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 18, 2012
Yet because of that same inability to regulate temperature, while he doesn't mind the heat, his body does. It doesn't tell him he's too hot, until he's -- too hot.
And then he has a seizure.
It's been challenging to say the least for this outdoor family to enjoy the outdoors. We just can't be out there for long periods at all because of the heat and the fact that there is no shade. We have a porch, but it's scorching hot concrete with no cover. Which creates another issue in that our son doesn't like shoes much. He tolerates them, but he'd rather be barefoot. And he'd rather walk on scorching hot concrete than grass -- er -- weeds.
So -- over the years I've kinda sorta let our yard go. There was really no sense spending time or money on pretty bushes and flowers when we could only spend 15 minute spurts of time out there.
Autism had other things it needed us to spend money on other than a covering for a porch. Let alone the total indulgence of being able to extend it as well! So that we could be outside. Call it our "summer home" out there. Tend to the pretty bushes. Plant pretty flowers. Dig another garden!
Unless you have autism in your life, it will be hard to imagine what the home of someone living with autism must be. To us, it's our refuge. The one safe place in the world where no one stares at us or our son. Our son isn't bullied in his home because he's different. His home is his safe place. Familiar place. Unchanging place. Where no one makes him try to fit in their world. Where he can be him in his world. It's where we can safely vacation with autism. It's our summer home, and our home away from home.
Over the years we've made the inside as "autism-friendly" as we possibly could.
Now -- now we've finally come to the place where we could focus on the outside of our home.
We found a contractor we liked, who was local, and seemed pretty darn good at what he does by the pictures on his website. And his name is Matt. Can't go wrong with a name like that, though I could be biased as my Navy-son's name is Matt.
We signed the contract and the work began.
The first day was spent digging post holes and setting behemoth posts that would bear the weight of the roof of the covered patio. My son Brandon, who this project was for, was upstairs in bed after 6 Grand Mal seizures early early that morning and into the day. As I would pass back and forth by the window I could see those men digging and picking their way through the concrete patio to set those behemoth posts.
Finally they were set.
When I saw where one of them was, I was worried about it being too close to the door, not for us, but for Brandon. When he gets excited, he runs and giggles and stumbles... I could just see him running for the door as his usual routine is, and not being used to a post being there, and run right into it.
So I asked one of the men why that beam had to be there and he explained it. It made sense and I said ok -- that is fine. I was just curious. Definitely not upset - there are bigger things in our life to be upset about! A post that I could make work by putting things around it to divert his path was definitely not one of them!
So - I didn't think about it again.
The next morning they came and worked.
Around noon I went out there to see the progress - and I noticed it.
The post was gone.
He moved the post for me.
All that work they did the previous day in chipping away at the concrete just to dig that hole to set that behemoth post in more concrete...
I asked the man about it - I wanted to reassure him that if that post needed to be there that was fine - I would rather worry about my son running into it than the ceiling falling on him! (smile) He said no, he talked to his boss about it and there was another way they could do it. They could change plans a bit and make it just as strong doing it another way.
I guess most won't realize what a big "wow" that really is.
In my world - people don't go out of their way to help us, our son. Not when I ask them to, and most certainly not on their own when I haven't even asked them to!
In my world I hear, "We can't provide the education he needs..." "We can't afford to educate his teachers in the way your son learns..." "We don't have any respite funding..." "We don't have any respite providers...." "We don't have a recreational program for your son's needs...." "We don't know why your son is having seizures..." "We can't cover this treatment that helps your son...."
In my world -- people don't move behemoth posts that they spent hours painstakingly picking through concrete to set.
In my world -- people don't go to bat for my son and contact their bosses to see if they can make an exception to the "norm" of how covered patios are built.
In my world -- my son's daily achievements over his daily challenges provide my "wow" moments more than people do.
But not that day.
On that day -- someone did go out of their way.
Someone other than my son did "wow" me.
You simply cannot imagine what it was like to see that post gone.
The total shock as I stared at where that post was and thought how he moved it for me.
The total amazement as I was reminded of another behemoth post and how HE died nailed to it for me.