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@Adira: no absolutely not! I certainly did not mean to imply that! But thanks for bringing it up so I could clarify. I wouldn't want anyone to think that.
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@gingerbebe: Our new head pastor at my church currently has a disabled son, and he is creating a program for other families in our community a respite for 1 night a month to go on a date night, and there is care provided at our church for the children & any siblings!
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@Adira: Yes, we had to travel 1100 miles (each way), and it was $25,000 up front. We were incredibly lucky in that we were in a position to be able to do that, and that insurance did eventually reimburse us (after DH spent hours upon hours on the phone fighting them on it). As horrible as it was, we were actually very fortunate. I'm hoping to have a guest post up on my blog in the next week or two by a woman who was not able to get an abortion, and had to go through a stillbirth as a result. Our state sucks.
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@gingerbebe: Totally agree. The people who are anti-abortion but don't want to provide any help in preventing pregnancies or supporting women who have unwanted ones make me furious. They are the ones I see referred to as "pro-forced-birthers," and I don't dispute it.
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@LulaBee: Yes. Lots of black and white here. DH and I saw a woman out at dinner last year wearing an "abortion is murder" shirt. It took a lot for us to not confront her, but what good would it have done? And thank you, I think she's pretty cute too!
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@delight: Yes, I HATE that anyone ever has to go through these things, but it sure is nice to not feel alone. Especially when it comes to being "out" about it. Not only do I have the support of so many people here, I know I'm not the only one.
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@JoJoGirl: agree with you 100%
@Torchwood: @delight: @mrs. Green grass:
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Unfortunately, I still don't think society fully understands the grand scope of disability. I feel we've gone from committing any and all people of cognitive differences in asylums, to assuming they're all future subjects of a motivational after-school special. I cannot tell you how many of the special needs parents in my life feel a overwhelming pressure to be "inspiring." The public hears "autism," and their child must be a savant. Piano or painting? A mother of a child with Downs must love the perpetual smiles and hugs; living the dream, no?
My point is, disability is not a one-trick pony. It can certainly be manageable, enlightening and small scale, but it also can hinder to a devastating level. I've seen it take a firm hold on a family's sense of stability, safety, support and happiness, and it just shattered them, body and soul. And that's *while* fiercely loving their child and having top notch resources available to them.
We cannot fairly make assumptions about quality of life, nor can any doctor make absolute promises in regards to what can be expected or managed. This is a sensitive and very personal matter to be dealt with by the parent(s), alone. What others assume they could do, afford, risk, or handle is of no consequence or relevance. One cannot legitimately declare what is "right" until they've lived it and lived it to the very end. And even then, what's right for one can be entirely detrimental for another. I cannot comprehend how another's morals can possibly be the road map of another family's journey. I actually find it absurd.
And since it's been mentioned - I appreciate when "morally pro-life" people, organizations and churches opt out of picketing, instead vowing to fund raise, advocate and assist. But those efforts still only see such a small slice of that family's often turbulent life. Having those resources are wonderful, but no one should assume it is a compelling reason to continue with any sort of pregnancy. Services should be of quality and made readily available to all families who need them. But they should not be created or used as a bargaining chip. I like the heart and passion behind it, but in some cases, still see an agenda that pressures and ostracizes. And I say this as a Christian, and someone who has been that respite provider, educator and loved one. If that matters, of course.
Kay, that was 100x longer than I ever anticipated. Apologies for the wall of text.
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@JoJoGirl: I haven't finished reading through all the responses, but yours really struck a chord with me. I have a cousin who is very, very seriously mentally impaired. She's in her 40s. She's nonverbal, so her mental capacity is less than a two-year-old. As an adult, she lives in a group home because she obviously cannot live on her own. Caring for her as a child and teenager was extremely difficult, and my aunt purposely did not have any more biological children (she did adopt). Granted, these are not issues that were known before birth, but I can relate to what you're saying about the idea people seem to suggest that disabilities are not a big deal to manage. They are. They are tough, and it's important that people understand that and how much support the parents dealing with disabled children truly need. I find the attitude of many to be far too dismissive about the realities of caring for someone severely physically or mentally disabled.
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@deerylou: wow, so eloquently and thoughtfully put.
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@MrsSCB: Thank you
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@winniebee: Ha, thank you. I kind of went off on a tangent.
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@looch: yes exactly, caring for an adult, or even a teenager, with disabilities is SO much different than a child. Like with my cousin, I'd say: think about how hard it can be to wrangle a young toddler and then try to imagine that toddler having an adult-sized body. It's tough.
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I read this article in the NYT and thought of this thread, because it's another branch of the same issue. Again, families have to make their own choices. What one family can do/is willing to do/wants to do, should not be translated into a law where all other families must do the same.
If one couple finds it healing to carry a child that can't live outside the womb for 9 months, that's great--but we can't legislate that other women who would find that torturous and traumatic to do the same.
And in the US of all countries, where we get little to no support for severe disabilities--how can we dare to tell families that they must raise a severely disabled child? The truth is, the public doesn't want to think about it. They don't want their tax money to help the disabled (just read any comment section on any article about disability, ever), and they don't want people to abort. And they have 0 clue as to the true cost of group homes and therapies. Grrr. And who takes care of these severely disabled adult children when their parents pass away? Society doesn't want to.
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I wanted to address a few things, I see respite services being mentioned and while it is wonderful that my parents have access to it, they have used it once. Imagine trying to put your essentially non verbal child in an environment that is totally unfamiliar, with strangers. My parents tried it because everyone told them it was there for a reason, they deserved a break, but my brother was inconsolable and they had to pick him up in the middle of the night. So, just because they are there, you can't always just use them when you need a night off. I am not sure my brother comprehended that my parents would be back to pick him up in the morning, at the end of all of it. But who knows.
My dad described it best. He basically said he's at the mercy of strangers for the care of son. It's not a short term thing, that eventually he'll catch up and be able to do things on his own, this is forever. So he'll always be dependent on either my parents, my brother and I or strangers. It's a hard place to be in as a parent. I don't have a solution, but I can tell you that this is the forgotten population. They get shuffled around because no one wants to have to own it.
eta: But I do think it's good to discuss this type of thing. I never used to share, but I think I was doing the community a disservice by not saying anything on the subject of disabled adults.
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@looch: Yes this. If you don't feel comfortable putting your 2 year old in drop-in care, imagine how it would feel to a disabled adult...
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@JoJoGirl: Right! I mean, I tried to put my 18 month old in drop in care and it was a disaster. I was called about 15 minutes into his stay to come and pick him up.
I then was absolutely ROASTED on another thread about a woman that left her kids in a car for a job interview. Every other person said that she should have used drop in care, but when I posted my experience with it and said it's not always an option I got some serious heat for it (fwiw my solution would have been to bring the kid into the interview and ask for forgiveness, not leave the kid in the car).
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@looch: Yes. Parents of neurotypical children lament about unfamiliar drop-off care. And I get that; I do. But I feel it'd go a long way to imagine that being the only option for your very fragile child, provided through the state with very limited training. That's the reality for countless parents. Some families are lucky to have a trusted special educator who will offer at-home care services on the side, but that's far and few in between. And comes with a financial commitment.
Adulthood is where it becomes nearly impossible. Disabled children age out of their inclusive support net, and suddenly, you're cast into darkness and closed doors. "Forgotten population" is right. Thank you for sharing your story.
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@winniebee: Thanks so much for posting this. It is so important to remember what the word abortion includes when we discuss it and when we VOTE.
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@Torchwood: @delight: @Mrs Green Grass: I've been so touched by your stories.
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@delight:
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@winniebee: Thanks for posting this. It has been interesting reading all the comments on this thread about this. I feel this is such a tough choice, I'm not sure what I would have done personally given this situation but I think people need to do what's right for them and their family.
@Anagram: Thanks for sharing this. While reading it was a bit shocked about the treatment but after thinking about it, it feel like that's a great option for people in that situation. I never thought about having to carry an adult who is disable and that would be very tough but carrying a 4 year old would be a lot easier especially as the parents age.
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Thank you for sharing this article. I didn't read all of the responses on here, but I just have to say that, this definitely reaffirms my beliefs of allowing women to make their own choice. I think that this article can be used to help many people realize that the abortion issue cannot be black and white.
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As a genetic counselor, this is all very near and dear to my heart. I see patients will all levels of disability from very mild concerns to those that are completely debilitating. I also see a wide range of family reactions to these disabilities from families that cope very well to those that completely implode and devastate entire families.
Working with hundreds of families with a family member with a disability has led me to really, truly, believe that everyone needs the right to make their own decisions about continuing or terminating a pregnancy that is affected by some sort of disorder. What's right for one family, will not be right for another and it's not up to me or anyone else to decide, it's up to that family.
Personally, when I was pregnant I got screening for chromosomal abnormalities. My husband and I talked it through prior to getting the testing and decided that for the more severe disabilities, we would terminate and for the more mild ones we would not. We were lucky that everything was normal and our son is healthy. But we were prepared to make the decision to abort.
I will also say that I struggle with terminology as a medical provider. I almost always use the term "terminate" or "end the pregnancy" or "not continue the pregnancy" or something like that rather than "abortion". I do this to try to make things easier for my patients. But this article makes me realize that this contributes to the societal views about abortion and the restrictions that are being placed on abortions. Because it's all the same in the eyes of the law, which doesn't care about my semantics work arounds.
For all those that have had to go through abortions, especially for medical concerns, I have nothing but sympathy and support. It's an unimaginably hard situation and all you can do is make the best decision for you and your family.
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I am chiming in to say I'm truly touched and heartened by the thoughtful discussion of viewpoints displayed by this post. My own belief is that thoughtful discussions like this are why we need more women represented in our national and state legislatures! Imagine if the national conversation mirrored this one.
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@Anagram: I read that article earlier today. It was so interesting. I think it reinforces the idea that, until you are walking in someone else's shoes, you can never know what decisons you will have to make.
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@lawbee11: I totally 100% agree with you! I don't morally agree with the idea of an abortion for the sake of birth control, however, I do believe that it is EVERYONE'S choice about whether or not they can continue with a pregnancy!
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@delight: I so glad that you felt supported and accepted through your loss. One thing that I couldn't get out of my head when we were going through our loss is that our decisions for Lucas was accepted and supported and understood because he was a dying child....did parents who had to make essentially the very same tough decisions but before their baby was born get similar support or were they judged? I couldn't imagine adding a layer of shame and anger at the judgement and the inevitable extra torturing myself with whether it was the right decision to the already heavy, emotionally loaded time. So glad that the people around you understood that.
I think this has been a very civil conversation about a very tough subject. One thing that hasn't been brought up, is that many of these in-utero diagnoses are not made until the 20 week anatomy scan. So much of the work of the anti-choice lobby has been in eliminating "late-term" abortions and setting earlier and earlier dates of "viability". Many of the families that would be impacted by these bans would be families aborting for medical reasons detected around 20 weeks, leaving very little time for confirmation (genetically, better scans), medical opinion from specialists, time to make the very difficult decisions, and then time to schedule and travel for the procedure if that's their ultimate decision. I hate that these considerations are so often left out when politicians talk about how women have plenty of time to make the decision so banning later-term abortions isn't a big deal.
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@mrsjd: Yes! Though there are still extremists among women as well (like my family
), it still would surely be better if we had more women in government positions to stand up for us!
@Ms.Badger: Yep, we didn't find out till 20 weeks. At that point it would have been legal here, but only for another week or two. And the woman doing the guest post for me- she found out while it was still legal, but no one would actually do it. Late term bans make me FURIOUS, because they almost never happen just because someone doesn't want the baby anymore. And going by viability is crap because that's just a measure of medical technology at this point. Viability in this situation should refer to ability to survive outside the womb with no medical assistance, or they need a better measure. Theoretically we could get to the point we could have the ability to gestate a baby entirely in the lab. Do we then outlaw all abortions because technically they could survive even at 6 weeks? Grr.
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I don't have any personal experience with this topic, but I just want to thank everyone for your very thoughtful contributions. It has been a worthwhile read for me.
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I'm really impressed with the discussion today, even among differing viewpoints. I have to say when I posted this I was prepared for a sh*tstorm.
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@Torchwood: I still consider myself both morally and legally pro-life in almost all cases; but I wanted to let you know that reading your story through your blog really helped me understand the compassion and love that can go into a TFMR decision. I have a friend that constantly shares those "pro life" stories where a woman carries her baby full term even despite a fatal diagnosis, and I always sigh, think of the complexities that aren't being conveyed, think of the sadness that must be there despite all the joy discussed in the articles, and think of your love for River and how you wanted her to have a peaceful passing even though that meant a gut-wrenching decision for you. Your experience demonstrates that a mother can fully respect her child's humanity and love them, but also choose to end their life here on Earth; two concepts I had difficulty believing could coexist but they do. Thank you for sharing it with us.
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@Ms.Badger: you make such a good point About late term losses.
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So many tears reading this article.
We tested with the "knowledge is power" mantra & I have no idea what choice I would have made had we been faced with a similar diagnosis as the author. I am a pro-choice Catholic--if that is actually possible--and would never try to make this decision for any other woman.
So much love to you ladies here who have had to make this decision.
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@Ms.Badger: I do feel fortunate that I was supported through everything. My friends admitted in the aftermath that either they would have done the same thing or that they have no idea what they would have chosen if placed in my shoes. I was expecting some people to react negatively but besides my mom, no one did.
I am so sorry for your loss of Lucas. Without opening up a can of worms, to me there are different layers of loss. I have experienced early losses and my late loss and they are all gut wrenching but I can't fathom losing my DD. You are a strong woman and I thank you for commenting and sharing your story here too.
@winniebee: I was also prepared for this thread to get closed down quickly. That is why I wanted to put in my two cents this morning and express my gratitude to the community before I lost my chance! It has been a good discussion.
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I am so freaking angry right now! Indiana has now passed a bill criminalizing abortion for, among other things, fetal defects. If we had been in Indiana, and found out about R's issues early enough that we could have aborted in state, the doctor could go to jail for doing it. For something that was BEST FOR THE BABY. Fuck everyone of the asshole politicians who think this shit is okay.
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I just read this and havent had time to read all the responses but my heart goes out to this author as well as the applaud her for shedding light on such a touchy and private and important message indeed. I really agree with @adira in that an abortion is an abortion whether its because of a sad choice like this or for something else. If we try to change the name to only label what we believe is an abortion we are allowing more and more limits to be placed on woman when really we need more choices and the ability to have these procedures if and when we want no matter what the reason.
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Just for the record, it is possible to have a disabled child and not be miserable, or have your marriage destroyed, or give up hope on ever being happy. Some of us actually DO treasure smiles and hugs from our special needs children. It's not an act that we put on because we feel the need to act out an after school special.
I'm pro-choice, so I don't disagree with that part of the discussion, but somehow it turned into a discussion of how a special needs child = a ruined life. I know I'm probably taking these comments too personally, but I can't let it go without commenting. My daughter is amazing. She's not an inconvenient impediment to my hypothetical future as an empty nester, or my ability to take child-free vacations. It is worth giving up a lifetime of child-free vacations to be her mother, and I would do it all again in a heartbeat.
So I agree that everyone should do what they personally need to do when faced with a prenatal diagnosis, but I wanted it stated for the record that not all of us with special needs children have ruined our lives. If that were true, there wouldn't be people out there who choose to adopt special needs children. And that happens. It is in fact one of the only things left to convince me that there is a force of good in the world.
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@LML: Thank you for saying this.
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I terminated for medical reasons last month, and I have to say that you really don't know how you are going to feel until you are actually faced with the situation. It's very easy to say what you would do as a hypothetical, but much harder when it becomes your life. We very much wanted the pregnancy, and my tfmr was one of the worst things that have ever happened to me. You have to think about what is best for you, for the baby and for your family. Honestly, I had to put what was best for me last and think about potential suffering of an unborn baby and a potentially very difficult life for my DD. Big hugs for anyone who has ever faced the same impossible situation.
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