Wednesday, August 12, 2009

Happy Anniversary

It is now six months to the day, hell, to the MINUTE, that I saw Bennett's first seizure. I set this blog to go live at the moment I noted it when we were hanging out together in the living room while Jen was at her aerobics class. 7:23 PM. February 11th. 2009.

Seems like it was only yesterday in some respects. In others it feels like a lifetime ago. To be perfectly honest, if I went back in time and met myself on February 11th, I am not sure I would recognize who I was, because I know it isn't who I am. Life is just so very different now.

You might be wondering...OK, Lilly, are you going to explain the horrible Maggot photo you opened this fucking blog post with? Yeah. Today, this morning, we walk out to the garage, the four of us, to take Carter to Day Care and Bennett to his grandparents. Huge toad...HUGE, is right there in the middle of the floor.

That was odd, I thought. Since I quit smoking the garage door is rarely open. How the heck did that thing get in here? Of course Carter runs right over and leans down to take a look. He said 'Hey Daddy, look at this GIANT toad! Hey, look at all the Frog Worms!' I look over, the garage is swarming with maggots. All over the floor. All over the trash can.

Guess some flies got jiggy wit' it yesterday and were banging in my garbage. The eggs only take 8 hours or so to hatch. The toad got in to gorge itself on all the creepy wigglers. Nice.

We get the kids into the cars and I came back to it later to deal with it.

So why post that pic? Why even bring it up?

Because today, on this anniversary, I found it ironic that the garage had a maggot army growing within it. See, maggots really sum up my current emotional state. It's crawling with these little fuckers, because my current emotional state feels like rotting flesh, and maggots LOVE that shit.

Of course, who's the whiny little bitch? What right do I have to complain? Not so sure that I do, not one goddamn bit. I've been watching Bennett have seizures for six months, watched him slip further and further behind cognitively, watched my family start to come apart from the inside out.

So what?

Go to ANY blog that is on the side of this page and visit their blogs and there are people who have been struggling at this for a lot longer than me. There are mothers and fathers too writing about situations that sometimes make me feel...embarrassed... about writing about mine. Honestly, my situation pales in comparison to almost ANY person who I call my 'IS Brother or Sister'. We don't talk to each other like that, but it's the truth.

I write one of these negative posts while at the same time fucking asshole, why don't you just get over yourself and stay positive? Be thankful? Look at the enormous amount of strength all those people show you, every day, and their daily shitstorms are so much more intense. You should be ashamed of yourself for not handling this better.

I know I should be more positive. Sometimes I can be positive. Lately, been losing that fight. Probably some fear over the upcoming surgery, though I know many of those folks I mentioned above would envy our position, our course, to even HAVE surgery as an option. Again, there's that guilt, that shame, over what I consider to be a very un-evolved way of thinking today.

Why am I even writing this thing? I feel like shit, I'm in a shit place mentally...why did I bother? No idea really. I felt like I had to write something, in 'honor' of the anniversary date, but when it comes right down to it, I'm just in a bad mood. Hence, the maggot analogy.

So I'll wrap up, and figure out a way to apologize for this particularly weak-minded and negatively-charged entry when I feel more alive.



  1. Apologize .... never do that.This is your place,your feelings and your child.Period.I have been caught on the judgmental side you speak of,long ago.Not proud of it but when one lives in a dark place sometimes the person they are or were, gets lost along the way.IS days were by far my most bitter and ones I found myself least proud of my conduct.This will not be you forever.Changed forever?Yes but I feel absolutely certainly that you will find a place between the man you think you were then and the one you think you are today.Anniversaries like these are never forgotten.Wished they were but they are in a permanent rolodex in your brain.Surgery,yes a option some do not have.Lucky,I consider Zoey that but it doesn't mean that the prospect of that comes any easier.We were fortunate to have out consult at UCLA,2 days,in and out and before we walked out the door we had our answer ... surgery candidate.Feeling of fear and gratitude intertwined.I get it Ken.As I am sure most who come here and read your very real and very raw words do.Keep on keeping you and yours are doing all you can.Prayers and the good vibes come in abundance.

  2. You know...that's life. Someone will always have been at the struggle longer, or have it worse. I have my dark days too, today was one of them. And yet my gorgeous 3 year old went the whole day without a seizure, is having surgery next month, is cognitively doing better than I have any right to expect...but it doesn't mean it's not hard at times. Or depressing that this is the hand our kids have been dealt. I know the guilt over feeling bad, believe me, I've been there. But as a parent you want the best for your kid and you have to just let yourself feel what you're feeling if you ever hope to get past it.

    And the maggot picture? Ewww....

  3. Ditto to what Heather said. Just because Bennett has the option of surgery, does not make "brain surgery" any less terrifying. No, not all of us have that as an option right now, but there is no comparison when it's your child. Hell, sedation alone makes me a nervous wreck. Don't apologize for feeling what you feel.

  4. I am one of those people who have it better than most...I feel like shit when I can't handle what I have going on. But we each have our own story, and mine certainly hasn't been easy by any stretch of the word. I have talked to many other IS friends about this...Everyone has told me (not in so many words) that we each live in our own personal hell with IS. This isn't easy for anyone. What you have going on right now is awful, terrifying, and depressing. You have a right to express your feelings. I would imagine that the others who read this blog would agree. Try to let it have enough to worry about.


  5. Madison was 8 months...she was not reaching the typical milestones.. the FORMER pediatrican always told us she was fine..that each child moves at their own pace...she was growing in the 90th percentile!!and I quite frankly I threw the fucking book on Milestones OUT...when the pediatrican told me I had a 4 month 8 month old I was shattered..We had NO IDEA she was having seizures when she looked as if she was startling 10 months the IS diagnosis came.
    I had feelings of resentment!! if only hubby and I did not take that trip to Boston and get preggo!! I was compleatly devastaed....I read and read and read about IS.....RETARDED???Globaly Delayed?? ( I hate that one) OH NOT MY MADIE!! no no no no no!! We battled IS for over a year...I can tell you they DO go away...but it just depends if they become another type of seizure..which in Madies case was what happened...she is still very delayed. but Big Seizure free...and only time will tell..I HATE The medication game...I HATE it...we have alllll been there...IS is insanely hard to controll...
    you have such a cutie on your hands....just take it day by day..TRY not to think of the rd ahead...ONE day at a snuggle and kiss at a time...just love him...its better than any of those "boring normal kids" have! I ended up on lie...and I quit my job...and I put a few pounds on...being a mom to madie has humbled me. What is that barbaric thing they call happy hour???
    all for my madie love. NOW she starts her preschool soon and is the best big girl sitter there is!!
    Ok Im done rambling...:)
    When is the IS reunion??? We really all should meet!!!
    Cant beat the nest of Ant Larve we found in our yard!! GAG!

  6. Right there with you today. Some days are better than others. Tomorrow's another day. Lets see how it feels then.

  7. Hmmmm...I think it was you that once mentioned Survior's Guilt. SG's been my shadow since the beginning. I think it's natural. Normal. Keeps us grounded. And compassionate. It's not a bad thing to grapple with.

    All this stuff we're navigating (my sexy new word)'s shaping us. Into who we're supposed to be. Because someday...we'll be down the road. And our lives will have played out. And we'll have a better understanding of just what that looks like.

    But there will be another parent. Holding a broken baby. Their heart in a million pieces on the floor around them.

    And we'll have lived it. And be able to offer comfort...and hope...and courage. Because we survived...

    And it will make a little bit of sense. Some of the sense will wait...til' another understand.

    Anyway...that's what I tell myself. And it helps. And I have already seen Trevor (the VERY sad and the VERY not) effect others. Make people feel. And think outside themselves. And I've been able to speak with other families...and offer them the crumbs of comfort that I have to give...

    And it helps.

    And btw...your raw honesty just makes me adore you more. I love people that out the elephant in the room. ;)



  8. Ken, you never need to apologize for feeling the feelings that you do. Yes, some have it worse, but you know what, it doesn't make your situation any easier to deal with. Bennett still suffers from the seizures whether you are able to handle it better or not. You are human, it's ok to be weak sometimes, ESPECIALLY when it comes to your children.

    One day, soon I hope, you are going to be able to look back on these past 6 months with amazement and wonder how you were able to deal with all that life handed your family. And then, my friend, you are going to turn back around and face the future and give those that come after you hope that they too, can beat this terrible disease. Because, deep down Ken, you are a very strong man. You have to be, to put yourself out there as you have and expose your emotions for the world to read. And you know what, I admire you for that.

  9. Even in a bad mood, you wrote a good post. And thanks for the maggot lesson - very informative. Did Carter get to keep the toad (and isn't the 5 year old way of seeing things so much more ... peaceful (frog worms...makes them sound almost like pets)).
    Here's hoping you find a joy nugget.

  10. ps. And thanks jinxed me! Maggot central in our G today too! I really wish I hadn't let Toby sleep over at Grams' last night!

  11. I almost lost my spicy buffalo wings from Wendy's thanks to that picture!

    This disease sucks, no two ways about it... you will have down days and days that aren't so down. Never apologize for saying what you feel. It's better to express it than bottle it.

  12. Okay 2 things...

    Is it obvious that I have nervous energy to burn?

    And Jen...are the wings yum or what?


  13. Two days later of your post being made I just wanted to say that when I saw the maggot picture, I thought: "They just opened a new can of worms", luckily that was not the case.

    And give thanks for Carton not asking you: "Daddy can I lick the toad?" Innocence is bliss.

    If you don't get it, just google: "licking toads" LOL

  14. I don't really think i can add anything to what has already been said perfectly....BUT do not ever apoplogize for feeling what you feel! Yes, some of us have been in this hell for longer, but we all have different stories and yet we've all walked a mile in each other's shoes at one point or another. Some days I'm totally accepting of it and can deal. Other days (more recently) it has been like getting hit in the gut with the diagnosis all over again. You will have days that it is easier to get up and the maggots (EEEEWWWW by the way) won't be as noticeable. Until then, we are here to help "flick' them off of you!!


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