Saturday, May 4, 2013

No Right to Judge

Recently, I read this and it resonated with me. The author and I have similar backgrounds and I, too, once thought my Republican voting record proved me to be pro-life. For me, it was all about the baby and in my mind's eye, the woman deserved any post-abortive fall out she may experience. 

I've become more moderate about a lot of things in my old age. For one, I look at abortion as a tragedy for both mother and baby. I can empathize with moms who feel trapped by impossible choices. 

I used to virtually stalk a message board on Baby Center that was entitled, "Termination for Medical Reasons." I knew that the number one "medical reason" to terminate a pregnancy is Down syndrome. I was hoping to reach out to an undecided woman and share my story, give her up to date information, and show her that life with Down syndrome is a life worth living. While I did contact many women, very few responded, and, to my knowledge, none chose life. 

I remember reading post after post about the experience and fall out. At first, I was horrified. Because of the lateness of the pregnancies, many of them chose to have labor induced at twenty to twenty-three weeks of pregnancy and to deliver their babies so they could hold them and say goodbye. 

They called their babies "angels" and they grieved deeply.

It took me a very long time to respond with compassion in my heart. All I could think of were those innocent little lives taken at the will of the one who was supposed to love them most. And, I took it personally. If they thought their babies didn't deserve life, then it meant they thought mine didn't either. It stung. And made me angry.

But there is no denying the fact that those babies are at peace and their mothers are decidedly not. 

According to the posts I read, they struggled when they returned to work and someone asked them about the baby. They struggled with the secrecy and having to say they "lost the baby," out of fear of judgment if someone discovered the truth. They struggled with the noticeable pregnancies of strangers and with baby shower invitations and family outings. They struggled with depression and guilt and "what might have been" and loss. 

These women are hurting and that hurts me, too. It's a tragedy, all the way around. A loss is a loss...no matter the cause. It's still hard for me to admit that, but I know it's true.

I get to sit on this side and enjoy my boys. I get to melt into Eon's bear hugs and laugh at Bo's antics. I get to celebrate them and read them stories and kiss them good night. I get to tickle their toes and run their baths. I get to grow old with them. I am blessed.

I have no right to sit in judgment of those who believed the medical establishment when told, "it is for the best"; those who experienced the same fear I did, once upon a time; those who could not imagine the joy and satisfaction in the life I now lead; those who convinced themselves it was the best decision for their baby.

Those left simply with an ache and not a child.

They are victims and, while I know they so desperately wish to think themselves heroes, victims they remain, bound to a choice they made during an unbelievably vulnerable and terrifying time. While I mourn for their children, I mourn with them, too. 

A follow-up to this post can be found here.

21 comments:

  1. I am one of those mothers from the TFMR board.
    I am at peace in my heart and always have been.

    I've not struggled with secrecy, all my friends and family know.

    The medical establishment I dealt with were completely unbiased and gave me literature about Down syndrome. It was my real life experiences with people with Down syndrome that resulted in the decision to end my pregnancy, it wasn't an easy decision but it was well thought through. I know that I made the better choice for my baby given our personal circumstances. I also continue to have contact with young adults with Down syndrome on a daily basis, I find that work very rewarding.

    "These are victims, while I know they so desperately wish to think themselves heroes, victims they remain, bound to a choice they made during an unbelievably vulnerable and terrifying time".

    I don't think of myself as a heroine or a victim. Isn't this a tad contradictory? Isn't the quoted statement steeped in judgment?

    You are correct about one thing though, you have no right to judge anyone.

    All the best to you and your family.

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    1. I'm glad you are at peace, though I have a difficult time believing that you always have been. I would think that the loss of a child would bring anything BUT peace, regardless of circumstance, especially early on.

      I am pleasantly surprised that the medical professionals you dealt with were unbiased. Unfortunately, your experience is not the norm. Many of my friends in the Ds community who decided to CTT, experienced pressure to terminate, some of it subtle and much of it overt.

      You say that you have not struggled with secrecy. I wonder if the family members of the young adults you work with know or even the young adults themselves. While I can look at your loss with compassion, in all honesty, I would want you very far away from my boys. I am just being very real, here. I only want people pouring into them who fully believe that they are worthy of LIFE, regardless of circumstance, people who are FOR them, regardless of the cost. Can you understand that? They are my heart and I cannot risk subtle bias or prejudice against them from someone who is intending to help them. I hope that makes sense.

      I think you misunderstood the heroine/victim thing. You stated that you made the better choice for your baby, I'm assuming to the detriment of yourself. It was a recurring theme on the board. Most women stated they were willing to undergo the grief process so that their babies wouldn't have to "suffer". Sacrificing oneself for another is a hero, in my book, something that came up again and again. When I used the term victim, I simply meant a victim of loss or tragedy. Anyone who has lost a loved one is a victim of that loss.

      I do have the right to judge an action as wrong. We are all given that right and that ability. It's how we make choices. I believe abortion, terminating a pregnancy, is wrong. Where it gets tricky is trying to separate the person from the action. That's where I am now. That was the point of this post.

      Thank you for your comments. I hope I clarified a bit without ticking you off completely!

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    2. I would say that initially I was in shock and yes I did grieve, I think that is a given for many people; this was the time between my anatomy scan and receiving the FISH results. However, once I found out the diagnosis, the choice became clear to me. Had the markers not come up at the anatomy scan then I could have been a mother with a birth dx, just like you. The full results showed a second chromosomal anomaly which only confirmed our decision and gave me greater clarity, I should add we got the full results post termination. I don't expect you to be able to understand that I found peace early on, it's easy to make assumptions, but I think it is great that we can have this dialogue here.

      As for secrecy, well where do you draw the line between your work life and your personal life? For example I've never announced the fact that I suffered physical and mental violence at the hands of my ex husband for a period of 5 years, these events had a detrimental effect on who am I now. So why would I announce yet another life event that is personal to me to the cohort I work with?

      I can understand you wanting certain people around your children, however just because I chose to TFMR does not mean that I think your son's life is not worth living or that I would be biased towards him. Now I know here you will think that is contradictory but it's hard for me to explain, I'm actually a very compassionate person. I also work with young adults with moderate autism. You might be surprised to learn that parents actually advocate for their teenagers to be in my class, or that I was nominated for Teacher of the Year. I actually work damn hard to push my students as far as possible, offer them meaningful and rewarding activities in a safe, welcoming learning environment.

      I'm so glad you touched on only wanting people pouring into them who fully believe that they are worthy of LIFE, regardless of circumstance, people who are FOR them, regardless of the cost. That was one of my main concerns because I've seen so many incidents where this is not the case. The hard truth for me was that I was not going to be around to advocate for them when they needed it most. Can you understand that?

      Thank you for clarifying what you meant by heroine/ victim, if you had explained that initially I would have been able to follow. So I wouldn't necessarily deem it my lack of understanding. Regardless though, I am glad you are progressing on your journey through life. You may never understand or be able to empathize with a path different from yours but this post is certainly a start.

      The choice for me to terminate my pregnancy is simply my choice. I think it is fantastic that there are people who continue with a pregnancy, and also empathize with the families out there who do find their world turned upside down when initially being told of a birth dx, my empathy comes from my understanding that they too want what is best for THEIR child. I applaud those of you that do adopt, although I am curious to know why the majority of people adopt young and adopt from outside the USA, especially when I go to the NDSAN website and see a list of older children in need. I wonder what the statistics look like.

      Oh, and you didn't get my back up with your response but I certainly rolled my eyes a few times reading your initial post.

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    3. Thank you so much for responding! First of all, I did not get a surprise birth diagnosis. I had a 1:20 odds given markers on the anatomy scan & my age. Plus, he had significantly shorter femurs than our other kids while still at the very low end of normal. We chose not to pursue further testing due to the slight risk of miscarriage with amnio. So, while it was a shock at birth, it wasn't really a surprise. If that makes any sense at all.

      I certainly understand wanting to be around and worrying that you won't be to advocate for your child. Of course I worry about that too, but I would rather have them HERE and not advocated for than not here at all. I don't think that the worry that they may be harmed in some way should outweigh their very lives.

      As for adoption, the reasons are as varied as the families adopting. BUT, the need is greater outside the US. Orphans are DYING in other countries because of severe neglect and abuse. Conditions are deplorable. I will never criticize someone's choice of a child for which they opened their home and their heart. I am just thrilled that they did! It is not easy.

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  2. If you're so happy with your life and choices, why read a board about termination? Your boys need your full attention.

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    1. Oh my heavens, it's been YEARS since I visited that board. Now, with 8 kids, I barely have time to go to the bathroom! It's sweet of you to worry about my boys, though. ;)

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  3. Hi, Tara. An interesting, provacative post.

    I have a few questions:

    1. Can you say more about the impulse to "stalk" the TFMR board?

    You mention that you reached out to some of the mothers, so one reason was sharing your experiences as a mother of a child with DS. We can infer that you wanted to reassure the women, and hopefully prevent the termination of their pregnancies.

    Are there other reasons, ones more specifically about **you** as a mother who declined further testing and chose to "wait it out"?

    What did you hope to learn by exploring others' experiences? What did you learn about yourself and about your own decision-making process? What did you learn about yourself as a woman, mother, patient, wife, citizen, daughter, and Christian?

    What similarities did you recognize between yourself and the women of the TFMR board?

    2. From your experience reading the board, do you feel that most women who terminate after a prenatal dx of DS are misinformed and guided by outdated, even false information?

    Is it your opinion after reading the board that many or most women who choose to tx feel pressured, either overtly or subtly,by the medical establishment or family?

    In your opinion, do you feel that mothers would terminate their wanted pregnancies based on real or perceived external pressure from what amounts to strangers in white coats? Is it your opinion after reading the board that they would end their pregnancies without fiercely, exhaustively, and independently pursuing all information available and making their own conclusions?

    3. Why did you feel that women who chose to terminate after a prenatal dx felt that **your** beloved son "didn't deserve life"? Do you feel that the women who tx really believed their own "angels" didn't "deserve" life? What leads you to phrase your conclusion with those particular words?

    Do you feel that women who tx **unwanted** pregnancies for **non-medical** reasons also believe that their "fetuses" don't "deserve life"? Do you feel that those non-medical abortions suggest that your other children "don't deserve life"? That children in general "don't deserve life"? That the women's own living children, present and future, "dont deserve life"?

    Why did the TFMRs for T21 seem like a personal judgment about **your** child? Why did someone's choice based on her own situation and ethics seem to speak toward you and your son? What led you to believe that? Can you say more about the complicated projecting of feelings here?

    Did you also feel that your decision to not test/CTT were perceived by those who tx as a judgment upon them? Why or why not? Can you speak more about that?

    4. After reading the board at length did you feel that women continued to mourn and suffer indefinitely? Was grief distinguishable from regret to an outside lurker? What--if anything--did you learn about women coming to a point of acceptance and peace after time? Did you find that women, despite their deep trauma and chosen loss, eventually came to a place of healing and understanding about themselves and others?

    Thanks for considering my sincere queries.

    On another note, congratulations on your new arrival! Welcome, Bo! It sounds like Eon, Bo, and Keturah make a terrific trio! Enjoy your blessings!

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    1. Holy cow! That's a LOT of questions! :) You will have to be patient with me. It's going to take me awhile to get to them...probably in a new post.

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  4. Tara, this post really resonates with me. Although, as you know, I'm not Christian, and am pro-choice, the issue of abortion has become an increasingly complicated issue in my mind. I wrote about it here if you missed it: http://www.lisamorguess.com/2013/04/05/life-choices-and-down-syndrome/

    Really thought-provoking article you linked to, as well. I think I'll share it.

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    1. Thanks, Lisa! I will check it out. It is becoming increasingly complicated to me, as well.

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    2. Just read it. Amazing post! Thank you SO MUCH for the link. I cannot wait to read the book. :)

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  5. I have a unique perspective as both a mother who has given birth to a beautiful "typical" baby girl nearly 18 years ago who was adopted by a family that I chose for her (a mother in name only...) and as a mom to two other unplanned children, one who happens to have an extra chromosome and who, according to the medical community, should not have been able to be created in the first place. I am staunchly prolife. However, I don't sit in judgement of ANYONE. Does the fact that so many parents make the decision to abort a child with an extra chromosome like Liddy's break my heart? You bet. Especially considering that I live with a tiny little girl who is absolute proof that the things those parents are told are mostly wrong. I know this because we were told most of them ourselves, by doctors, by family, and by friends. Watching my girl prove all those stereotypes wrong, watching her capture the hearts of even the staunchest disbelievers, has been one of the greatest pleasures of my life. And because of the joy she has brought into my life, she has changed me...irreversibly... for the better. I'm sad that so many parents miss out on that. Has it been hard at times? Yes. Without a doubt. But those difficult times have made every day even more special, even more cherished.
    I don't think that the fact that you spent time "stalking" the boards, looking for a mama to be who was wavering, is negative. I think it simply shows that you love your children unconditionally, that you see clearly their value and worth, and want others to experience what you have found..that Ds isn't some dreaded disease, or something to be feared, that a life with Ds is still a worthy life. That's all any of us want. :)
    Best of wishes to those who have made the decision to not walk in our shoes, those who have chosen a different path. My prayers are with you always.

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    1. Thanks, Heidi, for chiming in!

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  6. Great post Tara!! Very honest, very sincere and very real. I also appreciate all of your replies.
    btw, this is Renee, Lucy's mom. I don't know how to make it post my name. LOL!

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  7. Well said Tara. I use to read those boards too, hoping I could somehow help. But instead I felt angry and tore up and, very judgmental. And that has no place in my heart as a follower of Jesus.

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  8. Great post Tara! We had a very similar discussion in our small group Bible study this past Thursday! Love you!!!

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  9. When my son was born, I found myself reading both the TFMR board and the DS Pregnancy board all the time. I wondered which category I would have been in, if I had known. We had similar odds to yours (1:19 with quad screen), but opted out of invasive testing. (If I were pregnant now, I would almost certainly do the MaterniT21 test). I think the hardest thing for me in reading the board was reading about women of faith who chose to terminate and were wrestling with how to reconcile genetic differences with a loving God, and how to make sense of the choice they made and their committed beliefs. It was scary because I would look at my son and wonder, if had known, would I have made the same decision? I am a Christian, and I am thankful that I didn't know, because I wouldn't have wanted to be in that position. And now, of course, I look at my child and can't imagine life without him, extra chromosome and all.

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  10. I looked at that termination board not long after my daughter with DS was born. It was just so painful to read through those stories. I took the DS terminations very personally. Those women aborted their child because it had the same diagnosis as mine. My first thought was, what does that mean they think of MY child?

    My attitude has changed since then. I no longer take the decision to terminate as a personal affront to me or my child. At this point, all I know is that I can't claim to know what those women were thinking or feeling without walking that path myself. I do feel like I can empathize with some of what they went through. Like them, I was given a prenatal diagnosis of DS and in that moment I fell into a place of overwhelming fear and grief. I'm sure many of the fears I had are the same fears that lead some people to terminate.

    I don't think these women see their children as undeserving of life. I think they want to protect their children. That's how I felt. I wanted to protect my baby. I was afraid that she would suffer because of the DS. It's that idea of "suffering" that gets tricky. Some people believe that Down syndrome always equates to suffering. Of course, I think that's far from the truth, but I would never say that DS doesn't have the potential to cause suffering. I know a family who lost their 14-month-old to a complex heart defect after enduring multiple (I think 7) OHS's. I know a 4-year-old who has been fighting a long arduous battle with leukemia. These children have suffered and so have their families. Their stories are real and deserve to be counted and not dismissed as outdated misinformation from some eugenic-driven medical establishment. At the same time, I know the families of these children would argue their lives are very much worth living. They would be outraged at the thought of their stories being used as justification for termination. But these are some of the worst possibilities that I feared for my unborn daughter. I can understand a mother doing everything in her power to avoid the same thing happening to her child if she felt the odds were too high.

    That's really what it comes down to. The odds. Becoming a parent is a gamble. You can never predict how your child's life will turn out. Throw in modern-day prenatal testing and the stakes are raised even higher. All I knew was that my daughter had this diagnosis and there were all of these "potential" things that could come with it. There was no way to predict what it would mean for her both in the short-term and the long-term. So, I walked up to the betting table and placed all my chips on my hopes for the best case scenario, whereas the women who terminate place their chips on their fears of the worst case scenario. Whether their decisions were misguided, that's not my place to decide. I can’t just assume they were given outdated information or were pressured by their doctors. I don’t know that, I wasn’t there. I only have my own experience to draw from. No one in the medical field tried to sway me in either direction.

    I choose to believe that I made the right decision. That is the attitude I need to have in order to be the best advocate for my daughter that I can be. I choose to focus on the things that she can do rather than what she can’t do. I relish every snuggle and giggle. I keep my expectations high and look to the future with optimism. It is a matter of attitude. I imagine the same is true of those who have terminated. They choose to focus on the potential DS "horror stories" so they can move forward and find peace with their decision. It’s just the opposite side of the same coin. But I can only speculate about their experiences. My perspective on life has changed in a way that was only possible through raising a child with DS. I’m sure terminating a pregnancy would change a person’s perspective too. But I haven't walked in those shoes so I can’t fully see things from that perspective.

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    1. Thank you for your response. I was the other side of the same coin you were on. I had a T21 diagnosis, as well as other anomalies that were likely not compatible with life. I've leaned pro-life my whole life, and this experience changed everything. I'm not quite sure what camp I reside in now, but I feel like at that moment, I made the best decision for my daughter. And you're right, NO ONE knows what it's like until they walk in those shoes. Many blessings to you and your daughter.

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  11. I just want to let you know that although I terminated my 13 week pregnancy for T21, I don't and have never given much thought about the women who choose to continue their pregnancy with the fetal diagnosis of T21. What I trust is that you made the right decision for you and your family ... if you have a faith based religion as a factor in your decision to carry to term I also respect the freedom of religion.

    I simply AND I SPEAK FOR ME AND ME ONLY (not you or anyone other woman) couldn't in good conscious bring a child into existance (outside the womb)who would later become an aging adult with Down syndrome based on my own situation related to age and existing support system.

    I work in the healthcare arena and have seen and witnessed the lives of numerous children, but mostly adults with Down syndrome. From this experience I have seen firsthand various treatment to include neglect of these individuals ... my main reason to bring this up is to let you know that I have been around and caring for people with Down syndrome for 20 years.

    I'm sorry that you had to feel like you had to visit the TFMR board to "save" women and in your own religious right being some sort of hero if you were able to persuade a woman to change her mind. Sometimes you have to let go and let God.

    I'm sorry that you don't trust women and their own ability to make difficult judgments and personal decisions for their own family knowing that their choice was well-considered with careful thought. I've known many women who have TFMR for T21 and if they met you and your children would only treat you with kindness and grace, never passing a moment's judgment on your independent decision to carry to term.

    I don't expect you to ever see a woman's side of deciding to TFMR for T21 and I wouldn't want to begin to convince you that it's the decision that many women feel is the right one for them.

    I'm sad that you took it personally when other women TFMR for T21. I can tell you that none of them ever meant to offend you or look down upon your own life decisions to raise your children with Down syndrome.

    I think one of the greatest things we can all be reminded to remember is loving your neighbor as yourself.

    All of the New Testament teachings on interpersonal relations follow from Jesus' commandment, "You shall love your neighbor as yourself." When Jesus was asked which of the commandments was most important, He replied,

    The first is, "Hear, O Israel: the Lord our God, the Lord is one; you shall love the Lord your God with all your heart, and with all your soul, and with all your mind, and with all your strength." The second is this, "You shall love your neighbor as yourself." There is no other commandment greater than these. (NRSV, Mark 12:26-31)

    God bless you and may your children bring you much love and joy throughout the years. I can sincerely see that you love your children without a doubt and they are lucky to have you as a caring mother.

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