but I like to think I can salsa dance circles around most people. :D

 

9. I suck at giving directions. No seriously, I can’t find my way out of a paper bag. 

During road trips where my father asks me to read a map, I usually toss the map away and reach for Google Maps on my iPhone. Siri is becoming my best friend, a.k.a. navigational device.

 

10. I don’t just think about the spina bifida cause 24-7. There are so many wonderful causes that deserve my attention. 

I love social good, and I have a feeling that I live for social good. Whether it’s through a blog post, a Tweet, a Facebook update, or a donation, I enjoy supporting many different causes. I feel strongly about supporting LGBT rights, charities that give to the poor, the homeless, the hungry, and organizations that help children and adults with different chronic conditions. I think social media provides us with some of the best tools ever to support and spread the word about great causes. It’s awesome, because social media makes it easy for us, so we don’t have to choose just one cause to throw all our support to.

 

 **Bonus Tip/Fact: If you ever need a favor from me, try bribing me with coffee.

Nine times out of 10, it works. And the other 10 percent of the time is unaccounted for. I just made it up. ;)

 

 

We Never Walk Alone

The past few weeks and months have been a time for me to reflect and once again reevaluate the state of the spina bifida cause.

During my Christmas vacation, I was honored and humbled to find out I had been chosen as one of Voxxi’s Top 6 Latina Health Bloggers of 2012! I am still very excited to be sharing this honor with a few of my bloguera friends.

Shortly after the holidays, I was paid a visit by some very special friends. I had never met Elizabeth Keicher and her daughter, Emily, who I blogged about not too long ago. During their stay in Orlando to participate in the Disney Marathon, Elizabeth and Emily visited me, along with Emily’s grandma Bernadette. It was an experience that I think, can only be conveyed through pictures. Even those won’t do it justice.

 

In the three-plus years, I’ve been blogging, I’ve never had the opportunity to be visited by one of the readers of my blog from out-of-state. Over the years, I’ve also kept up with Emily’s amazing progress, as she now walks using a walker– and can outrun most of us!

As soon as Emily ran up the sidewalk to greet me and my parents, I felt a wonderful, powerful connection to her, like we were already family. :)

 

 

Oh wow…I’m so happy here. *Bliss.*

While posing with the now-famous magazine cover and the model herself, I was rewarded…

Sweetest. Kiss. Ever. 

 

My favorite. We’re playing in my room. Em’s expression is priceless!

 

Impromptu tea party. Kinda messy for invisible tea. ;)

 

Another favorite…Mami and Emily. ♥

 

With some fabulous ladies! Bernadette (Emily’s grandma), Emily, and Liz, Emily’s mom.

 

I feel so blessed that my family was able to meet Emily’s! Hopefully someday, we’ll be able to repay the visit to them in New York.

With the new year, came big reflections on what I want to do with Holdin’ Out in the near future. The topic of clinical depression came up during a conversation with a friend recently, and we both agreed that depression, whether in young people with spina bifida, or in any person, is worthy of attention.

The public deserves to know that people with spina bifida have a much greater incidence of this than most of the population. How I choose to educate the public about this still remains to be seen. But one thing in the past few months that has encouraged me is this simple truth: whether with spina bifida or without, or another challenging circumstance, we never, ever walk alone. We always have someone we can turn to and talk to.

For me, the motivation and encouragement I receive from others in the blogosphere has been just as uplifting as the love and acceptance I receive from the spina bifida community.

To this end, I’m happy to report I’m consciously making an effort to get out from behind my laptop more, to reconnect with people who care about me, and to nurture my social life offline. I really need this, because, while I feel blessed to connect with many of you, it’s often not enough to just chat on Facebook or Twitter.

Thinking about my much-earlier post, “It Gets Better for Us, Too,” I realize now that it’s not enough to want to get better. You can’t will it to happen. You have to make it happen. 

You have to surround yourself with a community, a village. But you can.

And…it does.

Teachers Insurance Specialists Florida Caters To The Hearing-Impaired

 

Longwood, Florida (PRWEB) November 27, 2012–

The insurance agents at Teachers Insurance Specialists Florida announce the launch of their new Video Phone, phone number and the addition of their newest Florida insurance agent, Amber Evans.

Teachers Insurance Specialists can now cater to the hearing-impaired with the use of their new phone number (407-268-6364) and with Amber’s expertise in communicating with hearing-impaired individuals. Amber is fluent in sign language and is hearing-impaired herself.

“There are not many Florida insurance agencies that cater to the hearing-impaired. Insurance can get complicated. By offering a hearing impaired phone number and having an insurance agent on staff who can effectively communicate with those who are hearing-impaired, we can cater to this niche consumer,” says Simone Baldwin, Exclusive Agent/Owner of Teachers Insurance Specialists Florida.

Florida residents can rely on Teachers Insurance Specialists for their auto insurance, homeowners insurance, life insurance and retirement planning needs. Teachers Insurance Specialists Florida consults with clients over the phone and in person. Residents who are educators and non-educators throughout the State of Florida can seek insurance coverage with Teachers Insurance Specialists. For more information, please call 407-622-6634 or visit online at http://www.teachersinsurancespecialists.com

 

Disclosure: This is not a sponsored post. I was not compensated for publishing this post. All the wording and graphics were provided by Teachers Insurance Specialists. In short, I’m just helping to get the word out. Amber Evans is also a fellow member of the spina bifida community. 

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. 

The Family Who Christmases Together

Disclosure: This post contains affiliate links, which means that if you click on one of the product links, I’ll receive some compensation.

 

Growing up, I embraced my biculturalism– that is, that of being Latina and living in the U.S.– particularly during the holidays. And why wouldn’t I embrace it? For starters, Latinos tend to extend the Christmas season through at least the first week of January, ending on Epiphany, or “Three Kings Day.”

Being an only child, I looked forward to spending many of my Christmases with my extended family in Puerto Rico. Cousins, aunts, uncles, and grandparents filled the house, as did food and music, and lots of love, laughter and mirth.

In the past few years, it’s getting increasingly difficult to spend Christmas as a family. With airline ticket prices skyrocketing, and also because I wanted to spend Christmas Day this year somewhere “chilly,” my family opted not to visit Puerto Rico for la Navidad.

That was hard, but I don’t regret it. My parents and I made a roadtrip with stops in Charleston, South Carolina and Charlotte, North Carolina. We spent two nights in the historic Charleston, made notorious by the Civil War, before heading up to see our dear friends in Charlotte.

This is to say, we spent the greater part of Christmas week riding in a cramped SUV, stopping multiple times along the way, yearning for any weather that was at least a few degrees colder than Orlando– which was not hard to find.

I stayed up late Christmas night, watching the classic, maybe even cliché “It’s a Wonderful Life,” with the fireplace flickering away in our pre-Civil War room in the bed and breakfast in Charleston. I can’t imagine a more idyllic way to spend the night that has been immortalized in so many black-and-white classics.

The following day, we met up with our friends, who cooked for us and showered us with love and attention. We even celebrated my birthday– again!

My family has never been one to find a tradition and stick with it– except perhaps for our fly-by-the-seat-of-our-pants style, as we demonstrated by not booking anything in advance. (It practically gave some of our friends a heart attack!) We march– or rush frantically– to the beat of our own drum, making our own last-minute plans along the way.

Whether it’s an American-style Christmas Eve with the fireplace crackling, or a Puerto Rican-style Noche Buena with coquito and pernil, and música, we make it special in our own way.

What never changes is our sense of solidarity, and our desire to make Christmas a time we spend together, even when we’re apart from most of the family.

I guess that’s where I get my belief that the family that Christmases together, does indeed stay together

 

Love,

Laurita ♥

 

Love,

Laurita ♥