It’s never over. It never stops hurting. I’m never immune.
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.
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:
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:
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:
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.
When you’re going through life, struggling to keep up with everything that’s going on with you, around you, it can be a real challenge sometimes to remember why you “do what you do.”
Three years and eight months ago, I had the opportunity to meet my new musical “idol,” contemporary jazz singer and songwriter, Spencer Day. I was simply overjoyed to meet him, and I honestly never thought much would happen after that.
I couldn’t have been more wrong.
Since our initial encounter in Clearwater for a jazz festival, after which we talked at length and I briefed him on my campaign for raising awareness of spina bifida, we have remained connected. He knows I’m moving forward, deciding what the next step will be for this cause, and he wants to be there to support it, in any way he can.
Several months ago, the opportunity arose for me to be involved in helping his career, by collaborating with his fan club and promoting events, music, and Spencer’s latest projects on different social media channels.
Out of all the work I’ve done thus far in my life– including past jobs– few things have been as rewarding for me as the experience of being a part of Spencer’s Fan Club Social Media Team. We started as a motley crew, an assortment of people who clearly share a common interest– an enthusiasm for Spencer Day’s music.
About a month ago, a crazy, random idea popped into my head: Hey, guys, why don’t we host a Twitter party for Spencer?
It seemed like a harebrained project to take on, considering I’m always on the go, and everyone is busy during the holidays. But we decided to do it.
Yesterday evening, I hosted, along with Spencer as our guest of honor, a Twitter chat with many of Spencer’s biggest fans, in addition to quite a few people who are new to Spencer’s music. The conversation was lively, informal, and very funny at times! Attendees were encouraged to ask Spencer anything– and they did, and he responded. 😉
As I sipped on my coffee (in my pajamas!) while trying to keep up with the conversation thread, I marveled that such an awesome cyber event could be pulled off in such a short window of time. I also couldn’t help but feel gratitude toward all of the people who participated– even if only for a few minutes during their busy evening.
As a social media consultant, the number of “impressions” or “pageviews” matters. It’s a measurement of quantifiable success, and it’s the most “tangible” evidence of whether or not an online event was a success.
As a person, however, I realized that shouldn’t matter to me.
What mattered is that everywhere I looked in my Twitter feed, I could see familiar “faces,” avatars and usernames of my friends, some bloggers, some non-bloggers, who showed up in support of me– and in support of Spencer.
We also got to reward some of Spencer’s fans and followers! We gave away 5 copies of Spencer’s latest album, “The Mystery of You,” as well as 6 digital copies of Spencer’s holiday album, “If Christmas Doesn’t Kill Me.” It was so rewarding to make people happy by sharing his music!
The report I generated afterwards showed that, in the past week, the hashtag #SpencerDay has had over 1.8 million impressions. That’s not bad at all, considering how many holiday/Christmas parties, family gatherings, business events, and other commitments everyone has going on during this season, that make it difficult to participate in online events.
For a social media consultant, those 1.8 million impressions are the definition of success.
For me, however, it’s those familiar faces, the “avatars” I know so well, that made me feel like a winner.
I’m truly blessed to have so many people who genuinely support and “get” what I do. Even my parents, who years ago found the words “blog” and “Tweet” intimidating, pitched in by Tweeting and making sure I had a hot mug of coffee to help me stay alert. 😉
Yes, it’s true– there are people who might measure success in different ways– by monetary earnings, job promotions, or how many conference speaking gigs they landed in a year.
That’s all good and enticing. (Hey, who wouldn’t want all that?!)
But sitting at my laptop, Tweeting furiously and watching as the stream flowed constantly with new comments, questions, and retweets from people both familiar and unfamiliar, I couldn’t help but feel like the luckiest girl in the world.
Thank you, from the bottom of my grateful heart, to all of you who joined, shared, Tweeted, promoted, and encouraged. Thanks to all of you who had the most awesome things to say about Spencer’s music, whether it was the first song you’d heard or if you’ve been a longtime listener.
Thanks for being there anytime I’ve wondered if I could do something. Thanks for lifting me up.
Thanks, above all, for helping me to keep my perspective.
If you aren’t already following Spencer, please do so here:
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!
That is, without a doubt, one of my favorite, perhaps overused, sayings. But, I’m a firm believer in its veracity.
I don’t think anyone was put on this Earth to “go it alone,” at least not entirely. If you reach out far enough, there is always someone there.
There has always been someone there for me– many people, in fact.
For several years, one of those people has been Tracy Jensen. The mother of five beautiful boys, her youngest, Kumaka, has spina bifida. She and I connected on Facebook a long time ago, and since then, her stories about Kumaka’s strength, resilience and overall sense of adventure and humor have encouraged me during difficult times.
Through all of their challenges, Tracy has remained an exceptional mother, as well as a great encouragement to many families in the spina bifida community.
Many parents might raise an eyebrow and think, sympathetically, (and frankly, a little condescendingly), “I don’t know how Tracy does it.” And I’d be lying if I told you the thought hasn’t crossed my own mind more than once. What is most amazing about Tracy and her family is that they always take the time to support their community and involve their kids in great things. Kumaka is currently following in the tire tracks of the notorious Aaron Fotheringham, a WCMX (extreme sports for wheelchair users) pioneer and truly, the resident badass of the spina bifida community.
While living on the west coast, Tracy and Kumaka also support and encourage Misty Díaz, a runner who has spina bifida and is raising funds to help kids and youth with disabilities compete in sporting events.
So you see, this is a very mutually nurturing community, and our paths often overlap. Now Tracy, the woman who does so much for all our community, needs our help.
She has reached out– this time, across the globe– and fallen in love with a little girl named Sofi.
Sofi is four years old, lives in Eastern Europe, and she has spina bifida.
During the first two years of her life, Sofi was only bottle-fed and was rarely let out of her crib. As a result, her physical impairments are severe, as she has been deprived of achieving several critical milestones.
Still, her sunny disposition are encouraging signs that she will continue to improve, and she now lives in another orphanage, where she is thriving.
But, she needs a family, and a permanent, loving, safe home. And so, Tracy and her family are heeding this little girl’s call for help. They’ve decided to adopt Sofi, and bring her home to the U.S., where they will take excellent care of her, as they have for Kumaka and Sofi’s four other big brothers.
Since August 2012, the Jensen family has been tirelessly raising funds to offset all of the costs associated with Sofi’s adoption– the court fees, travel documents, airfare, hotel stays…the list goes on and on. Indeed, the expenses are astronomical.
The moment that they get to carry Sofi into their home will be priceless. You can’t quantify the value of a family’s love.
This isn’t the first time I’ve shared my thoughts and heartache over orphaned children overseas who are living with spina bifida. All of the challenges that children face in an orphanage environment are multiplied many times over by the severity of the child’s condition.
In Sofi’s case, we know the sky will be the limit for her– once she comes home.
In a classic race-against-time, the Jensens have been presented with the possibility of having her home with them for Christmas, but they can’t do this without our support.
Please take a moment to visit Tracy’s donation site for Sofi and commit to giving $5, $10, $20, $25– any amount will help, and it all adds up.
If you can afford that latte (ironic, since I’m typing this at my local Starbucks!), you can afford to help bring Sofi home.
In Tracy’s own words, “We may be on this journey to adoption because we feel led to bring Sofi home, but you all are on our journey too…you are all part of the steps to bring our girl home.”
I feel privilege to be part of the “village” that wants to help bring Sofi home. From the orphanages of Eastern Europe, to the creature comforts of her new West Coast home, it’ll be quite the journey for little Sofi, but luckily, she has all of us to guide her steps along the way.
It may take a village to raise a child, but it’ll take an even bigger village… to bring her home for good.
This post is part of a sponsored campaign on behalf of Latina Bloggers Connect and the makers of ZYRTEC®.
Let’s face it. Perhaps one of the worst things that can happen to our daily beauty routine is allergies. They give us runny, red noses, puffy, watery eyes and face, and general low self-esteem.
And this applies to all of us who occasionally suffer from ALLERGYFACE™.
I come from a long, proud line of allergy sufferers. My allergy lineage can be traced back three generations!
My Abuelita has always been prone to severe allergies– of every kind. Even a simple activity such as going out in the yard to garden, which she loves, could trigger a reaction that would render her looking like a cooked lobster.
My Mami and I are also sensitive to the sun, though not quite as badly as poor Abuelita. This is why Mami always recommends using sunblock before going out and catching some rays.
Other products my Mami and I both can’t live without are makeup for sensitive skin (concealer, foundation, blush, eyeshadow, etc.)
Also, it’s important to remember to remove makeup completely before going to bed. Even the slightest bit of eyeshadow or eyeliner residue can be enough to trigger itchy, watery, red eyes.
Carmen Ordoñez also features some more great tips for combating ALLERGYFACE™ in her second YouTube installment, “Generations of Beauty Advice.” (Watch it here!)
Also, while beauty tips are fabulous, it’s critical not to forget about the health aspect of this. If you know you are prone to allergies, you should do everything you can to prevent the onset of an episode. Just in case, it wouldn’t hurt to carry antihistamine. (I even carry an epinephrine injection in my purse! It’s better to be safe than sorry.)
Some beauty tips can be more valuable than the most expensive heirlooms. What advice has been passed down in your family that can help fight ALLERGYFACE™?
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.
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.
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.
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.
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.
Yes, I’ve been *quiet* on here for a while. No, my silence is not to be interpreted as meaning that nothing has happened with me. Everything has happened, and I’ve done my best to keep you all updated on the highlights via my Facebook page and Twitter account.
For starters, I turned 26 last month. I didn’t think I would be looking forward to it, but the week before my birthday, my family planned a last-minute trip to Puerto Rico, since we’re not going this Christmas. I ended up staying longer than a week, and ringing in my birthday with some of my favorite ladies!
We didn’t really plan on staying for Thanksgiving, so that was an unexpected surprise, too. While from a tourist’s perspective, this wasn’t probably the most eventful vacation on the island, I have to say, I think I explored Puerto Rico a lot more than I had anticipated. (I will be updating more on that on my other blog, Espresso con Leche soon!)
The highlight of everything was having the unexpected opportunity to spend both my birthday and Thanksgiving, as well as several other treasured moments, with family and close friends. I didn’t realize just how homesick I had been.
After I returned, as I caught up on my Facebook feed, I read posts from anguished parents who are already having to spend the holidays with a child who has complications from spina bifida. That’s always hard for me to read, as I look at everything I’ve been blessed with, and feel unworthy.
But, I realize that the most important thing is to not take any of it– or anyone– for granted.
It is with this thought in mind that I finally caved into the earliest holiday social media trend– by participating in the “30 Days of Thanks” daily habit. Each day, or night, I would post one thing I was grateful for in my life. I quickly found that keeping up with this routine is easier said than done, and I would often have to catch up the following day with two things I was grateful for. But, no matter– there were plenty of things to come up with.
Each day, I posted my gratitude for abstract concepts like “time” and “faith,” or for more tangible (or audible?) things, like my parents, my laptop, and my bilingualism.
On “Day 10,” I thanked my amazing Spina Bifida community! Words truly can’t adequately express just how Blessed I feel that you’re all a part of this journey with me. I’ve learned a lot, especially from the moms, who have given me the gift of a perspective I never imagined I’d have. You’ve all taught me so much about what true sacrifice and devotion is.
And last night– as I sat down to reflect on what I’m grateful for, for the very last time, I realized I wasn’t even close to being finished. But, I did want to end in a way that is open-ended and subject to wide interpretation. I thanked God for my faith, because without it, nothing could have sustained me throughout the challenging times.
I realize that people, events, things, and often even places will let you down, but faith is a steadfast pillar of support, the cornerstone of endurance. So, whether it’s faith in God, faith in the inherent goodness of humanity, faith in the power of something so simple as a smile, I hope you have this and that it helps keep you warm at night, like it has for me.
To the parents who have been Blessed with a child with spina bifida, I say, keep doing what you’re doing, and keep cherishing those wonderful moments, because believe me, there will be more of these if you just hang on.
Thank you all for your continued support, and thank you God for Blessing me with another amazing year of life.
Thank you. Thank you. Thank you.