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.
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.
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.
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.