Friday, October 14, 2011

You All, Everybody

(This is Part VI of VI of a series of entries that chronicle my experience of Faith, from my early understanding of it as a kid and my acceptance of it as a teenager, my rejection of it as a young adult and my struggles with it as a parent of a child with multiple disabilities, and what I have come to know and appreciate about it through the acts of others.)

Part I of VI: Richard
Part II of VI: Mark
Part III of VI: Meighan
Part IV of VI: Jennifer
Part V of VI: Bennett
Part VI of VI: You All, Everybody

It's no secret how much I, within these pages, lament the fact that LOST is no longer on the air.

It was, in my humble opinion, the 1st and 2nd greatest show on television. Huzzat? Well, I waffle a lot. The Shield sometimes kicks it out of first place, depending on my mood, and then LOST has to sit in the corner, pouting like a scolded adolescent, for a time, in second place, until I get my Mackey out of my system and then LOST comes back to take first chair again.

LOST had a ton of mysterious elements. A ton. From the Pilot episode all the way to The End.

Many of those mysteries were explained, and many of them were explained...enough. You never want answers HANDED to you, right? I mean, you want to have to think for yourself, to draw your own conclusions, and sometimes to keep thinking about things, long after they happen.

Of course, the ONE mystery that has never been or will never be explained, is how that piece of shit song by Charlie Pace's band 'Drive Shaft', You All, Everybody, became a #1 Single all over the bloody globe. In the LOST universe, as far as musical tastes were concerned, I guess people were daft...Brutha!

But at least the song can serve my purposes, because for the longest time, I struggled to figure out what the name of this final entry was going to be. Can you believe that?

I went back and forth a TON. And it changed a few times. IN fact, the entire post changed several times, and was reworked several times. Portions of it got taken out and set aside, to be used in other places, for another time. Other sections got expanded on and used elsewhere.

See, because when my desire to write about this subject started, IN AUGUST, it started here, with this post. The problem was it grew to a length even SingleDad would be envious of, for a change. A length that, even for a blog that Yours Truly was writing, was just too damn long.

SO I decided to stretch it over multiple posts. When I did THAT, those sections grew. When I started expanding there, other thoughts came to me, and the whole thing...well, let's just say that my Mom's desire for me to write a book nearly came to fruition.

Ultimately, I decided that there was no way I could pick one 'name' to close out this mini-series. Because although there is one very special person at the heart of one very critical element of this last section, there isn't only one person, in this Final Act, who I can link to as the main source of overall guidance on my journey. The truth is...there are so many people impacting my life right now.

Somehow...I guess some change happens whether you want it to or not. I've become a lot less closed off than I used to be.


Through my experiences online before, at Palisades and at my own little BS company, and now, in the world of our community with Special Needs, I am surrounded by people who provide me with such an amazing support structure. Digital, yes. But real nonetheless.

And it really is you all, everybody, that have each contributed in some way to my current likeness of being, my preset state of mind, my ability to be more receptive, more open to new ideas, new philosophies, new ways of thinking.

And the lifelines you have given me? Their worth is incalculable.

The best part of these relationships is that they do not always REMAIN digital. And that is something you don't realize about these alliances that you form on the Internet.

Just like meeting my spouse through a keyboard, some of the most astounding representations of human beings have revealed themselves to me in the physical world by first being introduced to me in the world of 1's and 0's.

I dunno, maybe a computer really IS what saves this planet, in the long run. But not by entering 4, 8, 15, 16, 23, 42 and then pressing 'EXECUTE'. Maybe it does so just by continuing to make the world smaller and smaller.

Perhaps I am an idiot to believe in that. But then again, as you've seen, I ain't always the sharpest tool in the shed.

The way I have been living my life for the past couple of years, up until this whole thing happened with this iPad contest, has been so...utterly foolish. But after what happened, I could no longer ignore the fact that I was trapped in a loop of my own design, maybe I had been caught in it for 20 years, maybe longer, stepping out of it on occasion to have some successes in life, I don't know for sure.

I certainly stepped out of it for a while, this much I know, after I met Jennifer and during that period of time where I had many years of things going swimmingly. I had a good career that was taking off where I worked on amazing product and made good money, I fell in love, I got married, bought a home, a car, and I had a son named Carter (despite my initial terror about Fatherhood in the end I managed to make the adjustments I needed to).

Generally I was well-adjusted and although I had to manage some of my lingering anxieties leftover from childhood I did so through therapy and medication. But I attacked them gladly and did not feel ashamed to do so. My career was fantastic, and even when I left Palisades Toys, the place I LOVED working the most in my entire life, I was not daunted because I moved my family back to Ohio for the sake of being closer to Jenifer's family and cutting the distance to my Mom, who lived in St. Louis at the time, by HALF.

I even did something I never dreamed I would have the stones to do. I started my own business. And I did it with a great deal of enthusiasm and excitement.

Even when Bennett was born prematurely in 2007, I managed to do...OK with it. It was hard, and I have some regrets about how UN-supportive I was to Jennifer in those couple of weeks because of how much I retreated within myself, but I bounced back. WE bounced back. Because after all the worry and the chaos and the scared shitlessness while he was in the PICU, he seemed to be OK when the dust settled. And when he got out and came home, he started developing just like any other boy would.

And even though my business ultimately failed, I didn't come apart like you might think. I took it in stride. Taking the advice of my friend Chris I kept reminding myself 'There are not many people out there who can say to themselves that they actually produced their own product and sold it. YOU did.' That helped a great deal.

And there was something to look forward to on the horizon in 2008, because my old boss at Palisades Toys had something in the hopper with the NFL that he wanted me to be involved with, and so I was in a holding pattern waiting for that job to kick in, and so I managed to make ends meet in the meantime with eBay, because it was a job designing NFL Statuary that was RIGHT in my wheelhouse. And I wanted to do it in a big bad way.

When you look at the scope of my life overall, it was, truly, a Golden Age for me. There is no denying it was the single greatest chunk of 'problem-free' time in my entire existence.

It was only after Bennett's initial diagnosis of Infantile Spasms, and the reality of what followed, that I found myself to be completely engulfed by this new feeling. No...scratch that. That is not correct. Because I have gone back and looked. And read. I always had hope, some hope, before the surgery.

I looked at the surgery like I looked at taking my Toyota GasHogger to the shop. I truly believed that when I took Bennett to see the fine folks at the Cleveland Clinic, after all the fucked-up bullshit we went through prior to that with his initial mis-diagnosis at the local Hellspital and a summer of unforgiving daily seizures, that once that fucking tumor was excised, everything would be OK.

You take the truck in. Hood gets opened. Mechanic leans in. Buttcrack revealed. Ewww. Engine gets fixed. Car comes out. Drive home. Wash eyes.

And they lived happily ever after.

Didn't work that way.

And when I realized that? THAT is when I found myself on this path. This path I once equated to the film The Road. Very bleak. Very stark. Very little hope.

So consumed by negativity was I that I was only existing. I've talked about this state of being before, a sort of 'Walking Dead' way of meandering through life. But I wasn't doing anything to change it. Not REALLY.

I was talking to a friend of mine, actually the same man who was that former 'boss' at Palisades, trying to explain this experience, and he keyed me in to the best quote to explain what it is that I was trying to say. Brought to you from the man who also brought you universal Armageddon.

'Insanity is doing the same thing, over and over again, but expecting different results.'
— Albert Einstein

No wonder the guy was such a mufuggin' genius.

That defined my existence, for such a long, long time.

And it defines my responses to so many of the things I described above, so many of the negative things that would come to me in my life after Bennett's reaction to the DTaP Vaccination on February 12th, 2009. Oh sure, you can go back and read about them yourself...I TALKED a big enough TALK...but I never did jack shit about ANYTHING. Well, that's not entirely true...there were rumblings of change...making some strides with the Reflux lifestyle stuff, and some other things like quitting smoking, but these were baby steps, not the global revisions I required.

I simply ghosted my way through each day, giving myself just enough strength to make it through until my face hit the pillow.

And nothing more.

That is not living. It's waiting to die.

And where was God during all of this? You ever wonder why I never bothered to ask myself that question? I often did. It isn't like I didn't think about it. It isn't like I didn't talk about it. It isn't like I didn't BLOG about it.

Faith, and my lack of it, is something that I would often discuss. I found it to be something I was very envious of, as so many Mom's and Dad's in this community had it, in spades, and it provided them with such a foundation of strength to get them through the darkness.

The only God I prayed to was my X-Box. The only Halo in my life involved Master Chief.

Even if I were to pray, officially, I'm not sure who it would be to. Like I said WAY back in Part I of this thing, my belief system was VERY wacky. I don't think God is separate from Us anymore. I don't think Demons or Devils or Angels or any of that kind of thing is. See, I think all of that stuff WAS God, or a part of whatever He/She/It was.

We're talking about a being that is so high concept that even in the Modern Age there aren't really words that can adequately describe Him, so you gotta forgive me as I muddle through this. I ain't no mufuggin' Theologian.

But to WAY over-simplify what I believe, here goes. God existed as a separate Entity from Man at some point. Sees just how messed up Man really becomes (free will...D'OH!!!), and knows the only way to give Man any hope at all is to join with Man. So he does, via Sacrifice. This Sacrifice is sort of Multi-Layered. On the one hand, it results in the creation of Jesus Christ. On the other, it essentially eliminates God's separateness from Man.

Of course, Man at the time was really dumb (scientifically speaking), and scared shitless of, well, everything, and we couldn't handle how nifty all that really was, so we did what came naturally.

We killed Christ.

Man sucks.

But God is cool with it for the most part, that's how He rolls, and because of that whole experience we are now, forever, joined. Through Him, with Him, in Him? Ring any bells?

Anyway, a soul is a soul is a soul, so somewhere God's original 'soul' exists, and I think this is what we pray to, but where does it exist? Heaven? Or does it also exist within each of us? A sort of collective soul-conscious?

How should I know? Hey did I just start my own religion?

My point is that we all believe what we believe, and whatever gets you through the day is what gets you through the day. And that may sound wacky as all get out, but is it any wackier than The Force? Or a bush that talks? I don't think so, RICHARD. ;)

My problem was, that despite the wack-factor, I wasn't embracing anything other than football on Sundays. There simply had not been anything, over the last couple of years, that could convince me to open my heart to the idea of peeking out the door and seeing if anything resembling Faith within myself was still on the other side of it.

And without Faith? Hope was really just something I did not have. Not at all. And so why change anything?

Something has to happen to wake you up to the point where I guess you have no choice but to HAVE to change things. That's the only explanation I can think of, because for some reason, I reacted differently when the latest bad thing occurred earlier in the year, and that was when the Marissa's Bunny iPad Contest went belly up. I wanted to be involved in something positive for a change in the aftermath of what went down in this debacle, a giveaway in which Bennett was a 'finalist' which hopefully, if you are reading this, you know everything there is to know about.

A dear friend from way, WAY back, contacted me recently, to offer congratulations on the success of the first goal of this Mission: iPossible! thing, this charity effort. What struck me about her message was how much it summed up how much this experience has transformed me. Particularly since, sadly, she often bore the brunt of some of the worst aspects of the creature that used to lurk around inside me.

'You should feel really good...Funny to think of you as a save-the-day kinda guy, when I recall many conversations when you promoted a 'fuck 'em' attitude. But of course that was eons ago and none of us are the same now. I'm proud of you...'

When I sit back and think about it, and I mean really think about it, it is so difficult to wrap my head around the fact that, 'officially', we've only been doing any real fund-raising since sometime around July 12th when that blog went live.

Unofficially there was activity in its various forms prior to that of course, with what was going on as far as the behind-the-scenes action with people to expose the contest and prove that the iPads were not to be forthcoming, and that was all well underway before I became involved.

My main 'place' in all of this as I entered the picture seemed to be, at least from my perspective, more tied in to my relationship to the community with which I shared a preexisting relationship.

And what a community it is.

You all. Everybody.

In 76 days, this community of bloggers, and their friends and their families, pooled their resources, worked together, and raised ELEVEN-THOUSAND DOLLARS. Think about that for a second. Eleven grand. That's a car. That's a boat. That's...that's...ELEVEN THOUSAND cheeseburgers!!!!

I've brushed over the subject about how daunting the task was of getting that project coordinated and launched, for everyone who was originally involved, and some of the expense that it incurred to our everyday lives.

And I don't mean expense as in dollars and cents.

I don't dwell much on these matters because I don't feel that it is necessary or appropriate to go into all the minutiae of some of the day-to-day grind of setting up what is, in many ways, a small business.

Though I will admit the phrases of full disclosure and full transparency often play themselves back in my head as if a record is skipping.

Realistically? Those kinds of things are not entirely possible.

Especially when your end goal is not just the fulfillment of 20 iPads, but a restoration of trust and security to a community who has had its foundations shaken and then to move beyond that into setting up a legitimate charitable foundation that lasts. Those disclosure ideals are almost possible.

You can get, oh, let's say 92-94% disclosure and 89-91% transparency. Not 100%. But hey, that's still pretty good in today's world, don't you think?

Many of the things I did not disclose were those things of a personal nature. Particularly because there were many times I felt very conflicted about it. Do I blog about my LIFE over there or over here? Do I set limits? What kind of limits?

I still haven't worked it all out. I need to, certainly. Or maybe not. I might be over-thinking it.

I will say that along the way, during the time it took to do my part of the co-founding of that group, I began to take note of certain things happening around me.


At first, they were small in intensity and frequency, but as time went on they grew on both counts, and I began to start to ask myself questions I had not asked myself in a long time.

But I remain very practical and somewhat cynical, and I had not, as yet, felt anything resembling a spiritual 'touch' since Bennett's surgery, and then it was merely an echo, and while I was moved quite a lot during the experience of all that I was seeing and feeling with Mission: iPossible I was not ready to make any kind of formal announcement of a spiritual nature or any other, either to myself or to anyone else.

But there certainly were signs.

Signs that I could not deny. BUT...I always had the ability, just as I did throughout the last twenty years, to explain them away very easily. Or shrug them off. Or simply refuse to acknowledge them.

Anger is a powerful weapon. So is hate. When you take them away from yourself, and stop using them against...well, yourself, you do find that you can go a lot farther than you ever thought you could.

I would speak about these things often with my new adopted sister Heather, who is a Catholic. And she would listen. Heather was one of the people who spearheaded putting all of this together. She was one of its focal points. Like I said...I may be driving the boat a lot of the time, but I did not put it in the water.

She found my lack of Faith...disturbing.

Not in a Darth Vader, judgmental, Force-Choke-You-The-Fuck-Out kind of way. More of a Damn...I see the kind of pain you're in, and this would really help you heal kind of way. It is her nature. But she believed, deep down, that I did have Faith, I just hadn't found my way back to it yet.

But she believed it was only a matter of time.

Remember when I said that there were parts of all of this that got chopped up and moved around? Well, this is one of them. There's a lot more to say about Heather, Zoey's Mom, but I'm saving it for...something else. You're just going to have to trust me.

Anyway...where was I? Oh yeah...ignorant bliss.

On Monday, August 1, I was supposed to take Bennett to Cleveland Clinic for his Psychological Evaluation. This was his 2 year follow-up to his surgery. My super gigantic tonsil stones were kicking my ass, so Jen took him instead. She called me from the road, driving back, around 2 in the afternoon, and gave me the news.

The Jim-Kirk-Flying-Leap-Kick-In-The-Chest-News.

'Maybe it wasn't such a good idea for you to have taken him up here after all,' she had told me. 'It was brutal. You need to be ready for the results. It isn't very good at all.'

Not that this isn't something that you don't already know as a parent. You KNOW that your multiply disabled son is seriously delayed. You know that he is seriously screwed. But it is during these times when you are given evaluations, and even more so when you are given pieces of paper that have words clinically stating just how bad shit is really hitting the fan that it gets to you.

Still don't really know why this is. Haven't figured out the why yet. If I do I will let you know.

Bennett tests out at an IQ of less then 48. He is nearing 4, and yet is really only developmentally measured at somewhere between 14-18 months. He was a mess...cognitively speaking. I won't go into the details about some of the specifics of the test elements, but to tell you of some of the things he cannot do? They are beyond unreal.

Another piece of soul-shattering news. But I should be OK with it now, though, right? I mean, after all...this is The New and Improved Ken of 2011, yeah?

The New and Improved Ken of 2011, after hanging up the phone with my wife, was on the living room floor, sobbing, totally overwhelmed with guilt and emotion. I found myself wondering...I was so consumed by this Mission, this contest fulfillment, it never once occurred to me, EVER, to try to consider Bennett's needs first.

Was this thing somehow linked back to being my fault?

Did I screw him over in my short-sightedness? Did my lack of awareness make him score worse on the test because I did not think of my own family before becoming consumed by this other thing? Could he have done better if I had tried harder to get him an iPad months ago?

You know, they say on the plane, when it is going down, that you put that margarine cup over YOUR mouth securely and THEN you put the margarine cup over the mouth of the person in need next to you.

I didn't do that.

Now granted, I was pretty tired...and in hindsight that kind of thinking is just plain silly, but emotions can do that to you. But I had not been sleeping. I was a wreck.

And then, for some reason, I know not why because I have not done this in far WORSE situations, for the first time in twenty years I got on my knees, dropped my head, shut my eyes, and prayed.

I said I was sorry, and asked God to forgive me for turning my back on the Church and for walking away at Meighan's funeral. No matter what I had done throughout my life, no matter what fate lay ahead for me, my son deserved better than this. Don't let him be punished for what I've done. I asked for strength, for guidance, and although I would never ask for any physical object outright, I did ask for something specifically...'When this is all over, when these 20 iPads get shipped, please help me find a way to figure out how to get an iPad for Bennett. I don't expect it for free, I'll do whatever I need to do to get it. Just help me figure out how. Please'.

To show my commitment, I went to my Facebook page. It was, I don't know, 2 or 3 in the afternoon. I changed my Religion field from a rather snarky 'Recovering Catholic' to 'Catholic', and said 'OK...I'm back. Let's see how this goes. I'll do the best I can.'

Yeah I know...I was talking out loud. Felt weird then, too. Feels weirder telling people about it. It's so...personal. Even for me.

And then, truthfully, I just went back to work. No clouds parted. No lightning. No choirs singing. The President didn't call.

Pretty uneventful afternoon really.

That night, after dinner, sometime around 7 or 8 o'clock, I can't remember exactly when, I heard a knock at the front door. At first I thought it was my older son, Carter, because he often tries to prank me into going to the door by knocking at the wall.

But I glanced outside, and there was somebody there.

I opened the door. There was a woman standing there. She looked at me, with a smile and a somewhat inquisitive look on her face.

'Ken? Hi. This may seem a little strange, I'm...'

I had already recognized her, and cut her off in mid-sentence. '...Joyce?'

She confirmed it. Indeed it was Joyce, the mother of the Sarah from My Name is Sarah, a fellow blogger and Special Needs parent. She lives in Cleveland, 2+ hours north of Columbus. We have always meant to meet in person, but circumstances never materialized. When I was in Cleveland Clinic for the surgery, I know she had wanted to come up, but at the time she did not want to intrude. Things were just too raw for me.

Joyce was in Columbus for a meeting for her business, and she decided that this was as good a time as any to finally do what we always meant to.

I invited her in, of course reminding her to watch her step, as the last thing I wanted was to have her fall through the floor. (We have, since, managed to rig a temporary repair until we can get the cash together to do the more significantly expensive full replacement of the entire entryway.)

When she came in, she revealed a package that was in her hands.

It was an iPad.

And it was for my son.

Joyce explained that she wanted to thank me for everything that was happening with the Mission: iPossible group. She thought it was a real shame that Heather and I had taken ourselves off of the Recipient List, but she understood the reasons. But she didn't want to think of Zoey or Bennett having to miss out on a chance to have a learning tool as unique and game-changing as the iPad. And since the company she and her husband have built was doing well despite the economy being so bad, some of the money they had already earmarked for 2011 for charity purposes they wanted to donate to this cause.

And she wanted to, because she was so close, deliver this particular one in person.

I was...almost speechless.

'I can't accept this.'

And although Joyce informed me that she already knew that I was going to say that, I don't believe she had any idea WHY I was saying it. Because while there was one part of me that did not feel that I could actually take the iPad before the rest of the Twenty on the list had received theirs, the part of me that spoke the words was the part that did not want to accept what was happening, because to do so meant that I had to do something I was not sure I was ready for.

I couldn't explain any of this G-Man stuff at the time to Joyce, because I was fairly dumbstruck after all. Though I did say that I would need to put it into the hopper for people on the List, and she said I couldn't. And that I needed to understand the reasons why. That those iPads would happen, and soon. I just had to believe they would.

But I had to make sure I didn't forget about Bennett.


It's not just a lake up there by Cleveland. Though that's spelled Erie, anyway.

So I accepted the iPad on Bennett's behalf. Joyce told me she planned to send one to Zoey, and I had to tell Joyce something that I had known for a few days already, that one of Heather's friends had just given an iPad to Zoey, and Heather had a similar experience to my own. At first a reluctance to accept, followed by guilt, then an acceptance of the device, but also a request that she not forward the iPad to the Mission. Heather and I had, even then, decided to keep that quiet until after the 20 had been shipped. It did not feel right to talk about it. It felt...weird.

So Joyce skipped that one, and went on to buy another down the road, which was Jaxson's, and then she donated even more to the Mission later on. She and her family were amazingly generous. It was overwhelming.

That night, as we sat and talked, she tried to take some photos of us and of Bennett, but one of the things that she learned first hand about Bennett is that he has a very odd aversion to red light. So with red light cameras, he tends to flip out a little. I bought a green light focal camera for that very reason, because when the green light shines on him he does just fine.

But there was no way Joyce could know that, and it is one of those things you just don't think about...until it happens. So Bennett at first was very engaging with her, until the camera thing, and then it got a little dicey for about 15 minutes.

But he calmed down. And you know what? It was a great visit. iPad aside, it was nice to finally meet Joyce after all this time.

Of course, I couldn't tell her about what I had experienced earlier that day, I was just too shell-shocked, and I wasn't quite sure how she would react to it. I didn't even know how to react to it.

Eventually, we said goodnight and she got in her car and started the trek back up to Cleveland.

When the door closed, I went back into the living room and sank into the sofa. I was wiped out. What a draining day I'd had. Felt like a week. Between bouts of tears, I told Jennifer what had happened earlier in the day. She couldn't believe it. I couldn't either.

But there it was.

What happened that day? That's a very heavy duty question, isn't it?

And whenever I have questions of a deep, spiritual nature, the first stop on my quest for answers is a very special place. It is the holiest of holy's, so to speak. And for quite a while now, whenever your soul is in need of enrichment, there is only one source that you can turn to for the TRUTH that you so desperately seek.

Pulp Fiction.

Jules: Man, I just been sitting here thinking.
Vincent: About what?
Jules: About the miracle we just witnessed.
Vincent: The miracle you witnessed. I witnessed a freak occurrence.
Jules: What is a miracle, Vincent?
Vincent: An act of God.
Jules: And what's an act of God?
Vincent: When God makes the impossible possible. But this morning I don't think it qualifies.
Jules: Hey, Vincent, don't you see? That shit don't matter. You're judging this shit the wrong way. I mean, it could be that God stopped the bullets, or He changed Coke to Pepsi, He found my fucking car keys. You don't judge shit like this based on merit. Now, whether or not what we experienced was an "according to Hoyle" miracle is insignificant. What is significant is that I felt the touch of God. God got involved.
Vincent: But why?
Jules: Well, that's what's fucking with me. I don't know why, but I can't go back to sleep.
Vincent: You serious? You're really thinking about quitting?
Jules: The life?
Vincent: Yeah.
Jules: Most definitely.
Vincent: Oh, fuck. What'cha gonna do, man?
Jules: Well, that's what I've been sitting here contemplating. First, I'm going to deliver this case to Marcellus, then, basically, I'm just going to walk the Earth.
Vincent: What'cha mean, "walk the earth"?
Jules: You know, like Caine in Kung Fu: walk from place to place, meet people, get into adventures.
Vincent: And how long do you intend to walk the earth?
Jules: Until God puts me where he wants me to be.
Vincent: And what if he don't do that?
Jules: If it takes forever, then I'll walk forever.
Vincent: So you decided to be a bum?
Jules: I'll just be Jules, Vincent; no more, no less.
Vincent: Let me ask you something, when did you make this decision? When you were sitting there eating that muffin?
Jules: Yeah, I was sitting here, eating my muffin and drinking my coffee, when I had what alcoholics refer to as a moment of clarity.

Do I believe that this experience with the iPad was a bonafide 'according to Hoyle' miracle? A prayer answered?


First of all, the timing is already way off. The entire act of Joyce getting the iPad for Bennett was already in motion before I ever uttered a single word of prayer, before I changed my Facebook page, before I made any kind of commitment and decided to open any kind of door back to Faith.

Remember when Neo is talking to the Oracle in The Matrix: Reloaded and she tells him that he has already made his choice of whether or not he will save Trinity's life? Neo is confused by this. (Hey, it's Keanu Reeves, confusion is his single best acted emotion...NO WAY!!!)

So Neo asks her 'But if you already know, how can I make a choice?'

And the Oracle responds by saying, 'Because you didn't come here to make the choice, you've already made it. You're here to try to understand WHY you made it. I thought you'd have figured that out by now.'

Funny thing, Time, and you could argue that when it comes to Oracles, or The One, or God...that Time is like that. That what I am talking about right there is just Super-Crap. I would not tell you that you are full of it, either. There's room for all KINDS of theories in these here parts.

BUT (there's always one of those) I've said so many times before, I do not believe that direct intervention of any kind is how it works. Time manipulation not withstanding.

And the truth of it is? I can't afford to.

Here's why.

If I do, if I choose to believe that God exists as a totally and completely separate entity from Man and that He actually makes conscious choices about what happens here on Earth with all of us, then this WHOLE thing doesn't work for me. This whole thing can NEVER work for me.

Because to believe that is to believe that God had a chance to keep a tumor out of my son's head and didn't, and I can't accept that. Or He put it there, and I can't accept that. Or He decided to stand by and let me get the shit kicked out of me for years and He did nothing to stop it. I can't accept that, either.

So for me to have Faith, for me to have a relationship with God again, for me to have any kind of spiritual life of any kind, this is the way I have to manage it, despite some of its obvious contradictions which I'd be happy to address some other time. But if I try to go some other way with this, and I am back where I started. Placing blame, being pissed off all the time and walking away from a coffin that holds the cold body of someone I love.

Can you understand that?

Besides, when all is said and done, everyone has a different perspective, a different viewpoint, of what they believe and how they choose to believe it. And that's not only OK, it is GOOD. It is what I love about the Human condition. Makes things interesting.

As long as we aren't blowing each other up because we don't agree on how each others God does His or Her thing, then the ONLY things that matter are that you live your life the best that you can and you don't treat other people like garbage. Imagine how great things would be if everyone followed those two simple rules in life?

This Mission, Joyce showing up at my door with an iPad, and everything surrounding it...all the other acts of generosity and courage and sacrifice I have been the beneficiary of and that I have witnessed...all staggering. I can say that in many ways they are not unlike Richard being there for me when Bennett had his surgery, or Mark offering me salvation from self-destruction when he opened the door to his basement, or when anyone else in my life through acts of kindness and giving and spirituality have helped nourish my soul along the way to...wherever it is that I am now.

And that is what is of paramount importance to me. Right here. Right now.

Because at least where issues of the spirit are concerned, I am walking the path again. I am asking myself questions again. Revisiting some old ones, and finding new ones to seek answers to. And to think it all started because of an act of malevolence. That is what really makes me...well, it actually makes me smile, to be honest with you.

There's something...just perfect...about that.

So then what was it, this 'iPad Incident'? I don't know. I have attempted, ever since, to try to figure out what to call it, and I have no real name, no real explanation, no real words for it.

And I have decided that maybe, just maybe, it doesn't really need a label.

Struggle as I have for some kind of an explanation or rationalization for what happened, or any of the events that continued beyond it, and there have been many still, I think that, ultimately, it is the end result that is worthy of celebrating, explanation or no.

Because the end result is that after 20 years, my Faith has finally been restored. THAT is the treasure I take with me from you all.




  1. Well. I'm half way through and have to sign off...but wanted to say I am really enjoying it so far...and I do, of course have a response to the Universal God idea, but it will have to wait until I cast out some demons. ;-)

  2. Way back when, before this whole iPad deal began, which I might add feels like it has been going on forever, or perhaps it feels like I have known you forever not sure which one it is. Either way, before this began, every once in awhile, I would catch the word "hope" come up in a post you did and I rarely missed an opportunity to point that out to you. Because I always saw this in you, this faith thing.Even when you failed to see it in yourself.And I knew, the time would come when it would surface, I just had absolutely no idea that it would be in this most unexpected and amazing way.

    I am so proud of this final chapter. I am beyond proud of you. I think I have told you that like a dozen or more times.But it needs to be repeated and more than that, you need to FEEL that pride, or none of it matters.

    I am so proud of this community we belong to, one I didn't ask admittance to and really, have thought sucked at times, not the community as a whole but the circumstance and the pain connected to the journey. But this community,if we must belong, is a beautiful one. Epic proportions if you ask me.

    Well done friend.Well, well done.

  3. I am certain I don't know you as well as Heather, but I have always felt the same way. Known it was coming and that you had it in you.

    Glad to hear that you are beginning to see all the good out there and not just dwell in the bad.

    I know I've been MIA lately, but I too am very proud of what y'all have accomplished, even if I am not yet aware of it all. Now that I have a bit of free time on weekdays, I will try to catch up with all that has happened.

    Really very pleased to read this blog. Thanks for sharing yourself.

  4. This post, also awesome. thanks for sharing all this raw stuff with us all, and I'm glad there is more clarity (or something like it) where you are now.

  5. What Heather said. I'm always proud of you, though.

  6. Derailing somewhat to say you really are a hell of a writer, Ken.

    I really hope this all brings you some peace :)

  7. Wow.

    The crazy thing is that way back before the original MB iPad thing went sour, I thought that it was actually about something bigger than this revolutionary tool for our kids. I didn't know quite what, but I had my thoughts and this is eerily similar to some of them.


  8. First off, I am honored to be so often mentioned in this here blog post. Teared up in fact as I read it, not because I like being singled out as someone who knocks on strangers doors, but because I know the other side to the story.

    And there are two sides. Two completely different sets of facts. Mine include a talking angel. A sweet, beautiful girl named Kristen Ann Kirton, who no longer walks this earthly life yet somehow stopped traffic, blocked a turning car, played the perfect song at just the right moment, dined with me and walked beside me through a shopping mall.

    She opened my car door when I was afraid to move, and I have no doubt she helped quide your sweet Bennett that night. I still can't get over what a perfect little gentleman he was with me.

    What I love so much about the ending, or possibly just the beginning, to this whole story and what your version leaves out of course, is it restored MY faith. It allowed me to get to the place of forgiveness so necessary so the next evening my husband and I were able to renew our vows, on our
    25th anniversary, with little anger in our hearts.

    In summary, there has been a quote appearing on Facebook for some time that reads:

    Family isn't always blood. It's the people in your life who want you in theirs. The ones who accept you for who you are. The ones who would do anything to see you smile,
    and who love you no matter what.

    Ken, Heather and Polly (Kristsen’s mom). We are like family. A group of individuals who only met in cyber space because of our children: three still on this earth. The fourth, guiding and changing lives in miraculous proportions. Kids that others might not want, certainly don’t readily accept. Our offspring, who bring us such pain and worry, yet are our greatest rewards. And through them, we all have renewed faith.

    Thank you for sharing this Ken. It has been a pleasure to be on this journey with you.

    P.S. Richard...I'm curious to read your take on the second half.

  9. Boy can you put thoughts into words!! really enjoyed the Pulp Fiction reference. That movie is so deep on many levels. (One of my all time favorite lines from any movie ever comes soon after the quote you shared. I'm sure you know the one.)
    Anyway (thanks Joyce!)
    After my Mother died, my "intellectual" mantra became, "If God gets the credit for the good stuff, He has to accept the blame for the bad."
    That was the BEGINNING of a time of wrestling with God that has had a profound influence on my spiritual identity. What I believed then was just as necessary as what I believe now as God continues to reveal Himself to me...and continues to bring me into an understanding of who I was created to be. Man, I hope I get there before I go live with Him. Praise God that He meets us where we are, rather than waits for us to understand where to go to find Him!

  10. I have sat in tears many times, reading and watching this whole iPad thing. First the betrayal, then trust and faith restored. I watched in tears as each iPad was delivered into the hands of each child. A few weeks into it I received an email stating that funds had been donated in Kristen's name to the ipossible fund. I wasn't surprised to see that JEllen's House of Fabric was
    behind the donation. It seems as though they were selling pillowcases that Sarah had made and donating the money to the fund in Kristen's name. I again sat here at my keyboard in tears. You see, this past year has been the most difficult I have ever experienced. I miss Kristen every single second of every single day. She NEVER leaves my mind. Some days I can barely do a simple task like put one foot in front of the other. I come here to blog land because this is where I have gotten the most support, Aside from my immediately family, my husband, my children and my mother. My blog family is ALWAYS here. They have supported me and have always been here for me. I know that Kristen has spent many hours in Ohio with Joyce and Sarah. I know that this past weekend she was in San Francisco running right along side Heather. I am so very thankful to them for keeping Kristen alive in the hearts of so many. Her life and her death have taught so many people how to live.
    Thank you to all of you for sharing your lives with all of us.

  11. I didn't know if I would ever tell you this, but now seems appropriate enough. I've been praying for you since January, every night when I tuck my little guy into bed.

  12. Like many others I've been praying for you and your family for a looooong time. I am glad to hear your faith is at least partially restored.

    I would challenge you to maybe look a bit deeper into who God says he is. The central message Jesus preached was not that we needed to believe God existed, that is of little value; it is that we come into relation with Him on his terms, not our own. If we are to know and follow God we don't get to call the shots; Jesus actually says we have to die to our own self, our desires, and our plans-otherwise there is no relation at all-that's the first step.

    I just got back from my aunt's funeral. She lived 51 years with severe mental retardation from Down syndrome. I've found myself asking many of the same "why" questions. As she had been in my life for 40 years I've come up with some answers, but not many-and even the best answers don't adequately comfort the pain of reality. Still if you ever want to talk drop me a line or give me a call.


  13. Thanks. It's coming back. Got a few things to say tomorrow. I just have been a little sucked into other things, but I REALLY owe some updates in multiple universes.



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