January 26, 2008

But I'm not the only one


Summer 2003
Originally uploaded by Citizen Rob.
I attended a media party here in Dallas the other night. These sorts of things aren't always the easiest for me, and not just because I don't drink myself into "life of the party" mode so much anymore. (What was cute when I was in college would probably just be sad now that I'm, you know, thirty-ten.)

Unlike the healthy (perhaps not?) narcissism that I display in my writing, I can be a little shy in person. I also feel a lot more comfortable talking about Schuyler (or just about any other topic you might bring up) than myself, which is probably something I need to get over in roughly twenty-three days. It feels strange, as it must to a lot of authors, having to simultaneously present myself as both salesman and merchandise. Add to that the fact that I tend to feel big and clumsy and unattractive at these events ("Oh my god, who invited the Cloverfield monster to this thing?"), and I don't know, perhaps I should re-evaluate that whole "not drinking heavily" decision.

The party this week wasn't bad, though. I saw a lot of people whom I've met before, I got to talk a bit to a journalist whose work I really dig, and most of all I got to spend some time with a friend whom I haven't seen in a while. We went and got a bite to eat after the schmoozefest, and I found myself opening up about some aspects of this whole experience that I haven't really allowed myself before. I don't know why I've been so reticent to do so, especially since I expressed much of it in my book. I guess it's easier to type my guts out than actually talk about these things.

The topic of personal strength came up. Everyone wants to be strong, and I suspect that on some level we all feel as if we've failed in that regard. I can say for certain that I do. I admitted something that I haven't expressed very often to that many people, the fact that I cry almost every day. Never in front of anyone, and it's never a big deal, but at least on the days that I go to work, I can get a little weepy. (My office is forty-five miles away; perhaps THAT'S why I'm crying.) I get it out of my system, and then when I get home, I'm ready to do what's got to be done.

I went back to my archives here to see if I'd ever spoken about this before. I didn't find anything exactly on topic, but I did find this, which is close, I guess.

Sometimes the way broken parents of broken children get through it all is to step into the dark and lose their fucking minds, to cry hard and insult God as the bully that he undeniably is, and just stop being the brave little soldier for a while.

That's how it happens. You exhaust yourself of the frustration and the unfairness of it. You empty out that part of you, the little pit in the center of you that stores away the fear and the anger and the protective fire that you can use against child molesters and internet bullies and mean bitey dogs but not against God and Fate and a child's brain.

And then you wait for it to slowly fill again, I guess.


One of the stories that I share in the book but hadn't ever actually told anyone before took place the evening that we got Schuyler's diagnosis, back in the summer of 2003, roughly a thousand years ago. I had to go straight from the doctor's office to a meeting at work, where I mostly just sat in the back and pretended to watch a Powerpoint presentation while my heart broke into jagged little shards. When the meeting was over, I stopped by my desk and googled "congenital bilateral perisylvian syndrome", and when I'd read quite enough, I left for home.

On the way, I saw an old Gothic-looking church that I passed every day, and something just snapped. I pulled over, got out of the car and, in my anger and my hurt, actually attempted to vandalize the church. (I didn't succeed; put down your bibles and relax.) Finally I dropped to the ground and offered up to God what was perhaps the most sincere prayer that I ever prayed in my life. It was a ridiculous prayer, but it was one that I meant with everything I was.

I asked God to take Schuyler's monster from her and give it to me instead. I probably didn't ask so much as demand it, really. I was thirty-five years old. I'd said enough in my lifetime. Give it to me and let her walk away free of it.

I know how silly that sounds now. But at that moment, I wanted it so much and meant it so sincerely that as soon as I said it, I sat quietly for a moment, waiting for it to happen, bracing myself for the transformation that I knew was coming, that HAD to come, because I wished for it so hard and because it was fair, it was a fair trade.

God said no. And so I cry when no one's looking, and I hold a grudge against God, because he was wrong to say no.

In his interview in D Magazine, Tim Rogers asked Schuyler about her dreams. I'm not sure if she understood what he meant, but she said that she dreamed of Santa (well, of course she did), and that I dreamed of King Kong. As a matter of fact I don't, swell though Kong may be.

I dream of Schuyler, but not as she is. In my dreams, she speaks to me, always comforting me, telling me that everything's going to be okay. I've written about that before, both here and in the book. But it's only now that I realize something else about these dreams, something that I never noticed before.

In my dreams, she speaks to me, but I almost never speak back to her.

The Schuyler in my dreams is the little girl that she would be if God had said yes, I suppose. Some dreams deserve to come true; some prayers deserve to be answered. I still haven't made peace with the fact that they haven't, but I'm still working on it.

43 comments:

  1. Anonymous1:02 AM

    Now, I'm not one for prayers, but I can't help but notice that in a way, your prayer DID come to pass. You took some of the monster's burden from Schuyler, by writing a book that will help to empower her. By being so incredibly strong supporting and advocating for your child, you shift a lot of that weight onto yourself. Not exactly speaking in tongues and finding oneself "smote" on the church steps, but it's gotta count for something!
    -e-

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  2. SHIT, Rob. That just about killed me.

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  3. Rob, if you will pardon the very poor pun, this left ME speechless and crying. I have to agree with Anonymous "e" that you have shifted much of the weight, the burden, onto yourself and done what you can to make sure Schuyler has all those opportunities to "speak." Frankly, it's not about the speaking asmuch as the communicating she does. And she does a damn fine job.

    This post made me cry for my husband. I don't think he's ever allowed himself to breakdown and express the grief and frustration and perhaps anger at God EVER since Nik was born. That breaks my heart. You've given me a touchpoint to remember that he surely must feel it even if he doesn't express it. Thanks.

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  4. Sometimes you write things that make my heart ache. I agree with -e- that you have given Schuyler a voice. It's just that it might not be in a language we can understand.
    I think when you pray it's an attempt to communicate with a higher power that's within yourself. You are asking for help to understand the indecipherable. Or to understand something that might have to come about later.

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  5. I try to be tough, but I'm just not. I cry often, too, and sometimes just because I didn't do it enough at some time in the past. I don't believe any God answered your prayers, but that your prayer made some adjustments in your brain that allowed you to soldier on. Nothing wrong with tears.

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  6. Anonymous6:05 PM

    One of the most helpful things that someone ever told me is that our children come into the world having their own spiritual paths to walk. It is their own soul agreement too.

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  7. Anonymous6:30 PM

    My daughter also has BP PMG I understand every bit of how you were feeling and still the way you write it reminds me of the day we found out about our daughter. I am so grateful that I found your blog and that I can read your experiences with Schuyler. You are giving her a voice with your words.

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  8. Anonymous7:50 PM

    Off topic, but did you hear that Robert Redford is going to make a movie of "A Walk in the Woods"? I wonder who will play Katz???

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  9. I've been sitting here for a long while trying to compose an intelligible response and I am failing miserably.

    I could comment on your nimble wit (which is in fine form!) but that seems patronizing.

    I could tell you that I totally get where you are coming from and that I have been in that same place before, but it would be an utter lie.

    So for now, I will just sit back and nod--not because I understand, but because I want to try to.

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  10. Anonymous10:17 PM

    I don't have a child like Schuyler, but your entry really hit me hard today. That was so beautifully written and I understand exactly what you mean. I have an adult child with many self-induced problems and struggle every day to understand why this happened. And I cry, too. ~belle

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  11. Anonymous11:49 PM

    Rob, you are not only giving her a voice with your words, you gave her the chance to find her own words. Schuyler is amazing. You have only to read that article to see how articulate she is! That is, in large part, due to you and Julie. You have not only NEVER given up, you have pushed to make sure that your child has every advantage that you can possibly give her.

    Now you've gotta pay the piper, buster. You have to read her comment that you and Julie are "old"!!! Yeee-ouch!

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  12. Anonymous1:56 PM

    This post left me crying, also. It was so reminiscint to the time a little over two years ago, when we got the diagnosis on my granddaughter's Prader-Willi Syndrome. While I don't believe in god, I did offer my life to "whatever" in exchange for making that poor baby whole. Even today, I find it hard to face the challenges that are coming for her and her parents. What GD higher being would allow this to happen to our innocent children. I will never get to the point where I am at peace with this. While I don't often cry anymore, I am still so damn angry.

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  13. This really moved me. You have such a gift with words.

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  14. Every time I read your blog, I realize how much I look forward to reading your book. You are such a gifted writer.

    I agree with what pretty much everyone else has said: you have given Schuyler a voice and taken much of her burden on yourself by writing your book. I can't say I exactly understand what it is like to have a child like Schuyler, but I certainly understand the crying in frustration at it all; I've had similar frustration at my diabetes numerous times. But every time, I have to admit I've learned a lot from being diabetic, the main lesson of which is that the crying is okay.

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  15. I cry very day, too, for nearly the same reasons.

    I love you!

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  16. Rob, you have a beautiful child and I know you are very proud of her. Please be aware that God is as proud of you as you are of her but when you grumble against him you are letting him down. Here is what I believe. God allowed Satan to do this to your child because he knew you were a strong person and could withstand it (as in Job) however Satan said, "No Way, he can't manage it and I will have the victory by destroying his witness and testimony among men." I urge you to not the latter be the case--never give Satan the victory. Have faith, God is still working on you (and me) and that little girl was his way before she was yours. He is taking care of her. Your job is to love her (you are) and to be her earthly parent. You don't have all the answers no more than anyone else but through Schuyler you are reaching thousands (millions maybe) and offering encouragement and hope even though you may not mean to be doing that. You see God has answer your prayers...your daughter is speaking (through you) to all of these people. Rob please read Romans ch.8 and ask God to help you examine your heart and reevaluate your life. God blessed you with a beautiful child that obviously loves her family and is loved by her family--that wasn't an accident that he trusted you to give you this little girl. Fight the good fight!

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  17. Oh, for crying out loud! "God allowed..."?!?! Really? No God I believe in! I believe in genetics, and that science can suck and it can break people. To suggest that God is testing Rob by "breaking" Schuyler is absurd.

    Rob, this was a beautiful post. And I agree with the others that you are not only giving Schuyler a voice by telling her story, but you are giving her a voice by allowing her to tell her own story, to live her own story. I'm just so grateful to get a little peek inside.

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  18. kris, you may not believe in the same things rodney does, but, crap. that's just mean and rude.

    he's not trying to offend rob, he's offering his version of comfort.

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  19. Anonymous10:38 AM

    I am in agreement, in part, with Rodney. I think if you could see yourself, Julie and Schyler the way the rest of us do, you'd see that you are being used as an instrument of His Peace. I believe there is spiritual warfare and we have choices to align ourselves with the negative (satan/PMG/and people’s decision to show cruelty to the “broken”) or with the good (God). Although you do not voice it, you are following God and doing good for this world because of the light within you. You could have turned your back on her, Rob. Many parents do - as hard as it is to believe. You choose good/God’s way. That’s about all the true control we get.

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  20. Thanks for breaking my heart on a Monday morning, Rob ... just when I thought my heart couldn't fill any more with stories of you and Schuyler.

    As a Christian, I've never understood why your daughter's illness caused you to turn away from God. I'm not going to get preachy on you here by any means - I just want you to know that after reading today's entry, I really get it.

    You are an amazing writer. I can't wait for the book.

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  21. Anonymous11:24 AM

    I adopted a little girl from a third world orphanage a few years ago. She has a few problems. When I go into the doctors offices and sit there with all the parents in the waiting rooms, and when I read the post from the chat groups, everyone is in a stage of grief.

    Somehow I have missed this. I know that what those parents feel and express is so real, but I just got there from a different road.

    All I can think is; isn’t it great that she does not have to live a horrible life, in third world hell, with no one, with this problem. She was said to be healthy at the time I got her, I thank God because if they had realized she would have never been made available for adoption by anyone.

    Isn’t it great that we can do all these things about her problems. She is a wonderful little girl. She has been able to get over all the horridness and can obviously find joy in her life. She is so tough, she won’t let anyone get her down. She can pack more joy in a single day then most people squeeze out of a lifetime.

    It was a shock for me to realize she is doing better at life then most able bodied people. Who says you have to have to be a certain way for a happily ever after life?

    I find myself looking through the list of adoptable children with special needs and thinking, I could take this child, I know what to do about that. I could give that child a chance. That child is just like mine.

    Not that I "saved" my child if anything my child saved me.

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  22. Anonymous11:26 AM

    kris, I'm with you.

    Rodney, your presumption that you know exactly what God and Satan and the Flying Spaghetti Monster and whatever other unprovable entities are doing is preposterous.

    I know you mean well, but if you've read this blog at all, you know that Rob has a different worldview than you. If you want to offer comfort, do so in terms that will help, not by presuming ideological superiority and patronizing him with false omniscience as to the whims of the universe. You might as well post as Nostradamus.

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  23. For what it's worth, I don't think the notion that "God did this to Schuyler because you're strong enough to handle it" is any more comforting than the sentiment some have previously expressed, that "God did this to Schuyler because you're an asshole." Either way, your grudge would be understandable.

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  24. Anonymous12:34 PM

    Rob. do you have anything to contribute to this?

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  25. Only that I disagree, obviously, with the idea that God would harm a child in order to test me or punish me or for any other reason, and if that were the case, then I'd feel doubly committed to resisting God, even in futility, because some things are worth waging a futile fight.

    Likewise, however, I recognize that my beliefs are not shared by everyone (what a crap boring world it would be if it were), and I always welcome other respectful points of view, whether I agree with them or disagree or find them offensive or whatever.

    I welcome the disrespectful ones, too, but those might get a more pointed reply.

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  26. I can't help but think that the way you've put yourself out there, both online and with the book, have opened up a world of readers and friends who will always love and support Schuyler. That's an amazing gift you've given her.

    Sure, there are some jackasses in the mix, too, but I like to think that this extended family you've created outnumbers them by a very wide margin.

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  27. Let me be clear...I NEVER said God did this to Rob's beautiful little girl. I did say he allowed it to happen in order to set forth a much more powerful witness through Schuyler and her family. I am not imposing my beliefs on anyone...Rob you can take or leave it. That is just how I see it. No less, the truth is your family's story is impacting countless other families and that in itself is a blessing. Rob, you are doing a great job and I will continue to pray for you and your family.

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  28. Anonymous6:58 PM

    Rodney,
    God didn't do it to Schuyler, but allowed it to happen? Where is the difference? Either way, this is no god I could ever believe in.

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  29. Anonymous9:16 PM

    Not specifically related to this post, but I wanted to let you know that I was in line at Publix (grocery store) this weekend and finally saw the GH issue with Dr. Phil on the cover. I grabbed a copy and had to get out of line to find the article and read it. I'm not sure why, but once I found the first page with Schuyler's picture on it, I started to tear-up up like baby, right in the middle of the freakin grocery store during the Sunday rush. I never thought I'd be a guy that would get weepy in public while holding a copy of GH.

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  30. Anonymous10:49 PM

    I'm not even religious (just spiritual), but wrote out this long comment defending Rodney because I totally understand what he meant about paths on getting closer to God.

    Then I deleted it because I realized that that's why we all have our own travails and there is no point- when we're ready we get there.

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  31. I think Rodney is my favorite Godbag blowhard to delurk around these parts, since... oh, since that guy started talking about how Jesus helped heal his migraine headaches and would heal Schuyler if only you accepted him as your Personal Savior into your heart because migraines are so TOTALLY the same thing. That guy was back on Darn Tootin,' I think. Sweet!

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  32. Anonymous8:57 AM

    I believe in God but I have no idea why children are born with disabilities. Maybe God doesn't exist, maybe God is mean. Maybe I'm stupid for believing God exists. Regardless, I'm deeply happy that Schuyler has Rob to fight for her and help her in her own battle against this monster. When Rob tells the world about his questions and frustration, I hope he enlightens the Christians and makes them think. There are too many judgmental, my-way-is-the-right-way-so-stop-questioning Christians out there. You can THINK you know, but you really don't -- none of us do. I enjoy reading different points of view and I think the discussion is a very good thing. Thanks for the beautiful post, Rob.

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  33. Anonymous9:04 AM

    juanita,

    EXACTLY.

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  34. And his disciples asked Him, saying, “Rabbi, who sinned, this man or his parents, that he should be born blind?” Jesus answered, “It was neither that this man sinned, nor his parents; but it was in order that the works of God might be displayed in him.”
    —John 9:2-3.

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  35. Rob, I absolutely loved this post. My only disagreement is that you did not pray a silly prayer, you laid out your feelings in a "no holds barred" conversation with the "One who is supposed to be in charge." Nothing silly about that.

    Somtimes that is all you can do.

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  36. Anonymous4:01 PM

    And his disciples asked Him, saying, “Rabbi, who sinned, this man or his parents, that he should be born blind?” Jesus answered, “It was neither that this man sinned, nor his parents; but it was in order that the works of God might be displayed in him.”
    —John 9:2-3.

    Thus, God is a colossal douchebag.

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  37. Heh. I'm going to have company in hell. Someone bring snacks, please.

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  38. You've got to stop wanting what you can't have. I know. It's hard. I know you will never be able to shake from your mind the perfect image of how it should be. But it's not meant to be, not in the way you want. And there's a reason. I don't know what that is, but maybe it has something to do with writing that book. Compassion changes the world. It can. You just have to love and live in the now. Don't worry. Don't compare your family to others. Don't compare it to your dreams of how the future could have been. The future is always up for grabs, anyway! As much as you want to, you are not writing this story, not alone. You do the best with the decisions you do have to make. So much of life is in how you look at it, that it almost doesn't matter what is happening outside of you - it's what's inside you that matters. And that you CAN control. It's all in how you see things. That is your choice.

    You can choose to see your child as painfully limited from what she could be, or as someone who is already strong and IS precious and whole, right now, who will use her weaknesses to grow stronger. You can choose to see this ordeal as some horrible curve ball God has thrown you, or as your great challenge to face. You can choose to lament her silence, or you can get down on your knees in gratitude that you have her at all, alive, while many parents...well, they don't have that to be grateful for.


    This may sound sappy and self-righteous, especially coming from someone my age, who obviously hasn't lived long enough to know much, and with 2 seemingly normal children. But you see, I don't know that they are. My family has a rare genetic disorder which can suddenly cause paraplegia. I may have it. My kids may have it. And I've mostly made peace with that, because after all that has happened in my life, it has been a long life, already. And I've learned you've gotta take life as it comes. Take what you have, and be grateful for it. Take every moment with all the grace you can muster, make it beautiful, make it good, and thank God. Focus on the positives, and the negatives start to disappear. Let go of those wishes that can't be granted. Grant the ones you can.

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  39. Anonymous11:11 PM

    Hey Karen, you forgot to tell him to turn that frown upside down.

    Sheesh.

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  40. Anonymous12:39 AM

    Ok Karen, you are now my first official girly crush. That was wonderful!!!! I totally, totally understand.

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  41. Anonymous8:51 AM

    Rob,

    As a recent GH convert to your blog, your words have touched me once again.

    Each of us can choose the concept of God we decide to believe in, and the one you eventually become comfortable with (even if that is no God at all) will originate from your heart, not from what others choose to believe or from what is written in an ancient text.

    The truth of the matter is that you have already discovered God. It is expressed every day through the Love overflowing from your heart and so apparent in your words.

    And as someone else suggested, I have come to believe that each of us is on a soul journey for a personal reason, even our children, though we may not understand it while on this earth. Sometimes that journey takes a form that brings a lot of light into the world, even though it involves personal hardship and sacrifice.

    I struggle with this too at times, it's one of those fundamental human questions, but it helps me to think of darkness being a stark contrast to show the light even more brilliantly, to reveal the light within each of our hearts.

    And not only is each of us on a personal journey, we are all on a collective journey too, where one person's light can touch another.

    I know it may seem a small comfort or it may even sometimes seem that we are slaves to some purpose we seemingly cannot control, but it helped me to realize one day that it is not a capricious or punitive God imposing force upon us when we experience hardship. At a soul level, we have our own reasons for choosing certain paths, no matter how difficult.

    And all I can say is that I honor the soul paths you and Schuyler are following, because they are not at all easy ones, and you are both indeed bringing A LOT of light, love and understanding into the world right now.

    As you have already discovered, our soul paths often lead straight to Love, even on circuitous routes. Even those people who have very specific and different beliefs about God than the ones I just expressed will agree that "God is Love".

    Phoenix

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  42. Anonymous10:24 AM

    karen,

    "But it's not meant to be, not in the way you want. And there's a reason."

    Lies! Osiris is the god of life, death, and fertility, and will determine Rob's fate. Don't believe me? Why, it's right here in this book...

    "This may sound sappy and self-righteous, especially coming from someone my age..."

    Experience is the best teacher. One doesn't get to thirty-ten without learning about life.

    "You can choose to lament her silence, or you can get down on your knees in gratitude..."

    To whom?

    "Take every moment with all the grace you can muster, make it beautiful, make it good..."

    That's precisely what Rob is doing.

    "...and thank God."

    Who?

    Rob, please tell me if I'm fighting this fight in the wrong arena, and I'll just lurk and fume. But I really don't understand how you people don't see how insulting it is to march right in, proclaim ideological superiority, and begin issuing instructions and prophecies. Based on past experience with theists, I can imagine the reaction if someone did that to you.

    In my recollection, Rob has never used this blog to tell anyone what to believe. That you think you should use it to try and proselytize to him is puzzling, and not a little maddening.

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