(This is Part V 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
On the darkest days, the sun always shines behind the clouds.
I don't know who actually said that 'for real', but whoever did needs some kind of a statue, somewhere. Because with as much darkness as I have known in my life, and as much as I talk about how bad things can get, I can also say this with absolute, unwavering certainty.
Ever since the very first day that Bennett started having seizures, there were little things that were happening around me to remind me that I was never alone.
But as is my nature, and as consumed as I often am by anger, by guilt, by rage, by all things negative...it is so easy...so very, VERY easy to fail to see those things. It is also easy to simply refuse to, when you are constantly bombarded with Life.
It's like when you train to do something in a controlled environment, like maybe Karate or something. Everything is groovy. You're learning form, technique, movement, how to punch, how to kick, how to defend, etc. And you feel terrific as you do all this training and you look great doing it.
But everything changes when you are actually fighting another human being.
Because they throw all kinds of variables at you, just like Life does, and suddenly you don't look as graceful anymore do you? And 99 times out of 100 that first match finds you flat on your ass.
That's why martial arts also teaches things like mental preparation and focus.
Things that allow you to remove all of the distractions that might make it more difficult to zero in on that which you need to be thinking about. Things that make it more difficult to 'see the remote'.
Yeah...George Lucas really wasn't an asshole, after all, was he? Despite what you may think about Jar-Jar Binks, The Force is a nice blend of East meets West spirituality, and we ALL can learn a thing or two from Yoda.
Spiritual Adviser? Jedi Master? What's the difference?
Yes, it is easy to get distracted, and miss the signs. But thankfully, like I have been saying over and over, the right people in your life become signposts...again and again and again.
I'm walking down the streets of Cleveland, on my way back from one of the stores near the Cleveland Clinic.
It is Tuesday afternoon.
August 25, 2009.
In two days, Bennett will have a serious surgery that will remove a tumor in his brain that, we hope, will stop his catastrophic epilepsy (so inadequately named Infantile Spasms) and won't cause him to lose any of the skills he has actually managed to gain.
And oh yeah...obviously we hope that the surgery won't kill him.
The outpouring of support from my friends, both online and off?
E-mails, messages and phone calls are mind-boggling. I am a pack-rat, I save everything. This is why I have two multiple Terabyte towers of storage for my computer crap, as it is often fun to go back and read this kind of stuff.
Sadly, the one friend who is absent with any messages at all during surgery week is Mike W. I don't hear from him. I figure he must be busy with his daughter. I heard from him days before, and I hear from him after regarding some Questcor stuff and Infantile Spasms Awareness Week and a television appearance that never materializes that Danielle is copied on, but not a single thing about Bennett's surgery while he is having it.
It stings. More than I thought it would. Especially since he was one of the first few people to reach out a hand to me when I was drowning in sorrow those first few weeks, looking to anyone for answers about what might save my son.
As I round the corner about to hit the doors of the Inter-Continental Hotel, my cell phone rings. I do not recognize the number. But that is common this week.
It is Richard, my old friend. We have not spoken in a long, long time.
He tells me that he is boarding a plane tomorrow and that he will be arriving in Cleveland. He wants me to know that he will be there for Bennett's surgery. I have not seen Richard for probably 20 years, give or take. We've spoken a few times since then mind you, but I haven't been in his presence in at least two decades. I thank him, tell him I am looking forward to it and we say goodnight.
I figure, for him to take this trip he must have a damn good reason, but I was not really looking forward to the extra worry of him being there. My Hulk was in rare form. I was angry. My son was seizing like a Mufugga all day and all night, and I was not sure that I could also look out for someone else's needs.
You might think that thought process harsh, and you would be right. It never occurred to me that anybody could be so...completely and utterly selfless. But Richard is a good man, and I have never considered myself to be one, and it was hard for me to wrap my head around his actions and motivations.
I always considered Richard to be a good friend, don't get me wrong, but to fly to Cleveland when he is not made of money to be here for my son's surgery, when we haven't actually seen each other in 20 years?
THAT'S above and beyond the call.
As the cool rush of conditioned hotel air blasts me in the face and I near the elevators I figure this must have something to do with his Mom. Though I do not know the particulars I am vaguely aware, and only vaguely (this is what a shitty friend I have been to him and why I am even MORE puzzled as to why he wants to be here) but I am aware that his Mother died of a brain tumor, but as far as the details of it? I didn't know them. Not as much as I should have.
But I figured it must have something to do with this, and that his intimate connection to this condition is what is driving Richard to get on a plane and be here with me at what could very well be one of the darkest hours of my entire life.
The next day Richard arrives and after a few moments of awkwardness it was as if the years melted away, as if no time has passed at all. In fact, his presence there makes the experience so much easier for me. He is at my side the entire time, anchoring me any way that he can. He is, in essence, everything you would expect a good friend to be and even more. He was taking care of every conceivable detail, and then some.
When you are waiting for your kid to be wheeled off to have his head cut into, there is a feeling that comes over you that I can't easily put into words. Maybe the best phrase I can use to describe it is 'absolute dread'. Your mind goes to dark places, it wonders if you will ever see his face again.
I wondered much more than that, sitting there, my chest heavy, my head hurting, my heart so burdened with pain, a pain that I had never known before, and I knew pain. What if he doesn't know who I am anymore? What if the part of the brain they cut out is the part that has 'Daddy' in it?
When you are in that small room, you almost have an instinct to run. To just GET OUT. I would be lying if I didn't admit that I looked at the door a couple of times and did not have the thought flash through my mind. You start to feel a rush of anxiety, or at least I did, and I. Just. Wanted. Air.
Or you just want to start screaming, as you are making a small video and you see that Bennett is having a cluster of seizures, again. You can only hope that this is, maybe, the last time. The last cluster. I stopped making the video and hung my head, I didn't really have any tears left in me that particular week.
I felt the firmness of a steady hand on my shoulder.
He must have seen my body language change.
When Bennett was about to be taken away, Richard wanted to say a prayer. He'd been doing that a lot since he arrived. It was welcomed. It is, after all, one of his defining characteristics. Always has been.
For every previous prayer, I did what I always did during prayer since I walked out of the Church. I politely bowed my head, looked around at my shoes, noticed how dirty they were, took a look at the floor tile and other mundane things.
During this one, at this particular moment, I allowed my shields to drop for a moment. I closed my eyes. And while I did not actually join in, I did not force it away either. I did not push against it with all of my hate. And for the briefest of fleeting moments, almost like the soft flutter of hair across my face, I felt an echo of that 'touch' in the room, a sense that, somehow, Bennett was going to be OK.
I can't explain it. There is no rational reason for it. There never is.
I just somehow knew it.
I left and went out to the waiting area feeling...less afraid.
Later in the morning I finally asked Richard, point blank, why he came. I thanked him, of course, for being there, it was a huge relief, even though at first I was very nervous and worried and worked up about it, a fact that I did confess to him. I never did keep secrets from my bud. And I asked him if it was because of his Mom.
And he was honest, as he always is.
He said that a lot of the motivation about his being here was related to his Mom, he had to admit to that, and certainly because he has always valued our friendship, despite the distance, despite the length of time that has passed between actual visits or phone calls. But each of those things were secondary to the primary reason he felt it of utmost importance for him to be here.
He wanted to be here to pray for Bennett, because he knew, because of the way my relationship had turned out with God, that I would not be able to.
I was, frankly, stunned.
Not in a bad way. Just not the answer I expected.
I considered it to be a very noble, very selfless, very...Christian thing to do. And extremely non-judgmental, exactly the way Richard had always been with me. Even when we disagree about things of a spiritual nature (and we do, even to this day, often respectfully disagree), he never judges. A point which was brought up even that morning, by me, when one of the Techs came in and drew a mark on Bennett's left side of his head with a black Sharpie.
'Why did he do that?' Richard asked.
'I'm guessing so that when he is in there the surgeons know what side of the head they are supposed to cut open,' I replied. 'Old School, don'tcha know.'
I looked at the mark, a giant 'X', marking the spot, though it was slightly skewed, and it could almost be a 't' or a '+'.
'You know, I'll bet when you look at that, you see a cross, don't you?' I asked him.
'I see an 'X', that's all.'
'That figures.' He smiled.
And that was that. He knew.
I was struggling. That was why he was there.
And even after the surgery, stuff just kept right on going on just as it always had been, like a roller coaster ride from Hell.
And if you've been a reader of this blog for any length of that time, you know the ups and downs we faced between then and now. I got a great job and then got laid off again, the financial ups and downs we've faced, my mother's illness, the issues that come along with Bennett's multiple disabilities and all of the fallout with his behavioral difficulties, self-injuries, his learning problems, etc.
Carter's scare with his kidneys, the Ohio government cutting disability benefits, the death of Eddie, of John, our miscarriage, my Mom's house getting robbed, the screwdriver through my hand, Jennifer and I nearly getting a divorce, the GI issue that sent me to the ER, the anxiety and depression, the house beginning to fall apart around us, the tonsil stones, the Ulnar Neuropathy on and on and on...
Oh and let's not forget...the TV show LOST ended.
That REALLY sucked.
And of course, the entire reason for this small mini-novel...the Marissa's Bunny iPad Contest.
Because it is here, at this point, when I realized that I had put someone who I considered to be a trusted friend into a position that allowed him to take advantage not only of my disabled son, but of my vulnerability as a Special Needs father and blogger. I was shocked and in disbelief. In all my years I had never known such a fierce and bitter betrayal and I think it is safe to say I will probably never know its like again.
And yet, for reasons that are totally beyond my ability to explain, this time something was different about the way I responded to this latest nasty turn of events.
I did not feel anger, or hatred. If I did, they were fleeting and temporary reactions. They did not consume me. If anything, my emotional state was mostly that of sympathy, or pity. But I did not want to dwell in the negative. I couldn't. Not anymore.
This time, things had to be...different.
And just like that, something inside me simply came apart...and was remade.
It was the first and only time that I can remember having a very specific reaction to something negative in my life that was 100% different to the reactions I had to most of the negative things in my life. I made a conscious decision to respond with dignity, to live my life differently, to control my emotions more effectively, to focus on the positives. To do something good.
And then? Everything changed.
To Be Continued...