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.

I Don’t Always Have Spina Bifida

 

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Photo courtesy Macbeth Photography: MacbethPhoto.com
 My life consists of many awesome events…and many funny photos! 

 

 

Yes, I know. That’s quite the inflammatory title.

This is a topic I’ve been reflecting on for a long time. I’ve read many articles and posts on both sides of this argument. I’ve read posts from adults with spina bifida, and parents of children with spina bifida, who say that spina bifida doesn’t define them. 

I’ve also seen the other side of the coin, from parents who say that, indeed, spina bifida defines their children. 

One of the most interesting arguments I’ve heard for the latter point of view is from my friend, Mary Evelyn. Even when I don’t agree with her perspective 100 percent, she always manages to make a very sound, introspective and rational case. I can’t help but agree with her on this– to a certain degree. 

To be sure, even now, in writing this, I am on the fence on this subject.

Mary Evelyn, and all of those who agree with her, is right. To a certain extent, spina bifida will always define me and my life. It’s an integral part of who and what I am. I will never be able to shrug off the years, nay, decades, of how spina bifida has molded me into the person I am. The adult I am. 

But there is another side of this coin, I ardently believe, that deserves equal inspection. There are moments, even days, when I don’t feel like I have spina bifida. 

Do you know what I’m talking about? Whether you have spina bifida or not, perhaps you can relate.

I’m talking about those moments when I’m getting ready to go out, and I’m putting the finishing touches on my outfit– my earrings, my eyeliner, etc. I glance at myself in the full-length mirror, and I see…a beautiful woman. Not “a woman with spina bifida.” Not “a woman who has had several brain surgeries.” Not “a woman who is now struggling with lower back pain on a daily basis.” Not “a woman who has to self-cath every three hours in order to live.”

Just…a beautiful woman. 

When I’m out with my closest girlfriends, and having a glass of sangria or a cup of coffee, it’s not the woman with spina bifida they are out with. It’s the blogger, the social media consultant, the coffeeholic (more often than not), the grammar nazi who is constantly editing other people’s words as well as her own (I seriously can’t help it!).

 

Grammar

 

Other times, it’s the flirt (sometimes) who wants to get that cute server’s attention, or the wise counselor, when a girlfriend is struggling with a problem (I’m really obsessed with analyzing everyone’s problems, including my own!), or the goofball.

 

Goats*That awkward moment* at Disney when you can’t figure out why the goats love you so much…and later on you find the bag of edamame in your purse. -_-

 

 

 

In fact, when I’m among my closest friends, spina bifida is a topic that is introduced very rarely. I think, by this point, most of them acknowledge it in passing, the way you would acknowledge a person’s eye or hair color, or stature.

I’m also just as protective of my friends as they are of me…sometimes I’m the “older sister,” and sometimes they are. It just depends on the situation.

That isn’t to say that I feel ashamed of having spina bifida…but it does make me uncomfortable to be around people who barely know me and already feel the need to pepper me with a dozen questions I might not feel like answering at a networking event. Sometimes, I’ve made an unconscious decision to remove that particular hat for the evening…and that’s okay. I feel entitled to that. 

I’ll always be an advocate for the spina bifida cause. That won’t change anytime soon, I’m pretty sure. I’m committed to it, because I understand it. 

But if I paused to dwell on spina bifida every day, every moment, every second when I’m getting dressed or putting on makeup, or picking out my earrings…well, then, I’d never make it out the door on time.

The Sad Truth About ‘Selfies’ #NaturalDay

Disclosure: This post is not sponsored. I will not receive any compensation for writing/publishing this post. I am writing it of my own free will. All ideas and opinions are my own.

 

I’ve had a lot to say lately on the societal front. And I mean, a LOT. It’s no secret that I’ve always had my major gripes with society, and who can blame me? As a young, naïve, kindergarten kid, it was society that informed me that I was different, and not in a way that would be deemed “acceptable.”

It was children in our society that bullied, taunted, and tormented me, and it was parents of those children in our society that stood by idly, shrugging their shoulders, and letting it happen, while my parents made desperate phone call after phone call to plead on my behalf that they talk to their cruel kids. 

But maybe– just maybe, this wasn’t entirely their fault. Because other parents maybe stood idly by while this happened to them as they were growing up. They learned that some kids are just “born different,” and it’s okay to stand by while they get helplessly picked on because of something in their physical appearance. 

I’ve made some incredible friends in the past four years of being a blogger and online activist. Last night, while flipping channels absentmindedly, I grew bored and decided to join the #NaturalDay Twitter party, hosted by my awesome friend, Nadia Jones, of Justice Jonesie and the Niche Parent Network.

The party’s guest of honor was Sanah Jivani, a girl with an unbelievably remarkable story that I’m ashamed to say I’d never heard of until yesterday.

Sanah was diagnosed as a little girl with a rare disorder that caused her to lose her hair gradually. By the time she was in middle school, which is such a critical time in the human development process, she had lost it all.

The target of teasing and bullying, she decided to take a bold step– she took to YouTube and filmed a short video of her removing her wig.

It went viral. She received many supportive and encouraging messages, and she had found her calling. 

Sanah launched a project called “Natural Day” for today, February 13th. The purpose is to get everyone to go without makeup, wigs, or embellishments for one day. The request is simple, but it sends a strong resounding message about who we’ve become as a society. 

We are all smoke and mirrors. On instagram, we are all about filters. 

It’s sad to realize that, in an age so obsessed with “the selfie,” most of these self-portraits are actually staged– with lots of makeup, perfect lighting, and carefully-coiffed hair. Rarely is there any actual spontaneity in these images. And, as a result, rarely is there ever any truth. 

Watching Sanah’s brutally honest video, I can’t help but wonder what my friend Carly Findlay, an Australian blogger and badass appearance activist, would have to say about this topic. She has spent her entire life living with a condition that she can’t hide from.

In a way that might not be obvious to most, I’ve done something very similar with my body– I’ve tried to hide it. I’m reflecting on a post I wrote in 2011, Standing on My Own Two Feet, which I found excruciatingly difficult to write. 

I remember sitting at my laptop, eyes wide and wary, hands cold and clammy, as I hit “publish.” I remember refreshing my Facebook page what seemed like a million times as supportive comments pouring in.

I remember my eyes welling up with tears as I realized that people love me and accept me for who I am.

I remember feeling vindicated. 

So, for Sanah and so many others, here’s my own selfie. No makeup, hair slightly “done” but nonetheless in disarray. No smoke or mirrors– just me. 

 

 

NaturalDay

 

 

Who knows? If Sanah can do this– reveal her true self, little by little, maybe I can, too. 

 

I never go out without makeup on my face, so for me, let’s just say this is a good first step in the right direction.

Be sure to post your own selfies and videos without makeup and with natural hair today, using the hashtag #NaturalDay! And follow my girl Sanah on Twitter @SanahJivani.

We may be a society that is saturated with images of New York Fashion Week models that are rail-thin and wear excessive makeup and high heels, but we’re all human and we can grow. (To that end, did you see this awesome article in HuffPo about the first woman with a ‘physical disability’ to strut the NYFW runway? Check it out!)

Yes, these are all baby steps, and it’ll take a heck of a lot more than just a selfie or two to change long-held standards of “beauty.” But that’s what’s so fabulous about the internet.

It only has to start with one. 

 

For more of my thoughts on beauty and self-worth, please read “The Woman in the Mirror,” my post on the BlogHer ’12 Fashion Show, which I participated in as a model, as well as “Standing on my Own Two Feet,” which was chosen for BlogHer’s Voices of the Year in 2012. 

 

Love,

Laurita ♥