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.
June 21, 2013
The drool that broke the fish's back...
My dear friend Tonya posted on her status yesterday that she was going to compliment herself on something each day. So often she found herself only seeing the stuff she did wrong, that she felt she needed to remind herself of some things she does well. I really admired her for that. I too, find myself getting so down on all the mistakes I've made, all the things I can't do.
So I'll start off this post by sharing how many autism'ism's I've survived. The big ones are the seizures. The one that left Brandon laying face up in the backyard with the sprinkler sprinkling water in his open mouth from having had a seizure. He had literally drowned and Todd had to give him CPR to revive him from that. Then there was the fall from Brandon standing on the deck of our above ground pool, straight backward onto the concrete porch below. And somehow survived without a scratch or concussion. I've survived more of Brandon's seizures than I can count, stares from society, staples in his head, stitches on his face, stress, and shattered teeth.
I've survived a lot. My husband and I have been through it all. All of my friends in the autism community have. It is unimaginable the daily stress, challenges, and obstacles of raising a child, youth, and now adult who is severely affected by vaccine injury. Er, sorry, - autism. Insurance battles, trying to find a doctor, trying to get services, trying to pay for everything that is out of pocket and never ending. School. What opportunities are out there for fun for him. What to do after school. What to do when you die. Where to find recreation, respite, relief. Then in your spare time, advocacy, advocacy, and more advocacy.
I'll say it for me, for all of us, -- it is amazing what we survive in a day's time. Let alone the endless weeks, months, and years we must battle on for the sake of our children's health and future.
We survive the unsurvivable.
But what knocked me out today, this morning, was drool.
Of all the things we must battle with my son's autism -- seizures, how to communicate with him, GI Disease, PANS, yeast, yeast die-off, humming, humming, incessant humming at times, etc --- of all those things that are so all encompassing -- it was drool that reduced me to a blubbering, screaming idiot this morning.
In running errands yesterday to get last minute camp things for Brandon, I bought him new black "Camo-shorts" and a matching black shirt. Of all the ways he is deemed "not typical" -- I at least always like him to "look typical." So there we were this morning, another late morning at that.... finally dressed, supplements down, new clothes on, out the door. I'm driving and notice long streams of orange drool coming from his mouth. During times like this, many times when my flesh wants to scream to me that there is no God, I was reminded that there indeed is. Todd and I had switched cars today so that I could have his truck to drop Chevy off at his breeder's "ranch" for him to have his annual vacation from us! Had we been in my car, Brandon would have been too far back for me to reach in the vain attempt to spare his new black shirt from orange drool. And I know I believe in God -- but I am still human and my flesh, when faced with overwhelming stress at times, screams quite the opposite.
But it didn't matter that I could reach him with the napkin I was thankful to find in his car. The damage was done. The entire way to school I would look over at him and catch a long stream of orange drool a few seconds too late. Yet just in time to wipe so that one side of his face remained flesh colored - and the other side a "you didn't quite rub in that rub-on fake tan cream" look.
I know I must be close to my breaking point in needing a break, when I lose it over drool. Not wanting to scare Brandon, I rolled down my window and between sobs and sobs and more sobbing - I pulled over and screamed out the window loud, louder, and loudest. To add insult to injury, Brandon found all that quite amusing. Sitting there laughing with a big smile of orange goo all over his teeth as another big orange waterfall was about to happen.
What's even more insane is that his laughing, made me laugh. So between sobbing and screaming, I found myself laughing. I truly am a stark-raving-mad-laughing-lunatic. Truly.
The insanity that even Brandon's wardrobe is affected by autism. Most every shirt Brandon has, has some sort of stain on it. Most recently, orange stains from one of the myriad of supplements I must give him to help heal him. No matter how I give it, how much I "wash it down" with other food or drinks -- it comes back out with his drooling. There is not one aspect of Brandon's life, or mine, that is not affected. So very many days we show up at school with him looking like a slob.
Like today. By the time we pulled up at school, I had taken his black shirt off, only to notice that the white t-shirt under it had dried-on orange stains as well.
That new shirt lasted all of a ten minute drive to school. Couldn't even have that spared from autism's claws.
The poor therapist came out to get Brandon and I was still sobbing. She asked what was wrong because I probably looked like someone died or something. How, how do you explain how it was Brandon's orange drool that tipped me over the edge? Reduced me to a blubbering idiot?
Who, but us in our own community, would ever understand that?
Society, as my autism friend Lisa Goes eluded to in her own way, will only ever see this about us and our lives:
"Poor Michelle, so upset over drool... Look at her, she lives in a two-story brick house, they drive big cars, and her husband makes good money. Brandon gets to go to camp and she and her husband get to go on vacation this year.... Poor, poor, spoiled pity-party dear..... They should just pray and be thankful....."
I'll never understand that, and those outside the autism community will never understand how orange drool was the straw that broke this fish's back.
But now that I've had a few moments to compose myself, and thanks to blog therapy to tip my scale back closer to sane than crazy, -- I think I do have a solution. Instead of not giving him that supplement he needs anymore, I can just buy all new clothes in orange. Perhaps some with stripes to break it up. Maybe some shirts with some numbers on them too.
It may not solve the drooling problem, but it'll best illustrate to society the prisoner to autism we often are...
And if I was reduced to feeling the way I did today -- how in the world does Brandon feel so very many days of his life, as he is the one who must live with pain that he can't even show us where it hurts, with words he wants to say but can't, with things he wants to do but doesn't know how?
To the HOPEISM that one day my sweet, sweet son will break free from behind those bars of autism.