Saturday, June 20, 2009

Some Days Are Better Than Others

Now this is exactly why I said yesterday that it was important to heed the words of Winston Wolf and keep in mind the lessons of 'W' when it comes to declaring victory in The Infantile Spasms War. Yeah celebrate your milestones, but keep your goddamn shields up because at some point you don't know when some Klingon bastard is going to swoop in and put a proton torpedo up your ass.

Over 250 seizures yesterday. Wrap your head around that one. Go ahead, take a minute. His seizure count all week? In double digits. Hell one day he had only ONE cluster and maybe 45 seizures total in that cluster, and they were pretty fucking mild as actual seizures (spasms) go. But yesterday?


Ladies and gentleman, that is a NEW Bennett Lilly RECORD! WOOHOO!!!!!!!!

Yeah...I'm just blowing off some steam, don't mind me. There are days I am grateful and do feel fortunate and hopeful and days where I just want to put my fist through a motherfucking wall.

Some days are dry, some days are leaky.
Some days come clean, other days are sneaky.
Some days take less, but most days take more.
Some slip through your fingers and onto the floor.

Some days you're quick, but most days you're speedy.
Some days you use more force than is necessary.
Some days just drop in on us.
Some days are better than others.

Some days.... it all adds up.
And what you got is enough.
Some days are better than others.

Some days are slippy, other days sloppy.
Some days you can't stand the sight of a puppy.
Your skin is white but you think you're a brother.
Some days are better than others.

Some days you wake up with her complaining.
Some sunny days you wish it was raining.
Some days are sulky some days have a grin.
Some days have bouncers and won't let you in.

Some days you hear a voice.
Taking you to another place.
Some days are better than others.

Some days are honest some days are not.
Some days you're thankful for what you've got.
Some days you wake up in the army.
And some days... it's the enemy.

Some days you work, most days you're lazy.
Some days you feel like a bit of a baby.
Lookin' for Jesus and His mother.
Some days are better than others.

Some days... you feel ahead.
You're making sense of what she said.
Some days are better than others.

Some days you hear a voice.
Taking you to another place.
Some days are better than others.



  1. Ken, I've been away from the computer and just read both yesterdays and todays post. 250 is just harsh! Poor boy. I am happy you've had a little bit more reaction to your interaction lately.

    I don't mind your long posts at all, by the way.

  2. As for yesterday and most likely today, I know you feel nowhere near lucky.I am sorry for that and I am seriously sad for your little man.Hoping and praying for better days.

    *My all time favorite band ... ever.

  3. And somedays you know that you're not alone...



  4. Shit...I honestly don't know what to say. Words don't do justice to what I want to convey when I see my friends going through this. I guess just know you are not alone, and there are people out there that get how incredibly heartbreaking this is. I haven't been where you are at in a while...but I was at one time. (KC has seizures now, but not like what you guys are going through) I'm wishing really hard for you that Bennett's miracle comes along sooner than later!


  5. It blows, just really blows is all i got. just know that you are not alone. we unfortunately all know too well what you are going through. i wouldn't wish this torture on my worst enemy. [[hugs]]

    give bennett lots of squishy hugs from us...

  6. Hi. I'm very sorry Bennett had such a rough time of it. Makes me want to cry.

    Can you talk to the neurologist about it? Its possible that it was not the Vigabatrin that was helping but Vigabatrin combined with the low doses of the other meds. Vigabatrin and Topomax are a well respected combo.

    Perhaps even email Chugani - he might have an interesting perspective on when to intervene if a cluster is going on for a long time.

    Again. I am heartbroken for Bennett. No-one should have to go through such a violent onslaught least of all a child. You, Jen and Carter must be going through the mill of emotions.

  7. For what it's worth, I've also heard that vig and topomax are usually a good combo. We didn't try it because topomax and zonegran are very similar (and Austin was on zonegran the same time as vig)...BUT, he had very very few clusters during that time. As soon as we started weaning vig, back came clusters. BUt the drops were unbearable and totally not worth it...we couldn't stop them and the vig tripled the intensity.

    Like you said though, some days are better than others...hoping today is one of the better ones!

  8. The disappointment really, really, really sucks...That word, disappointment," doesn't do the feeling justice, though, does it?....It is a HORRIBLE, SINKING, SICK feeling...

    I understand...Colby had improved a little with his increase last week....Yesterday, he dropped to the floor over and over and over...And again today...So now what?

    So hard to watch...So hard to accept....

    I am just so sorry...

    And I wish SO badly I could say make a difference!



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