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.

This Week’s Rundown– Keeping Spina Bifida “Relevant”

Perhaps the toughest challenge I’ve faced in the past nearly two years of Holdin’ Out for a Hero is keeping the spina bifida cause relevant. This not only means keeping it at the top of my feed on Facebook, on Twitter, and on other social media sites. It also means I have a hard time finding new and different ways to write about what I write about that will keep both you, the reader, and me, the writer, interested and engaged.

It’s especially frustrating whenever I realize I’ve missed a key opportunity to promote the cause. Some days, it feels like the public just isn’t ready to learn about spina bifida!

Me at the UCF KnightWalk for Babies this year sporting two of my most defining items: my SBACFL T-shirt-- and my laptop. ;)

 

There are those days when I wish I could hand people a pair of special binoculars through which they could see the world through my eyes— and truly experience life with spina bifida, even if only for a few minutes.

These thoughts weighed heavily on my mind as I heard of my little friend Chance’s back-to-back hospitalizations for shunt malfunctions this past week. He had just returned from the hospital after his sixth surgery when his mom, Amanda Kern, noted some strange symptoms in her baby boy.

He ended up having to go back in for two more surgeries. I thought about and prayed often for their family, as I have come to know Amanda and care for each of them. My heart hurt to “watch” them go through all this. Fortunately, Amanda is very efficient at keeping all her friends and relatives updated!

Chance is now back at home, and Amanda has been witness to yet another miracle. She visited Mary, a woman I met at the SBACFL playdate recently. When I met Mary, she was very pregnant with her third child, who was diagnosed with spina bifida. I can now announce happily that Mary’s son, Mason, has entered the world.  He is currently in the Neonatal Intensive Care Unite (NICU), so I ask that we all keep him and his family in our prayers. Still, it looks as though Mason is off to a beautiful start.

So, to bring it back to my earlier frustrations: how do we keep spina bifida relevant? Well, people might sometimes ignore a 24-year-old who’s aging out of that stage where people still feel compelled to take action on my behalf. But we can’t ignore the children. Look at them. They are the next generation of the spina bifida community, and they’re going to need all the support they can get. With prevention methods being highly publicized, and quality-of-life issues being swept under the rug, they need someone who will fight for them.

I believe this is the first time I wore my "Redefining Spina Bifida" T-shirt. I was at the Salvador Dalí museum!

And it’s not just Mason and Chance. It’s Lina, the young woman who desperately needs a kidney. It’s Masha, the little girl in Russia who yearns to find a family in the U.S. who will take care of her and love her like any other child. Often people will see or read about these stories and not connect them to the spina bifida experience. But, it exists. People like us are out there. We’re not last century, before folic acid consumption. We’re today. We’re NOW. 

To help keep the spina bifida cause  even more relevant, please donate to the Spina Bifida Association of Central Florida’s Walk-N-Roll fundraiser! Help me reach my goal of $1,000 so that this organization can continue making a different in the spina bifida community.

 

Love,

Laurita