Thursday, August 20, 2015

The Mirror Universe is Closed Today

That means even though I have a goatee which generally insinuates negative, or I am already what my evil twin would look like in Star Trek's alternate reality, I'm supposed to keep that mm-hmm good stuff flowing and be sure the door to that Universe stays shut.

It's gotta be that way, right? Yeah? Pause for reassurance…wait, this isn't a conversation. It's written word. Sometimes the voices in my head are a pain in the butt.

Yeah, it's shut, though maintaining Maximus Positivicus isn't easy while writhing in agony. Which I am, and that's no joke. Tonight I had tears in my eyes over it. Bennett, bless him, actually came over to me and patted me and said "OK, Dadda, OK".  I did say I would try to steer away from The Lilly Health Reports, but I will go there long enough to tell you that it takes me an unusually long time to get these posts done because of the intensity of the pain, inability to sit or stand for extended periods in one position, type, etc., my vision gets blurry super fast and my hands continue to shake like they did the first time I unsnapped a, um, a forgot what I was going to say for a second.

Oh yeah, I was going to say I was about as thrilled as anybody has a right to be when so many people responded to my last post. In comments, Facebook, privately. In the overall scheme (solid recovery from Health Report there, Mr. Lilly!), I'm not comparing it to something you would see on more popular blogs, but it's enough…enough to remind me how important doing this is to me.

Overall I do feel hopeful. We drop that in? I'm not sure. I am trying to reassure, which isn't a bad thing for anybody to do. If that's what it takes to keep some positive mental energy flowing? That's what it takes.

It's weird. Making an effort to stay positive. Like wearing clothing in a completely new style. Not that my geeky-ass couldn't benefit from that, as I continue to wear the same ratty shorts and Red Kap or bowling style shirts I have been wearing for the past fifteen years.

Metaphorically, continually applying the pressure on the inside to look for the good feels like I've abandoned the Nerdiform in favor of something out of GQ. The awkwardness of it is striking for a man who finds it easier not just to tell you the glass is half empty, but what's in the glass taste like shit.

Not my joke, but a good one.

But the times they are a-changing. And while I still can find myself down, or tearful, negative, downright paralyzed by abject terror, I try harder to fight through it these days. I believe that somehow I am going to find a way.

I don't know why.

I just don't know why NOT.

Would you like to know where I find a great deal of my inspiration?

My other son.

The one I don't write about very often.

His beautiful soul, his smiling face. And his ears of power. ;)

Just like mine when I was his age.

In the early goings of this roller coaster ride not writing about Carter was an oversight. A Dad too consumed by the overwhelming power the Disability Grenades had when they exploded on our lives. Hours lost picking out shrapnel, less spent on healing. For all of us.

Later, during times I have been blogging, the decision morphed into that of a conscious choice of exclusion.

There is a freedom to writing about a son with a disability when you have a fair certainty he will never read what you've written.

You cut loose, open up, let fly your inner self.

It's been about as liberating for me as anything I can think of.

When you start to think one of your kids is going to grow up and begin reading your material, it gives you pause. Lots and lots of pause. You hesitate when pulling out a fantastic bra reference, for example.

Since the seizures began in 2009 Carter had to get used to being placed in the back seat to Bennett's special circumstances, I wonder what he will think when he starts to read all of this and seed how excluded he was from my ramblings?

If I have any brains in my head I will have done something about that. Not here. But somewhere else, somewhere it can matter more. So that I can be sure he knows what this journey in this space was about.

Maybe he won't question it as much in the future if I continue to work on things between the two of us in the present day. Our relationship is as different as it gets for me relative to the way things are with Bennett, but it is no less meaningful, no less important. And I've been doing as many little things as I can to show that to him.

It's bearing fruit, slowly, despite it's difficulty. In some ways it is harder for me than being a Special Needs Dad. I don't know how to explain that to people. Not yet. Someday I will. I'm sure it has something to do with the fathers I had. Or didn't have.

I admire Carter. I'm proud of him.

In many ways he is like me. I don't always encourage that, trust me. I want him to be better than his old man. What Dad doesn't?

Often I find myself impressed at what a strong, resilient boy Carter is growing into. He has undergone a rocky, at times tumultuous relationship with his younger brother during Bennett's more aggressive periods, yet Carter bounced back somehow and continues to try and be there for Bennett, to draw Bennett out, to connect with him.

So many things I have tried to teach him about how to succeed with Bennett have taken time to take root but they have become a part of Carter's universe, and when I see him using those skills I have to occasionally leave the room so that Carter can't witness my tears of parental pride, joy and absolute love for him and his little brother.

How can I not draw positive energy from that? From him? Besides, I owe him a father to be proud of. Over the past few years I have fallen short in the role model department.

Many things inspire me of late. The visit from Aaron. A meeting I had with a priest. My Mom's fight with her illness. The blogs of my friends. Encountering new and interesting lives and experiences through the most unexpected ways.

When I saw this latest set of pictures you've been seeing, from an outing at a hiking trip, I was inspired to finish that last post I had been writing, which was about acceptance.

There was a time, in any public place, that Carter had a real hard time with Bennett's expression of himself. If Bennett sounded too "disabled" Carter would attempt to peel off his own skin so he could hide in a blanket of it. He would become so embarrassed at the attention it would draw to us, then you could see the shame, followed later by the guilt, take over his face.

It was like falling rocks. Once started, these emotions in him could not be stopped. Inevitability. It's a hard beast to slay. I get it I really do. Me? Nowadays I love it. Let it fly. It tells me and the world that he is communicating something. But I wasn't always that way. On the outside you might never have known, but on the inside I hurt like Hell for all the things I hadn't come to terms with. That feels like a century ago.

Carter has always wanted to get some kind of award or trophy. To date he hasn't received one to satisfy that need. He has watched as Bennett has received two. Two damn nice ones I might add. I was thinking I should have one custom made, just for Carter.

He has come very very far.

During this trip, and this is only one example, there are too many to count, he spent so much time engaging with Bennett who, even though he doesn't show it all the time, is overjoyed that Carter is right there by his side. Bennett adores Carter, worships him, often won't go somewhere unless Carter comes too.

At some point during a quiet moment of picture taking, Bennett expresses himself.

It is not a quiet expression.

Some other time, some earlier place, this would have been a different boy. A boy with his Dad's goatee. But the Mirror Universe is closed. Thanks in large part to him. In THIS reality, Carter has more patience, more tolerance.

At the end? The smile on Carter's face is priceless to me. He is a beautiful, wonderful, perfectly flawed son and brother. I can see it right there, as plain as the freckles on his nose…he accepts Bennett and loves him and he accepts the life we have.

I am happy for him. It's a good place for him to be, his spirit will be stronger, his heart will feel more nourished.

Yeah…I really need to come up with some kind of trophy. "Bestest Butt-Kickin Boy"? Nope. "Loquaciously Loving Lad"? Eww gross. "Brother of the Year"? Yikes, too formal.

Wait, I think I got it…



You think that's overboard? Hell yeah it is! And yes I know it's wordy. It's me. I have some…editing to do. Consider this a first pass.

Cant wait to see it when it's finished!



  1. It sounds like things have really changed and gotten better between Carter and Bennett. I really think having siblings can add so much goodness to a kid's life. I love the fact that our Zac will always have his brother and sister around and that they all (mostly) get along.

    You have to do that trophy.... Carter will love it :)

  2. Both boys are such a blessing!

  3. Bennett is lucky to have Carter as his brother, and you are lucky to have them as your sons.
    They love each other, you love them, that's good for you future, that's really a motivation to read those lines and think of their future with good things for them together.
    Carter will always be there for him, he loves him, as a father it must be very reassuring that Bennet will NEVER be alone in life whatever happens, his family is there :)


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