People keep telling me that it's "interesting" to hear my perspective on choice, given my situation. I am glad to share. Before I came to be here, how could I possibly have known how I would feel?
While I was pregnant, I learned that my daughter would have Trisomy 21 (Down syndrome) and an atrial-ventricular septal (heart) defect. This was pretty heavy. Although I initially didn't want to have the prenatal screenings (because it wouldn't change anything; we wouldn't choose to terminate regardless – plus, why would anything be wrong?!) I ended up having quite a few.
I declined the quad screen maternal blood test that looks for elevated or decreased levels of this and that. My reasons made perfect sense during the day. But at night I couldn't sleep. Or I awoke in a panic. At night the rational daytime feelings didn't matter at all. So I decided to have the blood test to help myself sleep better. Shockingly (or not) my levels of this and that were slightly out of whack. Because I was 28 years old I had a 1 in 816 chance of having a child with Trisomy 21. The quad screen results increased the risk to 1 in 221. 1 in 250 is considered "borderline" for more testing, so there was still little cause for concern. I agreed to have a Level 2 diagnostic ultrasound but declined amniocentesis – too risky. The ultrasound turned up the heart defect, which is more common in kids with D.S. than in chromosomally typical kids. And a couple other points of concern too: slightly thickened nuchal fold, maybe, and a single umbilical artery. Now the doc put the chance at 1 in 2. 50/50. That weekend sucked. I'll write about it some other time; it's still too raw to explore.
I agreed to have amniocentesis. The preliminary results and the eventual full results came back the same: Trisomy 21.
When we first learned about the heart defect and the increased chance of Down syndrome, my O.B. was very supportive. She made it clear that she would not judge me, whatever I decided. She told me that the day I learned about the heart defect (before we knew for sure about the Trisomy 21) was the last day I could legally have an abortion in Missouri, but that if that's what I decided to do, to come to her. She'd help me find a resource in another state to have the procedure done safely.
I'm saying I – I – I throughout. My husband, Paul, and I were very much in this together. Going through this brought us much closer together as we learned to lean on each other in a way we'd never had to before. We learned every piece of news, attended every doctor's appointment, and made every decision together.
In the end, as we expected, we decided not to terminate. I spent the rest of my pregnancy mourning the loss of the healthy, smart first child I had dreamed of. I spent the months reading about other families in my situation. I spent it crying and coping and learning and feeling a really strange mix of emotions. How could I have felt differently? All I knew was what was wrong with my daughter, not how wonderful she was to be. I love my daughter. She is a gift and a blessing. I expect this blog to be regularly filled with obnoxiously glowing maternal love and pride.
Interesting facts: Over 90% percent of women who learn that they're carrying a fetus with Trisomy 21 choose to terminate, regardless of their political affiliation or previous opinions about abortion. The only women I know who have decided to continue their pregnancies have all been "pro-choice" women, as I was. Most babies with Down syndrome are born to women in their 20's, who often have gone through less prenatal testing.
So, looking at my beautiful daughter and loving her so much, how do I feel now? I am a stronger supporter of abortion rights and a woman's right to choose than I was before.
1) Until you've been in this position, you have no idea how you will feel, how you will cope, what will be right for you and your family.
2) If I had not had the opportunity to choose to have Ellie, I believe that I would have felt trapped by my pregnancy, trapped by this baby that I was scared of. I believe that I would have come to resent her and that would have gotten in the way of loving her and bonding with her as I have.
Almost every weekend there are protestors at the new Planned Parenthood up the street from my house. Only one time have I ever seen a woman picketing. Most of the time, the protestors are men, sometimes with children in tow. This fills me with rage. You don't know. You haven't been there. It's none of your damn business. I would never wish the suffering I went through last summer on anyone. But if one of these men is ever in the situation that my husband found himself in last summer, I think he will begin to see the world very differently. And I hope that he will be surrounded by compassionate people who know that the world is not simplistic. It is not black and white. And that believing that it is so – judging one's neighbors so quickly and so harshly - is a far greater sin then that which they protest so loudly.
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32 comments:
Sarahlynn, very interesting first post on your new blog. I look forward to reading more. - phmnst
Yay, another mom blog! I'm so glad you're blogging!
This has got to be hard to share, but I'm glad you're sharing it. I've learned a lot from you on the Msboards and the Phoenix and look forward to more.
And I love that photo!
Fantastic post...and great writing I'd like to add. You're a brave person to take on that responsibility. I've never been in such a position (still young and unmarried and all) but I can only assume I would know nothing about it until I was tossed into the confusing fray. Also, I completely agree on your position of pro-choice. If there is one thing that angers me more than anything else...it's ignorant, judgmental people who help forget their own life's problems and mistakes by using religion as a vehicle for hate. By the way, I went to Mizzou...and am new to blogging as well. Just started one this week. I plan on reading more, if you plan on writing. Best of luck to you, your husband and your baby.
You write so well and simply and beautifully. Thank you so much for sharing your life with us.
I'm just a stranger who wandered by, and this is an older post... But I just wanted to say that I found this post fascinating, and quite beautiful. Thank you for sharing your thoughts and your experience.
:-) All the best to you and your daughter!
I feel as you do, and like to believe I would make the same choice for myself in the end. But I think it is important to have that choice.
Beautiful post.
Hi, I came came to look at your site because I heard mention of it on a DSA web site. I must say that I appreciate your honosty about this topic. However, I too am a mother of a child with DS. I was 19 when I gave birth to him,my second son, and had no prenatal testing. What a shock it was to all. I have 3 children now and have been faced with the option to abort 2 times. The sadly ironic thing is the 2 times I was pressured to consider abortion the babies were totaly healthy. Once for my oldest child when I was 17 and many peoples opinion was that I was ruining my life. The second when I was 25 with my youngest child because of a suspicion of trisomy 19 or 21 after genetic testing. My stand on abortion has been one of pro-life. My husband and I chose life for our children because we value the sanctity of life in all forms and see it as a gift from the creator himself. This is to say that pro-life women when faced with the same choices you were facing still hold their ground. My guess is that the reason you don't see this is because your largely communicate with individuals who are like minded as many of us do. My husband was also along for the ride all three times and he supported me in my decision and would have never stood by and did nothing watching my life and the childs be destroyed by abortion. I can say this with some knowledge of what abortion can do to women because some of my closest friends have made the choice to abort at one time in their lives. I often wonder how many others like myself have been pushed towards aborting given the legal time lines like you had mentioned and the so called statistics on potential problems with the baby and have aborted absolutly healthy children. This would have been the case in my situation the two times I was faced with abortion as an opption. I too love my children, all of my children and do not regret giving them the gift of birth. I did not know as I had stated before that my son with DS was going to have DS however I do not resent him. I too went through a grieving process after finding out but never once did I resent him for changing me. Over time the opposite is true actually. I am truly happy that you gave your child life also. I wish you much happiness and many blessings in life. After careful review of your site,respectfully, I don't think it is for me. This is the freedon of choice that you speak of in action I suppose. I am thankful for your efforts in bringing attention to DS but pray you do not bring the wrong kind of attention or give the lead people to beleive we parents of children with DS all share your views. God bless
Unsurprisingly, it's only after I open the blog to anonymous comments that I get one like this. I admire courage in one's convictions, but this isn't it.
1) No, actually, as many women who call themselves "pro-life" choose abortion in this circumstance as those who call themselves "pro-choice." The statistics bear this out. Those who want to demonize people who support a woman's right to choose when and if she carries a pregnancy to term desperately want this not to be true, but wishing it does not make it so.
2) You are also making a common mistake (and, I would add, you are utterly lacking in Christian compassion) when you suggest that because you feel a certain way, so too must anyone in your position feel that same way.
3) You are confused about what "pro-choice" means. I too "value the sanctity of life," and I chose life for my child. Being pro-choice does not imply that one is pro-abortion or would choose abortion for oneself.
A leading Eevangelical Calvinist Christian theologian, Richard J. Mouw, recently wrote:
God desires that people freely acknowledge [God's] rule and that they freely offer their lives of obedience to him. Nothing is gained when we impose specifically Christian standards on people who do not acknowledge Godas the ruler over all things.
Hello, it is me anonymous again. I returned to your site a last time out of sheer curiousity of what your reply may be to my oppinion on this topic. It seems clear that you have felt threatened by my opinion and feel the need to be defensive and retaliate. It also seems that you have misinterpreted my comments on my personal life experience as a direct attack on oneself. If you would read my statment with out bias you would see it not as one that condemns one for having had an abortion but quite oppisitly exstends the hand of love and friendship. Fore I too have come to the thresh hold of choice of life and death as I see it but chose to remain true to my own convictions. As you can clearly draw from my story I am not blameless nor have I ever been accused of leading a life of perfection therefore I would never expect anyone else to lead such a life christian or not. I have plainly stated my personal view on the subject especialy as it pertains to abortion due to a baby having special needs. I do not damn one for the choices they make because it is not my hand that tips the scales of justice. Also, I would never assume nor force someone to share my views or convictions on this subject. As the dear doctor you mention just by letting people know their options is not considered coersion. It seems that it is you who condemn people who think different than you by discrediting them and their life experiences calling them cowards if they do not hold your liberal feminist veiws on abortion. I too can quote men of the cloth and most important Jesus christ and his view on life. On the topic at hand I am clearly defined in my stand and do not lack understanding or conviction. This is your own insecurity,dislike of criticism and needing to at all cost prove your point. I can almost insure that you are one of those individuals that have to have the last word in all things said. Just for future reference there is a time to bestill and listen to what is really being said. I am truly sorry that someone who may express an opinion that is different than yours is considered less than yourself in your book. This was never intended to be a battle over abortion rights. This expression was intended to give another view on abortion other than your own and to also say you are intitled to your oppenion, I agree to disagree,and even though I do not agree with all your content I appreciate your effort to bring attention to DS. However, the point was obviously missed by the way you hostily overeacted with harshness and personaly attacked me. Best of luck to you and yours.
By "courage in one's conviction," I mean the strength to stand by what you believe, without posting anonymously. It's easy to say things anonymously; it takes much more courage to own your opinions publically.
1) You deny statistics based on your own personal experience (without showing research to refute actual studies) and call my pointing out the facts "defensive retaliation." Surely you can see how this simply shuts down dialogue.
2) The vast majority of people who call themselves "pro-life" vote "pro-life." If you are not among this majority, it would be helpful for you to include an explaination of your minority position.
Voting "pro-life" certainly does force others to "share your views" by forcing them to live according to your religious beliefs.
That is the ultimate in "discrediting someone's life experiences," by not letting women make their own choices about when and if they carry a pregnancy to term.
Any suggestion that abortion should be illegal is far more than a "personal opinion," as it affects women across the country.
If you do not feel that abortion should be illegal, then on which point do we actually disagree?
I came across your blog from another, and I just want to thank you for writing so personally, openly, and honestly. Wow. I am truly touched by your words, and as a woman who also once made a choice, I thank you for bringing your perspective to the blogosphere. All the best to you and your loving family.
Until you've parented a child with special needs, you're not qualified to use "trapped" as if you're the judge. When we're amongst ourselves, most of us moms of kids with special needs admit to loving our kids passionately. And to feeling like raising them is often hard work. One dad calls parenting a child with special needs "the graduate school of parenting," a lovely concept. Grad school is very rewarding. And very hard. And perhaps not for everyone.
My mother works with the families of children with special needs through a school district. Her experiences with the parents who are unable to cope with their children's diagnoses are heartbreaking, as are our society's failures at helping these parents.
You might find Postcards from Holland: http://HollandPostcards.blogspot.com to be an interesting read, if you're interested in disability issues.
Embryos and fetuses are not five-year-old children, of course.
I know and admire women like the one you know who adopts children with Down syndrome. But you should know that there are no such things as "Down syndrome babies," and most parents of children with Trisomy 21 will be quick to inform you of this fact. We have babies with Down syndrome, and this is not an exercise in semantics. Our children are people first, and they are not defined by their diagnosis.
When someone makes a mistake through ignorance, I understand and do not condemn. But when a person persists in using disability-first language, after having the faux pas explained, that's another story.
You may have your "preference" to speak as you wish, but disrespect for people with disabilities is not welcome on this blog. You're done.
I am a life-long liberal, pro-choice woman who has unfortunately lost friends over the liberal v. conservative argument. I really appreicated your logical, well-thought-out bullet points in your passionate postings (I've been reading/commenting/lurking with you for a while, but just read them for the first time!) It was very interesting to see the polling numbers on the topic of abortion, and the Bible verse rebuttal.
My personality (ENFP on the B-M scale)is such that my arguments tend to be more emotional than logical, so I find I'm at a disadvantage in debating this difficult topic. Thank you again for your compelling, researched and rational writing.
Just browsing and came across your blog on STL Bloggers.
I'm pro-choice and I could not agree more with you. Yours is an interesting perspective and honestly, I don't know that I could make the same choice you did, but it inspires me to think, and hope, that I could.
In college, I took a speech class and we were instructed to choose a topic and present opposing arguments. Although we were asked to stay away from controversial topics, I chose abortion. I spoke pro-life first. I did all of the research, read all of the arguments, and presented them to my class. My professor (who is pro-life)took me aside after class and said that she thought it would be too difficult for me to argue the other side since I was so clearly pro-life. And I told her, flat out, "But I'm not. I'm pro-choice and I have a thousand more arguments to defeat every one that I just presented today." She looked stunned, as if to say "even after all of that research?" and had she said it, I would've said "Especially, after all of that research." But I would like to reiterate a point you made earlier: Being pro-choice does not mean pro-abortion. Why is it so hard for some people to understand this?
Sarahlynn, Wow. What an eloquent post and responses.
I, too, am pro-choice. I tend to associate with other liberal folks, but not all of my friends are. Anonymous, if you are still around, this may interest you.
Two of my dear friends are conservative Christians. Our converstations often turn to religion and abortion. I respect their pro-life stance, but do not agree with it. To me, the life of a fetus/embryo does not automatically trump the life of a woman. A selfish viewpoint? Quite possibly. But it's my belief and I will defend it.
One afternoon we got talking about abortion. We were discussing whether or not abortion should be legal. They both felt that it should only be allowed in dire circumstances - if a woman's life was at risk or if the baby would have defects. One friend mentioned her sister-in-law had terminated a pregnancy after learning the fetus had defects. She admitted she would do the same thing. Yet she judges other women who would choose abortion for other reasons.
When I was pregnant, I decided I didn't want any screening other than the triple screen (which my OB routinely does). Hubby and I decided we would not terminate unless we were in a situation with a 100% chance of mortality or such severe defects the baby would never live a pain-free life. (We ended up having a healthy baby.)
I'm not providing any hard data, only an anecdote. But I hope this illustrates that women who are pro-choice aren't pro-abortion and some women who call themselves pro-life are willing to bend the rules when it comes to themselves.
I just wanted to say that I admire your choice and I wish you the best!
Who knows how I just found myself on your blog; I think through another St. Louis blogger...anyway, I just want to say I'm in awe for how you've stood your ground and re-explained and teased out your positions and done so publicly here. I find this debate still so hot that I can't bring myself to the table. Well done.
I have had three miscarriages, adopted, and then by some miracle, gave birth to my daughter. I refused all testing because I knew I would never abort. I couldn't considering how painful all the miscarriages were. Still, although I would never abort I still stand 100% behind another woman's right to make the choice for herself. We can not let government regulate our bodies, our minds, our hearts. GREAT POST!
I am surprised that you feel that way. I know that special needs kids require a lot of work, but I see downs syndrome children and adults as a special gift that reminds us what is really important in life. The people I have known with downs syndrome have all been very happy people with a fresh perspective on life and I see them as a beautiful gift!
You're surprised that I feel what way? That I'm glad that I chose to have my daughter? That I love her very much and am grateful for every day we've spent together for the past 4-1/2 years? That she's challenged me to grow and develop in so many wonderful ways? What surprises you about that?
Or is it just the fact that I'm glad that I got to choose her, rather than having the decision made for me that surprises you?
Point of order. On this blog, we don't have "special needs kids" or "downs syndrome children."
This is a people-first place, so we have kids with special needs and children with Down syndrome.
Sorry about the language--you are too right. I should have said children with special needs and children with downs syndrome, because I do agree with that.
You asked if I was surprised that you chose your daughter--NOT AT ALL! I was surprised that you, who know how amazing your little girl with downs syndrome is, that you are pro-choice. You don't often see mothers of children with special needs with this viewpoint. (See I corrected my mistake with the language)
Thank you for the language. :)
(BTW, it's "Down syndrome, not downs. No offense, just FYI.)
I understand how and why a lot of mothers of children with special needs are anti-abortion. We do see a threat to our children. With increased prenatal testing and so many people choosing to terminate based on prenatal diagnoses, there will be fewer and fewer babies born with DS, and our children will increasingly be seen as "preventable." Most of us strenuously argue that our children are gifts, blessings, and have lots to offer the world.
I agree that we should work as hard as we can to can to halt and reverse this trend. I just disagree on how we should go about it. (See my "Passionate Post" On Houdini and Abortion for more background.)
Very Good point--we do agree with a lot more than we disagree on! The main thing is that people are educated about downs syndrome and shown that people with downs syndrome are a blessing and should be embraced as remarkable and unique individuals instead of as "disabled people" to be stared at or seen as hopeless! I just found yourblog but really enjoy it and have enjoyed conversing with you!
I have three children, one with autism, so I do understand having a child with special needs. I also intimately understand the issue of choice- quite as well as you do. There were legitimate reasons to consider aborting my child with autism, but I ultimately could not reconcile that choice with the fact of her life. You don't choose to kill living beings who inconvenience you simply because they inconvenience you.
Your logic and reason are concerning this issue is convoluted and insupportable. Sure, flowers and rainbows, golly gee, how wonderful would it be if we all got to choose whether or not to become the parent of a special needs child. The tiny little problem with that, Sarahlynn, is that just as it would have been criminal and unconscionable to kill my 2-year old when she was diagnosed with autism just because *whining* I didn't want to be the parent of a special needs child *self-absorbed pout*, it is criminal to rip a viable fetus from a womb and allow it to die because it is disabled. It is especially immoral to do so when there are families who WANT TO ADOPT these children.
What is your response to the medical reality of killing viable late second and third trimester babies (some that survive the abortion attempt!)?
You have no cogent response, SarahLynn. The only response feminists ever have to the cold hard medical reality of late term abortion, including the issue of surving, viable fetuses, is to obfuscate the issue and shreik victimizingly about being subjected to graphic imagery. Obviously, that does not address the issue.
So, I am curious. How will you obfuscate that issue?
Whew! Convoluted and insupportable! One at a time, then, top down.
1) I'd quibble with your claim that you understand choice "quite as well" as I do, because our experiences are very different and, indeed, one can never truly walk exactly in the shoes of another.
2) Autism is not, of course, a prenatal diagnosis. What constitutes a "legitimate reason" to consider abortion I would imagine to vary greatly from woman to woman. Obviously, some women believe that nonfatal prenatal diagnoses are "legitimate reasons" and I've argued against that choice - in fact, it's one of the biggest purposes (and achievements) of this blog! Others believe that rape or incest or to save the mother's life are legitimate reasons.
3) "You don't choose to kill living beings just because they inconvenience you!" Goodness! Who was suggesting otherwise?
4) I believe that there are significant differences between fetuses [significantly: fertilized eggs, zygotes, morulas, blastocysts, embryos, pre-viable early second trimester fetuses] and two-year-olds. Feel free to read further in my "Passionate Posts" section if you'd like more information on that.
5) I do not support the killing of any babies. I don't know of a single person or group that supports termination of viable second and third trimester babies. In fact, such an act would be, in addition to morally reprehensible, illegal everywhere in this country. (Is this seriously a question?)
In fact, your comment above is so tangentially related to my post that I wonder if you read it at all. Also, I don't believe I know you. This is a very unusual way to introduce yourself to someone new, regardless of how much you agree or disagree with me! Peace, sister.
SarahLynn,
My reasons for saying that I understand choice as well as you do has nothing to do with my daughter's mild autism. Those reasons are none of your business- but your presumptive arrogance is duly noted.
The logic here- and I really am puzzled that you seem to not follow it- is the absurdity of taking a beautiful life due to some kind of disabiity or developmental disorder when such disability is diagnosed prenatally, but not doing so when such disability is diagnosed at a later age. Or, acquired through some kind of accident or illness.
The absurdity of that logic is based on the Achille's heel of the pro-choice position. It is based on the medically meaningless distinction between fetus and baby *at the time most abotions are performed on Down Syndrome babies* which is near viablity.
Did you not hear the word "viable" in my above post, or did you choose to ignore it?
Or do you not understand what the word means?
There is no difference between a viable fetus and a baby. None. The only difference is that people who are pro-choice choose to distort reality by calling an unwanted 28-week fetus a "fetus" and therefore fair game to doctor's scapel crushing its skull, and choose to call a baby they want to keep in the same situation a "baby".
There is no defensible logical position in aborting physically healthy VIABLE fetuses.
What anger you carry!
Your mention of disability above is a red herring. (Especially as I've been very clear here and elsewhere regarding my position on termination based on nonfatal prenatal diagnoses.) Your real concern is about abortion itself, as you state later on: medically meaningless distinction between fetus and baby.
I responded to your concern about viability above. In case you're still confused, here's a state-by-state guide on abortion laws for you. (No state currently permits abortion after viability: another red herring.)
For more details on my position regarding abortion in general, proceed to my post On Houdini and Abortion
Warning. This is a people-first space. We don't have "Down syndrome babies," here, we have "babies with Down syndrome." Read my comments further up this thread for details, but disrespect for people with disabilities is not welcome on this blog.
You said, "What anger you carry!"
Once again, what presumptive arrogance. Being direct is not anger, but obviously, it is you that entails red herrings throughout your response to obfuscate issues. I won't respond to any other distractors you've thrown out there.
Let me make my point more simply. Viability is 22 weeks. Near viability is 16-22 weeks.
While I could be mistaken, amnio is as of today the only accurate method to diagnose Down Syndrome. Amnio cannot be performed in the first trimester. Unless I am mistaken, it is usually performed around 16 weeks.
So when are Down Syndrome babies aborted? Mid second trimester, and most certainly near viability.
As for your attachment with laws concerning abortion, that is meaningless. Is that supposed to be a chart of how old babies with Down's are when they are aborted? No? Then what is its relevance? You may be aware of the maligned efforts of Phil Kline to hold Planned Parethood accountable for failing to test for viability in Kansas City area clincis. The only thing that matters is when these abortions really occur, and that is not at the embryonic stage.
I know you would love to paint me as "just somebody who wants to control your body" or "somebody who is really angry", but the truth is that you are the only person with red herrings that have prevented you from recognizing basic facts of biology.
You have confused and muddled this issue with your talk of blastocytes and embryos, failing to mention that abortions are almost never performed on blastocytes and embryous, and they most certainly are not performed at that stage of development on Down Syndrome babies.
You are mistaken. You are mistaken about the potential methods of diagnosis for Trisomy 21 and when they can be performed. You are mistaken about medical viability of a fetus and how that's determined (not to mention when it's possible to determine). You are mistaken about when most abortions are performed. There are many, many places you can go to learn more about all of this (hint: it helps to check legitimate sources rather than political propaganda) but it's not my job to teach you.
Finally, you persist in using disability-first language when I've requested that you not do so and warned you that disrespect for people with disabilities is not welcome on this blog. You are through.
Wow certainly some passionate people here about this particular post. I am not going to talk about pro-life or pro-choice. That is another matter entirely
I am a person with a life long disability. I may have been aborted if they could have found me out 52 years ago.
The point is that it is totally immoral to abort a foetus, embryo or even a couple of cells purely on the suspicion or even proof that it will be disabled. That is the most hideous kind of disability discrimination. And it is the most hideous arrogance perpetrated by abloids. I purposely use the term abloids to make it sound like a label or diagnosis.
I know many people suffer from their disability but many just plain suffer from the ignorance, selfishness and greed of abloids who think they are the only ones who should be allowed to live.
I know many parents suffer while they struggle to bring up a child with a disability. But to murder a child or foetus because of the selfishness of society which chooses to not provide fully for that child with a disability is not the way to go. We must all fight for equity and fairness in this world.
In addition there is no such thing as perfection. There is no such thing as a non-disabled person. There is no such thing as normal. And thank whoever we need to for that. What a boring world it would be without difference.
Difference gives us opportunities to grow and learn and understand. Opportunities to see another viewpoint. Opportunities for colour in our world. those who run away from those opportunities are seriously missing out.
cheers
Glee
"Difference gives us opportunities to grow and learn and understand. Opportunities to see another viewpoint. Opportunities for colour in our world. those who run away from those opportunities are seriously missing out."
I couldn't agree with you more!
I also agree that the pro-choice/pro-life argument is - and should be - distinct from the morality discussion.
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