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.
December 9, 2009
I've got better things to do than this...
I've got better things to do than this......
A Christmas toast to my autism friends, some of whom I've never even met....
~~~
I have a section in the little red spiral notebook I bring to church with me to write down notes, and admittedly when my mind wanders, titles of possible devotionals to write when I have the time....
When I have the time.
There's a future title right there.
(Better stop and write that down.)
Anyway, last Sunday at church, Pastor Bryan, "PB" my son Matt calls him for short, - used the title of this writing, to illustrate a lesson in humility - to demonstrate an "attitude adjustment" he needed pretty badly one day.
(Nice to know Pastor's really are human....)
He was called for Jury Duty - and he didn't like that.
You see, he had better things to do than that...
And while he was sharing about his crappy attitude leading to the surely crappy day of jury duty, and the eventual attitude adjustment he did later get, ~ my mind wandered...
I thought about myself, and the day I fully realized what autism meant for me, my son, my family, - our life. I could certainly relate to PB's, "I've got better things to do than this...".
I could so relate to not wanting to be called for "Autism Duty".
I could relate to being mad at having to interrupt my picture perfect dream of the picture perfect marriage with the two picture perfect (yet dirty) boys in the picture perfect house with the not-so-picture-perfect busted out window from a foul ball gone astray in the backyard.
Yeah, sometimes being called to do your 'duty' - rather sucks.
Especially when it's more than just an inconvenience for a day.
For me, my name has been called for "Autism Duty" each day since 1996.
How do you like those odds?
I don't thnk the "typpies" of the world, those without autism or disability in their lives, get that.
How easily an 'inconvenience' in their otherwise 'normal' world, affects their attitude so.
Shoot, PB even got paid $5 for his jury duty.
My autism duty thus far has cost me a few life savings....
Sometimes it bothers me, but many times it merely humors me not in a prideful contempt way, but in a humble, blessed way....
I could be like them...
(smile)
Those 'typpies' whose world is just shattered by a little piece of mail that interrupts their life for perhaps a day or two.
Yeah, I'll call your Jury Duty and raise it with every 45-minute toilet routine duty with a 15-year old who can't do that on his own.... or the wonder of whether all your efforts will pay off and your child will recover and he would get to experience everyday milestones like, oh, marriage, children, etc...
I'll call your your having to take out yet more annoying time once in a blue moon trying to get through to someone on the phone to figure out what bus to take to even get to the courthouse to serve that Jury Duty; and raise it with having to do that daily for every service, support, school, and insurance question you have in caring for your child with autism.
Yes. Serve a day, week, or month in my Autism Duty - and you will nodoubtedly fold.
I think it was probably, hmmm, the hundredth stupid-doctor appointment I had where all they said was it's just autism - that I probably screamed, ok cursed, "I've got better things to do than this!
Or maybe it was the thousandth poop mosaic I had to clean from the walls, sheets, floor, - child, that I KNOW I yelled out to God in the heavens, "I went to college to DO better things than this you know!"
But alas, one day it finally hit me, that given the circumstances that I don't seem to have a cure for at the moment, there's nothing I'd rather do than this.
There's nothing more important or rewarding, than caring for a child such as this.
One that has brought more love than a heart could possibly hold, more joy than a mother could ever deserve, and more knowledge about what really matters in life than a mind could comprehend.
There's nothing better than being a part of such a tight-knit yet scattered across the globe-community such as this.
Knowing you have friends that you have never met, who are out there only a click away, who will stay up all night with you researching something that you can't figure out yourself.
Walking side-by-side at a rally with strangers who are in many ways closer to you than your own relatives...
I do admit though that some days are tough...
I am like PB and grumble about my "Autism Duty".
I do admit that if there were excused exemptions from serving listed on the back of my Autism Summons, I would have used them.
Just like I'm sure many of you would.
Many of whom, I know only by e-mail...
JudithNeverSleeps@ -- I know that as a single mom raising a child with autism and no help -- you have better things to do, most of them starting with a nap I'm sure!
AutismTookMickie@ - As you fight to get him back, I wonder if you too had better things to do...
AutismMommie@ -- That says it all. I wonder if you had a high-paying corporate job before your Autism Duty led you on a new career path.
ARDMomAngryPants@ -- Ahhhh, my faceless soul sister! I can so relate....
SpecialEdMarine@ --A true Marine Seargent who at one time has defended our country, and who is now defending children's rights to an appropriate education. I do salute you David.
Keys2UA@ -- Those who work tirelessly searching for those keys that will unlock the cause and pave a way for the treatment and cure - of autism.
NeverSayUncle@ -- Oh how you personify every one of us who at one time wanted to quit because the world just seemed too stacked against us and our children. But we don't. It's not in our nature. We will never cry uncle! We will never stop fighting whoever or whatever is in our way - for our kids.
HuntersHope@ - reminds me of that when I see that mom's posts. Hope is each of our child's last name. There is hope, and we must cling to that hope daily.
Just like PB was blessed at the end of his day by meeting some people who touched his life and changed his attitude, so too have each of you changed my attitude, touched my life and have given me hope.
I thank each of you for that.
I thank God for that.
For giving me what I needed, not what I wanted.
So, for everyone out there in Autism-land - and for everyone who whether 10 years ago or 10 minutes ago received their "Autism Summons" and has been or is about to - serve their "Autism Duty" and who thought or will think, "I've got better things to do than this" ---
Raise your glass of spiked Eggnog with me...
This Christmas toast is for you.
Here! - Here!
Merry Christmas everyone...
Proudly serving alongside each and every one of you,
juror number 01031968
(written by Michelle M. Guppy)
1 comment:
What a powerful message! I have a friend, Kim Adams, who has a non-verbal austistic son who is six years old. He is non-verbal and functions on an 18 month old mind, therefore, he too has poop incidents quite often. All I can say is that it takes a special parent to do what you do and there is a special place in heaven for you. I certainly hope that you have a support system to help you through those severly tough times. I try to be there for Kim as much as I can, whether it is to babysit or just provide a listening ear or a glass of wine. I wish you the best!
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