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Monday, June 11, 2012

A Mother's Choice


I became a mother at the age of 19. I had been married for only 5 months to my Marine when we found out. I was terrified. But quickly, I fell in love with this little life that was growing inside of me. How could I not? At about 4 months along, we made a move 3 hours north. So, with no friends or family nearby, I spent my days preparing for this new baby that seemed to pop into our lives out of nowhere. At 7 months, I went in for a regular check up with my OB, she measured me and said she was referring me to a maternal fetal specialist because she thought that my measurements may be off. She told me that they would do an ultrasound and check things out. All I heard was “ultrasound”. We had not yet learned the gender, so I was ecstatic to have the chance to find out. I knew nothing about measurements or what ones that were off could mean. After about an hour long scan, we were told that our baby was a girl and that we needed to come back in two weeks. I don’t even remember the explanation they gave us for the return visit. I was so na├»ve. At the second appointment, we were told that our baby had a big head (if you saw my husband, you would understand why I never thought this was a big deal) and that would probably need a c-section to deliver. I was a little confused when the specialist requested us in his office after our scan and gave us the “all clear”. I had no idea that we were ever not “all clear”.

Between our first daughter and our last child, a son, I learned a lot. As you’ve read before (if you’re a regular reader), I did a research paper in 2010 on abortion. The things that I uncovered shook me to my core. A few months into my research, I came across an online support board, Terminations for Medical Reasons. The stories that I was reading were not the kind of things most people would expect to see when reading stories of abortion.

You see, when most people think of someone having an abortion, they envision a young girl sneaking into her local Planned Parenthood, hidden behind dark glasses and baggy clothes. It seems despicable that a young girl would be making such a life changing decision without her parents knowing, and even that she would be partaking in such dangerous adult actions. They hear the word “abortion” and they think: irresponsible, careless, heartless, murderer. But beyond that, people aren’t giving this conversation much thought. The pro-life side is imagining these young girls leaving their local clinics relieved, and in good spirits. But no one is thinking about the devastated women who are sitting inside of those walls. For some women, this option is no “choice”. As a mother myself, I can sympathize. My daughter starts to wobble on her bike, and I immediately have the instinct to dash towards her to catch her before she falls. My son skins his knee, and seeing him cry is enough to put me in tears. My youngest son stirs in the middle of the night, and I am on my feet and beside his bed. It’s a mother’s instinct to protect her child. So when a mother goes in for a routine ultrasound and her doctor starts throwing words at her like Spina Bifida (a spinal defect),  Arnold’s Chiari  (a brain malformation), myelomeningocele (where the spinal cord and back bone do not close before birth), and enlarged ventricles, a mother goes into protective mode. This was the case for Carol and her daughter, Nora.
Carol went in for her anatomy scan at 19 weeks, 1 day. As she lay on the exam table, watching her sweet baby girl, she had no idea that in a matter of minutes her doctor would come in and inform her of his devastating suspicions. Just a few days later, at 20 weeks, her doctor confirmed the suspicion that Nora had Spina Bifida. How does anyone digest such news? Carol and her husband decided to terminate the pregnancy out of love for their baby girl. What kind of life can a child have under such circumstances? The termination took place at 21 weeks, 2 days. As ironic as it may sound, Carol’s experience was one of the best that a woman in this situation could hope for. She was able to terminate at a hospital in Detroit, with no protestors and compassionate healthcare professionals.

Other mothers, like Nicole, aren’t so lucky. They have to face angry protestors, which only make the act of letting their child go even harder. And one has to wonder, how is it possible for someone to judge another so harshly when the situation is one such as this? Nicole’s baby, Hannah, was diagnosed at around 20 weeks with Trisomy 13. In cases of Trisomy 13, a patient (in this case, Hannah) has an additional chromosome 13, which can cause problems in development such as heart and kidney defects and more than 80% of children diagnosed will die within the first year of life.
Nicole describes her situation as “cold”. Unlike Carol’s hospital experience, Nicole was sent to a clinic and forced to share a waiting room with girls who were there to terminate unwanted, unplanned pregnancies. She even described some as “happy to be there”.  And on top of the uncomfortable waiting room and protestors, the care she received from the staff was lackluster, at best. It is interesting to note that Nicole’s cold experience took place just 4 short months ago. Women are still receiving this heartless, disconnected kind of care.

For some reason, the pro-life side sees these cases (terminations for medical reasons) as no different as a woman just deciding that she doesn’t want to be a mother. And while I am about as pro-choice as they come, the situations are drastically different. You have one woman (or girl) who has an unwanted pregnancy and needs to end it. And you have another who has tried for this baby, wanted this baby, and loved this baby since day one. These mothers are choosing to live in pain every day for the rest of their lives so that their sick babies won’t have to. As a mother myself, I look at these women with complete admiration. How brave would a woman have to be to make that choice? How would you go into that decision knowing that people would judge you so harshly, that your family and friends may not approve, and most importantly, that you would be losing this little part of yourself? I read these women’s stories and the only thing that comes to mind is “selfless”.

In closing, I cannot imagine being in this situation. I’ve had my own scares with each of my pregnancies, and each time, it felt like my world was crumbling…but everything always turned out to be alright. These women don’t get the “all clear”. They get a terrible decision thrown in their faces: carry your sick baby to term and watch them suffer and/or die. OR, terminate your pregnancy and spend the rest of your days trying to heal. Neither choice is easy. Neither choice is black and white. In fact, there seems to be a gray haze over the entire issue. It is a terrible decision to have to make, but one that needs to be made. And it is an option that women and their families need to have. No one ever wants to have to use the option, but everyone needs it in place. To expect women to carry pregnancies to term that may have devastating effects on their own health, their marriages, their finances, and even their other children is wrong. That is the one simple thing about this debate. It is wrong for a woman to not have the option. 

29 comments:

  1. As I've said elsewhere on your blog, this isn't the entire story when it comes to terminating pregnancies that will result in a disabled child. Many people with disabilities like Spina Bifida lead very fulfilling lives. The question "What kind of life can a child have under such circumstances?" is profoundly ableist. It spreads the idea that those with spina bifida are suffering so much that they are better off dead. Defending reproductive rights does not confer the right to mischaracterize the lives of people with disabilities in this manner.

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  2. Of COURSE, I am not saying that a child with a disability is better off dead. But you have no idea what the individual circumstance is. You don't know if this child would end up suffering for a short time before dying. And if so, is carrying that child to term that most humane thing to do? I'm not sure who you are, if you are a mother...or even if you are a parent. But it is clear that you have never experienced such a devastating diagnosis. It is true--many people with Spina Bifida lead very fulfilling lives, but again--with ANY disease, that is not always the case, unfortunately. Again, I will say that I am NOT "pro-abortion", but I DO support a woman's choice to choose. A choice based on the child's INDIVIDUAL condition, her ability to handle such a thing, the strain it may or may not have on her marriage, whether or not it will devastate the family financially, and of course...other siblings that may be involved.

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  3. Don't you think those of us who actually live with disabilities count as having "received such a devastating diagnosis?" Most of us enjoy our lives despite our disabilities. Do those assessments not "count"? The only valid assessments about disabilities can be made by the non-disabled, hence, we haven't experienced "such a devastating diagnosis"? I'm sorry, but you cannot ask, "What kind of life can a child have under such circumstances?" in regard to Spina Bifida and avoid implying that those living with the condition have untenable lives and would be better off dead. All in all, I'm saying that it's one thing to defend abortion rights, its another to use stereotypes of those with disabilities in order to do it. This is what your characterization of Spina Bifida, and of disability in general, does. Moreover, this issue extends far beyond whether someone supports the right to choose or not. As I've posted earlier, there are several essays by pro choice women (one of whom, incidentally, has spina bifida) in the Disability Studies Reader which examine this issue.

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  4. I'm sorry that I've written something that offends you. That most certainly was not my intent. The point of this article was to have people understand that not all women WANT abortions, and for some people, it isn't really an option. Defending late term abortion or abortion for medical reasons is just as important as defending "typical" abortion rights. Of course, if you are living with a disability, you have received a horrible diagnosis. It is unfair and I am sorry that you have that on your plate. And yes, that assessment would count, most definitely. But I don't think you're understanding that from my point of view, one case of spina bifida may be much more serious than another case (No, not that all cases aren't serious), and therefore, a family may choose to terminate a pregnancy based on the severity of the diagnosis DETAILS.

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  5. "I'm sorry that I've written something that offends you. That most certainly was not my intent."

    It wasn't my intent to communicate that you ought to apologize for "offending" me. I'm saying that defending abortion by appealing to the fear of giving birth to a disabled child is wrong by virtue of the extreme ableism involved in such an argument. Your characterization of Spina Bifida in this piece wasn't wrong because it offended me, it was wrong because it helps spread misinformation about those with spina bifida and contributes social stigma surrounding that condition. It was wrong because it encouraged a prejudiced outlook toward spina bifida and those living with disabilities. My feelings pale in comparison.

    "Defending late term abortion or abortion for medical reasons is just as important as defending "typical" abortion rights."

    Defending abortion does not confer the right to use those of us with disabilities in order to make a point. The fact that you're defending reproductive rights doesn't make your use of disability stereotypes acceptable. You can defend abortion rights just as well by saying, "I support a woman's right to choose abortion at any time, for any reason, because I can't judge/it's her body." It is not necessary, or moral, to appeal to a bunch of treacly prose that characterizes disability as a fate worse then death and related abortion as merciful and courageous.

    "Of course, if you are living with a disability, you have received a horrible diagnosis. It is unfair and I am sorry that you have that on your plate."

    Again, my point is that disability is a human characteristic, like gender, race, religion, etc. I do not regard my disability as something horrible. I DO, however, find it horrible when my life is used a a justification for ending a life. I'm not sorry that I have a disability, I'm only sorry that people like you can't accept me and those like me for who we are.

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  6. Safepres, I think that you are taking this article entirely out of context. The story is not about terminating a pregnancy just because a child has disabilities. The article is about the ordeal the mother goes through when she receives such a diagnosis. For some people, it is not fiesable,((AGAIN)) depending on the SPECIFIC circumstances. In this piece, I outlined the story of two mothers who terminated for two different reasons. I then explained the differences between these types of terminations and your "typical" early abortion. This was not intended to give off a "Hey, our kid has a disability, let's off them!" impression...and I don't think it does. I think it expresses the raw emotional pain that women can face when they're given such a decision to make. Also, you keep talking about the Spina Bifida side of this piece, but have nothing to say about the Trisomy 13 side. Is there any disability that you find it acceptable to terminate for? Is there any condition, such as ananchephaly, brittle bone disease, or hydrops? Is it acceptable to let children suffer in the womb only to die during delivery or shortly thereafter? You're coming off in an argumentative way that doesn't make you seem like you're trying to explain something---it comes off like you're angry. And regardless of how ANY of us feels about the topic of abortion, none of us will get anywhere without open minds and understanding of where the other side is coming from.

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  7. Trisomy 13 is a grey area. One child's case may be terminal, while another's might not be. This is generally much more severe then Trisomy 21, or Down Syndrome. OTOH, your article doesn't say what other complications the baby was experiencing-was the termination done because the baby was missing half her brain, half her heart and was missing her kidneys, or was it because she might be born with intellectual/physical disabilities, despite not being terminal? That greatly impacts the analysis of whether or not a termination has an anti-disability bias.

    Spina Bifida, on the other hand, is rarely, if ever, fatal in this day in age. Hence, my focus on the disability that has the lower fatality rate. You also did not make ableist comments such as "what kind of life would that child have?" that begged for an answer. Moreover, I do think you should consider that your article strongly implies that these conditions are equally severe, when in fact there is a significant disparity in the likelihood of survival. Nora would not have died during delivery or shortly thereafter. She would have been a disabled person. Her mother felt that that life was too horrible to subject her child to. That is ableism. Hannah's case is more difficult to analyze because she may well have been terminal, or she might have been disabled. We shall never know.

    As for anger, I think that anything short of complete admiration for and acceptance of these kinds of terminations would be thought to reflect "understanding of where the other side is coming from." I do want to explain this to you, but in addition to contributing my thoughts, I've already provided a link to an excellent essay on the topic elsewhere on your blog and encouraged you to research other sources that provide a disability rights view on this topic. What other ways are there to explain this perspective?

    Moreover, I expect that my posts sound angry because this is a contentious topic. I don't think there is any "nice" way to express the disagreements I have outlined in my previous comments, but someone needs to make them. Otherwise, people might get their ideas about living with a disability from blog posts like this one.

    Since you've asked for further explanation, here are two more articles about pregnancy interruption and disability in addition to the one I've already posted:

    Abortion Rights Supporters Should Not Reinforce Prejudices about Disability. http://www.progressive.org/mpfinger061109.html, Websites on Pregnancy Interruptions are a Paean to Eugenics, http://www.ragged-edge-mag.com/0798/a798ft4.htm, “Disability Rights and Selective Abortion,” http://www.gjga.org/conference.asp?action=item&source=documents&id=17

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  8. I also don't think it's possible to discuss this issue without making someone angry and/or upset. I maintain that feelings are secondary to the more serious matters at stake, however, this is a matter near and dear to people's hearts. So, if a woman says, "I can't bring a child with Spina Bifida into the world, he/she will just suffer and have no quality of life," someone with that disability will likely think to themselves, "Sheesh, why don't you just smack my thumb with a hammer?" If a disability activist says, "terminating a fetus because it will be born disabled is a form of eugenics," the same woman may think, "Why don't you just stab me in the heart?" Upsetting people is inevitable.

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  9. All in all, I'm sorry that you feel that way. But I would like to ask, how in the world did you find this blog if you're so against this type of thing?

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  10. Anyone who regularly studies or researches matters related to procreation and disability may stumble upon this blog. The internet is a big place with a lot of people in it.

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  11. Most of the time, those who terminate for medical reasons, had planned pregnancies. So when they find out the baby has a disability, they are in shock and are grieving. Whether they continue the pregnancy or not, they need to go through the grief that their child is not what they expected. It is never an easy thing to hear. But there is support out there for them.

    Unfortunately, many women are pressured to end their pregnancy, by professionals, husbands, loved ones. Some pressure is overt. Directly stated to them. Other pressure is covert. Indicated that the child will ruin their life. Often times, the mother will make this decision, and later regret it. We have many who contact us, who after they end their child's life, they regret it. We are happy to have them stand with us, in honor of the child they lost, and heal by advocating on behalf of their child they lost. Unfortunately, many are given outdated information about the diagnosis, instead of support and direction to good care. We hear it all the time, even from mothers who chose to keep their baby. Another unknown fact is that there is a waiting list of 200 families ready to adopt a child with Down syndrome, and many other disabilities. So if you ever meet someone who is on the fence, please share our contact information with them. Also, for those who regret their decision to terminate, please know that help is out there for you, to heal. It was not your fault. You reacted to scary news. Maybe you were overtly or covertly encouraged to terminate. Maybe you were not given support, and up to date information. We have heard this often, and we are sorry this happens. For those who are finding this blog, there are many organizations that will help you walk through this journey, what ever your child's diagnosis is. If it is terminal, many of us walk all the way through with you, holding your hand as you let go of your child, in a natural way. It is never easy, but there are more options than termination. Thank you for letting me share our side of this. I find this blogger to be very respectful of other opinions, and I appreciate that.

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  12. IDSC, I do try to be respectful of both sides, because I've been on both sides. Please share the blog so we can keep the conversation going!

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  13. Safepress, you have posted very good information. Thank you!! I will share it with others. And I must say, to me, neither of you sound angry. This is a tough conversation to have, and unfortunately one that done with just a few words. I am glad both of you are having this conversation, as it is a conversation that needs to happen. Sadly, too many have avoided it for too long. Unfortunately, many women have been told that their only option, or the best option, is to terminate the pregnancy. Sadly, the women have been put in the position that they must decide quickly. And way too many have been told their child will suffer if they let the child live our their natural life. Many children will have hard time befall them, whether they have a diagnosis or not. Some might get in an accident. And be left with out a limb or be able to do what they used to do. But we do not end their lives, we give them the best medical care possible. The same for those with a prenatal diagnosis. Often what parents think the child will suffer. Spina Bifida was your example. The child does not suffer like the parents think they will. Individuals with SB live very rewarding lives, and are a wonderful part of our society. But fear of the diagnosis, and what parents think will be an easy fix, i.e. termination, leaves a mother with out a child, and a child with out a life. Unfortunately, parents are given the diagnosis for their child when they are most vulnerable. And sadly, the real truth is this, when a parent decides to end the life of a child who has a disability, because a doctor or loved one told them they would suffer, that infers that all of our children, with that disability are suffering. That is just not the truth. Disabilities are natural. And to be honest, not the end of the world. People with disabilities bring to our world the same wonderful gifts that any person brings to the world. I for one am inspired by so many in my life, who are differently abled. And grateful that their lives exist. Again, great conversation, thanks for letting us have it.

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  14. Please, please, please don't refer to termination as "easy fix". I can't imagine that being an easy decision or process for any woman. Relief maybe, but I don't think it could ever be easy.

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  15. We are saying some think it is an easy fix, we don't believe it is. That is why we advocate the way we do. Some say it is, like doctors, family members, etc. We know better, and we see the other side of the abortion, when women come to us, regretting their decision. So we don't think of it as an easy fix, some in society do though, and it is not.

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  16. After reading your blog, I think you would also be interested in this, we hear from women who are basically pressured to terminate their pregnancy, because the baby has Down syndrome. That is why our organization exists. If someone makes that decision on their own, and it is truly what they want, we can't deny that is their right. Unfortunately, this stuff does not happen in a bubble, and many professional and family member will pressure the woman to terminate the pregnancy. The funny part about that, that is not even in line with pro choice. Some actually lose their right to chose. We have some women contact us, who tell us their husband's told them they would leave if they did not terminate. That is not a woman's right to chose, that is bullying. The woman does, because she does not want her husband to leave. Then the grief sets in. This mom did not want to do it, but she also did not want to lose her husband. Sadly, many do anyhow, because their marriage suffered from this experience. We have a lot of women who chose to keep their child, even after their husband says they will leave, and the husband falls in love with their child, after the baby is born. Thankfully, both win in that situation. All this to say, you are exactly right, it is not an easy fix,and those who tell women it is, or pressure them to do it, need to evaluate their reasons for doing that to women.

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  17. IDSC, I completely agree with you. A woman being pushed or bullied into either decision completely defeats the purpose of the pro-choice cause. I like to remind readers here that while I STRONGLY agree with a woman's right to CHOOSE, I am not "pro-abortion". I just believe that it is a woman's choice to make and that we should TRY to support a woman's choice either way.

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  18. Sadly, it happens more than you can imagine. Most women instinctly know they can do this. Rosa Parks sat on the bus where she was not supposed to. Surely, we can raise a child with Down syndrome. Unfortunately, too many other people overtly or covertly, like I said earlier, tell women they can't do this. Your child will be a burden. Your child will make it worse for your other children. You will not be able to handle this. Surgery will make your child suffer. Your child does not deserve that. All of these things get said to women, while she is most vulnerable. When she needs support to know she can do this. Rosa Parks support, which we are ready to give her. Doctors are ready to help her baby. Unfortunately many have doctors who fear being sued more than they care about the mother or the child. So they give the mother her options. In fear, the mother makes hers. Likely with a husband who says trust me, this is the best thing for us. Or a grand parent who says, you don't' want this in your life. Or a friend, who says, I could not do it. And they are scared. They don't' know what the future holds. But the reality is this, they can do it. They are as strong as Rosa Parks. If Rosa Parks could sit on a bus seat, and show the world that she could with stand the hate, we can surely raise a child who has a disability. Is it easy? Not so much all the time. But what Rosa Parks did was not easy either. But she did it. Why? Cuz women rock! We can do SO many things, and people underestimate us!

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  19. Oh and I have to tell you, the women who connect to us, who tell us they were in the shoes I just described, fear, pressure, uncertainty, all of the above, and then they terminated..... then they find us. We all agree we were scared. We have a shared experience. Then they share with me that they were pressured in one way or another. Overtly or covertly. It hurts my heart every time. But they are my heroes! They inspire me daily to keep doing what I am doing. They are the ones that tell me to never stop. I don't. some days I want to. But I keep going. Because if one women is empowered to make her own decision, against what others say, I can sleep each day.

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  20. I could see how that type of thing could end up breaking up a family, easily. And honestly, I'm not sure how a woman could make that decision for anyone but herself. The responsibility of really giving thought to every factor that's in place is huge.

    I wanted to ask, IDSC, are you pro-life? What's your stance?

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  21. Sorry....pushed the wrong button. I mean, I understand that you definitely believe that the choice should not be made based on a diagnosis. But overall, where do you stand with it?

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  22. We are both. If you read about us, you will see that we are pro life, pro choice, and neutral. How is this possible? We are parents who have a child with Down syndrome, Grand parents, friends, self advocates, and post abortive moms who have terminated for Down syndrome. What we have in common is that we do not want women to be pressured to terminate a baby who has Down syndrome. Unfortunately, more are than are not. And we want to stand with those who have. We want the world to understand that this should not be happening. It is cheaper to abort a child, with Ds, cuz truth be told those who talk about expenses know that most of the cost comes from the government. From birth to 3, children who have a disability are paid for. The less money you make, the more is covered. People do not know this, until they actually have their baby, and they quirky learn the law. Babies with Down syndrome do not cost families. But the do cost the government. Thankfully we still live in a nation who affords to pay out for those with disabilities. Doctors worry about being sued. The government want to save money. Husbands are afraid of raising a baby who will cost them, but they don't realize they likely won't. All on the backs of women. Who have to live with this heart breaking decision.

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  23. After birth to 3, it is all covered again, by IDEA. Adult are covered under medicaid. The cost is not to the family, it is to the nation. Are our kids worth it? I think so.

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  24. Here is where you can read about us. http://www.idscforlife.org/p/who-we-are.html

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  25. IDSC, you've provided a lot of really good information here, and I hope that women who are facing such a decision are able to find it...whether it be through your organization's website or this blog. Information is power, either way. I really appreciate you being so cordial and informative with your views on this topic. Please follow the page on google =) You can also look up A Thought of Her Own on facebook. Do you have a blog or facebook page that I could follow and share? I'd be happy to post information for your website on the blog's facebook page.

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  26. On Blogger, not google...sorry!

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  27. We have a website, which if you click on our name on here, you will find your way there. We also have a Facebook. We tweet and we Pin on Pinterest. Of you follow our links from our link here, you will find all of these. We would love to had you follow us.

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  28. If not of, and have not had. Sharing to fast.

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