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.

July 29, 2013

Go. Do. Be. A journey of renewal for me.

I so want to capture the beauty of our Silver Anniversary trip to Maui with poetry.  I've always envied those who can write eloquent poetry.  The real kind with proper structure, grammar, etc.  The kind of poetry that has all the things that make poetry proper.  Famous.  Awarded.  Sally Meyer is someone whose poems have touched my heart in that her poetry is about her son who has autism.  In those first few years of autism, it was her writings that kept me breathing.  Though I didn't fully appreciate her words then, that she was a mom of a son who had autism and could put such beauty to the hideous disorder that was devastating my son, our lives, our home, our sanity, - was the hopeism I didn't have a word for then, but nevertheless clung to.  Another modern-day poet whose words I have been touched by are those of J. Christopher Wright.  He uses poetry to illustrate his wood carvings.  His words as moving and magnificent as his masterpieces.  But alas, I am not them.  I am me.  My thoughts, though as deeply felt as their writings are moving, are not proper poetry.  My writings aren't even proper either, more an editors (or English major's) worse nightmare.  For one, not much about me since "Life with Autism" can be called proper.  So why should I expect my writing to be!  My writing is as crazy and chaotic as my life is at times, and I have to chuckle at that.  Autism has taught me many things, one of which is to not compare.  Not my life with someone else's, not my kid with your kid.  To not compare my writings, my body, my anything, with anyone else.  At times I do find myself wishing, comparing, and I suppose that's normal.  It's human nature to do that.  I just have to remember to not stop and stare.  To not dwell on the gifts I haven't been gifted with, the size I don't wear, that despite doing many of the same things others are doing my son has yet to recover.  But to instead change what I can, do the best I can for my son, and do what I have the ability to do, in the way that I can.  That's one of the things I love so much about Brandon, and one of the most important things he's taught me.  Not everything has to be perfect.  His life is a kind of poetry that follows no rules.  Needs no words.  Has imperfections.  Yet is so beautiful.  So deeply moving. 

I guess the reason I so want to describe our time in Maui with poetry, is because everything we saw in Maui was poetry.  The sights, the sounds, the experiences.  I saw poetry way below where people live in the coral reefs that were teaming with life in some of the most brilliant colors, sizes, shapes, and forms.  I saw it on the summit of a freezing cold mountain looking down through the clouds at the view below.  I saw it under the bridges where we climbed down steep cliffs because we wanted to witness God's beauty up close and not from afar.  I heard it in the sound of nature's wind chimes in the peaceful clanging of bamboo stalks in the bamboo forest as the wind would get tangled in the tops of the stalks far above us.

For me, in Maui, so very often poetry in pictures was the reward of patience in waiting for the perfect wave to break and clicking the button at just the right instant.  So very often in my day I find myself hurrying.  Hurrying to finish chores before Brandon gets home.  Hurrying to cook dinner.  Hurrying, hurrying, hurrying.  It was so nice to let nature be in charge and demand that I learn once again how to slow down, stand still, and savor.
Poetry is sometimes not something you sit and read, but rather a place where you go to feel it, - then perhaps are inspired to write it. Another of my favorite poets is Marshall Ball.  He is a young man who has significant disabilities.  Through a painstaking process he is able to put his thoughts into beautiful words of poetry.  In one of his books of poetry he shared about the meaning of "Thoughtful House" which was for him a place where he would go that was so very special to him.  In that place he felt so very alive and was moved to write things.  Each of us should have that place to go, whether if only in our mind.  To be inspired, to write our own poetry, though perhaps not ever on paper or in a book as Marshall and others can.  A place that renews our appreciation of life, of God's beauty.  A place that does for you, what Maui did for me.

I've seen beautiful flowers before, but there, in the absence of autism, seizures, stress, demands, I was free to just focus on the beauty of God's creations. Appreciate it. An ordinary flower became extraordinary.  That's what poetry does.  It brings out extraordinary emotions from simple ordinary words. 
It allows you to imagine the unimaginable.  If someone were to tell me about a tree with bark like a rainbow, I would assume they were speaking of something out of the movie Avatar, not something from real life.  Yet there they were, right alongside the road to Hana, trees with rainbow bark.
I think why this trip has moved me in the way it did, has me thinking about beautiful poetry, - has something to do with a quote from the movie Eat Pray Love.  
“I used to have this appetite for food, for my life, and it is just gone! I want to go someplace where I can marvel at something, anything.”

I think I let my "Life with Autism...and Seizures" take a bit too much from me these last few years.  I can look back and feel good about how I have done my best to stay focused, be positive, choose happy...  Keep the faith.  But those are things I did for my son, for my family, for my sanity.  Not necessarily for me. I needed something radical to do as the quote says, in allowing me to once again truly marvel at something. I needed to feel a sort of healing like that which I was praying and working so hard for, for Brandon.  I needed to once again feel the downpour of the bigness of God washing over the smallness of me!
I needed to be reminded through watching the wonder in Matt's eyes as he stood in awe on top of the clouds looking down through them, that God is doing that very same thing as he looks down upon me.  I needed the reminder that the safest place for me in this uncertain world, with autism's unpredictable future, is in God's shadow where all I can feel is His power and all I can see is His Glory.  I needed the reminder that when mentoring others or through any type of leadership I provide, that I am encouraging them to follow Him, not me.  See Him, not me.  Applaud His Glory in my life, not me.

Everything you’ve ever wanted is on the other side of fear.
~George Addair
I guess we all at once time or another need to go on our own journey of renewal.  Fight a battle for ourselves, not anyone else.  Accomplish something for us.  Not always just for autism.  For me, the preparation for our trip and the conquering of fears has been long overdue.  These were fears I could overcome, which I'm thankful for.  In my "Life with Autism...and Seizures" there are so very many fears that I can do nothing about.  Have little control over.  No matter how much faith I try to have, I still fear for Brandon's future once I'm gone.  No matter how many positive thoughts I think, I still think that Brandon will have a seizure and fall if he's out of my sight or reach for even a moment.  I can feel proud of all I've accomplished in autism advocacy, but in the process I seemed to have forgotten about accomplishing anything for me!  This trip was a chance for me to change that.  To go, do, and be.  To overcome and reclaim. To renew me, and not just our marriage vows.  Getting in cardio-shape the first order of business!  Spurts of seizure panic do get the heart rate up, but it doesn't prepare you for five mile hikes up or down 800 feet inclines, no matter how gradual they may be, that some of the trails would be.  Learning how to lap swim, properly, so that I could swim laps for aerobic endurance. With back issues and no ACL in my knee, running was out.  Swimming the best exercise for my situation.  I had to learn to swim properly to get Scuba certified or even to just snorkel and swim confidently in the middle of the ocean in the middle of nowhere!   I am very comfortable with being at sea level, but for this trip I would have to deal with the fear of heights in driving up a mountain that was 10,023 feet above sea level.  And walking around up there!  My dear son did little to alleviate that fear when he would purposely stand on the edge of cliffs that had signs reading: "DANGER:  FATAL CLIFF."  To be able to get Scuba certified or go snorkeling along the reef of that underwater volcano crater, I would have to overcome an uncontrollable gag reflex.  Avoiding the things that trigger that in the dentist office is one thing, but to prepare yourself for not letting it stop you from putting a snorkel in your mouth to explore life below sea level was a whole other preparation.  One where I found myself throughout the day staring down that blasted snorkel sitting on the table mocking me as I would pick it up and force myself to tolerate it for 5 seconds, 10 seconds, 15 seconds, before gagging it out.  It did stop me from becoming Scuba certified, you can't be 100 feet underwater and suddenly gag out your regulator and hope to make it to the top slow enough to not burst your lungs yet fast enough to not drown!  But even in defeat, I can count myself victorious in that I was able to snorkel.  I swam with sea turtles and felt like a Mermaid.  I perfected having the biggest smile in the world while still being able to keep the snorkel in place and water tight!   It was one of the most exhilarating experiences ever.

In the panoramic picture below, it still amazes me that I hiked down, and back up, that trail that you see.  When you are standing at the lookout point from where this picture was taken, all you see are specks of people below.  I was one of those specks.  I truly marvel at that.
I have fought and won many battles for Brandon, but it's been a long time since I've fought one for myself.  In the picture below, those hands aren't held high in praise as many other pictures reflect, but rather in victory.  I had a moment of pride not for a victory or accomplishment in Brandon, Matthew, or Todd in all the ways they excel at work.  But for me.  Plain. Simple. Me.  My husband kept cautioning me as I practically galloped down toward the crater, that I would have to hike back up.  The further I went down, the further I would have to hike up to get out!  He kept putting emphasis on the up.  Me with my stress fractured back, no ACL in my right knee, and with a pulled tendon in my left foot from swimming with fins in training before our trip!  But I didn't care.  When I fight for my son it's because the stakes are too high not to.  Likewise with all those hikes and trek's down steep cliffs to waterfalls, the view was just too beautiful to not attempt it.  My desire to go, be, do was simply greater than any common sense, physical limitation, or fear.  The climb back up was hard, I took tiny baby steps because the air was thin and the incline steep, but it was worth it.  I did it. I did something for me that had absolutely nothing to do with autism. 
Even if I could have accomplished nothing but being there, the experience was more than poetic.  From our condo I could sit in the beach chair and watch the breathtaking sunsets and be lulled to sleep by the sound of crashing waves.  I don't even know how one could put words to such things.

I think for some things, there simply are no words.  Just feelings as when watching a sunset.  Or sounds when listening to the lullaby of crashing waves.  Clattering bamboo.  The silence of a rainforest interrupted only by the sounds of the exotic creatures it shelters.  Poetry is seeing the beauty of a volcano, yet appreciating its power and potential destruction.  It's standing on the top of the world one day while knowing that just the other day you were swimming below sea level, in another world.

I think this trip has shown me that it's one thing to read poetry, but a whole other thing to appreciate poetry in the beauty around you and in the emotion it evokes within you; and in how you become a poet in sharing those feelings with others.  For me, plain and simple.  Chaotically.  Imperfectly.   I realize now that my HOPEISM has been a sort of poetry for me in the expression of my faith. It's been everything poetry is.  Joyous and sorrowful.  Beautiful and ugly.  It's been hopeful and determined in being in such relentlessly heartbreaking situations and yet still able to see and believe in a healing we have yet to experience.  It's been so very many things, but the most important thing it's been, is real.  Transparent.  Honest.  Brandon has taught me that as well.  He doesn't know any other way to live.  Even on that journey to get away from autism, it is because of all that I've learned from my son who has autism that it has touched me so deeply.

I think why I love poetry so much is that it seems to be the only place where acknowledging defeat, despair, or doubt can be made into a beautiful thing.  Everyone seems to only want to hear about the "Don't worry, be happy" mentality of life.  We don't want to acknowledge that we sometimes hurt.  That life isn't always fair no matter how good you are, how much good you do, and how many biomedical interventions you've done.  Sometimes things still suck.  Sometimes your child still isn't recovered.  I was so reminded of that after we got home from our trip of a lifetime.  We were thrown right back smack-dab in the middle of autism and seizures.  Thankfully we had a few days grace period, then seizures began again, nearly daily, and we were once again reminded of why we so needed that vacation in the first place.  But even in that, there was beauty.  Strange, bittersweet, beauty in the poetry of heartache and hardship.  I'd like to think that I've been most moved by the good times, but I wasn't.  That my most precious pictures were the perfect ones.  They weren't.  This picture of the Pipiwai Trail is a poem that illustrates my "Life with Autism" in how it has been difficult to navigate, yet not impossible.  The tangled mess of autism and seizures making the journey hard, but not impossible.  That's how you know you've written a really good poem.  When it's about darkness, yet the reader goes away with light.  I want to be that kind of poet in life.
Some of the greatest moments on that trip were those that came from pursuing the hardest goals.  Climbing down a slippery slope.  Climbing back up an even more slippery slope.  Pushing myself to my limit in hiking, in snorkeling, in not panicking on the drive up or around steep mountains and cliffs!  Likewise all of the best moments in our "Life with Autism" have been in seeing Brandon overcome things we felt he could no longer overcome.  Seeing things come to fruition, things we fought so hard for, as in his schooling.  Knowing we haven't given up on this child who an entire medical community has given up on.  Who an entire society ignores.  Perhaps that's why I'm so moved to share about this journey.  We know what it's like to live in isolation. We know what it's been like to want to escape, yet can't. We know the bitterness of defeat.  But even more than that, we truly know what it is to appreciate a victory.  An achievement.  A rare opportunity. 

I've been so blessed to have been given the opportunity to see and experience such poetry.  Perhaps that was God's answer to the question I have always asked in why I can't seem to write the poetry I try so hard to.  He used this trip to show me that it's ok.  I can just enjoy the poetry around me that he wrote. That he created.  The poetry of life that each of us are a part of.  That humbles me.  How each one of us in the good, bad, or ugly of our lives, are part of God's poem of life.

I think of myself sometimes as Winnie the Pooh, I guess.  A fierce warrior when it comes to fighting for someone else, yet too quick to short change myself when it comes to challenging myself.  This trip was the quote Christopher Robin said to Winnie:

"You're braver than you believe, and stronger than you seem, and smarter than you think.”

We all are.  All of us who buckle up on this crazy, mad, wonderful poetic journey of life and who are thrown into living it as my friend says, "A hundred miles an hour with my hair on fire."  I'm so thankful to Bill, his family our dear friends who we met up with while in Maui...  At the largest waterfall on the island at the end of a very long day of climbing and driving, I was content to sit on the boulder and watch everyone go under the waterfall.  Bill said to me, "You aren't going to have come all this way and not go stand in that waterfall!"  So I got up and climbed over yet another set of big slippery boulders, and stood in that waterfall.  It was one of my most memorable moments of that trip!

As much as this trip was my opportunity to go, do, be, -  it was for both Todd and I to go, do, and be as husband and wife and not caregivers giving shift reports. 
It was a rare opportunity for us both to be Matt's parents.  At the same time.  In the same place.  No tag-teaming as has always been the usual. 
To be there and get to witness the total joy in Todd's eyes as he was Scuba diving with his son, experiencing these first time wonders with his son, it was simply priceless.  So very often in our tag-team parenting, I could only see pictures of or hear stories about their adventures together.  But to get to be there and see them together, take the pictures of them together, be a part of the story, it was precious.

To be able to go on a this vacation with our son and our daughter-in-law as we renewed our forever and as they are just beginning their forever, was such a blessing.  With our "Life with Autism" and their "Navy Life" - we might not get many opportunities such as this, and so we absolutely cherished this one.

I can still hardly believe that I went to Maui.  That I was fearless.  That I did what I thought might be impossible for me to do.  Most importantly, that I had the opportunity to truly marvel at something again.  I saw the most beautiful poetry and the only way I could respond to it then, and now, is like this:

To God be the Glory

~ ~ ~ ~ ~ ~

Dedicated to each of my autism friends who have endured reading this.  You are some of the most beautiful and most favorite pages in my life's book of poetry.  Your support.  Your prayers.  Your encouragement.  Your smiles.  Your faith.  Your help.  Your humor.  Your wisdom.  Your caring.  Your sharing.

To each of you ---

Keep Dreaming.

Keep Daring.

Keep Doing.


And to Happy Someday...  Mahalo for giving me an opportunity to marvel again.


Matt Guppy said...

This was an amazing trip and awesome article. You rock mom love you

Matt Guppy said...

This was an amazing trip and a awesome article, you rock love you mom