Monday, August 29, 2016
I was going to title this writing something about the processing of a turning point. Assuming, of course, that what I am about to describe actually is such a thing, and not just another example from a long list of head-jammed-in-my-butthole moments that decorate the landscape of my existence over the past several months.
How does one begin to even talk about all that time spent away? If ever I was plagued by self-doubt, fear, uncertainty...that time has been defined by my silence here. I don't know how to dig out of this hole I find myself in...uh, ew... no pun intended...but as a person who likes to write, as a father, family man, human race affiliate...I need to. I'm so checked out of everything. From everyone.
There are many things that require explanation, backstory. You know, TMI. I'm good at that if nothing else.
The only reason I don't dive in right now is because I want to try for once to get to the point and be done. The rest, I hope, sorts itself out in my head later as I go along. If I decide to go along. With this thing I mean.
Oh yeah...the point.
I completely, totally and utterly forgot Bennett's surgical anniversary on August 27th.
Driving this point home a little for anyone unfamiliar...in 2009 my son Bennett, at 21 months or so of age, had a big chunk of his brain gouged out to remove a Stage II Oligoastrocytoma. That's a tumor to all us lay-people. That year (and every year since) I've had an anxiety build-up leading towards the 27th, and the day itself has always been difficult for me. Defined by emotions uncontrolled. This year, everything was completely forgotten.
The only reason I remembered at all was because at the request of a good friend I've been checking in on Facebook a little lately and I saw one of those "Memories" flashbacky things they do, which was a link to a post I wrote here a year or two ago about Bennett's surgery.
After the shock wore off I found myself in an unforgiving circle of thought, wondering why I forgot. I am trying to figure it out still, especially since it isn't like he has moved on from being a severely disabled person. It isn't like our family isn't a shattered, awful mess because of what happened to him.
Like I said up top...I'm processing...but I don't think that this is necessarily a bad thing or a good thing
In fact, it might just be a thing. But it might be just the thing I've been looking to hang my hat on, in a psychological, philosophical and spiritual sense, for a while.
I'll have to let you know.
Wednesday, January 20, 2016
"I know we've been struggling with staying positive in the face of how difficult things have been getting with Bennett's aggression." I said to her. "I was out and thought, I don't know...it might be cheesy but maybe we could all use a reminder."
"Where'd you get 'em?", she asked as I started unwrapping from the newspaper.
As I lay them out in a row I asked if she could tell me which one was for each of us.
"Let's see...Laugh is for Carter. Believe is definitely for you. Cherish is for me."
"I'm just that good!"
She walked triumphantly back into the other room, as if she had just won the Pick 4, past the window covering I'd picked up for her car. One that you can put on your windshield that keeps you from having to scrape snow and ice and shit off in the morning.
She didn't thank me for that one either.
I felt a heaviness in my chest...that same one I feel every day. Multiple times a day. That same one I have felt for years. Looking down at the cup I clutched the handle and stared at the word 'BELIEVE'. A small part of me wished the cup would break in my hands, shredding my skin and sending me to the hospital for a few days.
I don't know what I believe anymore. I only know what I know from moment to moment. And at that moment all I knew is that I was determined that Bennett would not have the night like he had the night before. Tonight he would stay calm, he would be happy, and if not happy at least content, and he would fall asleep before ten, not at 2AM.
And that is exactly what happened. When the trouble started, I asked Jennifer to go to her room and Carter to go to his and stay there. Within 2 minutes Bennett and I were having a great time and within thirty he was asleep. It wasn't rocket science. Not at all. I just can't explain to you why I am not able to facilitate this all the time. It's complicated.
I would be lying to you if I told you I was happy. I'm not. My youngest son is disabled to the extreme and we are pulling him off the one medication that controlled some of his most horrifically violent behavior. My oldest is angry, afraid and isolated. My marriage is a wreck. My family's ability to interact with each other is fractured. My career is a nonexistent joke. My parenting skills are laughable my social skills eroded to the point of almost being unusable. And I'm certainly no saint. I've screwed up in my life far more than I've succeeded.
But occasionally...every once in a while...I can steer this ship away from the worst part of the storm...occasionally I can do some good.
Tonight I did. And I'm proud of it.
“You were standing in the wake of devastation
And you were waiting on the edge of the unknown
And with the cataclysm raining down
Insides crying "Save me now"
You were there, impossibly alone”
Sunday, January 10, 2016
Holy crap...this one got away from me. I started writing, it was ridiculously long. Even by my standards. I started a basic recap after we got back from Cleveland. It morphed into Mr. Lilly's Opus.
Eff it. Gutted the bitch. Maybe I'll strip mine kibbles and bits to use somewhere else. Or not.
Sometimes the voices in my head are too reasonable. Boring.
Bennett's visit to Cleveland Clinic went as I thought it would, with one or two exceptions.
The first was my overall impression of his new Neurologist. Dr. New Kid was pretty good, but was nowhere near the blown off my rocker experience I had with Dr. Lachhwani. But, he is "Bye-Bye in Dubei" for two years, so this is what it is. Gotta make it work with New Kid.
The second exception was that I was not expecting definitive. While I didn't get much of it, Dr. NK did think Bennett had some Dystonia in his foot. Definitively.
The doc had rubbed a finger up Bennett's right foot and showed me how one toe was pointing weird and yeah, I had never noticed it before.
Going in to the appointment here is what I believed. My main theory is that Bennett has been taking Risperdal too long, and the effect of this powerful anti-psychotic medication is causing the muscle tension in his shoulders and awkward movements in his arms. So we could be dealing with Dystonia, Dyskenisia or both. Because of Bennett's brain trauma, things get complicated.
In regards to Dystonia. From WebMD:
Dystonia is a movement disorder in which a person's muscles contract uncontrollably. The contraction causes the affected body part to twist involuntarily, resulting in repetitive movements or abnormal postures. Dystonia can affect one muscle, a muscle group, or the entire body.
Brain trauma can be a cause. Stress can worsen the symptoms, and of course anti-psychotics can be a big deal in this. Why the cut/paste summary? BECAUSE...
I pulled this from Michael J. Fox's website. I liked the simplicity of the description:
Dyskinesia is a difficulty or distortion in performing voluntary movements...it can...result from prolonged use of certain antipsychotics. Dyskinetic movements look like smooth tics — sometimes like an uncoordinated dance.
If you don't follow my Instagram or Facebook you did not see this video I posted which shows the movements much better than a photograph really can. I don't know if a Blogger video will load...I may have to revise this, but I will give it a go here:
On Fox's site it also says this:
Unfortunately, today there is no good solution to actively control dyskinesia...Dyskinesia can worsen under stress (especially psychological stress), so reducing environmental stressors is important.
The movements for Bennett are worse later in the day. They are MUCH worse in environments like the above, a party or get together, where he is clearly experiencing stress. For example. Right now? As I type this on my tablet? It is 2:11 PM, he slept super late, he is watching his iPad and it is just he and I in the living room. No movements. Very little stress. There is some flexing in the right hand. I caught just a bit in a photo while he was having a snack.
So which one? Dystonia or Dyskenisia? Does it matter? I don't know. I don't know enough about it to know. Hence the FEAR and ANXIETY resulting in EXTRA DEPRESSION. But my choice here was just to show how similar they seem. To the lay person. Or to those of you who GET laid.
So what's the current plan?
It has to be process of elimination. We go back for a 2-day in hospital EEG. That's this coming week actually. I suspect it will show no seizures at all. But we have to be sure.
We have to wean Bennett off Risperdal. That's happening. With luck, if he has any coming to him, he can kill all of this by just getting off of this drug. A year or two back there was a major medication fuck up with Risperdal and a more...direct form of it called Invega. He developed a Tardive Dyskenisia that scared me shitless.
Why go back on the Risperdal at that time after seeing those symptoms?
There was no alternative. No alternative that would help Bennett during the worst of times. Times I will likely never share. The videos I mean. For one I don't have that much because when I would try to shoot the worst of his episodes I couldn't for long because I would have to intervene. I'm talking horrifying moments like him trying to throw himself down the stairs, slamming the door on himself, banging his head into the wall...not to mention the ways he would attack everyone else.
It was like Banner and the Hulk, but I'm talking back when the Hulk was an uncontrollable thing of rage...not the somewhat tame version you see in the modern Avengers movies.
And there is still no alternative.
What will we do? I don't know. I don't. We tried CBD oil a while back it didn't help like I hoped. I think Bennett needs something more potent. That's not legal here. To say that I'm frightened about what his future holds is a massive understatement. As the Risperdal is pulled further and further back, what is going to emerge? And will Bennett's physical symptoms go away or has new permanent damage possibly been done to him?
I worry less about the latter, as his movements have decreased slightly since the Risperdal has been decreased. But am I worried about the former? Yeah. Yeah...
So there you go. The short version. Well, shorter.
Wednesday, December 23, 2015
I question matters of Faith and Spirit with some regularity.
It might surprise some to know that about me, since I don't discuss God much. Other than those few blasphemous swear words I pepper into a conversation. Or using the words "Jesus" or "Christ" in a format where I'm not quoting the man, rather reinforcing some point or emotion totally unrelated.
That MIGHT be on a Sunday. Between the months of September through January for sure!
Otherwise I keep my Faith to myself. And I don't claim this is a good thing. I merely state it as fact. I admire people with steadfast belief systems. Those unshakeable pillars of righteousness that can quote the bible chapter and verse and who do their damnedest to live a life according to those beliefs.
I've talked about some of those people here before. So long ago...back when I used to write. Back when I had some idea of who I was. Where I had been and where I might be headed. I'm more lost now than I have ever been.
Yeah that whole positive thing I tried? Failed, as I have failed so much in the past. I wanted it. I could taste it. But I couldn't maintain it. So what did I do, as far as this blog? Hid. Like a fuckin baby. Didn't want to admit that maybe I just didn't have what it takes to be that guy.
But I don't.
My life just isn't that, and has never been that. And from the look of things, it will never be that. I can't false project an air of total positivity and feel that I am being honest. It feels like wearing someone else's skin. That doesn't mean I want to be negative either. I just can't lock myself in to any one thing.
I don't know what the Hell I am trying to say. I am so twisted up.
Tomorrow morning I am driving Bennett up to the Cleveland Clinic to see a Neurologist. (Ladies and Gentleman, we have found THE POINT of this rambling!!!)
The Hell you say?
The Hell I say.
A few weeks back I started to notice some odd positioning in his right arm. The positioning became sudden jerky movements. He also pulls on his shirt. This sounds ridiculously oversimplified. Visuals are better.
He has seen Psych and GP. X-Ray to rule out a possible injury. In case you don't know much about Bennett, he can't really tell me if it hurts. Not really. He uses echolalia a lot. His pain tolerance is also Rocky Balboa off the charts because of his left side being mostly gone. The left side of his brain I mean.
So could be a lot of things. Could be the Resperidone he takes for aggression and self abuse. We already started that wean. If the fact that today at Kroger and his meltdown in Caroline's Cart where he started to try to pull his eyebrows off and stick the loose strap into his eye is any indication of how bad it might get, my heart is already breaking for him, what's left of it, and I feel like stabbing myself in the neck with a screwdriver.
Today I was kind of curious, so I started looking at some video. Shit. This arm thing didn't just start a few weeks ago. I think it started over a year and a half ago, maybe longer.
AND I DID'NT SEE IT! I WAS SO WRAPPED UP IN MY OWN LIFE I MISSED SEEING THIS SUBTLE DETAIL. I FAILED HIM IN THE WORST WAY. WELL, IF YOU DON'T COUNT WALKING OUT ON HIM AND MY FAMILY FOR OVER TWO MONTHS.
I don't miss details like that on him. I just never did before. I was the one who can be heard in a video asking whether Bennett was 'retarded' before he even turned a year old. I was in the doghouse for a month over that. But there was something about his left eye and it's focus. I was only able to get out of the doghouse by doing a lot of photo diagrams and presenting video evidence.
Nobody believed me, but I was less reviled.
And hey, this was back before I knew anything. Which is why I don't lose my shit if I hear someone else say it. They just haven't been educated on what their choices are yet.
But I missed this arm tuck and feel sick about it. Sick. I can only hope that whatever this is that the damage is not permanent. If somehow our actions have made this whole thing worse...I dunno...Jen had a very reasonable point. At the time he went on the medication, he was slamming his head into the floor, the wall, LEAPING off of the top of the stairs to hurl his body down them.
And since MMJ ain't available here, all we could do was put him on this medication.
I don't know what happens next. I don't know.
I was sitting up here in my college dorm room like bedroom and pondering what a fucked up failure of a father I have been to both of my sons and trying to google map a route to the Clinic when the power went out.
It's December 22, unseasonably warm, not a storm within 50 miles and the fucking power goes out. That was around 10:30. It's around 12:30 now. It will be very hard for anyone to get decent sleep. What a mess. Jen took Bennett to their room and I gave them the only lantern I had batteries for.
I had one flashlight left the kids had not broken I used that to rig up tea lights in Dixie Cups on plates. Some light not much but some. I don't keep a lot of candles or fire around since as Bennett gets older who knows?
It's funny. Earlier tonight I called a dear friend Richard. He'd be one of those spiritual types I've written about here before. The great kind who knows how to talk about it without shoving it in my face. He is also one of the few people on this earth that I know without a shadow of a doubt loves me unconditionally. That's a post for another time, because the whole idea has been on my mind.
He texts me after and says that he will pray for Bennett and our family through all of this. Now for any of you groaners out there lemme explain something. That's a gift. And I used to be a groaner too. But truth is right now? I'm not praying, and he knows it. And if he believes that the power of prayer can help in some way, then by all means bring it on. I welcome it.
Of course, ten minutes later we lost power, and because we are such good friends I had to text him back and ask him if maybe he messed the prayer up or something. Got a good laugh.
On the inside? And this is the part that I struggle with. God had nothing to do with my power going out...but he sure will take the heat for it. That's exactly what I was thinking as my anger swirled inside me and I took the picture WAAAAAY up top there by the light of the Dixie Cups.
I was pissed. I was passed when God wasn't there for me when I was getting my face shoved into garbage cans by my stepfather, I was pissed before that when God let my real father walk out the door. I was pissed that I was awkward, that I was ugly and geeky, pissed that it was a struggle to feel comfortable around other human beings. I was angry that God let Meighan die so young, and I was furious about a few other things even too personal for me to talk about.
But most of all? Big guy? What were you thinking letting my sweet kid get so messed up? What kind of life is that for him? For any of us? For his brother?
This is the struggle I always have. Always. I reached out to a church locally and want to go back but I am waffling. Because of this. How can my God be a part time employee? How can he allow the shit to go down on Bennett and then also think it's cool for me to run to him for help with Bennett? I tried to explain it all in a very convoluted post a while back, I'll have to dig that one up.
It's a double bladed lightsaber it is. And it's tormenting me right now. Just call me Kylo Lilly. Or call me an idiot. I don't care what you call me just don't call me late for supper. Grandma Ina, that was one of hers.
"That's pretty funny innit, Kenneth!?!" And she'd grin.
She sure would grin.
Thursday, October 8, 2015
What can I say? Shit happens!
The excitement I feel over the picture up top can only be matched by, maybe, the electric sizzle I got last week when I thumb tacked a poster on my bedroom ceiling of Erin Gray as Colonel Wilma Deering. Wait…I meant, when I was a much younger man.
Still, I'm excited about the photo!
As an artist most of my life I have lost a lot of actual artwork. I've given lots away, had some stolen, and in fits of emotion even destroyed pieces. My attitude over originals used to make my former boss at Palisades shake his head at me in disappointment.
"I don't know how you can DO that!"
"I dunno…I suppose because if I want more, I'll just make more."
Which was total bullshit, I never did that. Well, rarely.
As I've grown wiser, matuuuured, I see the wisdom in that head shake. Now I cherish the discovery of pieces I didn't have anymore. Like the painting above. Gave it to someone in Grad School. I think. That's the worst. When I can't even remember where they go. But when they somehow find their way BACK? WOOHOO! It's like one of my long lost daughters stopped hating me for making them look like a dude and returned with forgiveness for all! Oh happy day!
And I'm not picky, I love the originals, but I will take photos if that's all I can get.
This single, super out of focus black and white is of a beast of a project that was my Senior Thesis in my undergraduate studies at St. Mary's College of Maryland. A mixed media Assemblapalooza regarding families and the subtle abuses they inflict on each other as adults in the psychological gamesmanship they use.
It was a culmination of work about family, specifically my step-father, started years before in Drawings and Paintings. Though I admit I did sometimes work the Old Man into my comics work. If I needed some poor sap to get gnawed on by some hungry demons? Guess who drew the short straw? Even Artistic revenge has a kind of sweet taste to it.
But the closure piece to all that junk, designed to wrap it up so could write the final chapter on it? I've had no existing visual record of it that I could access. And I want one big time. So much happened in and around that group of pieces. Regarding the art itself, my relationship with my step-father and its closure, my girlfriend and the dismantling that work had on us. The more I assembled the project, the more I disassembled the two of us.
This work had a major impact on me as an artist, maybe the greatest of my life, so much so that it likely dictated the path my career would take from there forward.
All that from a bunch of wood, foam, paint, photographs, nails, screws and found objects?
Well, yeah, it's me remember? In fact the whole dramatic tale could be an interesting foundation for a unique book. At the very least a multi-part blog post.
But to get there I need much more info. Much more.
This is what I call a decent start. While doing my daily ORG! I found a stack of contact sheets and negatives. All black and white photos from my college days. I saw around 6-7 pics like this one (and some titillating ones of the Senator theater at night, Memorial stadium on the day of the last game, old buildings in Bel Air and Harford county now long gone. Even a few of my mural I painted in the art room at Harford Community College (like the one below). In progress shots instead though. Neato.
I gotta figure out how much to get the negatives transferred to PC, and so on. But it's exciting to know they are there.
I know I have a VHS of the finished piece. I don't know if the tape has degraded. I need to get that transferred to digital post haste also.
Paid 99.00 for a Microsoft Office 365 Membership today. With my fingertips in so many little projects, it was time to pull the plug. Glad I did. All day I was getting things done faster in the business, in the file organizations, spreadsheets, everything.
As I get further along on assembling something on this, I'll post updates.
Thursday, September 10, 2015
OK, this pain and insomnia stuff.
It's been around a long time. But for some reason this year it's accelerating. Even though I had said this space was not going to be the Lilly Health Report? I lied. It is. Because for the time being it has consumed a vast percentage of my life. I can't ignore that. I can't sweep it under the rug.
Psychologically I feel compelled to keep it to myself because of my late Gramma Ina. I did love her, so please don't misunderstand what I am about to disclose. First of all, it isn't necessarily polite to speak ill of the deceased. Unless they were assholes. She wasn't, FYI. But I have to take care because this particular deceased's daughter, that would be my Ma, reads the words contained herein.
With some regularity.
So I gotsta tread...lightly. You understand.
Gramma could cook circles around everybody. EVERYBODY. Including my Ma, and my Ma would admit that freely. But eventually as with all things that changed, and my Ma became the Champion of the Corningware. But for YEARS my Gramma ruled supreme in the kitchen.
Having a coffee can filled with bacon fat at her fingertips made that easier. I swear sometimes I think she had that thing strapped to her belt like a gunslinger in the American West had his trusty nickel-plated Colt.
She slathered that shit over EVERYTHING.
Over easy eggs? Bacon fat! Frying up some chicken? LOTS of bacon fat! Green beans? Yeah why not? Bacon fat! Baking a cake? Ba--um, no Crisco, waddya crazy? Crisco in case you don't know is essentially another type of heavily processed lard. But you CAN have your cookie sheets greased in bacon fat. I've seen it happen. In here house when she ran out of Crisco. Most people would use butter. She seemed to prefer bacon fat over butter. I even saw her spread bacon fat on a warm biscuit, I shit thee NAY!!!
Best of all, when the bacon needed a running start in the cast iron skillet that was kept prepped by rubbing it with bacon fat after cleaning? It got a running start with...more bacon fat!
It is quite possible my Gramma consumed bacon and eggs every day well into her 80s. And her heart was just fine. Of course, the smoking is more likely what contributed to any decline in her health in her later years, and her strokes. But she lasted a long time. Imagine how long she may have lasted if she cut back on the smoking and the Whitmore samplers and the bacon fat?
One can only speculate.
So...your point here Lilly?
Yeah...I'm headed a bit off the reservation. I do that from time to time, especially when I start thinking about the old days. All that bacon. Damn that shit was good. Eh...who am I kidding? I wouldn't touch the shit now. It's fucking gross.
Like I said I loved the old woman. Well, except for when she would read every single street sign in the car while I would be driving her somewhere "Kenneth! Salvation Army Christian Center for Worship and Service! Sign Broken Message Inside on Sunday! Isn't that Something Kenneth?" That's something alright. Or when she would have me choose my own "switch" from her backyard when I was a kid in order for her to beat me with it when I was out of line. Look I get that times were different, and she didn't understand that corporal punishment is bullshit and serves not to build a child who is obedient and dutiful but instead creates one who is terrified and has a monumentally dysfunctional sense of self-worth.
But those were the times, it's what she knew, and people like her...they never took a spanking where it should not go. For the record the switch selection process, in fact switches in general, were abandoned by my Mom. Always appreciated that. (Holy...I'm just a kid up there. Where DID the time go?)
But one thing Gramma did that REALLY got to me? Holy shit on a shingle did she bitch about what was ailing her. From pimples to headaches to bunions to minor skin irritations to constipation to aching joints to heart palpitations to strokes to...I'm kidding, of COURSE anyone is entitled to complain about constipation. The thing is, it wasn't stopping with the actual first impression of what was troubling her. Escalation was a certainty.
Pain in her joints was almost certainly Rheumatoid Arthritis. Skin rashes, naturally, became flesh-eating bacteria. So after a visit to the ER, we should call the Church. Headaches indicated with no doubt whatsoever a Stage 4 Brain Tumor, inoperable. Headstones would be a good thing to look into. Constipation and bloating couldn't be all that bacon fat, it must be an intestinal parasite that would require anal probing. Good God woman! That isn't the image I need while my head hits the pillow!
I'm exaggerating of course.
My mother was so worried about The Apple falling too close to that particular tree that if she were shot in a drive-by, she would probably tell me she was stung by a bee. She tends to downplay the things that affect her. She fights through it, usually with no outward sign of distress. I know better. But I'm her son. This makes communication between the two of us difficult. Very difficult. Particularly since she has an illness from which there is no recovery, lives a helluva long way away and prefers to be low key about how she is feeling. It's OK, there is an unspoken language between us.
Primarily because I'm somewhere in the middle with a leaning toward where she is. That may be hard to believe, considering all I've revealed in the past here. But I consider much of what gets written about here as the "blogzilly" aspect of myself, not necessarily a true representation of how I am in everyday life. Here I feel the compulsion to write, to share, to be somewhat dramatic. Having that TMI reputation is a badge of honor I wear proudly.
Those posts about The Thing, the ambulance ride to the ER, the colonoscopy, the tonsillectomy, the food poisoning, and who will ever forget Buttface? You were REALLY trying to weren't you? They were fun. At least...after the fact. I don't look at those activities the same way I look at Gramma waxing melancholic about a new mole on her back growing a tenth of a millimeter while the family is sitting down to Thanksgiving dinner.
I'm writing about them...it takes on a different flavor then. I used to say 'blogging', which is true, I am. I was ashamed to use the term 'writing' since this isn't a book, and has funny pictures of faces on butts sometimes and is, in fact, in a BLOG. But I don't just toss words on a screen like shit and see what sticks. I take my time and I craft a lot of this stuff. It's somewhere in between blogging and writing. It's...I dunno...Bliting! Or Wrogging.
You heard it here first.
It might surprise you that I have a physical scheduled for November 3rd with my GP. To date I have been OK with this, even though week to week my symptoms seem to be deteriorating, changing, morphing, whatever. Part of the lack of a desire to rush is because I have always been this way. Been like my Mom. Calling the doctor is not the first choice.
The first choice is what can I do on my own to solve my problem?
This frustrates me about her, just as I am sure it frustrates my Mom about me. But I have to admit I admire her for it. And I am grateful for that trait that through no real purpose or effort she passed along.
Because by waiting and not rushing to a doctor I have time to learn. To try things. To make adjustments that could benefit me long term. If you have read these pages before you know that I have made good choices in the past, and many have stuck and been successful for me. Quit smoking, gave up soda, gave up red meat, then all meat. Went to a plant strong diet...fell off the wagon on that. A lot more needs to be done.
From the look of things, this whole mush-mash of symptoms is quite possibly a long-term problem brought about by years of bad living, no matter what course corrections have taken place within the framework of the past five years, and the monumental stress of being a Special Needs Dad. Stress unchecked, I should be specific. I don't manage my stress well. I don't vacation, yoga, I barely exercise, all that stuff. That all needs to be altered.
So I'm working on it. Got some PT equipment and am strengthening core to move to more physically challenging efforts. Picked up some books recommended by some doctors I trust. I'm reading product labels like they were the works of Sun Tzu. I have eliminated Gluten now from my diet whether I need to or not, kept Dairy out, and am constructing a plan to do the same for Bennett. How many times have I talked about wanting to do that and never done anything about it? Well, because my own issues are what they are, I can't make excuses anymore. Carter will take some...convincing.
I can't beat myself up for any failures or mis-steps along the path.
Not long ago I joined Instagram, in an effort to expand my Social Media knowledge. I had no idea what a good move that would turn out to be. That and a renewed look at apps like Twitter and Pinterest have opened new doors to people with tons of experience regarding not just Special Needs but Health as well. There are a lot of excellent, positive messages to be found there.
Probably not news to many of you reading, but remember, in the Dad community, these things are not as natural for us. We don't share, we don't pin, we don't blog as much as the Moms do. In fact, I don't even think there is a pop culture equivalent for the phrase "You go, girl!" that men can use with each other. (That may not be a bad thing, if you want my honest op on that one.)
But the lack of real unity of community speaks volumes of our nature. And our nature holds us back in a lot of areas, one of which is taking better care of ourselves in matters of healthcare and pain and stress management. Traditionally. Not all dudes are created from the same Duderons.
Having said ALL that? And meant every word. I am not going to wait for the 3rd of November to see my doctor. If the ladies have some inherent right to change their minds on a dime, then the men should have that right as well. I had put in in a call late last week to my GP's nurse line, just asking for some advice. Nurse is a DUDE, how about that? The doc was on vacation but earlier this week I got a response and the next steps are Rheumatologist and GI guy. Wouldn't be a bad idea to go back to an Ortho dude I saw before either, especially after the straight neck X-Ray, get some kind of PT regimen that is more structured into play. Already got a call back from GI, and an appointment is scheduled.
So there we are. Another Lilly Health Report. Hopefully a bit more entertaining than the last one. What am I saying? Of COURSE it was...that sound you hear? It's me patting myself on the back.
Damn that hurts... Shut it Gramma!
Thursday, September 3, 2015
This is what you might call virgin territory for me. Maybe not virgin, definitely inexperienced. This is where I get super scared about sharing. Not my area of skill.
But you gotta start, to get to someplace cool. Truthfully I started down this road a couple of years ago. Remember those few posts about food and Vegan stuff a and how great it was? I stayed on the path KINDA, I just veered off a bit. Well I'm on it to stay now, armed with new info, guidance and practical motivation.
If things don't change frankly my quality of life is going to continue to go into the crappah. Can't have that.
I've been stalking the food ideas of people on Pinterest and Instagram, making new friends, learning new things and hopefully getting a clue about how to live a healthier existence. I marvel, stand back in sheer awe at what some folks make to eat that is 100% natural and good for them but looks freaking AMAZING.
This THING I put together for lunch? Nuthin special. Steamed brown rice, seasoned up with a no salt blend of garlic & pepper spices. On top three oz of extra firm tofu, I blackened it a bit with a coarse black pepper blend and a very light dusting of pumped coconut oil. I don't know yet if that's OK for me to use or not. Still trying to figure that out. Didn't use much. In the cup is Organic Green Tea with cinnamon.
Only thing missing for me was some greens. I had some spinach cooked up and then was trying to drain out some juice and dumped it into the sink.
I may need to lose the dude mentality. I didn't want to dirty up a colander so I just tried to use a paper plate to hold the spinach in while the water drained through. I only even used the white China because I knew I was going to take a photo.
That paper plate MacGuyvered strainer got saturated fast, spinach was heavy and like a dolphin being let back out to sea the whole batch slid right out and into the garbage disposal.
Yes, I was pissed. But no so much that I also couldn't laugh at how ridiculous the whole scene was. Especially since it was so avoidable if I'd only been a more thorough Chef and been willing to allow another dish to be placed in the clean-up pile.
Lesson learned? Not likely. Once a dude always a dude I guess. Well, at least I hope so.
The tofu and rice was fantastic. Clean, crisp tasting and damn tons of flavor all over the place. Who would think that tofu would satisfy like this? Didn't used to, but remember...I haven't eaten a steak in around 4 years.
Now tofu tastes like a very hearty fish. Mental illness and delusions can often be a plus. ;)
Maybe someday I'll invite you over for dinner.
Sunday, August 23, 2015
Or maybe there is.
This is supposed to be happy picture right?
We've been trying to help Bennett's behaviors, the problematic ones, through modification.
Today we were following a schedule, it's fairly new for Bennett at home but he seems to enjoy it. I'd always believed he was OK with things more loose after working so hard all day but now I can't even remember why I thought that made sense. Maybe because of the whole "Square Peg, Round Kid" thing from a couple of blogs back...my reluctance, common among my gender, to accept the circumstances as they were.
There were always the meltdowns since the surgery. The aggression, the scratching, the biting, the hitting, throwing, the abuse of himself, that's the worst. I never attributed them as much to the Autism as I did to the fact that almost half his brain was gone. I'm trying to find a balance, I have been all this time.
I'll tell you, there are days, like today, I don't feel like I'm cut out to be his father.
At some point today he became zeroed in on that red spoon. It became all he wanted.
We tried leading him, encouraging him toward something else. Nope. Spoon. Even when it was out of sight. Even giving him the spoon for reinforcement as an icon on that schedule that he worked for was not acceptable. He would lose it at some point during the reinforcement and I had to make the spoon gone. Meltdowns order of the day. After a while, to give him the spoon in any situation would be to reinforce all the negative behavior. Can't do that.
It was exhausting. Diversion attempts, distractions, everything, just nothing could help. Tried ibuprofen all the usual things to see if he was hurting, the this the that. Nothing helped at all. He hadn't banged his face into the iPad in a long time. He was doing that a lot today.
I was in pain already, that isn't new. But it was intensified by the stress. Splitting headache. Super neck pincher. Arms and fingers stuttering. Legs on fire. Gut in chaos. It was early yet :) Here it is after 2 AM as I write some of this and I can't find any position that doesn't feel like I'm being stabbed.
I'm scared he is headed into a cycle. He's done that before. Please, God. Not now. There's something else up with him, something I have to write about, got the news 2 days back, but that will take too long. Another post. But a cycle into behavioral upheaval is the last thing Bennett needs in his life today. I need more time to figure more stuff out.
Have to be careful. Negativity is beating the shit out of me tonight. Because today I feel like I failed him. I did fail him.
I gave him the fucking spoon. I just couldn't fight him anymore.
The entire day...lost in an instant. I reinforced all of his negative behavior with a giant cheap red spoon from the dollar store.
If I sleep tonight, I need to wake up tomorrow with fresh resolve to move past it, come up with some new ideas and...I don't know, figure out how to get him to forget about that stupid spoon.
Or integrate it in some way so it doesn't become a barrier to progress.
Thursday, August 20, 2015
That means even though I have a goatee which generally insinuates negative, or I am already what my evil twin would look like in Star Trek's alternate reality, I'm supposed to keep that mm-hmm good stuff flowing and be sure the door to that Universe stays shut.
It's gotta be that way, right? Yeah? Pause for reassurance…wait, this isn't a conversation. It's written word. Sometimes the voices in my head are a pain in the butt.
Yeah, it's shut, though maintaining Maximus Positivicus isn't easy while writhing in agony. Which I am, and that's no joke. Tonight I had tears in my eyes over it. Bennett, bless him, actually came over to me and patted me and said "OK, Dadda, OK". I did say I would try to steer away from The Lilly Health Reports, but I will go there long enough to tell you that it takes me an unusually long time to get these posts done because of the intensity of the pain, inability to sit or stand for extended periods in one position, type, etc., my vision gets blurry super fast and my hands continue to shake like they did the first time I unsnapped a, um, a forgot what I was going to say for a second.
Oh yeah, I was going to say I was about as thrilled as anybody has a right to be when so many people responded to my last post. In comments, Facebook, privately. In the overall scheme (solid recovery from Health Report there, Mr. Lilly!), I'm not comparing it to something you would see on more popular blogs, but it's enough…enough to remind me how important doing this is to me.
Overall I do feel hopeful. We drop that in? I'm not sure. I am trying to reassure, which isn't a bad thing for anybody to do. If that's what it takes to keep some positive mental energy flowing? That's what it takes.
It's weird. Making an effort to stay positive. Like wearing clothing in a completely new style. Not that my geeky-ass couldn't benefit from that, as I continue to wear the same ratty shorts and Red Kap or bowling style shirts I have been wearing for the past fifteen years.
Metaphorically, continually applying the pressure on the inside to look for the good feels like I've abandoned the Nerdiform in favor of something out of GQ. The awkwardness of it is striking for a man who finds it easier not just to tell you the glass is half empty, but what's in the glass taste like shit.
Not my joke, but a good one.
But the times they are a-changing. And while I still can find myself down, or tearful, negative, downright paralyzed by abject terror, I try harder to fight through it these days. I believe that somehow I am going to find a way.
I don't know why.
I just don't know why NOT.
Would you like to know where I find a great deal of my inspiration?
My other son.
The one I don't write about very often.
His beautiful soul, his smiling face. And his ears of power. ;)
Just like mine when I was his age.
In the early goings of this roller coaster ride not writing about Carter was an oversight. A Dad too consumed by the overwhelming power the Disability Grenades had when they exploded on our lives. Hours lost picking out shrapnel, less spent on healing. For all of us.
Later, during times I have been blogging, the decision morphed into that of a conscious choice of exclusion.
There is a freedom to writing about a son with a disability when you have a fair certainty he will never read what you've written.
You cut loose, open up, let fly your inner self.
It's been about as liberating for me as anything I can think of.
When you start to think one of your kids is going to grow up and begin reading your material, it gives you pause. Lots and lots of pause. You hesitate when pulling out a fantastic bra reference, for example.
Since the seizures began in 2009 Carter had to get used to being placed in the back seat to Bennett's special circumstances, I wonder what he will think when he starts to read all of this and seed how excluded he was from my ramblings?
If I have any brains in my head I will have done something about that. Not here. But somewhere else, somewhere it can matter more. So that I can be sure he knows what this journey in this space was about.
Maybe he won't question it as much in the future if I continue to work on things between the two of us in the present day. Our relationship is as different as it gets for me relative to the way things are with Bennett, but it is no less meaningful, no less important. And I've been doing as many little things as I can to show that to him.
It's bearing fruit, slowly, despite it's difficulty. In some ways it is harder for me than being a Special Needs Dad. I don't know how to explain that to people. Not yet. Someday I will. I'm sure it has something to do with the fathers I had. Or didn't have.
I admire Carter. I'm proud of him.
In many ways he is like me. I don't always encourage that, trust me. I want him to be better than his old man. What Dad doesn't?
Often I find myself impressed at what a strong, resilient boy Carter is growing into. He has undergone a rocky, at times tumultuous relationship with his younger brother during Bennett's more aggressive periods, yet Carter bounced back somehow and continues to try and be there for Bennett, to draw Bennett out, to connect with him.
So many things I have tried to teach him about how to succeed with Bennett have taken time to take root but they have become a part of Carter's universe, and when I see him using those skills I have to occasionally leave the room so that Carter can't witness my tears of parental pride, joy and absolute love for him and his little brother.
How can I not draw positive energy from that? From him? Besides, I owe him a father to be proud of. Over the past few years I have fallen short in the role model department.
Many things inspire me of late. The visit from Aaron. A meeting I had with a priest. My Mom's fight with her illness. The blogs of my friends. Encountering new and interesting lives and experiences through the most unexpected ways.
When I saw this latest set of pictures you've been seeing, from an outing at a hiking trip, I was inspired to finish that last post I had been writing, which was about acceptance.
There was a time, in any public place, that Carter had a real hard time with Bennett's expression of himself. If Bennett sounded too "disabled" Carter would attempt to peel off his own skin so he could hide in a blanket of it. He would become so embarrassed at the attention it would draw to us, then you could see the shame, followed later by the guilt, take over his face.
It was like falling rocks. Once started, these emotions in him could not be stopped. Inevitability. It's a hard beast to slay. I get it I really do. Me? Nowadays I love it. Let it fly. It tells me and the world that he is communicating something. But I wasn't always that way. On the outside you might never have known, but on the inside I hurt like Hell for all the things I hadn't come to terms with. That feels like a century ago.
Carter has always wanted to get some kind of award or trophy. To date he hasn't received one to satisfy that need. He has watched as Bennett has received two. Two damn nice ones I might add. I was thinking I should have one custom made, just for Carter.
He has come very very far.
During this trip, and this is only one example, there are too many to count, he spent so much time engaging with Bennett who, even though he doesn't show it all the time, is overjoyed that Carter is right there by his side. Bennett adores Carter, worships him, often won't go somewhere unless Carter comes too.
At some point during a quiet moment of picture taking, Bennett expresses himself.
It is not a quiet expression.
Some other time, some earlier place, this would have been a different boy. A boy with his Dad's goatee. But the Mirror Universe is closed. Thanks in large part to him. In THIS reality, Carter has more patience, more tolerance.
At the end? The smile on Carter's face is priceless to me. He is a beautiful, wonderful, perfectly flawed son and brother. I can see it right there, as plain as the freckles on his nose…he accepts Bennett and loves him and he accepts the life we have.
I am happy for him. It's a good place for him to be, his spirit will be stronger, his heart will feel more nourished.
Yeah…I really need to come up with some kind of trophy. "Bestest Butt-Kickin Boy"? Nope. "Loquaciously Loving Lad"? Eww gross. "Brother of the Year"? Yikes, too formal.
Wait, I think I got it…
BROTHER'S CHAMPIONSHIP AWARD
GIVEN THIS DAY TO
CARTER MAXIMUS LILLY
FOR ACHIEVING AND MAINTAINING THE HIGHEST
STANDARDS OF BROTHERLY EXCELLENCE
AND WHOSE ATTITUDE, INITIATIVE AND PERFORMANCE
REFLECTS THE SPIRIT OF CHAMPIONSHIP BROTHERS WORLDWIDE
You think that's overboard? Hell yeah it is! And yes I know it's wordy. It's me. I have some…editing to do. Consider this a first pass.
Cant wait to see it when it's finished!
Friday, August 14, 2015
Whenever I find myself in the midst of a disability maelstrom, it's not uncommon for me to lose my way.
Of late my attitude in regards to coming back into the family's everyday after being separated has been positive but it clings to those puppy dogs and lollipops with duct tape, Super 77 and Velcro. Tenuous is a good word choice for everyday happenings.
No way to see beyond the stormy horizon.
Not because I don't want to see a bright beach with crystal waters to sail into. Rather the sea is in a state of such unrest the waves obscure what lies ahead.
Lilly's pulling out his sailing ship analogies again. What happened?
There is a reality that started to come into focus for me. About my life. Carter. Jen. Bennett. Of course Bennett will always be at the epicenter of what can only be described as a jarring set of unknowns, unsettling problems that some days appear fixable and other days...do not.
What must it be like to be at sea and become aware that your ship has a tear deep in its underbelly? A rip circumstances will not allow you to repair, EVER. While the splintered wood hasn't resulted in the outright sinking, while you can still get from one piece of land to another, each time you take her out the weight of the damage pulls her, pulls you, deeper into murky depths.
To remain safely on land. To never venture out. Is to accept a kind of...
I began writing that several months ago.
It is one of those posts that got started then suffered from my classic 'FUGGIT!' Syndrome. Got too emotional over it. Stepped away. Didn't feel like writing anymore about something that was so negative. Imagine that. Especially since the blog used to be pepper sprayed with negativity ALL THE TIME.
Deep down? I'm not so much about that. Not anymore.
I still get down don't get me wrong. I have Depression, Anxiety, PTSD, ABC & 123 girl, you don't get to walk away from that. Admittedly I also get a cheap thrill from the act of kicking its ass as often as I can, when I can. And that is more often than not these past few months.
Mainly in matters relating to my second son and his disabilities.
When I began to write that post, Bennett had just received the results of a Neuro-Psych Evaluation. It was objective, something I can never be. It was also FUCKING BRUTAL, as you parents in the World O' Special Needs know they can be.
For those unfamiliar with what a Neuropsychological Evaluation is (and good for you may you never EVER have to read one) here is a very ham-handed attempt at an explanation. After a brain injury, there are going to be issues with behavior, cognitive function and other things that the brain regulates. The evaluations serve to let caregivers, usually parents, know where an individual is in their overall development.
Each person has different needs and so testing is different for every individual, so if needed you can go beyond behavior and cognitive into sensory, visual, language, motor, etc.
Not a fantastic summary, but it will have to do.
Back to Bennett's Evaluation.
I'm reading this thing, and I just felt like I was getting bitch-slapped around the room. Understand this means Bennett was getting beaten up in the eval, and by extension I was taking his blows. That is my par for the course with ALL of these mufuggin, um, necessary and informative tests and quarterly reviews and the like.
So it's not like I wasn't steeling myself, because I was. But when I got to the section that re-categorized him by percentage I allowed my guard to drop and found myself getting sent flying across the room, as if James T Kirk himself had hit me in the chest with a leaping leg kick.
Bennett was placed at the bottom one percent of the population.
It was really less than one percent, expressed thusly… >1%. That was an across the board summary of his overall cognitive abilities. In the old days, you would call that severe mental retardation. Actually, not so old. Nationwide Children's Hospital, where he receives Psychiatric treatment, still refers to one part of his diagnosis this way.
Today, it's supposed to be called Intellectual Disability. OK. Gotcha. Maybe some other post.
The point of this one is the ninety-nine dot-whatever-whatever percentage points I could not stop thinking about. It was consuming me. Remember the movie with Gladiator where he played some Math genius and the numbers and spy codes and junk would light up and move around the cool hat of Bud Brigman from The Abyss? What the hell was that movie called? My memory sucks. A Beautiful Mind. That's it. Thanks Internet! (Heh…irony.)
I would look at Bennett and see floating, well lit CGI percentage points floating around him and wonder how I screwed him out of this one or that one. I mean, had to be something I wasn't doing, right? I'm his father after all. It's my job to protect him.
An unfortunate combo of maleness, Catholic guilt, and me just being me.
This month? It will be six years since the surgery that removed the tumor from Bennett's head, consequently killing the Infantile Spasms (seizures) that were devastating his developing brain.
Six years. Wow.
I spent the first year and a half after the surgery obsessed with getting him to say "Dadda" again. It's sad really, when you go back and watch video. I was so NOT living in those moments. Fighting so hard, so desperately, to place a square kid into a round hole.
I had that Garage mentality. I took Bennett to the shop. They went under the hood. Cleaned out the bad stuff, made sure all the wires were connected like they shoulda been, even vacuumed the interior. After that, with some therapy and some breaking in, he was supposed to return to normal.
Yes I know, that's just another way of stating that Denial is a beautiful thing. Was I still that same man, rebounding from one stage of grief to the next?
The numbers. Less than a percent. For three days I was uselessly dwelling in a pool of nothing. Then I started to try and sort it all out by writing.
Almost as quickly as it began, my unrest began to fade. I say quickly because in my world of emotional processing, three days is The Flash level speed. Not long after I walked away from that post (WAY up at the top there) I realized when I looked at Bennett I didn't see an evaluation that said he only knew the letter A and B and sometimes C after trying for almost 2 and a half years.
Instead I saw a boy who loved to sing the ABC song by rote memory, not really understanding it as an "alphabet" but as a game that ended with Daddy clapping and him jumping up and down. SATURATED WITH JOY.
Fine by me.
I didn't see a Bennett as, according to the evaluation, a kid who could not engage in peer group play or other kinds of typical play behavior for kids in his age and peer group group or even younger and who preferred to spin objects or play in water.
Instead I think about how often he says "Daddy baseball?" when he wants me to play with him outside with the wiffle ball and bat and electronic pitcher. Sure I'm helping him hit the ball, but WHO CARES??? When he runs the imaginary bases as I hoot "RUN BENNETT RUN!!!" and he comes to home plate he is LAUGHING AND GRINNING FROM EAR TO EAR.
It's completely fine by me.
More and more I wasn't seeing Bennett as, according to the evaluation, a boy who would not engage socially with peers unless prompted or who had issues with adverse aggressive behavior.
Instead I saw those things as our problem, not his. It would be up to us to guide him, to prompt him if he needed it, to manage some kind of behavior plan. But I always knew that.
Besides, he engages when he wants to. I know how great it is, how AWESOME it feels, when he grabs me by the hand and says "Daddy sit." when it is nearing the end of his day. And we watch YouTube videos of the two of us together that HE CHOOSES and he says "You funny Bennett you funny you know dat?" Which is something I've often said to him. And he laughs and giggles and LAYS HIS HEAD ON THE PILLOW ON MY LAP SO HE CAN GO TO SLEEP.
You bet your ass that is ninety-nine-dot-whatever-whatever-percentage-points fine by me.
It had become easier, so much easier, to see Bennett as just…Bennett. And not to just say it.
To feel it.
To KNOW it.
To believe it.
Something had changed. Had an idea what it was.
There aren't many easy answers on this journey. No single manual or set of guidelines that tells us how to do the monumental things asked of us as parents. There is no secret formula. If there were then I'm sure someone would have figured out some way to bottle it, write a book about it and make a fortune long ago while simultaneously giving free samples to everyone who really needed it.
The truth is that I think all of us, this breed that's been labeled Special Needs Dads, has to reach each milestone, overcome every obstacle, engineer each breakthrough at an individualized pace, according to personal preference, capabilities and the circumstances and needs of the children we care for.
Everybody's body type is different I get that. So there can be no one size fits all solution, even though our gender often prefers it this way.
If there was one key for me, one bit of information I would try to pass along to my younger self as he was just getting started, it might be what I learned through this latest of experiences.
Be the fighter you are, but don't fight the grieving process. Mourn the loss of your normal life, it's OK. Don't feel bad about it. It isn't your fault. Then run, do not walk, to the Acceptance stage as fast as you possibly can.
When you're there, take a look at your child. With fresh, new eyes.
Then start building something.
A solution for a new life that takes into account the measurement of the wonders your child is to you, not who your child isn't. The measurement of who you are, and the amazing things you are going to find yourself capable of.
You may find it all adds up to a total package of percentage points that the both of you have. Last I checked, that's probably around 199 more than we need.