My journey through life with autism, seizures, - and a side of crazy, mad, wonderful.
On being forged into a warrior mom
If I could summarize our journey from Hell to HOPEISM, it would be in my faith, which I call HOPEISM. It has been my weapon of choice to get me through each battle I have had to fight in my mission to win our war called life with autism and seizures. Vaccine injury to be more specific. It would also be in committing to heart, soul, & mind the words and motto's from Forged, NDCQ, the Lone Survivor, and Levi Lusko in his book, "Through the Eyes of a Lion." I will be forever grateful to the inspiration, encouragement, and mental fortitude found through all of them collectively. Because of that, I am not allowing this tragedy of vaccine injury that has come into our lives to be an obstacle to being used by God. I am instead turning it into an opportunity to be used like never before!
This blog is dedicated to Brandon. His life has been forged by difficulty, obstacles, & all too often because of seizures - pain, blood, broken teeth, & broken bones. Yet through all that he has shown such fortitude. The bravery, strength, & resilience of a true warrior. He taught me that having strength through adversity means that even if you lose every battle, like the Lone Survivor, you never quit fighting until you win the war. That in the words of "NDCQ," you keep "dreaming," keep "daring," & keep "doing." As Team Guppy has yet to be able to escape vaccine injury, we have no choice but to as Levi Lusko writes, "Run toward the Roar." God has indeed given us such incredible power in enduring such impossible pain.
Some days the HOPEISM in that simply takes my breath away.
October 31, 2011
Of Cinder blocks, Sweat, & Prayers that Never Quit.
This cinder block has history...
And a few decades of sweat (and most likely vomit as well) permanently embedded in its pores from those brave enough to endure its relentless torture. As you can see it has the stain of the blood from those it has mockingly pierced as a testimony that there is no merciful day when it comes to this cinder block. This kind of old-school training. By this kind of old-school trainer.
Matt hates this cinder block.
He hates the pain it inflicts. He hates how it laughed at him and blatantly told him the first day that he lifted it, that he's not as strong as he thought he was. He hates how it taunts him and reminds him that while he is getting stronger, he's not as strong as he needs to be. As much as he resents this cinder block, he respects it. He brings it in the house each night he is home as a sign of reverence for what it represents. For what it will help him accomplish. He respects it for who its trainer is. For who it has trained. As much as he hates this cinder block, he loves it because he knows if he gives it the due respect it deserves, he can conquer it. And if he can conquer it, that means he is one step closer to conquering his dream.
He knows this cinder block means change. That he must change. That he must mentally become as hardened as the cinder block. Harder than its trainer. That he must become one with the cinder block. Yet somehow still retain all that has made him who he is.
And as I watched him come home from a hard night of training with it, then putting it on his already bloody shoulder to run with it some more after dinner with his Dad, I couldn't help but be proud of him. I couldn't help but think how much he deserves this dream he is chasing. But I know all too well because of autism, you don't get things you want because you deserve them, you get things you want because you chased them. And never stopped until you caught them. Treatment, Recovery, that elusive Cure. I can't help but be impatient in wanting to already know if this cinder block will get this son where he wants to be. Yet I know even if it doesn't, his journey will not have all been in vain. At all. Just like if I never get that recovery for Brandon, the journey will not have been wasted. We've learned too much. Grown too much.
Patience is taught by this cinder block. In pain. With blood. With sweat. With endless working. While endlessly waiting. In his training, Matt has seen another wannabe come and quickly go because of this cinder block. Much like with autism, you don't come to this cinder block tired expecting ease. In fact, you don't come to it expecting anything at all, except more work. And often pain. You pick up the cinder block tired and do not stop lifting it, carrying it, becoming one with it, until it is tired. And much like how autism never tires, cinder blocks don't tire. Which is precisely why SEALs aren't ordinary men. Autism parents aren't ordinary parents. And SEAL training isn't ordinary training. Life with Autism isn't an ordinary life.
I wondered what words others who have trained with this cinder block and who have gone on to realize that elite dream would use to describe it. I asked Matt what the cinder block means to him in training with it. He said words like "brotherhood". "Blood determination". Much like our "Life with Autism" has set our family apart from being "ordinary" to being transformed extraordinarily, he wants the set apart brotherhood of what training with this cinder block represents. Much like no one knows what living life with autism is like except those in that brotherhood, he wants to be one with each of his brothers who know exactly what he went through to be one of them.
Life with Autism has prepared us for this cinder block. It has been our cinder block. Nothing has been given to us. Nothing has come easy. Before our cinder block of autism we thought we knew all there was to know about life. Then when autism hit, we were starkly reminded how we really knew nothing at all about life. Nothing that matters anyway. Our autism-block changed us. Everything gained, has been gained by blood. Sweat. Tears. We've had to work harder for every victory. Wait longer for any accomplishment. We've been more deeply crushed by every defeat. Yet much like with Matt and the cinder block, we've developed callouses so that we could endure more and more, bear heavier and heavier loads, press on harder and harder. We've known that to get where we want to be, we have to over come more than most. Endure longer than most. Tolerate what most cannot. Do what most will not.
Though Matt is the only one who holds the cinder block, each of us are being further trained by it as well. And even though there is nothing funny about the cinder block, I like to find humor in what it's training Matt for. The Navy SEALS have a motto that they use in their training that says: "The Only Easy Day Was Yesterday". I like to think that with our "Life with Autism" motto of "There Are No Easy Days"... -- Matt will have a slight advantage going in...
(smile)
But no.... I don't know the future... Every time I thought I did, it mocked me as the cinder block first mocked Matt, and reminded me that I know nothing.
I only know what I can see right here and right now through this blasted cinder block that sits by our front door...
And that is my son.
A man of faith. A man of determination. Of strength. Of indomitable will. And not of the ordinary kind of those things. Of the kind of those things that being a family living with Autism forges, which is much like what kind of warrior-spirit that cinder block forges for those who dare to pick it up..
This child who was raised by a Father and a Mother...who Never Quit. This boy who saw his brother with autism and seizures defeat death time after time...and who because of that will Never Quit... This teenager who excelled at all he did in part because of having a brother who couldn't do all he could do...and who because of that will Never Forget that and Never Quit. This man who will not be defeated by a bell at BUD/S... because he will Never Quit. This Christian who loves a God...whose plans to prosper him will Never Quit.
So much stands between my son and his dream.
He's come so very far.
He's got so much farther to go.
Only Matt knows how much he wants it.
Only God knows if he will get it.
All we know in the meantime, is of cinder blocks and sweat...
And prayers that will never quit.
HOOYAH!
October 24, 2011
On the corruption of my husband...
I'm not sure what made me think of doing this... I guess for an escape from the heavy issues I've been facing lately my mind must have needed a bit of levity. Or lunacy. Knowing me, perhaps both.
Either way, I found myself thinking about my husband and how he has changed over the years since I first met him. As he casually remarked this past Sunday, "Nothing about our life is normal..... We're not normal, our kids are not normal... Our dog isn't even normal."
But I remember when we were. My husband especially. When I met him, he was pretty normal. Perhaps too normal. His family was, is, a very typical Bible-belt Church-going family. They are pretty routine, live simply, follow the rules, don't make a ruckus. They, like Todd, are really good people with good morals and good values.
Which when I consider what I and my free-spirited with attitude self had to bring to the table in our marriage, I could kinda see why his family got together and took up a collection in an attempt to bribe him not to marry me.
(smile)
Coming from an Italian/German family - I was raised by Uncles who could have starring roles in any of the Godfather movies. And I mean that with utmost respect and admiration. I would always secretly tell my friends we had mafia connections and that anytime I wanted to I could send my Uncles after them. I think before I learned how to write my name in Kindergarten, I knew how to jew a vendor in English-town on the price of a piece of most likely stolen luggage. My Uncles made sure I knew the important things in life! Ha ha ha....
My family was big. Big fun, big laughs, big loud, and big 'if the food wasn't perfect at a restaurant, it went back and back until it was cooked right.'
Big opposite of Todd's quiet, to themselves, never complain about anything family. And I mean that with the utmost respect and admiration too.
It was just funny when we figured out how different our upbringings were. Ok so maybe not funny at first, but eventually!
I had bought Todd something that didn't fit. One day he was going to Wal-Mart and I gave him the bag and receipt and asked him to exchange whatever it was. He looked at me like I just asked him to kill his mother! He had never returned anything to Wal-Mart before that! While I, on the other hand, cannot count how many times while in Wal-Mart I had to stand beside my mother in horrified 'beam me away' shock as she would argue with a sales manager about why he wouldn't take ten extra dollars off a minutely scratched lawn chair (or any other item she wanted but didn't want to pay full price on) already on red-tag clearance.
Teaching Todd that he would not in fact die if he returned something to Wal-Mart was when my corruption of him formally began. Well, after the corruption of our Wedding reception. We had planned for everything, but not for the fact that my family drinks and his family doesn't. My family brought out the wine at the reception and it was like Moses had entered the room and parted the red sea. "Would all the hell-bound Catholic drinkers please go to the right of the room!" "Would all the heaven-bound Baptist non-drinkers please go to the left of the room!"
Todd and I still chuckle about that......
I like to think I brought a bit of insanity to his sane world.
And I know he's brought a bit of saneness to my insane world.
Life with Autism helped with that. It was hard for him to be serious when he walked in the front door and slid half a mile in a pile of poop I had missed during some tough "Leaky Gut" days my son with autism had.
He eventually quit turning red when Brandon would launch a glass jar of jelly out of the grocery cart and everyone would stop and stare at us like we were circus freaks begging for money on the corner of 5th and Main.
He eventually came to appreciate the fact that Brandon's humming, while mind-numbingly irritating, not to mention horribly embarrassing in public, did serve a purpose if we ever got lost in, you guessed it, Wal-Mart. We all knew to just follow the noise.
With the corruption of my poor husband came his sense of humor that I'm now sometimes jealous of. This man who was so serious, so proper, so reserved, was actually heard saying when we pulled up in yet another church parking lot to eventually not feel welcomed at -- "If someone says Good Morning to me, I think I'll punch them in the face!" This during a time when our son with autism refused to sit in a car seat and when made to would scream the entire way to wherever. During those years we lived one wrong look away from jail. Honestly, looking back, if we hadn't been corrupted into gaining a sense of humor and a deeper love of Christ, both at the same time, we wouldn't have survived. Our marriage sure wouldn't have. Who had money for marriage counseling? Who had time to read a marriage book? We had to learn to do things the old-fashioned way -- by digging deeper and dealing with it and not running away. By Hard Work. By Faith. By Prayer.
By Laughing.
Recently my husband made me laugh so hard I thought I was going to die. He had just gotten out of the shower and was drying his hair. He paused. Brought the towel to his nose and smelled it. Sure enough, Brandon had somehow peed on it and he had just dried his hair with it. Now you know you've been totally corrupted when you don't immediately jump and freak out like normal people would. No... not my husband. Well, not my new and improved corrupted husband. He paused another moment. When I asked him about why the pause, he said he was trying to decide if it was a recoverable incident, or a non-recoverable incident. When he explained that, I just exploded in laughter. I mean some aerobic, calorie-burning get the ben-gay out for the muscle strain laughter. To him, a recoverable incident would just be where he can wipe pee or poop off his hands or something and go on. A non-recoverable incident would be something that you couldn't. Like having to get back in the shower so your hair doesn't smell like pee all day.
Hence the newly coined term in our house, "Well, that was non-recoverable!"
Ahhhh, I'm so proud of my husband. I've done him good over the years. Life with Autism is teaching him well.
And speaking of dying laughing... We even have our gravestones planned out. That's how corrupted we are. All of us.
All four of us will be in a row... I, being the Queen Corrupter of the House, will be first with my Gravestone reading: "Finally, no more poop!" Todd will be next with his Gravestone reading: "Well, that was Non-Recoverable!" Matt will be next with what he always says after a "Non-Recoverable": "You just can't make this stuff up!" And Brandon, our dear sweet Brandon who has corrupted us all so very much in the very best of ways, -- his will read: "And everyone always thought I was the weird one..."
Yes, I am very proud of how each of us has changed, has evolved, has learned to embrace life and enjoy it to its fullest despite all the things that try to empty it of happiness.
I'm proud of the ways the good crazy in me has rubbed off on him, and how the good sane in him has tried to rub off on me. Though I think I've fared better in corrupting him. One day when I received a copy of a magazine one of my stories was published in, with a serious look on my face I handed it to him telling him he should share it at the meeting he was going to at church. He looked at it, then looked at me, rolled his eyes and said, "You do realize I'm a Deacon, don't you?" I laughed so hard. I just couldn't help myself. The magazine was the "Brimstone Bulletin". I had been published in "Mother's from Hell".
I know. I am bad. And my husband is so very good. And so very corrupted. Where once he was mortified by my antics, he now says, "Give me the list of churches, time to move to another one after that...."
Why... I bet one day at work he'll even be brave enough to say to someone bragging about their kids triple-play or winning home run on the state playoff game, "Well, my kid can out poop your kid!"
And then walk off smiling.
Ahhh, it's a dog eat dog world out there...
And I'm so glad we're Guppy's.
Choosing Happy. Living Joyfully. Following Christ. Wearing Camo.
The Guppy's
P.S. -- when I asked Todd for his permission to share this, he shook his head as a man knowing he had no choice, and replied: "You shouldn't be allowed on the internet!"
Ha ha ha .... I love you Todd! So very, very much...
October 21, 2011
Of pumpkin pies and biker chic's...
This is Tonya.
She's awesome. She's real. She's really quite amazing for a biker chic. That's what I first thought of her when I very first met her. Er, judged her. I mean really, what kind of clue would a single mom of five children have? Surely no clue at all. How wrong I was. She is one of the most amazingly clueful people I know. And not only her, but her kids as well. They're almost as amazing as she is. Almost. I now belovingly call Tonya my "BBC" - Best Biker Chic. Her photogenic qualities are phenomenal. I mean really, look at that picture. Who could pull off a face like that and have it still reflect her beauty? Ahhh, I love her. When "Life with Autism" gets....weird, bizarre, too much, I just look at that picture and it shows the "WTH" that I feel, and then I feel better, and then I laugh hysterically.
Yep, that's a true best friend. One who has an expression just for you. One who brings a Girl's Night Out to your house when she knows you need a night of laughter and lunacy - topped off with some Punkin-Pie-Chunkin to her surprise, and pumpkin pie in her face demise! (smile)
One who knows I lovingly call her my biker chic friend and who when at a parade saw some actual biker chic's, and asked if she could have a picture taken with them!
One who unknowingly to me, came into my house when I wasn't home, stole my Pumpkin Tree, put it in her house, then took a picture of it in her house standing beside it, and put it as her facebook profile picture the next day. Where the next day when I sat down at my computer and saw her profile picture, I noticed the pumpkin tree. I thought to myself, "How nice that she finally got herself a Pumpkin Tree - I knew my trend would catch on!" Then the more I looked at the Pumpkin Tree, the more familiar it looked. "Naaaaaa... it couldn't be!" So I went downstairs where my Pumpkin Tree is - er was - and noticed.... nothing. My Pumpkin Tree was gone. I'd been punked by that sneaky, sneaky, biker chic punk! (smile)
But that's ok. See this picture below? That's the picture that was on my facebook wall after a ninja stalker visit to her house when she wasn't home. That's my house. My dining room. And my dining room table and Christmas plates. And all of her beloved Gingerbread Men seated around it. Eating Ginger Snaps.
This below picture was her Fall Family Picture - featuring my Pumpkin Tree:
And this below picture was my "Christmas Family Picture" featuring all her Gingerbread men and me wearing her apron and her elf hat that I snatched as well:
Ahhh... everyone needs to laugh. Everyone needs someone who will make them laugh. Life is way too hard and way too serious to not have some levity. Some laughter. Some lunacy. Everyone needs to be a friend who will steal a pumpkin tree from you. Who will hold your Gingerbread Men hostage and demand a ransom for their safe, crumb-free return.
Everyone needs a friend that is rock solid as a Christian, but yet down right crazy as friend.
Who is true to herself, who is herself, and who is a sailboat encouraging you to be yourself, instead of an anchor weighing you down because of all you are not or never will be.
A friend who is stark raving mad crazy fun.
A friend who is bonkers.
A friend like Tonya.
And just like in the movie "Alice in Wonderland" - all the very best people are just that.
Thank you Tonya.
I know this is early, but you know how my life goes.
It's do this now while I'm thinking about it or I'll forget that I wanted to do it!
Happy Birthday
(November 11th)
October 19, 2011
My Ninja Stalking Scuba Mask Wearing Son
Life with Autism - our "other son" Matt
Ok, so in this picture is my son, Matt. I was in my office minding my own business, and the picture shows what suddenly popped in from around my office door, scaring me about as much as the empty water bottle with a fire cracker in it that he rolled in my office a few weeks prior! Always a few more gray hairs popping up with this boy!
This boy...
This boy who has "The Chronicles of Guppy: Parts 1-5" on a special shelf in the AP's office in Middle School. Not ever anything "bad" - just typical "Mischievous-Matt."
This teenager who despite all he went through in High School and friend betrayal and all the typical drama of High School life - still managed to stay true, stay focused on what mattered, and had a heck of a fun time doing it!
I credit Brandon with that. Because of him, because of our family's "Life with Autism," Matt matured faster than others his age. Not in an arrogant or better-than-you way, but in a "what really matters in life" kind of way. As a family we've struggled more, laughed more, cried more, endured more, - and thrived more. Because of all that, he has the mentality to do more. Be more. Achieve more.
This man who the Navy will be getting one day soon. Except if they see this picture.... ha ha ha. But in all reality, this picture is Matt. He is rock solid, not only book smart, but more importantly, life smart. He can figure out anything. He can get through anything. He knows how to laugh at anything and is embarrassed by nothing.
This son of mine who is serious in his attempt to be a ninja-stalking-scuba-mask-wearing-Navy man, but yet not so serious that he can't be silly and scare the s-poop out of his mother!
His mother who is so very proud of him, yet in a humbling way. In knowing that even with all my imperfections as his mother, - God has been perfect in protecting him, guiding him, giving him gifts that he has used well in Glorifying Him.
His mother who needs to learn to lock her office door when Matt's home!
Nah... what fun would that be?
October 18, 2011
Contentment
Life with Autism -- in pictures...
This is my son Brandon. It had been two weeks since his last Grand Mal Seizure. But today, the day after I was bragging about that "seizure-free" factoid on Facebook, -- he had a hard seizure. It took three of us at school to get him in my van, and it took my neighbor and I to get him out of my van once home and into my bed. (Note to Self: Always be prepared when your male neighbor may have to help you carry your son in your bedroom by putting your bra's away and not leaving them on the bed)
Brandon and I laid there side by side, just chilling together for a couple hours. He just likes someone close.... Hence my love for Country Music now. For the past fourteen months, Brandon and I have spent a lot of time chilling together on the bed, watching the Country Music channel...
Then, after a couple hours of that, he wanted to get up. It was the first beautiful day in Houston since March, so we went in the backyard. Brandon's favorite thing to do is jump on the trampoline. He knew he couldn't jump, he was still weak, but he loves his trampoline. So he just sat there in the breeze, in the sun, content. He didn't need to jump to be content, he just needed to be where he loved to be.
As I took pictures of his sweet serenity, I couldn't help but marvel at that. All my plans for the day were derailed. Yet again. The first chilly morning in forever when I could walk and not sweat on the Nature Trails, I didn't even get to go enjoy it! Matt had truck issues I had to help him with. Then when I was done with that, I got a call from Brandon's school about the seizure.
A mosquito buzzed into my world, and I dared to let that irritate me.
My sweet son suffered yet another seizure that rendered him unable to jump on his beloved trampoline, yet he still found contentment in just sitting there.
Oh how I love you my Brandon...
How for someone completely non-verbal, you say so very, very much.
Thank you...