Let’s Take God Out of the Equation. Please.


I started the guest post I wrote for A Perfect Lily last week, It’s About Wanting a Baby, with this line:

“It’s not about God, or what the Bible says . . . because not all of us believe in God or are swayed by the Bible.”

I wrote that because I have noticed that so many important social issues are discussed within the framework of faith and religious belief, and I really believe that in so doing, huge sectors of potential audience are alienated.

We need to take this discussion about prenatal screening, about termination of pregnancies, about the sanctity of human life, out of the arena of Christianity.  The fact of the matter is that not everyone is Christian, and basing arguments about such important issues in Christian beliefs shuts out and turns off anyone who doesn’t share those Christian beliefs.

You may believe that by invoking God and the bible into your arguments, you’re being a good Christian, you’re being true to your beliefs, you’re scoring points with the Big Guy and earning your place in Heaven – but I can tell you as someone from the other side of Christian belief that it’s just not the way to win friends and influence people.  At least not the people you really want to influence: those who are on the other side of a very polarized debate.  Sure, your like-minded Christian friends may appreciate your arguments, but they don’t need convincing, do they?  That’s just the choir you’re preaching to.

Now, it just so happens that as the mother of a little boy who has Down syndrome, I’m appalled and even somewhat personally pained over the reasons people tend to abort if they find out they’re carrying a fetus with Down syndrome.  It hurts, because collaterally, it’s a statement about how my son is viewed: as a mistake, as someone most other people wouldn’t want, as someone most people think shouldn’t have been born.  I believe that the reasons behind the majority of the abortions based on a prenatal diagnosis of Down syndrome are misinformed and misguided, and I’m completely in favor of educating people about the realities of Down syndrome in an effort to decrease the termination rate and in an effort to allow Finn to grow up in a world that values him instead of pitying him or marginalizing him.

But it has nothing to do with God.  And when people try to encourage acceptance of Down syndrome by saying things like “They’re God’s perfect angels,” or “God made them exactly how they’re supposed to be,” or “God doesn’t make mistakes,” or “They’re God’s gifts, sent here to teach us blah blah blah,” or “ABORTION IS MURDER!  ABORTION IS A SIN!  ABORTION LEAVES GOD BROKENHEARTED,” well, I just want to scream.  Because those statements don’t resonate with me, and I’m sure they don’t resonate with a whole slew of other folks, either – many of whom are the very people who we’d like to see Down syndrome in a new light.  Possibly people who are grappling with a brand new diagnosis of Down syndrome and wondering what the heck to do.  Throwing God at them isn’t going to help.

Framing the discussion in human terms based in fact – that’s what helps.

We are a society of diversity – diverse ethnicities, diverse cultures, diverse socio-economic positions, diverse philosophies, and diverse beliefs.  Not everybody is a Christian.  I know it hurts to hear that, but it’s true.  And the truth is, in order to unify discussions, God has to be taken out of the equation.

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31 Comments on “Let’s Take God Out of the Equation. Please.”

  1. Megan @ My Stubborn Little Miss
    March 13, 2012 at 8:57 am #

    I love your arguments here. I am a Christian, and yes, God is in the equation. I think a lot of Christians, not able to personally take God out of the question, therefore argue that “abortion is bad because God says so.”

    But if you believe that all life is valued (because of God or for any other reason) your logic makes perfect sense. And is a valid explanation for anyone facing a prenatal diagnosis, regardless of their beliefs.

  2. meriah
    March 13, 2012 at 1:35 pm #

    this made me laugh. It reminded me of a paper I wrote in grad school about the middle-east crises and that, in my opinion, the only way to truly solve it would be to DEEPEN people’s beliefs in God. That, from a superficial level, faith would never unify – but by going deeper into it, they could do as their respective religions ALL advised and cease to kill and start treating each other as they would themselves.

    I think it’s similar in this case. Personally, I think it’s impossible to take God out of the picture from a person that believes in God. But rather, by deepening that belief and starting to see that all people are one – just as Jesus the Christ said – that we need to look over the faults of others (etc) – my point being, by diving DEEPER into pure Christianity, people will be better able to open themselves to differing opinions. By staying right on the surface and clinging to what the preacher says (rather than reading on their own, thoughtful study on their own), they are stuck in division.

    I wholeheartedly agree with what you are saying – I know that when I was considering abortion, I got hit with all that “god” stuff and only by tuning them out and going deeper into my OWN belief in God was I able to make a decision that I felt right with.

    But it wasn’t easy thinking also that it seemed that in effect by choosing to grow moxie in keeping Moxie, I was choosing to join a community of pro-lifers and it scared the crap out of me. You know how important your voice is in lending diversity to our community. Thanks, Lisa, for using it.

  3. Alisah
    March 13, 2012 at 8:21 pm #

    I don’t understand why you should feel the way you do, if someone aborts a child because they find out the child has DS. It is a personal decision between a husband and wife that doesn’t have anything to do with you. Just because your opinion is that aborting a child with DS is wrong. I have friends who have Grown Children with DS and you know what… the stories they have shared with our group of friends has been so discouraging about the life these young adults live and yes, they have much more experience then you as a parent with a Down Syndrom child. The parents worry about what will happen to him when they are gone, will he ever fit into the (Social/Norm) if there is such a normal society. These are concerns and they are real. I know someone who aborted a child because it has downs. Who are you to judge anyone because of that, it is ridiculous and I am not including god into any of this. This is a private and personal matter between a husband and wife and it is no ones business what they do. I had my friend read this post and well she had a few choice words. That was not the path she wanted to go down after viewing a relative of hers have a child with DS who is now a grown adult and still lives at home and is unable to live on his own… Don’t Judge because you don’t have the right to Judge.

    • Lisa
      March 13, 2012 at 8:42 pm #

      Alisah, I’m sorry you have the views that you do regarding people with Down syndrome. I can tell you that if you have friends with adult children who have Ds, they grew up in a different time with far fewer supports than children born with Down syndrome today have. The picture of Down syndrome has changed, a lot. No, there are no guarantees that my son will grow up and live independently, and I don’t bullshit anyone about that. All I ask is that people look a little deeper and ask themselves, “What constitutes a life worth living?” If the only criterion is the guarantee that they will one day live independently, well, I think that’s sad. Many “typical” children grow up to be lazy bums who mooch off their parents well into adulthood (we have a 30-something year old next door neighbor who is a perfect example of this – still lives with his parents, has never had a job in the 7 years we’ve lived here, etc. etc.). And what if your “normal” child was in an accident and suffered brain injury that rendered them unable to live independently? Would their life suddenly be not worth living, not of value?

      As I’ve stated in numerous posts here on my blog (and I would hope that you might look around here at various things I’ve written instead of making a snap judgment based on a one-time visit), I am pro-choice. I DON’T feel it’s my place to judge anyone for the reproductive choices they make. That said, I am also pro-information and pro-education, and I believe beyond a shadow of a doubt that the vast majority of pregnancies that are terminated because of a prenatal diagnosis of Down syndrome are terminated based on misinformation, outdated stereotypes, and untruths. You have actually proven that with the views you have expressed about what Down syndrome looks like to you.

    • TUC
      March 13, 2012 at 10:35 pm #

      Alisah,

      I can understand the way Lisa feels about having other people want to terminate their version of her son. Though the decision is obviously a personal one the mother (and father) have to make, the outcome is a direct judgement and sentencing of people like Finn.

      I sometimes wonder if the stories we hear about adult with Ds are discouraging because it is not a life that would be enjoyable or fulfilling for us to live, but the real question is whether or not the person with Ds is happy, and in most cases studies show that adult people with Ds are.

      After rereading the post, I can’t see where Lisa made a judgement about anyone’s choices. Being sad or thinking someone may have been misinformed doesn’t mean that you judge them poorly. However, I will cough it up and admit that sometimes I do judge people who abort their children with Ds, even though I know it is wrong to do so. I can’t help it. Such is the conflicted heart of a woman who loves her children with Ds 🙂

      Lisa,

      You know there are those of us who might argue that taking God out of the equation is what has brought us so far down this ugly road… (Can a Christian play the Devil’s Advocate?)

  4. Holly F.
    March 13, 2012 at 9:16 pm #

    I struggle with this constantly. I recently came to the conclusion that I’m not Christian, though I was raised Catholic. I do, however, believe in a God…just an undefined one. I pray to this God, I believe in blessings from Him, and I believe that in being a good person, I will achieve closeness to Him. I just finally took the Bible and Christ out of the equation and feel better because of it.

    I completely agree that accurate information is the SINGLE MOST IMPORTANT piece of the puzzle. Also meeting someone with DS before deciding to abort or keep the pregnancy. Seriously, people at least test drive a car before buying it, but they can’t take the time to meet a person with DS before aborting.

  5. Ethan Hill
    March 14, 2012 at 12:19 am #

    THANK YOU, I have been saying this for months. I did not become pro-life until AFTER I became an atheist. Your message is completely true on many levels. I wrote about the same topic last week. http://secularjustice.wordpress.com/2012/03/08/how-pro-life-organizations-keep-abortion-legal/

  6. Janet
    March 14, 2012 at 1:27 am #

    This is such a touchy subject and there are so many valid viewpoints that we could spend forever discussing them. However, being a Christian doesn’t mean that that is the reason I am pro-life. I’m not just pro-life ‘because God said I must be’ or ‘because the Bible says I must be’. I’m not a mindless machine that does exactly what it is told. I value life because coming from a country like South Africa where life is of so little value I truly believe each and every one of us is important and valuable to this earth. We have come a long way from the days when conquering warriors used to throw newborn babies from the walls of cities and yet looking at what goes on around us every day I wonder if we’ve come very far after all?

    Anyway, at the end of the day people will make choices, good or bad and have to live with the consequences for the rest of their lives. At least you are trying to help them make more informed choices than they might otherwise make, thank you Lisa.

  7. Elaine
    March 14, 2012 at 3:48 am #

    Good Late Evening,

    My name is Elaine, I am Alisah’s Aunt.. I am in my 60’s. I have a 35 year old son who was born with Down Syndrome. It has been a very difficult road in my experience. He noticed that he was different around the age of 7 when he wasn’t able to keep up with children his own age and couldn’t understand what they where doing. I tried to enroll him in a public school system which was even harder and he felt even more different and neglected. I have worried my entire life about my son and his many health issues throughout his life. More so I worry about what will happen to him if his father and I are no longer around. I don’t feel my other children should have to take on the responsibility of him, it isn’t fair to them and there family. He is our child and our responsibility. The bottom line is yes, the education and information about Down Syndrome has changed tremendously but the bottom line is as an Adult with DS the world is different and no matter how many years pass it is what it is. My son depends on me for many things. I didn’t want a perfect child, but I wanted a child who could live fully without having to sacrifice the things he has had to sacrifice. The young women that Alisha was talking about was her cousin and my daughter. What I have to say is.. I have a lot of experience (more then you when it comes to being a mom with a child with DS), she grew up watching the hardships of her brother.. We love him, but she didn’t want to see her child endure what her brother has had. And yes, the information may be more advanced, but the bottom line is the worries and concerns are still the same. I love my daughter and knew that she was not strong enough to handle a child with DS. I don’t Judge her, that is the path she choose. There are so many adults with DS who are living in facilities, it is sad and breaks my heart.. I don’t want that to happen to my child.. That is not living a productive life. I was a school teacher for 30 years and I can tell you that integrating children doesn’t work for all children and the ones that are integrated have a hard time fitting in and keeping up with the curriculum. My son went to a special needs school, (and there is nothing wrong in my opinion with that) just as blind children go to different schools along with deaf children (not all but most). He grew leaps and bounds from it, he didn’t feel different he made friends and didn’t feel like an outcast. Your comparing apples to oranges when talking of a child who was born fine and had a brain injury, would a parent just stop loving him of course not. But knowing ahead of time that your child does have a disability maybe not the path for everyone. And if you get offended by it, maybe you should step back and think about some of the things you right that may offend others.. But guess what you still write. What parents have to realize is yes your child is different and they will be taking different paths then the so called “Norm”… No one says, your son has to take a back seat. There are many diseases and disabilities out there that effect babies when they born.. DS is just one of many things that make a child different.. It is no more important or less important.. It is what it is… I am writing this late so excuse me if there is any misspelling. This world is full of people wanting to make changes. Black people feel they are not treated fairly, as well as gay people. There are a lot of circumstances that need to be fixed and you know what they may never be entirely fixed.. Everyone is different has their own beliefs and no one persons beliefs are the right ones.. But it is right to those who believe them. Your writing seems harsh to me, and the truth doesn’t have to be harsh.. Sometimes, people stop listening or reading when it comes across that way. Being open to many opinions and beliefs as well as listening will get you so much further…As my niece said, did it offend you when she indicated that she would date anyone who had already been married or had a child with someone else. You where not effected by my daughter’s decision.. Just as I was not effected when reading your post about you allowing your husband to leave your toddler in the truck for a 1/2 hour by himself.. I could say you where a horrible mother how could you allow that, there is no excuse. But you know what your decision to allow that to happen did not effect me and I did not Judge you for that because you where in a difficult situation. So please, think of other peoples circumstances and paths they choose before passing judgement or feeling offended.

    • Lisa
      March 14, 2012 at 4:18 am #

      Elaine,

      I’m sorry to hear that your path with your child has been so difficult. Certainly not everyone who has a child with Down syndrome has a similarly difficult time. And certainly your experience should not be the yardstick by which others measure the possibilities for their own lives.

      I feel that you have been harsh in your comment to me. You seem to be angry about your circumstances and looking to lash out at someone. Regardless of what you say, I am NOT passing judgment, I am trying to advocate.

      Your remarks about my experience with my ex-husband are especially cruel. You are talking about somebody who, at the time, was the victim of long-term abuse, someone who was beaten down physically and emotionally. Your words are very judgmental and not at all compassionate.

      I wish you peace.

    • TUC
      March 14, 2012 at 4:55 am #

      Elaine,

      Your comment made me very sad, and sick to my stomach. You cannot imagine how discouraging, and in some ways horrifying your words are to me, a mom raising three girls with Ds.

      I did notice that while you mention many hardships and worries, you never mention if your son is enjoying his life today.

      Why does everyone try to make group home life seem terrible? I don’t get that. I see it as comparable to dorm life without the homework or wild drunken parties.

      It is interesting that you would say this; “But knowing ahead of time that your child does have a disability maybe not the path for everyone.” as I just wrote a post that speaks to that. It is called Advocacy Hurts.

    • Holly F.
      March 14, 2012 at 1:00 pm #

      Your daughter was not ready to handle the experience of raising a child with DS but she was going off of the experience with her brother….whom was born at a different time, diagnosed at 7, with a different set of laws regarding his education, and with a different public opinion. The experience is not nearly the same for mother’s today. So even though you have more long term experience raising a child with DS, your experience is more one of the past than the present.

      New mom’s get a diagnosis prenatally or immediately after birth. Our children get therapy as soon as they are out of the hospital. They go to school at 3 years old with a very low teacher-student ratio and the teacher is specially trained to work with our kids.

      There are laws in place to ensure they get a good education. Parents have large face-to-face support groups, access to worldwide online support, and free information to be strong advocates. Can you say that you had that when your son was a child? Probably not.

      So lets say that a new mom just got the diagnosis either prenataly or after birth. Should she contact you to get your experience of raising a child with DS? I won’t say she shouldn’t but if she does, she is seeing the past experience where your life was admittedly harder due to late diagnosis, late and less therapy, and poor laws. For what it is worth, I am sorry that your experience was harder.

      But if she contacts a mom (say of a toddler) she will get less long term experience, but the experience will be updated, accurate to TODAY, and will include the same resources her own child would get. The situation has changed completely. That is what us young moms want to do for our children: Let the world see the way it is TODAY!

      I agree there are other diseases, syndromes, and/or conditions that affect babies. I am certainly sympathetic to all of those, but my child has DS. That is why I support and advocate for that particular syndrome. Why would I advocate for others…those children have their moms to do that? That doesn’t mean I think DS is more important than others, it is just more important to me.

    • Garden of My Heart
      March 14, 2012 at 7:33 pm #

      Elaine,
      My daughter has Down syndrome. She is young, and your comment here makes me very sad. I want so much to wrap you up in the hope that I feel for my daughter’s future, I want to help you see it is ok to allow others into your life to help support your son.

      I have had the most amazing opportunity to be trained by some of the leading minds in disability rights. I sit side-by-side with adults with developmental disabilities (yes, even Down syndrome) and we slog through the tedious and heavy work of legislative advocacy together. We talk about the “big picture,” what it is adults with developmental disabilities want out of their lives. And we talk about how to change the system to make those dreams a reality.

      I want so much for you to know that there is a swelling movement of self-advocacy right now. Adults with developmental disabilities are out there – speaking with, emailing, writing to elected officials about the changes they want in their lives. All over the country, state-funded programs are finding new and innovative ways to help ensure adults have meaningful, authentic lives. More and more consulting firms are popping up to find meaningful work for adults, not just placements in a workshop or day program.

      All over the country, parents of younger children are demanding equality in the classroom and in the world. We demand that our doctors treat our children with dignity, we demand that our children have authentic life experiences. This is the luxury my generation has because your generation laid the framework for us. For that, I am grateful.

      I want so much for you to know that the future is brighter and brighter for people with disabilities. Changes in school, the workplace, in medicine – all of these are helping people lead meaningful lives of THEIR choosing. Institutions and group homes are shutting down all around the country in favor of people with disabilities living in their own homes, or with roommates of their own choosing. After all, isn’t that what any of us want? A life of our own choosing?

      These things are happening right now. They don’t get much publicity, but they’re happening.

      I have the pleasure of knowing a young lady in her 20s who has Down syndrome. She works 3 jobs – none of them in a workshop – attends policy training with me, and does volunteer work. Sounds pretty fulfilling to me! A few weeks ago, she and I shared a drink at a bar with some other friends. Sounds a lot like what people without a disability would be doing.

      I agree with Lisa 100% in this post. God or no God, what we need to do is work on heart change in the people around us. Shift the discussion from abortion is evil, to these are lives worth living, just as any life is worth living.

      I want so much for you to see that things are not always going to be the way they are today.

      I want so much for you to know that we are grateful beyond words for the work of parents before us. Please, please let us take the reins and continue. Let us show you hope.

      Your son’s life isn’t over.

      I, too, wish you peace.

      • Lisa
        March 14, 2012 at 9:00 pm #

        Now, this is inspiring!

  8. Meredith
    March 14, 2012 at 2:24 pm #

    Lisa,

    I do agree with some of what Elaine has said, I have been following your blog for a while now. You are harsh at times when stating things. Especially the post you wrote of Kelle Hamptom and (the other gentlemen) I can’t remember his name. You seem like the type of person who is jealous of those who succeed. You seem like someone, yes who has had alot of issues in her life, but who doesn’t we all have problems and bad experiences and the glass is not always 1/2 empty. I have continued to read your blog because you do make some very good points. However, it seems when someone calls you out on a statement or act you have done you become defensive and justify why what you did was ok. But you don’t hesitate to criticize others for their acts or words.

    I feel for you, because you seem like a individual who has (in my opinion) too much negativity and hostility built up inside you. I have also read Kelle Hamptoms website and yes it is not always about rainbows and unicorns, but it is the words you right and how you present them. And for the lady who expressed that homes for people with disabilities isn’t that bad.. well have you ever visited one? I have volunteered for many years. They are people who need to be with family in an normal home enviroment, living in a dorm is not the way to live the next 25 or 30 years of your life. Visit a facility and you may feel differently. There are some very good ones, in which you will pay dearly to live.. But not everyone can afford the best.

    Lisa I wish you Peace and understanding for those who may not think the way you do or believe in things you believe in.. Because You Are Not Always Right.

    • Lisa
      March 14, 2012 at 3:27 pm #

      Meredith, I am all for open discussion, and no, I don’t need everyone to agree with me. That’s why I don’t censor comments; I generally publish all comments with the exception of comments that are blatantly mean and/or combative – which yours is bordering on. Seriously, if you don’t like me, or my attitude, or what I write, then please do yourself a favor and don’t read my blog. There seem to be a whole lot of people who appreciate what I write and how I write it, so if it doesn’t work for you, there are plenty of other blogs that I’m sure would be more your cup of tea.

      This discussion is getting off topic. I’m not sure what you have said here has to do with making arguments and having discussions about social issues and not making God part of the discussion.

      As for Down syndrome, you and Elaine both seem to be stuck on where an adult with Down syndrome will end up living. Not all group homes are horrible, I’m sure, and not all adults with Ds even end up in group homes. I think my husband and I are pretty realistic in our expectations of Finn’s future: we both realize that there is a good possibility he will always live with us. Neither of us has a problem with that. That doesn’t seem like a horrible existence to either of us. Finn is happy and healthy and very much loved, and although I know he will face challenges and adversity as he grows up, and we his family also will, nobody is guaranteed a life free of challenges and adversity. I really think so much of it has to do with outlook and attitude. You may think I’m a glass-is-half-empty girl, but if that were the case, then I doubt I would be so accepting and optimistic about Finn’s life.

      I would appreciate it if you could keep your comments on topic. I won’t publish anymore comments that are merely meant to bash me or put me in my place.

  9. TUC
    March 14, 2012 at 3:57 pm #

    Meredith,

    Actually when I first met my husband he was an employee at a state run group home for adults with moderate to severe disabilities. I could not believe how beautiful this home was, and how well cared for the gang who lived there was. They had an in-ground pool with an adaptation that made sure everyone was able to enjoy it.

    My husband routinely took the clients to movies, shows, out to eat, on field trips, and just to do whatever. But, what got me the most was that he loved them. Most of them didn’t even get visits from their own families (who you seem to think would be better for them) but my husband and the others that worked for them, LOVED them.

    Do bad things happen in group homes? Yes of course, because bad things happen everywhere. But I have had enough experience with group homes (not just the one my husband worked in) to know that there are so many people out there in the home care services field that are there because they care about people with disabilities and want to be a part of making the world a better place for them.

    • Grace
      December 8, 2012 at 8:56 am #

      …because bad things happen everywhere?

      I don’t get why some of these moms can’t advocate without downplaying the struggles of disabled people. The abuse that happens in group homes goes way beyond ‘but bad things happen everywhere’.

  10. Lisa
    March 14, 2012 at 5:49 pm #

    The comments raise a lot of questions:

    Elaine, if it was legal and completely pain free, would you end your 35 year old son’s life tomorrow because of the struggles he’s endured and the drain he will be on your family after you’re gone? And if you wouldn’t, why not?

    Also, you mentioned black people, and gay people, feeling as though they are treated unfairly. When slavery was legal, would you have recommended aborting a black fetus? A gay fetus?

    I don’t know the answers to these questions, and I don’t think Lisa purports to either. However Lisa may express her viewpoint, whether you consider it harsh or not, I think the main point was to have current, realistic information before making the decision: doctors readily recommend aborting disabled fetuses, and they hold particular sway over their patients and can unduly influence them. Lisa, and those like her, are trying to advocate the other side so that there’s some balance. And it’s not a level playing field because of the influence doctors, long-held public perceptions about disabilities, and history have on expecting, unprepared, parents.

    And if I understand your views correctly (Elaine and Alisha), it is basically because our society is less accepting of those with disabilities–even your definition of a productive life–that is the problem. Yeah, they need help from us, and we might have to assist them for the rest of our lives, but it just depends on how you view that. And it might make the assister more productive.

    My son has Down syndrome. He is 3 and a half. He really hasn’t done anything “productive” that I can speak of. But he seems to be enjoying himself so far.

    • Lisa
      March 14, 2012 at 5:53 pm #

      Oops, don’t know how that happened. I (Lisa’s husband) wrote the above comment, not Lisa. Must’ve been signed in on her computer.

  11. Megan @ My Stubborn Little Miss
    March 14, 2012 at 6:52 pm #

    I’d like to add something to this discussion, again, that has nothing to do with God but that I hope brings us back to Lisa’s initial (and I think, well-stated) point.

    What makes a life valuable? Recently we had a babysitter for our daughter (with DS). This sitter has a younger sister with cognitive disabilities and health issues.

    She told me that she thinks having a child with a disability in the family makes your other kids better. She said that she’s learned things she couldn’t have been taught apart from living with her sister.

    Meriah is doing a series right now on siblings of people with disabilities. I think that yes, there are challenges, but good comes of it. (Oh, and Meriah’s not a Christian, either. I am, but I think that both Lisa and Meriah have good stuff to say.)

  12. Wendie
    March 14, 2012 at 7:03 pm #

    What a deep and profound conversation this has become. I normally don’t post on blogs, but this discussion has made me really think about “What Would I Do If One Of My Children Had Down Syndrome”… I know I would be very scared, nervous, angry of the unknown, as I am sure most mother’s feel when their child is diagnosed with Down Syndrome. My mother and I where sitting in a restaurant the other day and we noticed a Young Girl with a baby. We noticed the baby had Down Syndrome.

    My mother turned to me and said, “They say babies with DS are happy babies”. I looked at my mom and said, mom that is a sterotype, I bet that little girl can create havic if she is upset and I am sure her lungs are good. My mother would live any child and she told me when I was pregnant that not matter what that child would never go without love and we would welcome it with open arms.

    Sterotypes.. I dislike them so much, but they are here. When I saw that young girl with her daughter, my heart broke.. I think because I haven’t experienced that in my life. I am 40 years old and was diagnosed with Cancer just 4 months ago. My life and my families life changed forever. People say “Oh I can’t imagine how you feel” they are right.. Unless you have the disease you don’t know what it feels like. Just like, I don’t think that people who don’t have a child with DS, really know what it is like and are misguided. My belief is people have to go through something or experience something to really understand it. That is a fine line and I don’t feel all people are Ignorant because there first thought is to run when a challenge is put in front of them. Lisa and Mike, how did you feel about children with Down Syndrome before you had your child and became knowledgeable and Advocates in the world of DS?

    • Lisa
      March 14, 2012 at 9:00 pm #

      Wendie, I knew next to nothing about Down syndrome before my son was born. I had never had any direct contact with anyone with Ds; I had only seen people with Ds from afar, and rarely. I did not receive a prenatal diagnosis with Finn, as I did not do any testing (we were willing to take whatever baby we got). When we received Finn’s post-birth diagnosis of Ds, yes, I was scared, and yes, I grieved the child I had expected to have. It was never difficult for me to love and embrace Finn, though, and at some point the grieving came to an end and I realized that although Finn is different from my other children in some ways, he’s still a child who has a full range of emotions, who has potential, and who deserves love – love that is not at all difficult to give to him.

      Michael actually worked in the field of disabilities for many years before becoming an attorney. He worked at a live-in residential facility for people with moderate to severe disabilities in New York for several years, and then at another facility in Arizona (funny that he and TUC’s husband have that sort of work history in common!), before moving to California and working for a number of deaf agencies – he taught himself American sign language and became so fluent in it that he worked as an interpreter for several years as well as doing advocacy work for the deaf. So when Finn was born and we learned that he had Ds, Michael kind of took it in stride, because disabilities in general were not foreign or scary to him.

      I am sorry to hear that you are battling cancer. Michael battled cancer three years ago. My thoughts are with you.

    • Holly F.
      March 14, 2012 at 9:47 pm #

      I’m obviously not Lisa but would like to answer too:

      I did not have a prenatal diagnosis as it would not have made a difference. I was told that the doctors suspected Down syndrome within minutes of Trent’s birth. It was confirmed a few days later.

      I grew up in a rural part of Louisiana. The only people with Down syndrome were adults, and they lived in a group home. They had field trips often and seemed happy. I was frightened of them though. They didn’t talk clearly, they drooled, and they shuffled when they walked. My mom told me not to stare, just wave and say hi. When I did that, they would usually get excited and wave back. But all their teeth had been removed (or rotted out, I don’t know) and even their smile seemed ugly to me.

      Even with a degree in Psychology and a fundamental appreciation for differences in all people, when I was told my son had DS, I saw those adults with no teeth, drooling on themselves. I felt miserable and grieved. But the more I touched his hand in the incubator, the more I loved him. He was sickly and all I cared about was him remaining alive. Didn’t care about a syndrome. JUST LIFE. Please God, let my baby live.

      As soon as I could, I found people online. I found our local support group. I bought books. I educated myself on what the life of a child with DS is like…right here, right now.

      Less than a year after he was born, I stopped wanting people to tell me they were sorry. I’m not sorry. I’m estatic. I found my purpose in life after his birth. My career has changed. I’m on the board of a support group. I have a passion for all things Down syndrome. I hope to adopt a child with Down syndrome in the future.

      To me, that is what I want expecting moms to get. Before they run from the challenge and to a life-altering decision, they need to examine their beliefs and stereotypes of Down syndrome. Are they picturing a perfectly happy baby all the time? What about an adult with no teeth that never received therapy? Are their beliefs current or outdated? I support them seeing all aspects of a life with Down syndrome. Baby, toddler, adult. Unfortunately, adults at this stage are not typical of what we can expect from our kids in the future because there are too many different variables that change outcomes.

      What bothers me the most is that doctors are not providing current information. They are giving parents only one prediction and that is similar to my experience as a child: An ugly picture that does not show the truth. Why would they do that? If a woman meets my child and/or a hundred people with Ds and gets current data but still decides to abort, I wish her peace with her decision. But if she makes the decision with misinformation, outdated data, or before meeting anyone with Ds, I admit that I judge the heck out of her. I assume she thinks my child and Lisa’s child are worthless and imperfect. I still wish her peace but I admit I judge her. …..shrugs….we all judge sometime or another…..child molesters, child abusers, drug dealers, etc.

      Ignorance is the lack of knowledge. I just want people to have the knowledge.

      And btw, some stereotypes are based on at least a little bit of reality. Most of the babies with Ds that I’ve met have been more happy than babies without Ds. My son is one of those. Happy almost all of the time. I call it “our secret.” People feel sorry for us having a child with Ds but the truth is, we are happier because of our child. Our life is fuller.

      I’m sorry that you are battling cancer. I wish you health and healing. Keep on keeping on. 🙂

  13. Caryl Becker Phillips
    March 15, 2012 at 3:07 am #

    Wow Elaine, you are one angry person. I would like to suggest that you get yourself some counseling before you reply to anymore blog posts. I read the same post you did and I cannot see how you came to the conclusion that Lisa was passing judgement on anyone. All I read was a plea for people to make informed decisions and not buy into everything the medical professionals tell you. The other point I gleaned from the post was that one’s religious beliefs have nothing to do with whether you are pro-life or pro-choice. In addition, pro-choice does not necessarily mean pro-abortion. I know Finnian. I love Finnian. And for you to even intimate that his life is any less valuable because he has an extra chromosome pisses me off. As a matter of fact Elaine, it pisses me off that you obviously feel that your own son’s life is less valuable than a typical person’s life. And furthermore, bringing up Lisa’s ex-husband the way you did after she posted how guilt ridden and painful that whole experience was for her, was a really crappy and vicious thing to do. You are not a nice person Elaine. I am sorry for you.

  14. Wendie
    March 15, 2012 at 2:35 pm #

    This is response to Holly F’s Comment:

    She stated: If a woman meets my child and/or a hundred people with Ds and gets current data but still decides to abort, I wish her peace with her decision. This comment is one of the most admiral comments I have read in years. You are leaving the decision up to the individual and realizing this is a decision she has to live with.. It speaks volumes. By no means am I saying aborting a pregnancy because you have discovered your child has D’s is right, but it is a choice for that women to make and it is a decision she will have to live with. All children and adults want to do is fit in somewhere to find their place in this world, it isn’t always easy but it is a Journey.

    Thank you for your wishes with my diagnosis of cancer.. and I will Keep on Keeping on (for myself, my two beautiful daughters, my husband and the two best parents a girl could ask for).

  15. Kristen's Mom
    March 15, 2012 at 3:27 pm #

    If I could just chime in for a minute and shed a positive light on having an adult child with Down syndrome. Kristen was 24 years old when she died. I think I have a little experience with an adult with Down syndrome. Kristen was HAPPY she was a JOY and she LOVED and is LOVED by many. I never planned to send her to a group home as I planned to have her with me forever. Yes, I did realize that she may outlive me. I have 5 other children who adored her. Not one us us EVER felt she was a burden. My 5 children often talked over what would happen if I died before Kristen. They all jokingly fought over her. They ALL offered to take her home with them and continue to care for her. My 3 daughters are trying to figure out how they can get their own child with Down syndrome. They have all seriously looked at Reece’s Rainbow and when the time is right they may make plans to save a child. Kristen did not like school. She attended school on and off, but mostly she was home schooled by me. She fought leukemia for 8 of her 24 years. She never complained. We kept her comfortable and cared for her. And still she was NEVER a burden. She was a light in this dark world.
    My only problem for the last 20 months is trying to live without her by my side.

    • Lisa
      March 15, 2012 at 3:59 pm #

      Thank you for sharing these beautiful thoughts. I’m deeply sorry for your loss.

    • Holly F.
      March 15, 2012 at 4:38 pm #

      Oh my, I am so sorry for your loss. IYou are in my prayers.

    • TUC
      March 15, 2012 at 6:12 pm #

      Kristen’s Mom,

      You’ve brought me to tears. Peace to you.

    • Sheree
      March 17, 2012 at 12:27 am #

      I think about Kristen often. Thank you SO much for your response. This is how I imagine most of us parents feel about ALL of our children, regardless of how many chromosomes they have. And the feelings your daughters have/had for Kristen only reiterates that love. The world is a better place because of Kristen, because of you, and your entire family!

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