Guilt, forgiveness, and surrender.

I’m part of a Facebook group of moms with babies born around the same time, who also have Down syndrome.  Today a discussion came up about prenatal testing, termination, and getting a diagnosis before vs. after birth.  Well, I went and stuck my foot in my mouth there, carelessly saying something that made some other mothers feel judged about their decision to do the prenatal tests.  I profusely apologized, and all is well I think, but I got to pondering… why had I done that?  I couldn’t stop posting to that thread, my urge to keep letting out these stream-of-consciousness thoughts would not stop. What was that???

Mother guilt.  Awful, irrational, inescapable mother guilt that I am just starting to face.  

I know every mother has it.  I must say, however, that my experience of mother guilt before LP came along seems rather mundane now.  Losing my temper, letting them watch too much TV, inconsistent expectations, poor role modelling… all important, but pretty par for the course.

Like I’ve already said, when we began thinking that LP had Down syndrome, I cried.  A lot.  I think everyone just assumed I was scared, or worried.  Yes, that is all true, I was.  There was a pretty dark thread that wove through the moments of those early days, however, that I didn’t really talk about.  The same thought kept slipping in and out of my mind… What would I have done, had I known the baby I was carrying had Down syndrome?

When we started trying to make the first tater, Latke and I discussed prenatal testing, and pretty quickly decided that we were not interested in it; we could not terminate a pregnancy based on any screening or diagnostic test.  Really, though, I guess that many couples do not think this through to its full end.  I know some do.  We weren’t one of them.  We never fathomed that we would ever have a child with any kind of health issue or disability.

Fast forward to five years and three children later, there we were, with a child who most certainly had Down syndrome.  In a flash, all of my emotions unraveled into flutter of threads, tangled and messy.  One terrible idea kept coming back.  I wished we had never been the no-testing-for-us-thank-you couple.

A part of me thought, maybe if we had known, we could have terminated our pregnancy and this would have never happened.

Even as I nursed my baby, changed him, and felt his tiny hand grip mine, I felt the certainty of my bad mother status.  What mother would ever entertain thoughts of not wanting her child?  The child who was living, in her arms, needing love and care?  I even briefly considered adoption.

I think the time it took me to create these thoughts in my brain was no more than a few seconds.  A few seconds to send that dark thread, weaving, turning, twisting into every other idea in my mind.  Once there, I couldn’t tease it out.  I tried.  After I had no more tears to cry, I still tried.  That dark thread kept twisting, strangling everything around it.

I need to cut that thread.

Had I known about LP’s Down syndrome, I fear that I would have ended his life.  After we started suspecting that LP had Down syndrome, I came to a dreadful realization.  An untold number of women undergoing prenatal testing stand on a precipice, literally holding the life of their children in their hands, having been told (by our culture and possibly even their doctor) that they may have sick, disabled children with no future.  I know without a doubt that the great majority of those women have no idea what Down syndrome (or any number of other health and genetic conditions) really means, and that whatever stereotype they had was likely untrue.  Despite their greater risk of developing some serious health issues, most children with Down syndrome will learn to speak, read, and write.  Many will live independently.  All will be thinking, feeling, loving human beings who enrich the lives of those around them.  I’d like to think that I would have made the right decision (for me and my husband), and kept going with our pregnancy.  Latke and I talked about it the other day, and very honestly thought, even with all the fear, we could not have undergone a late-term abortion; I just don’t think I could after feeling my baby move and knowing they could sense me, hear my voice, even taste the same food I ate.  But I can’t know that for sure, and that… it is a pretty messed up trip into mother guilt purgatory.

I have no idea what it is like to do prenatal testing, or even decide to terminate a pregnancy; that is nothing for me to judge.  I believe that no one, even another woman, can judge those decisions.  But… I know myself.  I know that had I chosen to end my pregnancy, I might never have found a way back.

DSC_0217Motherhood is strange.  I feel guilt for a decision I never even made, or even contemplated in a genuine way.  Maybe I let myself think those things because I knew I was safe from having to make that decision.  My baby was already here, ready or not.  There I was, thinking the world was ending, consumed by ideas that were not and could not become real, only to discover that the world is fine.  Better than fine.  It is amazing.  And still the guilt.

As women, we have this awesome power to bring life into the world, over which we are in total control, but to which also completely submissive.  Do men feel this?  Is it just me?  All I know is that on the other side of that guilt I have found an amazing kind of surrender.  Watching LP grow, learn to smile, to live, has dragged me out of that darkness and set me afloat.  I can never know what would have happened had I known about LP’s diagnosis, but I will be grateful for what not knowing has started in me; beginning to surrender myself to my own children.  I think these imperfect, yet perfect, little beings will teach me all I need to know to bring them through the world, as long as I listen.  I’ve heard many times that motherhood changes you forever.  I’m getting it.

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3 Comments on “Guilt, forgiveness, and surrender.”

  1. Lisa says:

    So beautifully expressed. You know, Finn was the first of my pregnancies that I did NOT undergo any prenatal screenings (even Lilah, my first home birth, I did dual care for the first half of my pregnancy and had a first trimester screening done), and BAM – that was the one which introduced Ds into our family. I never regretted not doing prenatal screening with him – I’ve truly always been so grateful to have not known until after his birth – but for a time I did ponder what would have happened had I known prenatally. I just can’t fathom myself undergoing an abortion – not for moral or religious reasons (I’m pro-choice and atheist), but because I’ve always become very attached almost the moment I get a positive pregnancy test. But of course, I can’t know for sure, and in the end, I’ve just always been glad I was never in a position to have to make such a decision.

    But yes, the guilt. It’s inescapable. For a while I felt guilty that he had Ds – it was MY fault – I wanted another baby, and what business did I have doing that at the age of 40? Then for a while I wished with all my heart that he just didn’t have Ds, and later I felt guilty about that. Now I just feel guilty for being a crappy mom. Sometimes.

  2. Diane says:

    We talked about this earlier, but I just wanted to come back and read this post again. I sit here holding Camden heartbroken over the fact that he may not be here had I done testing. This is something I will never know, and I don’t want to know. I’m grateful for opting out of testing because I couldn’t imagine life without him.

  3. Jenny says:

    I just came across your blog tonight and wanted to tell you how much I have enjoyed reading through your posts. You write beautifully, with a rawness and honesty I so appreciate.

    This post really hit home for me because our son, our fifth baby, was a “surprise” pregnancy. I felt the entire time that something was different, but chose not to do testing. I am grateful for that because I honestly don’t know what I would have chose. I didn’t know a thing about Ds and I am ashamed to say that fear might have led me to make a horrible choice.
    Now he is a bright, happy, beautiful little three year old boy, and I just could not imagine life without him.

    I look forward to following your blog :)


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