Tuesday, May 19, 2009

Bennett's Story Part 1: Ahead of His Time

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?


Bennett was scheduled to be born on December 3rd via a C-Section, though his technical 'Due Date' was actually December 12th. When you do C-Sections, you can do that apparently, schedule them a week before a technical 'Due Date'. And a C-Section was called for in this case because Jennifer, my wife, had a C-Section the first time around with Carter so the doctor suggested that a C-Section be performed this time around as well.

So the date was set, we were thinking ahead to that week, and I was even trying to figure out how I could possibly go to Baltimore that week to watch the Ravens play the unbeaten New England Patriots without totally seeming like the Ultimate Asshole Husband of the Universe. I never actually GOT the tickets, but they were dangled in front of me and I have to admit...I hesitated. I really did. Turned out to be a helluva game too.

None of that mattered, since Bennett decided that he wanted to show up a little earlier than planned.

On Friday night, November 9th, Jen went to Meijer and came home feeling very weak and expressed that she was having a ton of back pain. All night she just felt BAD. She kicked it to bed a little early. I was in the deepest of sleep around 2:30 in the morning when she woke me up and told me we needed to go to the hospital. She thought she might be in labor and she was having contractions.

We packed a bag, called Jen's parents (who came over to stay with Carter) and off we went to the hospital. We were seen very fast, and they gave her something to see if it would stop her labor since they thought it might be some kind of false labor. Whatever it was, it didn't work and we were told that this little guy would not wait...he's coming now. They decided to do a C-Section immediately.

It wasn't long after that Jen was whisked away to surgery, and I spent this birthing experience very much like I did the last one, waiting outside of the room having an attack.

Some support I was. But hey, PTSD and anxiety does that to a guy. At least I got her to the hospital.

So...on November 10, 2007 Bennett Leonidas Lilly was officially 'born'.

Bennett was born without any SERIOUS complications, despite his prematurity. Though something did occur that has, of late, made me wonder if we should not be asking some questions or at least taking a look at the records.

Apparently, as best as I can piece together, they were checking his blood sugar and noted it was low, and noted that his color was 'dusky'. Never heard the phrase 'He's turning blue!', no coding, nothing like that. But because he was having some trouble breathing on his own he was taken to the NICU and put on something called a CPAP. That stands for Continuous Positive Airway Pressure, and it is NOT an oxygen tube like you might think. It is a method of respiratory ventilation used primarily in the treatment of sleep apnea, for which it was first developed, but it is also commonly used for newborn infants who just need that 'extra push'.

So, the NICU is where he spent the first three weeks or so of his life. But he did really well there, progressed fast, and didn’t require the breathing assistance for any unusually long period of time. As far as we know, he did not have any oxygen deprivation to his brain. But like I said...knowing what we know NOW, it's worth looking into. He seemed totally fine to us after the first couple of days. Soon, he figured out the whole eating thing, and I'd say that he was fairly even-tempered for being in a plastic box for three weeks.

You wanna know something funny? Not funny ha-ha, but funny ironic? I remember holding it together very well, even though I saw him hooked up to all that shit. Oh sure, I was a little terrified and upset and I cried some but not a whole lot (not like now). But the thing is...I actually was doing very well with it emotionally.

Why? Because I basically decided NOT to face any of my feelings. I made the conscious choice to never actually confront any of my fears, and that meant not really confronting him. I have to be honest here, since honesty and being open is my thing...I did not go visit him every day, and when I did I did not linger around. There were many days I did not go at all.

I was, in fact, a terrible husband to Jennifer and an even worse Father.

Today? I'm shocked by that admission.

I'm also embarrassed by it.

It makes me sad to think that there was a time where I did not care enough about that boy to be there for him, did not care enough to be able to be strong enough to overcome the things I had to in order to be the Father he needed.

That fact is made even more intolerable to me in the re-telling because it had been less than a year since the death of my own deadbeat Dad, and I still hadn't gotten over my powerful anger over his lack of action or interest in my life (probably never will). Yet there I was, living in his shadow and, being my Father's son, ignoring my own son in his time of greatest need.

I justified it in my mind of course.

Oh, he doesn't really know who or what is around him, he's not that aware of where he is or his situation. Hell, he hasn't even opened his eyes and he wasn't even supposed to BE here yet.

But all of that is exactly what it smells like. Bullshit. I was a coward, and my son suffered because of it. End of story. It's a crime of the heart I have since forgiven myself for, but the residual guilt is something I will always carry with me.

Deservedly so, I might add.

Sometimes, we need to keep these reminders handy.

And I certainly can't and won't deny the little tickle in the back of my mind that often wonders if this condition that afflicts my son is somehow a lesson delivered unto me instead. Something punitive, something hurled in my general direction, a cosmic ass-kicking. That's crazy, I know.

But sometimes I think crazy thoughts.

I VIVIDLY remember the thoughts I had, though, when we were told we could begin preparations for taking Bennett home, and I remember how I felt while getting in the car with my wife and second son. I thought I had just had my Kobayashi Maru moment, I had 'cheated the outcome' and didn't HAVE to face any of my fears now, since the whole experience was over before it had really begun.

I remember turning to Jen at some point during the drive home and saying, “Well…at least everything is going to be all right now.”

And for a while? It really was.


  1. I think so many people will benefit from this story if they are suddenly finding themselves in our situations. It takes a lot of courage to be brutally honest and put it out there for everyone to read. I know I've "gone there" in terms of the guilt and possible fault, but too embarrassed to admit it out loud. I still "go there" when I wonder "why", because I can't fathom this just being a random "shit happens" life experience. I'm still waiting for my lesson to be learned so we can just get this over with and move on the way we were supposed to.

    So, thank you for sharing. It's not often that I come across such honest emotions...

    And, I've only been dealing with this for a year myself, so I'm no expert, but so far, I can honestly say that the first six months were the worst. I don't think it will ever stop hurting as long as our babies are seizing, but you somehow manage to find the strength to adapt and keep going.

  2. ditto on Holli.

    Plus...I think there is SO very little known about IS. The whys & whats & underlying causes. It's important for us...cause lord knows the professionals won't...to notice things. The little things. The passoverable things. Anyway...

    I'm glad you shared this...it's good for us. And you. And Bennett someday...


    my moderation word is expel? Exercisim anyone? *wink*

  3. You are one honest guy. I can't remember whose site it was on, but an IS mom shared something from the epilepsy.com website I think. This mom talked about moving on past the guilt. I found it to be a helpful reminder.

    Through Maddie's battle with cancer and now IS, there have been many times where I have wondered if somehow I am being punished for the things I have done wrong in my life. All I can say is that that type of thinking gets me nowhere and it sure as hell does not help get me through the day to day care of my incredibly precious daughter. I have chosen to think of guilt as a collosal waste of my time. And I cannot believe in a God that would punish my incredibly amazing and innocent child for my faults.

    Liz, Maddie's mama

  4. You have to stop being your own worst critic. The world is ready to pounce and do that every day. Give yourself a break. You're there and you care. You love your family. You love your kids. Let yourself be human, make mistakes and move on because you are a great person and you just don't know it.

  5. Holli:
    All of you that are over a year dealing with this is staggering to me...just staggering. But I imagine it would get a wee bit easier to manage after the first six months. I guess we all adapt at some point.

    Yeah, I think I decided to do a chronicle to also just have it here in case anyone new stumbles over here looking for info on something they experience with their kids.

    Yeah, the guilt thing for me is only a tickle, and its rarely a factor. Just sometimes, much more so early on in all of this. Less so now. And I agree with you, it is a waste of time to dwell there.

    I know...I am often a bit too self-deprecating. Old habits. Workin' on it though! :) And like I said in my earlier message to ya, there is actually a growth period I went through since that time when he was born and I address it in a positive way in a future section of his history.

  6. Wow...thanks for being so completely honest and putting yourself out there. I still have issues dealing with the guilt. Not as much as when this all started but like you said it is just a tickle. It is hard not to let the "what ifs" play through my mind sometimes.

    Like Holli said...it does get easier. It never hurts as much as the beginning but for me it comes in waves. Good periods and bad periods.

    I think Dr. Chugani will give you a lot of hope. I know he has for me...even in the beginning when Sophie was only 11 months old.


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