To say that I was in a state of dread in regards to the 3-year anniversary of Bennett's first seizure event, which was yesterday, would be an understatement of massive proportions. It has in many ways been consuming me, more than I would care to admit, to myself or to anyone else.
My friend Mark and I were discussing it a couple of days ago, and while I was saying that I should not be as hung up on it as I was because it is 'only a date, only a number', in his opinion that was not really true. It is and always will be in my head, he reminded me, the SYMBOL of when life changed for all of us, a point from which there has been no turning back.
Could be any of the dates from that first six months really.
Could be the date of actually hearing the words Infantile Spasms, or the date of actually knowing what they really MEANT, since I had never heard them before. Could be the date of the failure of Medicine 1. Or Medicine 2. Or 3, 4 or 5. Could be the first time we heard the news he that Bennett had a brain tumor. Could be the date of his Temporal Lobectomy.
I get chills whenever I see anyone in surgical recovery. Whether it is on TV or in real life. Nothing really prepares you for seeing your 19 month old kid lying on a bed, pale-skinned and barely moving.
Then again...there is no manual for ANY of these things, is there?
There is no guide for how to deal with all of the things that happen to you along the way when you watch your kid have seizures for months, when you realize that maybe, just maybe, you could have stopped it in the first couple of weeks...if only the hospital who had seen him first had shown his MRI to the right people.
His seizures had a focal point all along, a brain tumor, and he didn't HAVE to go through March, April, May, June, July and August having seizures 24/7. He didn't HAVE to have a growth hormone injected into him that slashed around TWO-HUNDRED GRAND off of his lifetime insurance deductible and did nothing but probably make his tumor grow bigger and very likely resulted in more of his brain being taken out.
Yeah, there is no manual...except the ones provided by many of you. Many of your blogs...those are the guides, they've been mine, through these past three years, as I have tried to keep our ship, and sometimes my head, above water after finding myself in a world I never even knew existed.
My PTSD and my anxiety, my depression...all of it has been in overdrive for a couple of months now. My posting has been scattered and in disarray. At best.
Essentially due to the fact that Bennett has been having some severe behavioral issues. One of the things, at least for me, that I struggle with is what he does to me psychologically and, thus, physiologically.
I've mentioned here before the fact that I got knocked around a bit by my step-father when I was a kid. He was a guy who was mentally ill, and very good at what he did, not only hiding his deviant behavior from my Mom but also placing me into a position emotionally to where I was so afraid that I had no choice but to hide it from her too.
And yet, he also showed kindness and compassion to me oddly enough. Though maybe not so oddly if you give it some thought. See, I was extremely vulnerable when, at the age of 5, my biological father walked out the door, rapidly lost interest and essentially never looked back.
The Step used this to his advantage, as part of his method of control over me. But it also made it very difficult for me at times because emotional states would change very rapidly with him, without warning. It was jarring, to say the least, and one never knew what might set off his explosive personality.
I've struggled with a LOT of this shit through my life, believe me. Struggled with relationships, blah, blah, blah...I was very late getting married, I have explained all of that before. But I have also come a long, LONG way.
Sadly though, my life seems to have done a sort of perfect circle. It is some sort of Bizarro Bookend or something and it has me reeling a little. In this situation though, it is the child who is physically lashing out at the adult. Pretty wild, huh?
I don't react well to violence, which is what I am trying to tell you. Especially from those people who are close to me. So when Bennett, because of his disability, hits me or bites me, I have severe physical reactions to it. My heart races, I sometimes get dizzy and my panic attacks can get overwhelming or out of control. It is astounding how quickly the whole cycle can take over.
Or something else occurs, where around him I can find myself just shutting off. That's another defense strategy my mind used to do and it annoys the shit out of me. My emotions just turn off completely, and I feel nothing. No joy, no anger, nothing, just empty space. I become almost robotic, and that is no way to exist. That is NOT the man I want to be, not the father I want to be, and certainly not any kind of example I want to set for Carter.
So you've got Bennett going through...whatever it is he has been going through, and we can't get him seen by anyone (until my own psychiatrist agreed to step in and see him and that is happening on March 7th), and my own dread building too about this anniversary date. It's like someone shaking up a really old, skunked beer can and then poking it with a sharp metal pick.
Recipe for a stink bomb. So something had to be done, yeah?
My psychiatrist did, as a precautionary, up my dosage of Topamax, which has now been upped for around 8 days and I am starting to level off, which is good.
I do feel better.
But a lot of that is because of Bennett, to be honest with you.
For reasons unknown (well, PARTIALLY unknown), this weekend Bennett decided to be the sweetest, cutest, coolest kid in the known universe. With the exception of a little grouchitude on Saturday morning we had to work through, I cannot remember a time where we had a more pleasant time with him.
Now, everything, and I do mean EVERYTHING, has a price. And the cost of this cute-a-palooza? I had to essentially keep Carter and Bennett separated the entire weekend. Carter stayed upstairs in my office area watching TV and playing X-Box, and Bennett stayed downstairs, playing with stuff and hanging out in that area. Occasionally they mixed, but always supervised.
That way the two of them never could tweak each other, because very often? That causes a lot of the tension. I've come to learn that probably 30% of it is what you might consider what would normally happen between a 7-year old boy and a 4-year old boy in a house, but the 4-year old boy can't really use expressive language or process things effectively and so he lashes out, and then things explode from there.
Happens quite a bit between them, and I can't figure out how to get Carter on board to changing how he 'reacts' to Bennett when Bennett loses control. I can't stop him from shouting and what not and it only exacerbates things. Not sure how to fix that one.
Still...I count my blessings when I can, I really do. Yes, it has been three years, and yes there have been a lot of things that have gone wrong. There have been a lot of things that have gone right, too.
I remember those things and I appreciate them, I promise you that. If I feel overwhelmed sometimes it is usually because of things that stand before me that stack up that I am having trouble solving on my own, and I'm simply afraid that I won't be able to handle it all.
What I have to do, what I'm trying to do, is take things a step at a time. Even if those steps are small, seemingly insignificant steps, I try to make sure I take some as often as I can.
You know, now that I think about it, there was GOT to be some kind of Life Organizing Software out there on the open market that someone has tried. Anyone got any suggestions? This yellow notepad I have here next to my laptop (yes, my desktop is still untrustworthy) is OK for the short-term, but I would love to get a more high-tech option for organizing my priority list as far as the things I need to do to get some stuff in order in Casa de Lilly.
Meantime, if I'm feeling blah, I will just try to spend as much time as I can with Bennett and his trampoline.
Cause there isn't much in this world that is cooler than watching him have that much fun. Of course, he is going to give me and my over 500 Triglyceride level a heart attack before I have had a chance to get it down to a more manageable number.
Oh yeah, did I mention I was going to drop dead any minute? :)