Thursday, September 29, 2011


How EASY it is to stray from a path.

You know it occurred to me, that with all the distractions of the surgery, the Mission iPossible project and so many other things I have not really updated this blog or even my Facebook page with any recent pictures of the boys in AGES.

Strolling through the end of summer and into this Fall, I've been focusing so much on my surroundings, on the minutiae of the journey itself, I've not only lost sight of the path I am walking on, but have you ever noticed that you can often forget about the people who are taking the same journey right alongside you when (and if) you allow yourself to get like this?

It's a sad reality of humanity truthfully, but it happens. At least to me it does. I don't know about anyone else. I HOPE it does. I'd hate to think I am as super incredibly weird as everybody says I am.

But I GOTTA try to remember to come back to the things that matter more often.

These nuggets are important, but I do know why I sometimes avoid them. There are Truths inside some of the photographs and videos that I sometimes take of Bennett that I haven't...what's the word...I don't know that there is ONE word...I just know that even though I keep thinking I have made my peace with where Bennett is, with WHO is he, and where he is headed, I then suddenly realize that I haven't.

I remember a post of Elizabeth's some time ago, but to dig through her shitload of post counts of all of her wit and wisdom to find the exact one would take me forever, but it was about some painfully obvious 'scientific study' that concluded that parents of children who have or have had epilepsy, or disabilities, or something, are depressed.


But I remember reading the comments and I wanted to chime in but for some reason I didn't say what I was feeling, which was this.

I think that the sooner you can come to terms with the fact that your life is never going to be the same, the better off you are going to be. But I believe, and this is just me...I do believe that a certain sense of sadness will always be with matter what. However, it can be manageable. IF you have a few weapons in your arsenal.

Weapons that serve your particular battle. Weapons like Faith certainly, for some folks, but I think even more key, or even related, is acceptance. I mean...if you think about it. Once you actually make friends with the Monster Under the Bed, is it really as scary once you get to KNOW it? It may still upset you that it is always there, it may still wear on you, and it may often bring you down...but there may be days when it actually is something you can learn to live with. Maybe even take it out to dinner, have a cup of coffee...cop a feel even.

For me, the more thought I give this, the more I still think I have to move past what was lost. I have looked at old movies of Bennett, something that I finally did, because I felt it was time to do so.

There is one particular disc I watched a few times, recorded in late 2008. It was the four of us, sitting around in the living room, the same one here that I am writing this blog in, in this leaky, falling-apart house where I also recorded Bennett having a ton of seizures. We were so happy, all four of us. Bennett was 11 months old, and he was walking around, a little stumbly, but doing it. He was saying 'Momma!'. At 11 months. He was bright-eyed and cheerful. Inquisitive and curious about his world and his surroundings.

I found myself wondering...was the tumor in there growing yet? Had it started? Was it like a balloon, getting more and more air, just waiting for the right sharp pin, a vaccination that was delivered 4 months later, to make it pop?

With a very tearful face, I realized I felt a sense of tremendous LOSS. And it dawned on me that this type of situation was something I have never faced before. This was my Kobayashi Maru. And something clicked in me. All this time I have been holding out this hope that Bennett was coming back. I looked back at some old blog posts about counting words, and checking at his development post-surgery, and fixating on the phrase 'Hi Daddy!' a lot.

A phrase that he could say, clear as a bell, before the surgery. A phrase that he still, as he rounds the corner on being 4 years old, he cannot say. In fact, if you ask him who I am from time to time, he may say 'Daddy!', but other times he might say 'Kee-kol!' or 'Mommy!' or even 'Car-ker!'.

I found myself using phrases in my writing like 're-wiring of his brain' a lot, and I very much expected, believed, hoped, that things were going to right itself with him. The cold, hard truth of it?

I believed, with all my heart, that since Bennett had a Brain Tumor and that we stopped his seizures cold with its removal, and since the tumor had not returned, that somehow he would start to become more like the Bennett he was before all of this shit hit the fan.

The fact is, the Bennett I knew, my son that I rolled around with on the floor and played with and had all these plans for, really is gone, and he is never, EVER, coming back.

And I think that my ups and downs and twists and turns have all been due, among other things certainly, because I have been fighting the acceptance of that for as long as I have been writing about his journey since his surgery. Or at least for many months AFTER the surgery.

I have been in denial.

The psychological evaluation that he had in July, which still had him in the 14-18 month range in most areas cognitively and measured his IQ at 48 was probably the thing that pushed Jen and I both into the cold arms of Reality.

The boy is nearly 4.

More than you can possibly imagine, I love my sons. I love my family. In so many ways I already, as the Father, feel like I let them down because of where I am in my Life, struggling like I am. All the baggage I brought with me. And now all of this heaped on top.

I swear...sometimes I look at them and wonder if they would be better off without me. And then a voice inside me says 'You know, your Bio-Father probably rationalized the same thought when HE left.' and I resolve myself even more to find strength and courage to make it through another day and find some good in it. Some good in myself.

Is it difficult sometimes to look at photos of Bennett occupying his time at the Washing Machine spin cycle and compare them to the photos of Carter getting on the bus for his first day of school? Yes it is. Two very different paths in life for two very different, two very wonderful, boys.

And yet they also walk the SAME path, alongside me.

I owe it to them both to work harder to get my shit together.



  1. You've said it well, beautifully, with strength and love for many people, Ken.

    It's good to hear this voice again. And I wish you continued strength and peace -- and solidarity in shared loss and bittersweet acceptance.

  2. Deep in our hearts we know our children CAN NOT do it on their own. Only fools who, as you well put it, rationalize that they are irrelevant or a hinderance imagine that their own children can somehow "figure it out" on their own and be anywhere near true human beings.

    You, my friend, have strength that I have never dreamed of having to find within myself. Yet I firmly believe that, if Carter and Bennett and Dora NEED their fathers, and THEIR fathers are there for to do you and I need our Father....and He is there for us.

    Excellent elloquent post by the way.

  3. Together you'll walk the path, no matter where it leads. Yes,sometimes diverging off the set course, but always, always finding your way back.

    Always finding your way back because of that deep abiding love you have for your beautiful boys. For your family.And also, because you are the man you are Ken, whether you believe it to be or not and you my friend, are not capable of being any other way.

    Have I mentioned lately, how proud I am of you?

  4. I have to agree that you have phrased this issue perfectly. You have to let go of the child you "thought" you were going to have, along with all of the dreams and plans you had for that child and your family. Then you must embrace and love the "new" child/reality with all your heart for what they are and will be. I feel like I don't have the words, and of course everyone's situation is different. It really is like you have to let your dreams die and move on - accept your new world. You captured it so well.


    P.S. what and when is mission 2. I know there will be one! ALL of you rock for what you are doing, and I love the updates, pictures and videos. Thank you.

  5. I know my situation is SO different, since I chose it, rather than having it thrust upon me. I almost felt I shouldn't comment, but then I wouldn't get to tell you just how cute both of your boys are and how much I enjoy hearing your thoughts.


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