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

 

A note to my readers: 

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

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

 

CamelMeme

 

 

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

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

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

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

What a difference four days makes! 

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

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

 

Dear _____________,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That’s all you can really do.

 

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

Laurita

 

To the Woman who Aborted Her Baby with Spina Bifida

 

Dear Woman,

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

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

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

How’s this?

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

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

 

Mami_baby

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

 

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

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

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

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

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

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

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

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

 

Mami_me_crawling

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

 

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

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

It’s Never Too Early #RSVawareness #PreemieProtection

 

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

 RSV_image

 

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

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

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

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

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

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

308131_858042394573_140475221_n

 

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.

 

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 ♥

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.