Monday, April 2, 2012

Cutting Room Floor

I've often wondered about something that came up while reading comments from some of the regular readers and commentators, and I thank you all, regarding the last home movie I posted of Bennett and I interacting and his use of the phrase 'My Turn.' and his handling of the song 'Head, Shoulders, Knees & Toes'.

In fact, I was discussing it with Richard on the phone (Dora's Daddy) the other day at length...regarding what I show and do not show of Bennett overall within the pages of this blog.

Editing is everything, and I am wondering sometimes if I am painting a complete picture of who he is. But then again I often ask myself, do I WANT to paint a complete picture of who he is? It is a dilemma I wrestle with.

When it comes to me, I am not sure that it matters so much. I don't have many secrets, and yet, even with as much as I am prone to share, even I have a few left in my pockets. Some I intend to talk about at some point, some that I never intend to. But what rights have I, as Bennett or Carter's parents, to show their lives in totality? What is too far?

Do I want to show him biting himself? Hitting himself? I can probably get that on the camera, the question is...should I post it on the blog as a contrast?

I wrestle with it, like I said. On the one had, I want to remain positive. On the other, I want to be realistic about what his...about what is really like day to day. I think in many ways it is informative, it is educational, and it helps to show parents, especially those not IN our world, what life is like for us. Something that, while it can never be understood without walking in our shoes, even amongst each other many times, it helps to have as much information as possible.

Anyway, that's been on my mind the last few days, ever since I put that movie out there. I have this odd compulsion to write about all kinds of things, and yet lately I have found myself holding back. Not sure why. Have to figure that one out I suppose. And I am sure it has something to do with this unusual path I find myself on of late.

Which reminds me...I gotta tell you an interesting story about baboons.

BUT, I am outta time, so I'll get to that later.



  1. you post what you feel like you need to post..what you feel teaches others without risking your have been a good judge of doing this over the years..i have gone thru and read every single one of your blogs in here..and just recently started a few over at the other are a great father...and i dont know where you got it cuz you were never shown how to are a great father and a great parent..even though you struggle with your own inner demons about it..even if you cant see it..others ya bro!

  2. I think you have struck a good balance so far in what you show and what you don't. And you do discuss the more difficult things going on. I don't think videos of Bennett acting out are necessary, plus you never know where those might end up. Better safe than sorry in that regard I would say.

  3. Ah...the question with no answer. Or at least an elusive one. At best.

    I've been asking myself similar questions lately.

    I've come to a place where I feel that no matter what I share on the's only a fraction of who Trevor is. No matter how hard I try to share the whole of him...words, pictures and snippets on video clip never capture all that he is. It always falls short in either direction...the beauty and the tragedy.

    It's funny my own heart responds. How much I agonize over wanting the whole picture to be seen. When people rave over all his amazing...I find myself wanting to post the tragic more. Catch little clips of seizures just to say "see, his battle isn't over"! I have this need for them to see ALL of him. Because I have this thing about missing his challenges making his successes mean less.

    But then I emphasize the grittier things...and people respond with "that's so sad" or something along those lines...and I find myself wanting to say, "wait a minute! He's not sad...he's AHmazing! Can't you SEE he's amazing? And this isn't all sad...there is so much beauty here too!"

    I have a small circle of people that I know see him for everything he is...and isn't. That I don't have to qualify my happy posts. Or try to balance out sad posts. I need THOSE people. My BFFs. And not all of them have a Trevor in their life either - which is just SO amazing, really.

    I think I could never blog again...and they would just know. Ya know.


    I tend to share less and less of the sad stuff. Maybe it's self preservation?

    Maybe in a few months I'll have come full circle and be in a completely different place with the whole sha-bang.

    Either way...

    I think you do a good job of sharing your journey. I think there will be people who "get" it without you having to work hard. And there will be people who won't. Ever. No matter how mightily you swing your wordsmythe sword.


  4. How's that for a book?! ;)

    I would totally take your tactic of writing a post about it instead. But...


    It's much easier to not. :P


  5. This question comes up frequently in my head.

    It usually surfaces when someone says, oh he is so sweet and always so happy. I stop for a moment and think, is this the time I let them know "our dirty little secrets".... Taking the exit that goes to Walmart makes him freak out, but the exit before that is fine. A meltdown can happen when you least expect it... a dog bark, a baby cry at the checkout, and whatever we do... we NEVER EVER run out of digornio pizza (it happened once and we have never been the same).... but I don't mention those times, I just smile and say, Yes, we love him so much. And that is the most honest answer I can give !!

    Maybe it's a coping mechanism for me. Someday, when I decide to go to therapy, I will make someone a very rich therapist ;) But until then, I will let only those small few that are close to my son, know the hard times. As most have had a glimpse of it in one form or another.

    Like others have said, I think you have done a great job with balance. I really did enjoy the video. Take care and keep on, keepin' on !!

  6. I wrestle with this a LOT. I definitely like to post pictures of Charlie where he looks his best, and there are times when I wonder if I'm making him look too good--you know, not too handicapped?

    Not sure if I have all the answers on this one, but know that I've wrestled with it as well.

  7. I think its more than that. One has to consider if you are breaching your son's privacy. You as a consenting adult can bare your guts and show us your pimply arse all you want, but a child's privacy must be protected. That is what parents do. So its normal for this issue to cause conflict. You want to blog about your life and thoughts and all...and that includes your son(s)....but as a parent you want to protect and not over step your bounds. Tough balance. Even tougher when one party can't say, "hey Dad , stop telling/showing the internet that I (what ever what ever)"

    I have seen the awful comments that get posted on videos, the cruelness that is out there. The judgment without compassion or understanding. While you can shake it off, can your children?

    Bennett didn't sign away his right to privacy just because he can't currently(maybe ever consent). Your son isn't a pickled punk on display. Those who are reading along don't need to see, we get it, we know already, we hear it without seeing it in your words. Those that can't understand and have never been in those damn-tight-uncomfortable-can-never-take-them-off-shoes might catch a glimpse of a reality, I pray they never have to know. While it might foster some compassion and understanding....this isn't a clinical setting where you are teaching medical professionals in training. This is the net and there are other people out there who troll with mean intentions and that is who your kids needs shielded from.

    And on the flip side......Your early seizure videos are what drew me here to begin with. The sound of you talking to your son, that something, in your voice that unknowing, unsure, heart wrenching exposed soul touched me and made me what to know more. There is reason for filming and or posting the bad stuff. So I guess it could have merit, depending on how it was presented. The line in the sand then would be: "am I posting to educate/get feedback, possible help" or "am I posting to show the internet proof of why my life is hard" I can't see you posting for the second reason, you don't seem to me like your moral compass is askew.

    Peace be the journey


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