Monday, February 21, 2011

Bennett Gets a Historical Shout-Out

Recently I was asked by a new addition to the Special Needs Brethren & Sistren, Summer Robinson, someone who was at least new to MY line of sight, if she could post one of Bennett's Infantile Spasms videos that I keep up on my residentlilly YouTube Channel on her blog during an Awareness Contest that she was running.

She also wanted permission to take some text from Blogzilly and use it for an article about Bennett's Journey.

Her daughter Abby, sadly, suffers not only from Infantile Spasms but many other things, her full story is here, and it is, like all of them, as heartbreaking as you'd expect.

Of course I agreed to her requests, not just because of her story and her daughter, but you know how much awe, respect and love I have for anyone who serves in the military, as both she and her husband do. Anyway, even though this is from a while back, I forgot to post about it because I was jammed up about something personal and forgot to mention it, but her post about Bennett was on February 5th.

Thanks Summer, for featuring Bennett, and of course I hope nothing but the best for you and your family. Not sure if you read these pages much, but I had been skimming through some of your blog pages and was wondering how Emma was doing overall?

Anyway, wanted to make sure I introduced Summer and her family, and made note of it. I'd have done it sooner, but things have been a bit weird of late.

You know, that photograph I selected at the very top, for some reason, has my mood this Monday morning starting the week off very foul. It pisses me off. Why?

The term 'Infantile Spasms' still infuriates me.

Always has.

Always will.

It's too FUCKING soft. If words were people, Infantile Spasms would look like this.

A lot of people have looked at the picture at the top of the blog of Bennett and commented on how cute he looked in it, what an interesting shot it was of his and his hands and so on and so forth. What they never knew was that I was shooting his seizure event, during the six months or so he was having his Infantile Spasms.

But because often the motions are so different they are often not given enough substance. Infantile Spasms are NOT not the tonic-clonic seizure types you see in movies (what they used to call Grand Mal seizures) where someone starts convulsing and some dipshit very incorrectly tells some other dipshit to 'Hey put something in his mouth so he doesn't swallow his tongue!'.

The Infantile Spasms seizures are not like that, nor is the brainwave activity that accompanies it 24/7 (when the actual 'clusters' of spasmodic jerks that IS is known are not occurring) that wreaks absolute havoc on a child's developing brain. And yet the words are so...NON-threatening...many people, many doctor's and yes, many parents...this one in particular, do not or did not take them as seriously as they should.

That needs to change.

I don't know how.

I just know that it needs to.

Welcome to Monday. :P

I had not intended for this post to turn South...I walked away for a few minutes (in the old days this would have been cigarette time, but I have been smoke-free for over two years) to try to figure out why a blog that started as a Thank You ended up with me getting so FREAKING angry.

I figured it out.

I hate the fact that I am writing about a new child who has entered this world. She isn't new as far as Summer is concerned...this has been happening a while for them. But Abby is a new entry into the World of Disability as I Know It. And it just upsets me. It's one of the reasons I don't spend as much time at the message boards as I used to.

I make myself available to anybody...and I do mean ANYBODY, as a resource, a shoulder, a pal in this fight, whether their child has an ASD, IS, CP, DS, Leukemia, Mito, Fragile X and on, and on, and on. But I go 'out there' to boards and such less because I tend to see new people pop up on a more regular basis, and I need to be ready for it when I do. Because when I do, and this is pretty much a guarantee every time, I see yet another innocent soul consumed by some...some THING.

Well, let's just say it takes my journey towards trying to re-connect the wiring on my transmitter to the G-Man that much less important to me. I just care less about it, because you know what? Seeing all this crap makes me think he doesn't really give a shit either.

That's why this post took such a wrong turn. It's linked in to an internal struggle I've been having for a very, very long time. I ache for these kids. I ache for their parents. And I find it very difficult to have a relationship with a being who has the power to fix it, and does nothing.



  1. Watched a couple of the seizure videos to educate/torture myself. Heartrending. Blech.

  2. I'm with you -- particularly in anger -- even sixteen years AFTER my daughter was diagnosed with infantile spasms.

    Not sure what to call them -- but words and what they signify are so far apart that it's near absurd. (mistress should be home-wrecker; collateral damage should be innocent lives murdered; infantile spasms should be devastating, soul-destroying type epilepsy, etc.)

  3. Zoey's neurologist,Dr,Shields,at UCLA,once told me that he was approached by a fellow neurologist at a conference,who told him that she was having a difficult time using "catastrophic epilepsy" along side Infantile Spasms,as he often pairs the two.He told her he would get back to her with any other words he thought were better served.He was back to her in no less than 10 minutes and he said,"Nope.Catastrophic epilepsy it is.

    And you and I and Elizabeth and all the other parents, that were dropped into this world can attest to truth in the pairing.

    I recently recounted, the moment I was told what Zoey's EEG looked like and what it revealed ... I was in the laundry room,phone in hand and I did this slide from stand, down the wall,basically crumpled to the floor,move.Devastated and I continue to be devastated each and every time I hear that another child and family is entering this world.I literally get sick to my stomach when I watch the videos and my heart hurts for every child that has to be assaulted with it.Pisses me off.Always will.

    Zoey's journey with and through IS was short compared to so many and not a day goes by that I do not acknowledge that.She has been lucky.Even when I can,with a little chuckle,know that she falls into 4 of the 7 categories you listed.Gotta laugh.Or else I might just cry.

  4. faith gets to such a nice warm fuzzy place....and then I look outside of my own nice warm fuzzy life...and I wrestle with "the question" again. I'm glad I don't have a pat answer....most of them sound awfully trite in the face of so much "stuff" down here.

  5. I love this post. As being new to IS by less than a week, I think the name is totally ridiculous! It sounds like a leg cramp or something...

    But as for names, it is so funny b/c we spent my whole pregnancy debating between the name 'Deacon' and 'Bennett' and finally decided that he felt like a Deacon.

    Thank you for posting on my blog, and allowing yourself to be a resource to us newbies.

  6. Hey, congrats on being smoke free for 2 years....
    As for Bennett and his saga, it just breaks my heart...I wish I could help, I really do. I think it is great how much attention you have given the disease though, and hopefully the good that will come of all of this horrible suffering is that a cure will be found. I know, poor comfort.

  7. I agree with you - Infantile Spasms is such a pansy word for something that can be SO devastating. My daughter wasn't diagnosed with IS, although we are in the process of getting her EEG's reviewed by a new epileptologist to see if they were there. She has LGS now though, and like you, I love/hate finding new parents of similar kids. It's always good to meet someone you can relate to and understand. But it sucks ass that someone else is experiencing this shitty thing.

  8. Claire:
    Yeah, and at least we are in the 'lucky' camp in that he is no longer having them. So many, SO many kids still are. Even post-surgery.

    You get no argument from me here.

    Zoey's Mom:
    I find that interesting. Why would a neurologist be so uncomfortable classifying it or using that phrase alongside it? That strikes me as very, very strange? I would love to talk to that person and ask her why...what was her reasoning?

    The fact that Zoey is 4 of the 7 I happened to write down? I'm really sorry for stinging you like that. I know that you know that I know that it wasn't intentional...but still, no one likes to know that they did it.

    What the hell did I just say? :)

    Dora's Daddy:
    Update your blog, fool. I've told you, again and again and again throughout the course of our entire lives, since we were what, 12 or 13 when we met? You have a very unique gift of ministry. For whatever reason you have an ability to sift through a lot of garbage and channel some of the messages in the Bible that are important when people need them the most. You don't have to have all the answers. Nobody does. Well, nobody here does. So, rather than kick yourself in the face for not having all the answers, which you will never have, how about you do what you have always done so well, and explore some questions that you DO have some thoughts about the answers to, or even opinions about? There is no right or wrong, there is only what you believe.

    The Scott Family:
    Welcome, though I wish I didn't HAVE to say welcome to you, obviously. I'd rather be welcoming you to a blog about sports or toys or games or TV shows (well, this does have some of ALL of that, but you know what I mean) than Infantile Spasms.

    I like Deacon. Cool name.

    OMG. Now this is a pleasant surprise. Always is. How've you been? I saw that photo of you on FB in the white labcoat, looking all veterinariany...VERY sharp. Makes me want to have a dog again. :)

    Yeah, agreed. I thought with LGS that IS had to be a pre-cursor? Unless I totally misunderstood all the research I did back in the day. Getting the older EEG's re-read isn't a bad idea at all though. Not at all.


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