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.
January 8, 2010
How "Heart of Sailing" has touched our family's life...
To Captain Dave McCabe and Guy Hoover,
You asked for a testimonial about our experience with "Heart of Sailing", -- but I don't know if I can come up with a short enough one to use. I have thought about what our experience with "Heart of Sailing" has meant to me, to us as a family, to my son Brandon who has autism, - and it's more difficult than I thought it would be. And I am someone who writes inspirational stories, and I can't even find the words....
But I remember one time talking with a Grand-parent who was discouraged with society's reaction to his Grand-son, who due to his disability needed to be in a wheelchair. He was burdened by their cluelessness as to what it takes for to care for him. He was even more burdened by how those who stared at his Grand-son totally overlooked what a blessing that sweet child was. He said trying to explain to others about his Grand-son was: "Like trying to explain color to a person blind from birth...".
I remember being touched by how true that statement was.
Because you can't.
You can't explain to someone what it's like to have a child with a disability and all aspects of that, good or bad.
And I can't explain to you, how such a simple sailing trip, touched our lives so.
How do you explain feeling 'special' in an ordinary kind of way?
How do you explain how when you've NOT felt special in any way in many aspects, that you sorta lost hope that you COULD feel special? That you forgot HOW to feel special?
Even with 'disability benefits' from programs, you are discriminated against because you make too much, not enough, or you die waiting for your name to come up on a list!
So many times your child can only feel special and enjoy a program for children with disabilities, if they meet a certain criteria within that disability! You have to be toilet-trained, be a certain age, have only a certain disability, etc.
Who knew that having a disability was so discriminating in itself!
So, it's in the safety of our home, where we feel the most blessed, the most special. Outside those 4 walls, that is where society slams you with how 'different' you are. How 'different' your life is.
And how HARD life can be sometimes!
And as far as inclusion principles have come, people first language has evolved, accessible programs have expanded, -- for us many things remain the same.
People are still going to stare when our son hums and flaps his hands.
It's still not going to be thought 'normal' when our 15 year old licks the handle of the grocery cart.
It's still not going to be easy to go to the mall with all the over-stimulation and explain to someone in the food court why our son grabbed their drink and took a swig of it.
It's still not going to be stress-free for us to do those things anyway, despite it all.
So perhaps that's why we were so blessed by your program.
For once, our family was just like anyone else's.
For once, we were able to enjoy an experience typical families can experience all the time.
For once, we were included in a program - didn't matter what disability, no complicated forms to muddle through, no waiting list to put our name on, and no financial guidelines to be disqualified from.
For once, we were a part of society and didn't get stressed-out in the process! If we were to brave a sailing expedition on a typical charter sailboat, we would have to be prepared for well-meaning stares, and disciplinary glares. In that no-one would understand why we had to literally carry our son on the boat because the step up was 'weird' and 'scary' and 'different' to him. Someone would have probably thought about calling 911 because to the average on-looker, it would seem we were trying to kidnap the child as we had to literally drag him on the sailboat. Not to mention that we couldn't have even afforded a private sailboat to enjoy that experience alone, to avoid having other people on the sailboat that would just be too over-stimulating to our son.
And most importantly, for once we were around others, like you and Guy, and didn't feel judged, pitied, or weird!
We just felt like 'us'.
All together, all able to enjoy an ordinary experience as an ordinary family!
And we felt humbled.
Humbled that you both would give up your precious time, to allow us that experience. Not having a clue what that experience would mean to us! Not getting a thing in return except for all the gratitude in the world from us.
So much in our lives has been difficult - and that experience, that day, gave us Hope! It was our therapy! Our chance to step off the Autism roller-coaster for a breather!
I hope you can see in the picture below - how priceless that is to us. We have rolls and rolls of film of the typical blank stare of autism. We have precious few pictures like the one below, that truly captures our son, Brandon. And not his autism.
You cannot know how priceless that is.
Another of my favorite quotes is this:
"Living with a disability is difficult. Acknowledging this difficulty is not a defeat, but a hard-won accomplishment in learning to live a life that is not disabled. The difficulty for people with disabilities has two parts --- living our ordinary, but difficult lives, and changing structures, beliefs, and attitudes that prevent us from living ordinarily." Nancy Eiesland - author of "The Disabled God".
That is what you have done Captain Dave with the Heart of Sailing program. You have allowed our family, and our son with autism, to live that difficult life -- ordinarily for once. And through your program and those who are a part of it, you are changing structures, beliefs, and attitudes.
You both will forever be in our hearts.
The Guppy family
Todd, Michelle, Matthew, Brandon