Faith and Disability – Blog Hop!


I am, as many who have been reading my blog for any length of time know, atheist.  This seems to be somewhat unusual in general – at least in my community where Christianity runs rampant – and even more so in the Down syndrome community I have become a part of online since Finn was born almost four years ago.

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I grew up Lutheran . . . whatever that means.  My mother took me and my brothers to church sporadically.  My dad never, ever went with us.  He was, I believe, agnostic, and also being the ’60s throwback rebel that he was, he made plenty of irreverent jokes about the “Jesus freaks” and the “Holy rollers.”  In any event, Christianity did not play a huge part in my upbringing – and yet, I grew up with steadfast beliefs: that it went without question that God existed, and that he watched my every move (and I had plenty, therefore, to feel guilty about), that I must confess all my sins daily via prayer (most nights while I prayed, my mind would wander and I’d inevitably fall asleep mid-prayer, which necessarily had to be added to the running list of “sins” I must confess the next night), and that even so, on Judgment Day, I would have to stand and face God and answer for every single wrong deed or thought I had ever committed in life.  I don’t remember ever getting any sense of comfort from my beliefs.  Sure, there was the promise of the afterlife, but one wrong move could land me in the fiery pits of Hell, and even if I ended up in Heaven, the idea of eternal life – even in paradise – freaked me the hell out.

In my adulthood, I tried a number of different churches, trying to find a sense of belonging, searching for that special something that would fill the void I carried around inside of me (the void I later realized was depression).  I never found it, and in fact, eventually abandoned organized religion altogether, so appalled and offended I was at the hypocrisy and judgment of these mere mortals (“Love your neighbor . . . homosexuality is sinful . . .”).  Still, I clung to my fundamental beliefs, insisting that one could have a relationship with God without being part of some man-made religion.

Eventually, though, my beliefs began to fall away.  I had always had questions that I mostly just swallowed, but there came a time when, on some subconscious level that I only recognized later, I began to allow the questions to take shape, and I began to explore them, believing, I think, that whatever faith I had might be made stronger by being put to the test of rigorous questioning.  It didn’t, however.  The more questions I had, the less sense the so-called answers made, the more it all began to resemble folk stories, myths, and fairy tales, with no substance to back it up.

It was a process.  I went from calling myself a Christian, to then agnostic.  But even that felt dishonest – it wasn’t really that I wasn’t sure.  Finally, only about five years ago, I let go and called myself atheist.  I don’t believe that any god or divine force exists.  I don’t believe there is anyone or anything looking out for any of us.  I don’t believe there is any afterlife; while I do believe in the “soul” in the sense that every person has an “essence” that makes them them, I don’t believe in a soul that is separate from or survives the body.  When you’re dead, you’re dead.

And you know what?  When I finally allowed all those old beliefs to fall away, I felt a weight lifted.  I felt free, and at peace.  And I realized that this life – this one life I have to live – is even more precious than I had thought before, because it’s all I’ll get.  Those feelings of peace and liberation remain with me today.

So how does this all play out in raising a child with a disability?

Everyone approaches parenting – of any child, with or without disabilities – from the perspective of whatever beliefs and philosophies they hold.  I’m no different.  My perspective just seems to be different from a lot of people’s when it comes to matters of faith.

The religious, I have found, seem to have a need to find divine meaning in things.  Many believers in the Down syndrome parenting community believe that God has given their child to them – specially chosen – to teach them some great lesson, or to use as a tool to teach other people some great lesson.  Some believers believe that having a child with Down syndrome is a special blessing; other Christians believe it is a punishment on the parents for unrepented sins.  Some of these views infuriate me because of their dangerous ignorance.  Some irritate me for the same reasons that many Christian views irritate me – views that have nothing at all to do with disability, but rather a propensity to foist one’s beliefs on others.

As soon as Finn was born, I felt bombarded by Christian sentiments.  “Do you have the Lord?” I was asked.  (As if “having the Lord” was necessary to cope with the awful tragedy of having a child with Down syndrome.)  “God never gives us more than we can handle,” I was told.  (An empty platitude if I ever heard one; plenty of people can’t handle, as it turns out, what life throws at them – that’s why there is suicide.)  “God gives special children to special parents,” I heard over and over.  (Really?  Even in Eastern Europe, where babies born with Down syndrome are still routinely institutionalized?)

Bah!

Life is random, that’s what I believe.  Nobody and no thing is in control behind the scenes – and that realization allows me the freedom to accept Finn without the weight of anger at some divine entity for burdening my son with a disability, and without the sense that I am expected to utilize Finn to get some dogmatic message across to anyone.  I believe that sometimes, in the dance between egg and sperm, in the delicate division of cells and chromosomes, something out of the ordinary happens, and a child like Finn results.  Life and parenting themselves provide innumerable opportunities for growth, for soul-searching, for learning profound lessons; there is no need to attach anything divine to it.  We can take whatever meaning we choose from every single experience we have.

My faith lies in science – to better understand Down syndrome – and all other disabilities – from a clinical standpoint, so that individual lives might be better lived.  My faith lies in humanity, and people’s ability to see beyond outward appearances, to embrace diversity, tolerance, compassion, and inclusion.

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28 Comments on “Faith and Disability – Blog Hop!”

  1. TUC
    July 5, 2012 at 11:38 pm #

    I have always found that religion is the biggest turn off for believing in God. And too many Christians have turned others away through their words and actions. That is why it is so hard to be one.

    You explain yourself well 🙂

  2. Becca
    July 5, 2012 at 11:46 pm #

    Wonderful post, Lisa! Just the other day someone mentioned to me that you were an athiest, which I don’t think I had realized. Bravo to you for fearlessly discussing this openly. I have very similar views, and very *fearfully* published my blog post today. As I’d expected, not everyone agreed with me, most spoke very fairly and non-judgmentally, sharing their own views, one (so far) has vowed never to read my blog again. But that was not really unexpected. To judge someone because of their beliefs strikes me as terribly *un-Christian.* It’s sad to me. Anyway, I had a dream lastnight that I had to read your blog today. I’m pretty sure that was not God talking to me. 🙂

    • Lisa
      July 5, 2012 at 11:51 pm #

      Wait – I’m trying to wrap my head around the fact that “someone mentioned” me! Awesome 🙂

      Anyway, yeah, I don’t doubt that I’ll get a few angry people commenting on this – happens every time I write something about my (non)beliefs.

      Thanks for reading me!

    • Holly Waligora (@notaperfectmama)
      July 6, 2012 at 12:24 am #

      I know we don’t know each other well Becca, but I’m one nosy B…so I have to ask, what small minded person will never read you again?
      And Lisa, like I told Becca….different beliefs is what makes the world go round and though I disagree, I do love reading other people’s beliefs and opinions…we can all respectfully agree or disagree….after all, we are adults…

      • Becca
        July 6, 2012 at 2:12 am #

        I wish I knew, Holly, but alas, they were cloaked in anonymity. I just wish people could celebrate the differences of opinion like mature adults. If we can’t be honest, where does that leave us?

  3. capecodgirl1
    July 6, 2012 at 12:17 am #

    Thanks for expressing your views so honestly. I wish I could express myself as well as you. I unfortunately am afraid to come out and “confess,” that I am an atheist. I feel like so many people will look at me like I’ve commited murder. Sad that I feel this way. I should stand up for my convictions and not be afraid to state them out loud. But, for now, I’ll be content with reading your blog, knowing I’m not the only one who feels this way. Oh and my husband thank goodness! I look forward to reading you!

  4. Gillian Marchenko
    July 6, 2012 at 12:29 am #

    First, off topic, but you are such a great writer, Lisa.

    And thanks so much for sharing your take on faith and disability. I learn a lot from you sharing your honest view of religion. Thanks!

    • Lisa
      July 6, 2012 at 1:51 am #

      Thank you, Gillian! This means a lot coming from a real writer like yourself 🙂

  5. ckbryl
    July 6, 2012 at 12:37 am #

    I am not sure why we as humans feel the need to ‘call ourselves’ something. In this way of thinking, by calling myself a Christian I am placed into a certain file or category in someone’s brain. I am not anything but me and with that there are many facets. I do believe in God and angels and saints and an afterlife. My experiences and feelings have led me to this place of peace. I have no problem talking about God and faith and divinity. If one wants to place me in a file or category for that then we probably won’t be friends for too long.

    I enjoyed this post and your explanation. While I may not agree, I do appreciate your honesty and way of looking at life. I am curious how you explain things like feelings, compulsion, and depression? Really, I am curious because these are areas that have lead me to believe more deeply in God.

    Love reading your insights.

    • Lisa
      July 6, 2012 at 1:53 am #

      I think feelings and compulsions and depression and other states of mind can be explained scientifically. It’s all brain chemistry, which is influenced by both environmental factors and genetics.

      • Cindy
        July 6, 2012 at 11:44 am #

        I can appreciate science and brain chemistry but there comes a point in science where certain things cannot be explained, where the answer is ‘well, that’s just how it is’ or ‘we think but can’t prove’. This is where science also has to yield to faith. Faith that something will work or is true. While God may not play a role in science, belief in something unknown must.

        We all question faith and God and science and those who say they don’t or never have are lying!!!!

        Regardless of one’s belief in God, what are your thoughts on the Bible as a historical guide and the lessons it presents?

      • Lisa
        July 6, 2012 at 4:30 pm #

        Science doesn’t claim to have all the answers, and is always searching for answers through rigorous analysis and testing. Science is open to new information, new knowledge, new conclusions, always willing to abandon old ideas when new information comes to light.

        I think the bible is a book of fiction. I think it’s full of contradictions and open to so many interpretations (to suit pretty much anyone’s agenda) that it’s completely ridiculous to use it as the basis for one’s moral existence.

        I can assure you that morality exists without faith or religion.

  6. Donna
    July 6, 2012 at 1:29 am #

    I “found” your blog from Becca’s blog through the blog hop. Love this post. Very well said. I am gonna go back and read some of your previous posts

  7. Holly F.
    July 6, 2012 at 1:41 am #

    1. Thank you for this. It is timely for me, and I have a lot to say. 🙂

    2. “Still, I clung to my fundamental beliefs, insisting that one could have a relationship with God without being part of some man-made religion.”

    This is where I am currently. I have recently declared myself no longer Christian, but only to people that I know can accept me. My entire family, especially my Catholic Deacon father, will be terribly miserable and will try to “bring me back.” It will be a family rift…especially as they assume my children will be raised with no morals, as though only religion instills morals. So I have avoided it, and it is painful to pretend to be something I’m not. But like you, I felt a weight lift when I finally let go of the guilt and the NEED to believe something I didn’t.

    3. I still believe in a god. I’m not sure I could ever be atheist and for now, I feel good about my beliefs…which I think is the point of it all….coming to a place where beliefs (atheism is also a belief in my book) feel good.

    4. I would still like some kind of church fellowship, but here is Mississippi, I’m out of luck. There are Christian churches on every block and very little else.

    5. I see the birth of my son with Ds as my purpose in life….but not necessarily religious. Everything about my life made sense when he was born. My career, my talents, my passions, even my childhood. I have to admit that he feels like a reward also, for pain and rage I endured early in life. Does sound rather religious/spiritual doesn’t it?

    6. Finn’s forehead is just begging for a kiss.

  8. peacefroggal
    July 6, 2012 at 1:45 pm #

    Hi! Found you thru the blog hop. I did want to say I enjoyed your post. I was a former athiest, but am now Christian. I completely understand your view points as those were all the same thoughts I had! I hate when people put us in a bubble – aka… those athiests, those christians. Because we all do have our own “souls” who makes us – us!! And even If our opinions differ, I must say, you are an amazing writer! I look forward to you posts as a new follower!! 🙂 Have a great weekend!!

  9. Akire
    July 6, 2012 at 5:26 pm #

    ello.
    I have a slightly different, though similar, perspective, as I am a person who has had numerous disabilities (autoimmune, psychiatric and circulatory) since childhood who happens to be an atheist. I am also quite involved in the disability community, both on and off the net, and religion seems to be springing forth in every corner. Throughout my journey, I have heard it all: that everything happens for a reason; that I have been given these illnesses to teach a lesson on life; that God is with me during all of this; that, if I just put my faith in Jesus, all would be well and peaceful in my life; that God never gives us more than we can handle; and, as I am sure you can imagine, countless others. From within the community, though there seems to be shared anger at many of these, others embrace these beliefs just as well and feel the need to press them on others. For added perspective, I am also non-binary transgender/genderqueer, pansexual and a trauma victim.

    At first, I understood that most all of it was done with positive intentions and was able to tolerate it. After awhile, though — and after making it clear what my beliefs were — it began to feel painful and disrespectful. My disabilities were not some gift or experience of pain with divine purpose and, based upon my numerous suicide attempts during adolescence (I am, thankfully, stable and happy now), I am not sure I buy that one is never given more than they could handle. This life is difficult and there is no way around that. There is no way that severe episodes of depression, vivid flashbacks of abuse (and the abuse itself!), significant mood dysregulation, debilitating anxiety, severe joint inflammation and deformity that prevents me from walking long distances some days without a mobility aid, life-threatening cardiac complications, muscular spasms and a host of other symptoms — there is no way that I will believe that this was all with divine purpose and, even if it was, it would not be the work of a loving being.

    That said, life is also beautiful, full of joy, full of passion and full of hope. I have been stabilized as much as possible for quite some time mid-adolescence). Enough that so, when I turned sixteen, I left high school early for college as I was bitterly and painfully bored (I was also identified as highly gifted and suffered all of the complications of that, too) and did well. Life has brought me to wonderful places and I am, by no means, a bitter, hateful, forever mourning person. I’m [most of the time] happy, passionate, eccentric and sarcastic as all Hell.

    But please, please save the platitudes.

  10. Carrie
    July 6, 2012 at 5:55 pm #

    Wonderful entry. Thank you.

  11. Meriah Nichols
    July 6, 2012 at 8:29 pm #

    I always love your posts, you know (that’s why you are one of the few blogs I actually subscribe to). But I think I’m especially fond of your posts on your belief systems. I was wondering why I like them so much, and I think I finally got it with this one – you remind me SO MUCH of my Grandma. She has the very same belief system and I’ve always enjoyed her pragmatic approach to… well, just about everything.

    She’s 94 now. Still hanging out with Grandpa (97). Still firmly on course to be as she says, “worm food soon”.

    Anyway, thanks for posting and sharing your beliefs, story and perspective

  12. starrlife
    July 7, 2012 at 3:55 pm #

    Well of course you know I am not a believer- but I’m also not a “science as religion” believer either. Unfortunately I work in psych and I tend to be skeptical of the so called researches results and definitely of the biochemical theories as hard science. But I AM a firm believer in respecting whatever other people choose to believe as right … for them.
    And , as usual I enjoy reading your thoughts and your comments. I really liked Cindy’s comment. And I’m not sure what people should base their “morality” on since science has almost none (rarely even following ethical boundaries).
    While I don’t follow the Bible I think there is wisdom there.
    I guess I darn near anti- everything except not hurting others or selves as best we can 🙂

  13. Lisa @ Mom, Net Mom
    July 8, 2012 at 4:23 pm #

    Stumbled upon your blog…um…don’t really know how. One of my early morning rabbit trails on the Internet. I’m one of “those” mommy bloggers. 🙂 I loved reading your post and look forward to exploring your site and following you.

    Thanks for your honesty.

  14. Rebekka K. Steg
    July 17, 2012 at 8:29 am #

    Loved loved loved this post Lisa.

    I’m so sick and tired of platitudes myself – especially the “God won’t give you more than you can handle” or “it’s all a part of the plan”. It just makes me angry.

    Thank you for writing 🙂

  15. Matt
    July 30, 2012 at 4:12 am #

    I find myself in a very similar situation… After a nearly textbook natural labor and delivery, my wife gave birth to our son two weeks ago – nearly a month early. We knew due to his pre-term status that a neonatal team would be required to give him the once-over a couple of hours after he was born, but we were stunned when they dropped the DS bomb on us.

    I am a man of reason. I appreciate science though I hold very little in this life up to a standard of absolute certainty. I am apathetically agnostic and have zero use for religion after minoring in it in college.

    Right now, I am simply doing my best to remain calm and cordial in the face of theoretically well-meaning comments like “it’s all part of god’s plan,” “god chose you to be Baxter’s parents,” etc. without bringing to anyone’s attention how inane and condescending those comments are when you divorce them from the shroud of their simplistic world view.

    • Holly F.
      July 30, 2012 at 6:58 pm #

      @Matt and wife,

      Congratulations on the birth of your son!! And welcome to the group of parents with a child with Ds. We are generally a supportive group of people. I hope your son is as well as he can be considering the early birth and frequent complications for babies with Ds.

      My son is almost four now. We had a rough first year with heart surgery and other health conditions, but it has gotten better.

      I would like to offer a bit of advice, take it or leave. 🙂 If you and your wife are big readers/researchers, be sure to balance out the reading list. When I first got the diagnosis, I read the cold hard facts of Ds, which mostly included “more likely to develop” seemingly every health condition in the world. It made me depressed on top of the shock of the diagnosis. A friend gave me the book “Gifts”. It is a collection of personal short stories from parents of children with Ds. After reading a few chapters of the “more likely to develop” drama, I would balance it with short stories from parents years into raising their child. While religion seems to be included in most of the stories, it was still very beneficial for me to know that my son was not and would not be the sum of a bunch of health conditions. I felt peace reading how those parents also felt sad and shocked at first, only to feel joy later. I can attest that it has been the same way for me.

      • Matt
        July 30, 2012 at 9:06 pm #

        The first thing I did after they put Baxter in the incubator was pull out my iPhone and google DS. The doctor was talking about echocardiograms and scary medical things like critically low platelet counts and I started to wonder if this kid was going to survive the day – and whether it would be such a bad thing if he didn’t. So I know a bit about the potential medical problems associated with DS.

        Over the past 15 days, Baxter has passed 2 echos, spent a couple days under the bilirubin lamp, weaned off oxygen tubes, IVs and antibiotics. He nurses well and seems to have much more energy and strength now. He’s close to graduating from the hospital and as you might imagine my wife is struggling to keep it together with the now round the clock nursings nearly two weeks after she was discharged. We are too busy hustling from a to b to worry much about the future. But given where we were a few hours after his birth, it has all been good news.

        We received Gifts yesterday morning and I’m sure we will both take the time to read it more than once. We are fortunate to have a close to ideal nearly 3 year old daughter who is eagerly awaiting our son’s homecoming. I worry about her a bit: that she’ll get the attention she deserves, that she’ll spend much of her adolescence avoiding awkward situations because of her brother’s condition and that ultimately, she’ll be burdened as his primary care giver several decades from now. But it’s easy to dismiss those thoughts and just focus on getting this kid healthy enough to come home. The future will take care of itself. We just need to prepare ourselves for what’s in front of us and worry less about what may arise down the road. On front of us now is his next nursing and the results of his 3rd echo.

      • Lisa
        July 30, 2012 at 9:29 pm #

        Matt, hopefully you got the email I sent to you. I’m really glad Holly spoke up here, as well. There is a whole community of parents out here who have been where you are now, ready to offer support and encouragement. You sound like you’re keeping your feet on the ground and your head straight during this early, difficult time. Many of the things you mention bring back a lot of memories for me from when Finn was a newborn. Believe it or not, there will come a time in the future when all this will be a hazy memory, and life will just feel like life. Again, hang in there – you really sound like you’re doing fine, but don’t hesitate to reach out for support whenever you need it.

        And I agree with Holly – try not to overdo it on the research. Nothing can tell you what your son will grow to be except your son. Right now, more than anything, he’s just a baby who needs all the same things any baby needs.

    • Holly F.
      July 30, 2012 at 10:16 pm #

      Matt,

      I’m glad to read Baxter will be graduating soon. 🙂 Yes, nursing a child in the hospital is a feat. Your wife has my admiration!

      My only other recommendations (forgive me if Lisa covered this in an email) are to look into Early Intervention and support groups. Each state has an Early Intervention program. It is a voluntary program so if you do not find it beneficial, you don’t have to stick with it. I am on the board of our support group, and we have lots of fun events. It is nice to see people with Ds of all ages. The support group may have a welcome basket or packet that gives you further resources for your area.

      • Matt
        July 31, 2012 at 3:36 pm #

        Thanks Lisa and Holly. Three seconds ago seems like a hazy memory these days, so I can’t imagine this experience being very vivid down the road. I just feel horrible for my wife because she’s very type A and takes Baxter’s little setbacks and non-successes personally.

        Yesterday the Dr. seemed relieved to inform us that they discovered a small VSD and a small ASD on the echo. My wife and I, of course, were less than relieved about the news. The doctor wants him to gain a little more weight, so Baxter’s graduation may be delayed a bit. We might transfer to another hospital where my wife and son can share a room. This hotel -> special care nursery back and forth situation beats the trek from our house to the hospital, but we’re not going to get a good system set up until they’re able to be in the same room 24/7. Just trying to get over a hump or two before we get home.

        Immediately following his iniyial diagnosis, days before it was confirmed, the hospital connected us with the state interventionist program and SSI info. Friends and family have connected us with local folks going through similar situations, so we have received advice and support, but we are certainly not at a point where we’re turning any of it down. When we get home and settle in, we will start to focus a little more in that direction.

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