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

 

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.