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.

July 17, 2013

A conversation with my son...

My son Brandon loves to climb.  I like to think it's how he gets closer to God to feel His presence, better hear His voice.  I know with all that is in me that Brandon truly does see Angels and talk to God.

So last night after his third Grand Mal of the day, and second fall that thank goodness didn't result in anything busted out, open, or broken, I had a heart to heart talk with him.  Typically after such seizures he is knocked out, eyes closed, asleep.  But yesterday he was knocked out, but awake.  After his daddy lifted him in bed and we got him settled, I could do nothing but just lay there beside him,  hold his hand, and cry.  There was no need to rush to the computer and look up yet more seizure research.  I've read them all.  There was no need to call a Neurologist for more medicine.  No medications work.  There was no need to even just sit and bang my head on my desk in thought about what I could do, what more I could try.  I've banged my head more than senseless over the years.  I am thought-out on what more I could do, what else I can try.  I call myself a "Thinking Mom" because I believe in the revolution they wish to create, are creating, --but quite frankly I'm tired of thinking.  Where seizures are concerned, I'm all thought out anyway.

So all I could do is lay there beside him and cry.

He laid there awake and I would look at him and just marvel at him.  At all he's been through. Yet I was the one crying.  How absurd.  So then I started talking to him.  We have had some really good heart-to-heart talks over the years.  But this one was one of the more raw ones as far as my side of the conversation was concerned.  Not that there's a part of the conversation that's his, unfortunately.  So, I just point blank told him I didn't know how to help him.  I apologized to him over and over.  I told him we have spent all we had to spend, we've tried everything we know to try, we've done all we know to do.  I told him I didn't know what else to do for him.  I didn't know what to do to prevent the seizures, or prevent how they sometimes cause him to fall and get hurt.  Unless we moved to the moon, there would be no way to seizure-proof any house we lived in.  That unless he wanted me to bolt a helmet to his head, there would be no way he would tolerate wearing one.  Just raw honesty.  I told him how much I loved him and how much I wanted to help him but just simply didn't know how.  I told him I was at such a loss.  I wanted to apologize for failing him in that regard, or at the very least apologize for not succeeding in seizure cessation.  But I knew that failure can only happen if you never try.  You can try and not succeed, but the only way to truly fail is to never try.  I at least was successful in knowing that.  And in trying the very best I could.  And then I asked him if he would, next time he was in the presence of his Angels if he would maybe ask them for me what more I should do.  I asked him if he would when in the presence of the God I know he sees, if he would maybe ask him to help me and his doctor to help him.  I know that my prayers and the prayers of so very many have been answered in us finding the doctor we now have, but that doctor has a tough case on her hands with my Brandon and I begged Brandon to please ask God to impart some divine wisdom to her.

It was a really sweet time of just laying with Brandon and being so very open with him.  He had been at camp, we had been on vacation, -- it had been a while since I had some time to just be with him.  As always, so very hard that it was only because of the seizures that I had such a captive audience in my non-stop, non-quiet son with autism.  But there he still laid on the bed beside me.  Perfectly still.  Perfectly quiet.  Perfectly awake.

My very own perfectly created son.  His innocence, transparency, and purity as breathtaking to me as his autism, seizures, and GI disease is maddening to me.  To live in "Life with Autism" is to try to find that balance between both.  How to eradicate one without losing the other.  Understanding that will never be understood by typical parents.  I am Brandon's mom and I hardly comprehend it, let alone understand it.

After a while I thought about the pictures above.  I took them on the Haleakala Summit just before sunset.  We were standing on the top of that 10,023 foot mountain looking down at the clouds.  Watching the sun set down through the clouds was surreal.  I thought then, how much Brandon would have loved that.  Being so very high.  That's his main goal when outside, trying to climb as high as he can.  A time or two it's been his main goal inside as well.  We would often find him sitting on the top shelf of his closet.  Standing on counter tops.  Once, we found him walking across the half wall on the upstairs balcony that leads to a straight drop to the downstairs entry way.  We now have bars across that.

I know now why Brandon loves to be up high.  I know that I truly felt God up that high.  What it must be like to be God looking down from the heavens through the stars, through the clouds, at his creations below.  I said a prayer for Brandon, and all the Brandon's of this world.  I know God hears my prayers no matter where I am, but I thought it couldn't hurt to be a bit closer to him so they maybe get there faster!

I don't know.  I guess that experience in the "House of the Sun" as it's called - brought out a new vulnerability in me, and why I was just so open and raw with Brandon in our conversation.  Truly, it is not anything that I can do, it is all about what God can do. Up that high, I realized without a doubt who is in control.  And it wasn't me.  God is in control.  He can do whatever needs to be done for my son, according to His will and in His time.  Standing that high, looking down through the clouds and realizing you are but a shadow, brings that out.  Up that high looking down through the clouds, there is no yesterday, today, or tomorrow.  There is simply this moment.  This moment where you stand arms raised and heart abandoned.  In awe of the one who gave his all.  This moment where you know that there is no "hurry and answer my prayer" or "hurry and heal my son."  But simple knowledge that He will.  At any moment...  That's what HOPEISM is.
I told Brandon that he would have loved to be up there, where there was absolutely no higher point around him. 

But I smile as I also know that when he finally closed his eyes and fell asleep, and as I kissed his forehead one last time before leaving his room; where he was, who he was with ---

Was even higher.

July 11, 2013

Part 3: The Renewal of our Forever: On this rock.


On this rock...

Matthew 16:18

"Now I say to you that you are Peter (which means 'rock'), and upon this rock I will build my church, and all the powers of hell will not conquer it."

It's hard to believe that there could be more to our fairytale summer, yet there is.  Our Silver Anniversary, celebrating 25 years of marriage with dear family and friends who we haven't seen in forever, Brandon getting to go have the time of his life at Camp Blessing, and then our "Happy Someday" trip of a lifetime to Maui -- where Matthew and Tiffany could join us.  It's more than I can comprehend!  At home now, even as I pour over the hundreds of pictures we took, I still can barely comprehend we were really there.  We really did all those things!

I love that scripture above because it symbolized the life Todd and I have tried to live.  Tried to instill in our son Matt.  That if you build your life, your home, your marriage, and raise your children on the rock of Christ --- bad things may happen to hurt you --- but the gates of hell will never destroy you. We are testament that.  Our marriage especially.  Which finally brings me to the title of this blog series, "The Renewal of our Forever."

The part of this miraculous trip that I did manage to keep a secret from Todd - was that when I had the dates for our trip, and found out we were going to Maui - I asked our longtime friends, Bill and Kathy Bush, some things about Maui because I knew they had been there.   In talking with Bill, I found out they were going to be in Maui the same time we were!   What are the chances of that?  That our once-in-a-lifetime vacation would overlap their vacation in Maui!   It just proved again and again how "God" this trip was.  We haven't seen Bill and Kathy for years.  When we lived in Oklahoma, they were our dearest friends.  They still are our dearest friends even though we've maybe seen each other 1-2 times in the last decade or longer.  Their friendship, their mentorship, has been priceless to us over the years.  Their marriage, their life, their Christianity, - truly built upon the rock of Christ.  We love them so very dearly - and that we got to share a few days together in Maui was just a true miracle!   They live in Oklahoma, we live in Texas, -- but it was in Maui where we visited and caught up!

I just marvel at that!

The day we arrived in Maui, Bill and I arranged to meet at a grocery store for us to get some things for our condo.  It was planned for Bill to just "happen" to bump into Todd in one of the aisles.  How I managed to keep that a secret is what's truly priceless, but this picture is pretty priceless too -- Todd was truly shocked to turn to the "thug" who bumped into him and see that it was his best friend Bill!

Todd's shock was something to remember.  Being at a Safeway in Maui and his best friend from Owasso, OK bumping in to him.  Too unreal!

As it turns out, their timeshare where they stayed was right down the beach from us!  That night they brought grilled burgers and hotdogs to our condo and we all had such a sweet time of fellowship!   The whole thing was just beyond my wildest dreams.
Back when I realized we would all be in Maui together, I asked Bill if he would mind renewing our marriage vows.  What better way to begin our fairytale of a trip!  We would all be in Maui, we would be celebrating our Silver Anniversary -- what an opportunity!  He said he would be honored.   I somehow managed to keep that a secret from Todd as well!  I forgot to bring our wedding rings, so while we were out shopping one day, I saw a little booth that was selling coconut wood "love rings" and I casually told Todd to try one on - they would be a nice little souvenir for our "Anniversary trip".   And so on July 3rd, a Wednesday, we all arranged to meet at the IAO Needle, a beautiful scenic/historic park, and sight see.  Bill and Kathy had their daughter there with them and her husband.  We had our son and his wife.  It was so cool...

So as we are all hiking along the trails through such beautiful scenery, Bill turned to me and said, "Whenever you are ready...." and we would do the ceremony.  Earlier, I told Matt and Tiff the plan for Todd and I to renew our wedding vows -- Matt would be Todd's best man, and Tiff agreed to be my maid of honor.  One of the places we stopped for pictures along our hike, was a huge rock along a waterfall stream.  The scripture above popped in my head - and I knew I wanted us to have that little ceremony on that rock.  So I told Bill, and we went back to the rock.  I gave Matt and Tiff our "coconut wood love rings" and then let Todd in on the secret!

There we stood on that rock, renewing our forever...

Bill shared some words from scripture, renewed our wedding vows, then said a very touching prayer.  It was such a sweet moment to share with our son and daughter-in-law, and performed and witnessed by our dear friends.

On a Wednesday, on a rock in the rainforest of Maui, we renewed our forever as we said "I do" again...

I can still hardly believe that.

Thank you Bill & Kathy, Jessica & Jimmy, for sharing that moment with us...

July 2, 2013

Part 2: The Renewal of our Forever: Happy Someday


Happy Someday

Ecclesiastes 3:1
There is a season for everything, and a time for every event under heaven...

I don't know where to begin... 


We are on our way to a vacation and anniversary celebration of a lifetime!  This day we've longed for and dared to hope could really, really, really happen - is here.   All those words above - and more - describe how I feel.  One of them -- guilty -- is perhaps what I feel most.  Guilty that we are getting an opportunity all of us in the autism community need but that most do not get --- a respite vacation. 

We long for that time away to do what everyone else can do at times, all except for us it seems...  Get away and just relax.  Brandon's vacation where he gets to attend camp for 4 days is his vacation.  His chance to get away from autism and just be a young man.  This coming week, is our chance to get away from autism and just be us.  But true to "Life with Autism" our vacation will not be a typical one.  Relax is something we most likely will not do much of except in knowing that we are getting a break from the daily care giving and advocacy demands of autism.  That's what "relax" means to this autism family.  Once set free --- we must as my friend Teresa so eloquently put it "go a hundred miles an hour with our hair on fire" in cramming all that we possibly can in that vacation because we don't know when the next opportunity to escape will be.  A whole decade of things we've wanted to do, we are going to attempt to cram into seven days.  Kayak, watch a sunrise over a volcano, hike in a Bamboo forest, on a volcano, swim in a waterfall, scuba dive, snorkel with sea turtles...

The plans for this amazing respite miracle were started long ago without me even realizing it.  Well, last fall to be exact.  During one of the most difficult periods of our lives with Brandon's seizures.  One day I received an e-mail from someone I know only via autism connections, not even in person.  On behalf of their non-profit organization, Happy Someday, Inc. - they let me know that we were nominated to receive a respite vacation.  Not only were we nominated for that -- but we were chosen

Needless to say, I didn't believe it.  Things that seem too good to be true, for us have been --- not true!  But, I met with them to see if it was legit, and indeed it was.  I cried in that office at just the possibility of going -- not even comprehending a reality where we could go.  My faith so strong that I didn't even tell Todd about it!  Ha ha ha!  My thinking was that if it turned out that we couldn't go, I wanted to be the only one who would be disappointed.  I couldn't bear for Todd to be crushed if it didn't work out where Grandparents could come stay with Brandon, etc.   So by my lonesome, I met with them and they asked things we liked to do, how far we would feel comfortable traveling,  -- either local, in the state, out of state, out of country!  How much time we felt comfortable being away...  Based on our likes/dislikes they gave us (me) some choices - and I chose - and then began the painful waiting process of "God, could we really????  Please, please, please?????"

It was during those months where Brandon was at his worse that those seeds were being planted.  A dear friend putting me in touch with a doctor who is helping get Brandon on a seizure-free streak.  Brandon getting better and stronger and sleeping in the night again so that those who are here caring for him won't have at least those horrendous yeast beasts and die-off to get through all night.  Another dear friend who started the wheels in motion for this amazing respite vacation opportunity for us.

Sometimes I get so blinded by the torrential downpour during a storm, that I can't possibly see how God could be working his HOPEISM miracles through it.  But indeed he was working a mighty one.  One of my favorite songs has a line that goes, "Sometimes He calms the storm, and other times he calms his child..."   God was doing both.  He was calming the storm for Brandon in putting us in touch with a doctor who would help, and he was calming us perhaps in not taking our storm away, but giving us a brief opportunity for respite from it.

And now a downpour of tears as I think about this miracle that so many had a part in for us.  The prayer partners for Brandon.  Happy Someday, Inc. and those who donate to their organization so that they can help families like mine have a respite vacation.  The friend who helped with a doctor.  The friend who nominated us for this opportunity.  The friend who gave additional support of our need for respite.  The Grandparents who will be staying here with Brandon. 

It's overwhelming to think about the miracle this has all been.

Which makes it all the harder to believe that there could be more. 

Yet there is.

Our Silver Anniversary.

I still had not shared any of this with Todd.  I figured that once we had our airline tickets and a place to stay confirmed -- then maybe it would be real.  Then it would be safe to tell him, and I could tell him about it as an Anniversary gift.   Well, it was real.  I had the airline tickets, the condo confirmation, and the organization had made up a card for me detailing where we were going and put it in a gift bag with some novelties depicting where we would be going, and when we were leaving.  It was time to tell him so that he could make arrangements with work.  And so with Brandon in the house humming, I brought Todd out to our Log Cabin and gave him the gift bag to open.  The card from Happy Someday to read.  I could tell as he was reading it and it was sinking in, that he didn't believe it either.  Oh us of little faith!  Ha ha ha!  A Silver Anniversary respite vacation.  What, in our world other than total healing of Brandon's autism, could have ever possibly been better than that?  So very many Anniversary's spent home with Brandon's humming -- and this one -- our 25th Wedding Anniversary at that -- we get to celebrate in a place we've never even allowed ourselves the possibility to consider that we could ever go to! 


There is one thing that could possibly top all that.

Our son and his wife, our daughter.

While I was keeping all this a secret from Todd, I did share it with Matt. I needed to share it with someone. I needed for someone who knows our life, who fully understand the crazy, mad, lunacy of our life, to be as excited for us as I was.  When I told Matt about it, I asked if there was any crazy, mad, wonderful possibility he could join us.  He and Tiff could share the condo with us.  I think Matt was thinking it before I said it, because before I even asked, he said he was going to find a way to come!   He knew how few vacations we've actually had together, and this one, this one would make up for a whole lot of those!  I love how there was no question in his mind that he would want to join us, even if it meant sleeping on the floor!  So, if it wasn't horrendous enough keeping this secret so long, it was even more horrendous waiting on a Navy system that does not know the meaning of anything other than hurry up and wait!  The organization providing the respite sent him a letter explaining this opportunity for our family that he could turn in with his request for leave.  He did.  And then we waited.  And waited.  And waited.  Hoping, praying, hoping, doubting.  Again with the too good to be true...  A Silver Anniversary.  A respite vacation.  To hope that it could include our son and daughter, well that would be just downright impossible.

But again with the exceedingly abundant from "Part One" of this story.  God is Exceedingly Abundant -- in all things.  He loves to make what we think is impossible -- possible.  I received a text one day with a picture of his leave request.  Approved.  Signed.  Real.  I printed it out to include in the memory book for this summer, which is definitely one to remember.  We would get to share in this anniversary celebration and respite vacation with our son and daughter-in-law...

Again with the tears.

The only bummer in all that - is how Matt & Tiff wanted to surprise Todd in Maui.  For weeks I, she-who-hates-secrets, kept so many secrets about this from Todd!  Matt and I would be texting plans, excursions, etc.  All without Todd having a clue that Matt and Tiff would be there too.  In our world of the-only-surprises-we-get-are-poop-floating-in-the-tub or seizures-five-minutes-before-time-to-leave-for-date-night -- this would have been a really welcome surprise!  If I didn't blow it!  Todd always light-heartedly complains that I don't talk much.  I don't.  I'm a writer or listener.  Not a chatty talker person.  But one evening while he was grilling burgers for us, I was sitting with him out in the "Log Cabin" looking through our "Maui Revealed" guide book.  I was telling him about all the things I had lined up for us to do, and casually said, "Oh, and Tiff and I will need to remember to bring our dramamine when we go on the road to Hana..."


I realized it the second it was out - and hoped Todd was a husband that tuned out his chatty wife.  But no.  He was on that like Chevy on a lizard.  He's like, "Why would Tiff need to remember to bring dramamine on our vacation?"



Ha ha ha!

Birthday Celebrations

God does love to show off.  Our 25th Wedding Anniversary was July 25th.  Our son turns 21 on July 6th.  Our daughter turns 21 on August 4th.  We will all be together from July 2nd through July 10th to celebrate all those milestone events.

What a 21st Birthday for Matt to remember!

Thank you God.

Thank you.

Blasted tears!

The Harvest

Galatians 6:9
"So let's not get tired of doing what is good.  At just the right time we will reap a harvest of blessing if we don't give up."

That verse will always symbolize today for me.

We are on our way to Maui. 

Happy Someday is today. 

And there's only one thing left to say...

Aloha, Jack!