Wednesday, November 10, 2010

Three Years Young

Some time ago, I mentioned that one of the casualties in all of this mess was how we celebrate our holidays. This happens because often how we deal with our daily life is affected, and since holidays usually shift in position according to how they fall on the calendar, holidays can be affected.

There is no way to really avoid it. It's going to happen. You can try to plan around it. And sometimes you are successful. But other times, you choose to TAKE that appointment as scheduled, simply because it works best for your schedule overall and that's...well, that's just how it is.

Three years ago today, Bennett was born.

I hugged and kissed Jennifer goodbye this morning, hugged Carter, and tried to give Bennett a squeeze, as much as he will let me. He's not big on that unless it is on his terms. But I got a bit of a kiss on his head, a nice whiff of his hair that will last me a while.

It will need to.

I won't be seeing him again until tomorrow afternoon.

Right after work, Jennifer will be taking him directly to her sister's house (20 or so minutes outside of Cleveland) and I will be hanging back here with Carter. That is because tomorrow, Bennett has one of his quarterly MRI scheduled. He gets these in order to keep his brain closely monitored. We have to constantly check for re-growth of his Grade II Oligoastrocytoma.

That's Brain Tumor to you and me.

Rather than the four of descending on Mandy's house, considering she has a fairly new baby up there named Maximo (which I am still kind of bummed about the name as I REALLY wanted Maximus as Carter's first name and could only convince Jennifer to give me that as Carter's middle name which therefore makes Mandy cooler than Jennifer now and now how do I figure out how to create a situation so that my wife can reclaim the Cool Trophy back?), it was decided the best move was to hang back so that it didn't put too much pressure up there AND Carter didn't miss any school.

Especially since, initially, it was supposed to be for Thursday AND for Friday, but sadly the Friday appointment we kept trying to get with the Epileptologist for Friday fell through.

So there will be no birthday celebration tonight. Though we did have one on Saturday, in conjunction with one of Bennett's cousins. I figured I'd share some photos and a short video.

Though for Bennett? Honestly? It was just another day. He had some fun with some of the cousins, especially the girls, but he isn't yet to the point where he understands what a birthday actually is. And yes, the fact is, that makes me sad.

And a lot of the time, I do OK with it. More now than before, that much is certain. But I still get down, I still struggle with it, especially when I watch him be so...disconnected from this world. So disconnected from me. Especially like he is in this video.

He never seems to really be in the moment. He seems...detached from it somehow. In some ways afraid of it. It scares me for him to see him like that.

I know that I should focus on the fact that he had some fun, that he giggled and laughed some of the time and stay zeroed in on the positive.

I promise, I really do try. As hard as I have ever tried anything in my entire life.

I can't tell you how much it hurts to be his Dad and wait for him to come home at the end of a day and walk over to him and be all positive and smile and wave and smile and say 'HI BENNETT!!!' and have him not even acknowledge me as he walks right past me and into the next room.

Moments like these. I can't really describe the feeling to you. But just imagine how hard you have ever had to try NOT to cry, because you don't want your six year old or your wife to see how something like this reduces you to less than nothing, then quadruple it.

Then try to wrap your mind around how, not ten minutes later, you enter a room he is in and he runs up to you full force screaming 'DADDY!!!' and leaps into your arms, and then imagine how hard you have ever had to try NOT to cry, because you don't want your six year old or your wife to see how something like this reduces you to less than nothing, then try octupling it.

You know, I've been wondering something, ever since I read Claire's Blog today about her daughter Sophie's rights. I tried replying to her blog, but I've been having some computer issues with Java lately, and I couldn't. But the thought remains, especially today, after posting photos of Bennett and a video of him that shows him in, at least in my opinion, a less than flattering light.

And this is something that you could consider about not just a Special Needs child, but ANY child you have. Do we, as parents, have the right to share the private lives of our children in writing for the entire world to see (if they so chose) in a blog?

It's something I have been asking myself a LOT of late.

I wondered, if Bennett ever reached a point where he was able to understand and read and comprehend the things I have written about him on my own blog, would he learn to hate me for some of the things I have said?

For that matter, will Carter when he grows older?

Did I make a terrible decision by not remaining anonymous when I started this? Should I shut it down now and re-enter the world using anonymity as a shield? Is it too late for that at this point?

Food for MAJOR thought. And I am certainly open to any suggestions you all have.

Hell, I was shocked by yesterday. I expected something ENTIRELY different. When I suggested I go back to study Bennett's pre-seizure videos to look for evidence of Autistic style behaviors to help me make a decision about whether he should stay in an ABA Therapy program or move to a more basic program there was an OVERWHELMING response, both privately and in the comments section, that I should not do so.

I expected the opposite. I expected that if I did NOT do the video study that I was not doing all I could for Bennett, that I was not being a good father. That I was not, despite its potential negative affect on me, doing what was best for him, and that was a concern of mine. But no one saw it that way, particularly those with experience with all of this.

Shocked is an understatement.

Clearly, I still have so much to learn.

But one thing I do not need to learn is what a profound impact all of this has had on my life.

Bennett, my dear, sweet little scared the crap out of me when you were born. I was a TERRIBLE father to you the first two weeks of your life, when you were alone in the NICU with your Mom and I barely ever came in and was reluctant to even hold you. I could simply not face my fears of what it all meant. Ironic, isn't it, that all I want to do now is hold you and it is so hard for you to let me?

But I'll tell you this.

I'd walk through fire for you now, son. I'd gladly step into a hail of bullets. I'd step in front of a freight train. I'd do anything and everything it takes to protect you, your brother and your Mom from anything that put any of you in danger.

And I would gladly, without hesitation or remorse, give my very life if it meant you could be cured.

But sadly, or maybe fortunately, that option is not available, so instead, we're just gonna keep going and make our way through this, somehow. Step by step. Inch by inch. Day by day. And the meantime, even though you don't know it yet, Happy Birthday kiddo.

I'm going to keep hoping, as deeply as I possibly can and as dangerously close to prayer as I will probably ever get in my lifetime, that one day you will know what that means and be able to blow out a couple of candles and munch on some cake with all of us.

I love you.



  1. Beautiful Ken.Your love for your son,is just beautiful.And your sharing of your battles and your demons and that deep,would truly die for your son love,is appreciated.That sharing,in the end, makes us better for it and able to forge ahead with our own "stuff".Most especially those of us with children who are complicated on so many levels.

    The privacy issue is something I have mulled over often.Even more so after receiving backlash from extended family on my sharing of Joe's struggles.But you know what out weighed that?The waiting emails,the comments and the calls thanking me and looking for companionship as they walked similar roads with their own children.And then there is Zoey.The sad fact of the matter is she will never know what I have written about her and her miraculous journey thus far but it is in the sharing and the lending of support,that helps me make sense of the senseless sometimes.Ultimately the decision to go private or anonymous is a personal,family choice.Understood by all if that was the direction you went.

    Enough.Now just the very happiest of wishes to you all as you celebrate the birth of your little guy.Prayers as you head into the MRI and while we are on the subject of prayer,I do believe I saw that word prayer and "hope" or some form of it,both in a sentence.Together.Nice.Very nice.

    Thanks for the pictures and the video.Makes us here in cyberland glimpse a bit into your life.Thank you for that as well.

  2. I will admit now, I don't have kids, I don't know what I would do in your case and I won't even start to act like I do. However, I was a kid, and I would have given anything to have parents who would write about me. I would give almost anything now to have parents who say the loving things you do about your children, and those things are the ones that stick with me when I read your blog. You care so much and that shows through all else. Just an opinion.

  3. Happy Birthday, Bennett. You have a mom and dad that love you dearly, no matter what.

  4. i think you worry too much abut stuff like what might be in the future. Will your kids be embarrassed by some of the stuff you have posted? Maybe. However, I think that you should never be regretful of any truely honest moments of sharing and that you have many of those here on your blog. That's what it's all about. At some point in your life your family will understand and appreciate that.

  5. Happy Birthday Bennett!!

    Thank you as always for the video.

    Your feelings for Bennett and your family come through so clearly and profoundly...not the fog you describe. You are all blessed to have each other.

    At the risk of having my comment deleted...I have to say, while reading the paragraphs of your love letter to Bennett..I wondered if realize that you and I and everyone have a Father who feels the same way about us. I think it is why we feel the way we do about our own give us a small glimps of how He feels.

    I know, I know...I see a cross...

  6. We celebrated Austin's 3rd birthday nearly three weeks ago. I went all out to decorate and make it cute and special. Something I imagined that he would have asked me for if he could talk. Or even comprehend his birthday for that matter. He wouldn't care if we did nothing. But, I do have hope that maybe one day he will be able to look back at photos and know that we still difficult as it is. The decorations don't matter, but the fact that you celebrated does.

    And do you wanna know what I think about the privacy issue? If Bennett does look back years from now and gets embarrassed...that means he will accomplished the goals of interpreting his feelings that you so desperately want him to do. But, I don't see how he could be embarrassed by knowing how much his dad loves him. Only a parent who loves his child beyond description could this be so devastating. He will know that he and Carter are your world and that you spent years researching and finding ways to cope so that you could help him. This blog is not just your outlet, but it has been support for anyone going through a similar experience. You've found support through it, but you've also given it to so many.

    Whew...enough, Holli!

    Happy Birthday, sweet Bennett. He may not know it now, but your daddy is one awesome guy!

  7. Happy Birthday, Bennett!

    You're THREE!?! Wowzers! Lookit you! My God you are one gorgeous kid! Your dad captioned lots of pictures of your birthday party with quips about how you love hanging out with the ladies...maybe so, but I think they may be just as taken with you as well!

    Lots of people around you work really hard to try to "Live in the Moment." Here's the deal about that: Their minds are full of "Would have, could have, should have...What if, what is, what was..." So, if they are eating ice cream, their minds are spinning thoughts and sensations about the yumminess, and ALSO spinning thoughts about every other ice cream they've ever had, spinning thoughts about what they should be eating, what they could be thinking, what they would be doing. It's a mess in there! Too much spinning! now -- I know you like spinning things... it rocks. Frankly, I do, too. It's so predictable and soothing, right? But all of that thought-spinning? Yikes! It's chaos -- nothing soothing about having your brain on 80 channels at once! So THAT'S why they work so hard to "Live in the Moment" - they are trying to make their brains more still...more soothed so that they can taste and enjoy the ice cream and not be distracted by all of that other brain-noise.

    Why am I going on about this instead of still talking about how cute you are and how awesome it is that it's your birthday? Well, because there's somthing not quite right about me, BUT, I DO have a point: I watched the bithday video that your dad posted really carefully. Just watching your face... It was AMAZING! You --- YOU, sweet child, were Living in the Moment. YOU were doing what so many of us struggle to do. Cake+candles=cool: stay and watch...singing?!=nothing to do with me: gonna look at something else. Makes sense to me!

    I wonder if I ever get a chance to meet you if I'll be able to get my mind to be as pure and focused as yours. I'll try -- that's for sure. I'll try to take each moment, taste it, chew it, savor it and then move on to the next moment. And then maybe we can get some ice cream :)

    You are adored by so many. Everyone who knows you and knows of you has your back -- forever and ever amen. Your parents love you perfectly and completely. Enjoy the Now of every moment. Enjoy the safety and the love that surrounds you and enjoy this 3rd year.

    Rock on , Bennett! Woooooo!

    Aunt Kim

  8. That video was like watching my son 13 years ago. I'll not sugar-coat it - it's been quite a journey - but step by step, day by day, you will get there.

    And Happy Birthday to your very cute son!

  9. He does look quite happy in the picture. Give it time my friend. Emma has a six month head start on him and guess what...she had her first two word combo this week. "Bye-bye ma-ma" - said to the babysitter not me... Hang in there.


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