Thursday, May 21, 2009

Bennett's Story Part 3: Shit? Meet the Fan

<It was suggested to me recently that I try to organize as much of Bennett's story as I can, try to put the last 3 months into some kind of perspective. I am going to post this here now and add to it as there is time. I will link up on the side of the blog main page so that people can access it who want to and I will get it finished as quickly as I can for anyone needing or wanting to see the chronology of Bennett's condition.

Bennett's Story Part 1: Ahead of His Time

Bennett's Story Part 2: The Calm Before

Bennett's Story Part 3: Shit? Meet the Fan

Bennett's Story Part 4: The Truth is IN There

Bennett's Story Part 5: Acthar the Terrible

Bennett's Story Part 6: Road to Nowhere?


On February 24, 2009, Bennett had an appointment with his regular pediatrician, a very charming, very warm Doctor that Jen and I both like a lot. As expected, Bennett did not have any of the ‘body hiccup’ episodes in her office, but we had been fortunate enough to have a few of the episodes on digital video disc. Jen took the mini DVD player and the discs with her to show the doctor.

This should give you some clue as to how non-serious we were still thinking this was…I didn’t even go to the appointment with Jen, stayed home and worked instead of going in. This wasn’t even related to the avoidance issues I described earlier in Bennett’s life, this was practicality of two parents and two different kids, depending on how long the appointment went I might need to pick Carter up from Day Care, so I stayed back and worked while she went to the Doc.

Dr. Pediatrician watches the digital video, and is baffled by it. Had never seen anything like it before in her career. Come to find out, that’s not uncommon, because what Bennett has is not very common at all. To be on the safe side, she schedules an EEG at a nearby Nationwide Children’s Hospital Closer-to-Home Center for as soon as she could get an appointment, which was March 5, over a week away.

Again, at the time, we weren’t all that freaked. We did not know yet what was going on, it wasn’t happening every single day, didn’t seem to be hurting him, and we both went into that EEG thinking they wouldn’t find anything, the whole experience would pass, and that would be the end of it.

On March 5, 2009, as scheduled, Bennett gets his first EEG, and it is not a pleasant experience at all. They hook him up and he cries a lot while they are gluing electrodes on to his head. I cry more than he does though, as it is extremely painful to watch him struggle. BUT...I do not leave the room. I stay. Looks like Daddy might have grown up a little too in the last fifteen months. More on that later.

After the leads are finally on he settles down a little and the EEG begins. During the course of the EEG, in fact very early into it, the EEG technician excuses herself and makes a phone call. Something is up, but no one will tell us what. She calls a Neurologist to look at the EEG information immediately. Just before the EEG was supposed to end, Bennett actually has an episode of his ‘body stutters’, which we were actually HAPPY about (that is very difficult to explain) just so that it could possibly provide more information. Happy for the extra info it might provide, not happy at all that he had to stay plugged in like Neo and Trinity for another 15 minutes or so.

There is a lot of activity, calls made, technician coming and going.

The technician, while removing the leads, clearly knows something but will not tell us what, and tells us that a Neurologist will be calling us in a couple of days to schedule some kind of follow-up appointment.

I was actually VERY cool with that. I mean…if it is gonna be a few days until someone gets back to us then how bad can it REALLY be? But somehow I heard the term Infantile Spasms that day before we left the EEG room. I do not know how, I can’t actually remember who said it, but someone did. Not as an official diagnosis, but somehow the words just got said by someone and I heard the words. And just so you know I wasn’t cracking up, Jennifer, after we left, confirmed hearing it too.

Jen and I took Bennett home and the first thing we did was type in Infantile Spasms on the net in a google search and started visiting websites.

My wife, well…what can I say? She has always been a helluva lot stronger than me, in so many ways. In fact, I often tease her about how rarely she cries or about her reservations about expressing herself. Of course she can then tease me over how I cry over movies and songs and stupid shit. That’s the dynamic of our relationship…I wear my heart on my sleeve, she keeps everything tucked away, very neatly. She has never, and will never, understand why I write this blog. She rarely, if EVER, reads it. It just isn’t her thing.

The truth is, we both are too far extreme in the way we handle emotional things. Reality, the right place to be, is somewhere in the middle, and that is probably why things work for us…these aspects of our personality balance out somehow.

Though I should tell you, that when she does lose that cool exterior, hoo-boy does she pop…but her being the daughter of her Dad and her Mom and how she has both their characteristics is a subject for another blog, one where I will need to be prepared to get my ass handed to me after I hit the ‘PUBLISH’ button, because I know THAT is a blog she would read.

So there we were, at home, Bennett asleep in his crib, looking at websites that give information regarding Infantile Spasms.

Of all of the moments in all of this entire experience, this was THE moment where I saw something break inside my wife. This person who I have always seen as a pillar of strength, of emotional power and reserve, right before my very eyes, came apart in a way I had never seen before. There is only one kind of thing that can cause the kind of pain she was experiencing, and it is a pain that ONLY a parent can even understand and appreciate. But her entire world was rocked that day, as was mine, but for a reason I really cannot explain I held it together.

Maybe because I knew, at least for the next few hours, I would have to assume her role. I would have to be the strong one for awhile. This was her time to let a devastating emotional wave crush her into the surf, and I needed to be there and hold her head and keep her from drowning.

Those were truly frightening minutes, reading those websites, but I kept telling her that we did not know for sure what it was yet, we had to maintain some hope, we have to stay focused, we have to stay strong. I tried to keep her steered in the direction of keeping our emotions in check until we knew exactly what we were dealing with.

Then the phone rings, right in the middle of trying to even research the issue. We has only been home MAYBE thirty minutes, if that.

It is someone representing the Neurologist who reviewed the EEG. They asked us to pack a bag and bring Bennett to the hospital for admission immediately. They wanted to have him there in a room so that some tests could be done. They confirmed the possible diagnosis on the phone. They believed that he had Infantile Spasms and it was something that had to be tackled ASAP.

Devastating diagnosis? Meet the Lilly family. Lilly family? Meet the devastating diagnosis.



Our heads were spinning for a few minutes as the reality of what we just heard sank in. But remember, ‘Infantile Spasms’ was defined, at that moment in time for the two of us, with WAY too little information, and all the information we had been able to absorb in 30 minutes was all bad. There simply had been no time to read anything but the clinical stuff, the stuff that offers oodles of stats and funky clinical terms, but VERY little hope. If any at all.

If you want to read some of that clinical stuff, look to the right of this page. There are two links that I have permanently affixed there. One is a short answer, the other is quite lengthy. They are harsh. They are factual. But it's a good exercise to see an overview of the condition, before you would start your own search if that was what you fancied. But remember this...the best source of info is actual people. People like me or people like those in many of the blogs I follow, also listed at right down the page as you scroll.

We didn't have time for that of course, we had time maybe read part of the long IS answer that I linked to, maybe a few other bleak things before that call came in.

Somehow, and I really, honestly, cannot remember how, we packed a bag and I managed to drive us to the hospital downtown. Parking was surprisingly easy, admission went very fast, and a couple of hours later, there we sat, in a hospital room, in a state of shock, with Bennett, wondering what the hell was going to happen next.


  1. Ken...I hate that it sounds morbid...but you've beautifully captured the emotions that we raged through (although each journey to the diagnosis is unique) during those first few days. And following. When our world went from normal to shattered. Thank you...


    ps. my modify-er word is "sispir"? Hmmmmm...sounds like Bristel saying "sister" with her new snaggle-tooth lisp... Sign?! *smile*

  2. I have to agree with Danielle. My eyes welled up with tears reading this one. So eloquently said.

  3. Danielle:
    Not morbid at all. I actually appreciate the compliment. Had I time I would even rewrite a lot of it. That's the thing about Blogging. You gotta go first draft unless it is your job, not a lot of time to make it REALLY good as a piece of writing. But thanks.


  4. I felt the same feelings while reading your post as I've felt so many times over the years with our girls and their different diagnoses. Impending doom. Racing heart. A certain amount of happiness that Hopper and Scooter both hurt themselves in others' care, and those others happened to be professionals likely to have reported us to CPS, should they have ever witnessed the bruises outside their school and hospital settings.

    You captured me with your writing. Little Bennett has captured my heart. :)

    My word verification happens to be 'endoldl'. As a parent of 2 special needs girls, I'm definitely going to endoldl!


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