From "The Humming from Hell" to "The Applause of Heaven"

I love books by Max Lucado.  One of my favorites in my early days in "Life with Autism" was his book titled, "The Applause of Heaven."   It was based on Matthew 5...

Now when Jesus saw the crowds, he went up on a mountainside and sat down. His disciples came to him, and he began to teach them.

He said:

Blessed are the poor in spirit,
    for theirs is the kingdom of heaven.
Blessed are those who mourn,
    for they will be comforted.
Blessed are the meek,
    for they will inherit the earth.
Blessed are those who hunger and thirst for righteousness,
    for they will be filled.
Blessed are the merciful,
    for they will be shown mercy.
Blessed are the pure in heart,
    for they will see God.
Blessed are the peacemakers,
    for they will be called children of God.
Blessed are those who are persecuted because of righteousness,
    for theirs is the kingdom of heaven.
Blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of me.  Rejoice and be glad, because great is your reward in heaven, for in the same way they persecuted the prophets who were before you.

When I thought about a title for these thoughts I'm sharing, that book title came to mind...  "The Applause of Heaven."   But that wasn't a very accurate description of my thoughts.  They are more, "The Humming from Hell."  I'm sure God would have preferred the former, but he understands me and shook his heavenly head in knowing that I would indeed, choose the latter.

I simply have to ground myself at times and share my thoughts in hopes that anyone else in my situation who is thinking the same things, might be encouraged in their discouragement.  I am a veteran in this "Life with Autism" journey.  My son is nineteen years old.  He was formally diagnosed right around his second birthday.  Give or take a few months.  I've been through a lot.  I've spent a lot.  I've done a lot.   I've had to clean up....a whole lot.  In all of that, the thing that gets me down more than anything else, are stories that aren't accurate to my child's kind of autism.  Stories that portray, "If you do this, you will reap this reward..."   "If you spend everything and go to this doctor, your child will recover as mine has..."  "If you just share this cutesy picture and inspirational saying, all will be well..."   And lately with many blogs I've read, "How to prepare for and get through this or that..."   Be it vacation, doctor visit, hospital stay, etc.   Don't get me wrong, I am very happy for the successes of my friends.  A great part of my Hopeism is lived vicariously through them.  In hopes that my son's outcome could be like theirs.  But what happens if it isn't?  What if you feel as I do, that after reading each success story, I need to have a few minutes of reality rebuttal with my own very different outcomes to their stories?  This is never more real than in the month of April.  I wish I was a bear and could just hibernate in a remote cave somewhere until that month is over!

So many tips on having the perfect vacation with your child who has autism...  We read them all before embarking on our first vacation trip with Brandon.  I'm all for trying anything once, so we did.  We planned everything as perfectly as one possibly could, yet still the moment we landed and walked into a strange house with strange relatives he had never seen, he turned into the Tazmanian devil and would remain that for the duration.  Not that he was bad, he actually endured the unendurable to him as best he could.  But he just couldn't adapt to so many things being new and different.  Sand too hot, sand too sandy.  Sun too hot, sun too sunny.  People too many and way too loud.  Place too unfamiliar.  Our son who has the best balance ever, found himself tripping and falling over everything and everyone.  Our boat and beach experience traded in for driving our son up and down the island in the car until it was time to go back to the beach house where he would scream all night.  Our perfect plans on the non-stop flight back home after a hellish week, were met with a meltdown where I was 'this close' to getting myself arrested on the airplane because my son was having a meltdown on the galley floor and didn't understand "FAA regulations are that he remain in his seat with seat belt securely fastened."  I wished upon wishes that they would have arrested me, whatever it would have taken to get us OFF THAT PLANE!  But no such luck, we had to endure holding Brandon down in his seat.  All I remember of that plane ride home is counting from 1 to 60 over and over.  Each minute knowing I was one minute closer to never having to endure such horror ever again.  Like, ever.  For us, "How to survive a plane ride" would be to never again take him on one.  Or where someone donates their private jet for our exclusive use.

For me the point most missed in autism inspiration, is how one can possibly remain inspired when they've done all that everyone says to do, yet their child is still not recovered.  When they've planned the ultimate plan, and yet the plan still fails.  Often I have to disconnect from the very community I so love, simply because it can become quite commercialized, worldly, and photo-shopped.  Not to mention out of reach.  We've become a nation of "Don't Worry Be Happy" in thinking every good deed deserves a reward and that if you do good, good will be your reward.  That if you get enough good behavior stickers, you'll get a treat at the end of the week.   Hmmmmm, let me recall....  For the last three years of my son's relentless seizure cycle I've done as good as I could, he's been the absolute best warrior he could be, and the only "reward" me or my son has received has been still having seizures.  Back to the question of how you keep keeping on...

For me there has to be more than biomedical intervention, more than respite, more than the perfect doctor, the most stress free hospital stay, and more than the finances to pursue all there is one can pursue in autism.  That's what this is about.  Encouraging the discouraged.  Reminding that having HOPEISM doesn't mean you don't have troubles, but that clinging to HOPEISM helps get you through those troubles.  How Hopeism can deliver where those other things fail.  When you have nothing, HOPEISM can be your everything.  It has been for me.  My HOPEISM is my faith.  It is God's love, hope, grace, mercy, joy, and healing all rolled into one word.  It is the faith that the God who created my son who Pharma has maimed, will always be there for my son. For me.  Faith that nothing happens without His sovereign knowledge.  Faith that there is purpose in our suffering, and in the suffering of our children.  If I didn't have that HOPEISM, I would not make it through one single moment of my "Life with Autism."  Not. One. Moment.  Especially when so many of those moments are in seeing how everyone else has so many successes, and us, so few.  It's my HOPEISM that squashes that guilt in "Did I do enough?"  "Did I spend enough?"  "Did I travel far enough?"  I had a "Come to grips" moment a few years ago when I realized that I must do for my son what is best for not only him, but our family.  I cannot base that on anyone else's decision or financial position.  I am not them.  My child not like their child. 

I'm never more reminded of that than when reading the blogs of other parents whose children, while on the very same spectrum that my son is on, are so very far from my son in that spectrum.  Those whose children can play on their iPAD endlessly in a hospital stay for testing do bring out the jealousy in me.  I know it's still tough on them and the parents to have be cooped up in a room, but if their child can lay in a bed and listen to music or play their electronic games, -- they've got it made as far as I'm concerned!   We've tried a stay in the EEG Monitoring Unit where my son was to somehow stay in bed, the room, with electrodes on his head; and it was nothing short of hell.  Every five minutes the tech would come in and have to glue a lead back on.  When we held down one arm from ripping them off, the other arm would break free just long enough for a good yank.  And there were two of us holding him down and we still failed miserably.  We were to do that for five days.  We checked him in a two o'clock in the afternoon.  We endured into that first night thinking that surely he would fall asleep at some point.  He never did.  There was never a moment he voluntarily laid on the bed, and never a moment where he left the leads alone.  Finally, at four o'clock in the morning, we called the EEG tech in and told him to take the leads off, we were done.  Frazzled.  Frustrated.  And as Brandon would sign, .... FINISHED.  

That's one reason I don't want anyone accompanying me on procedures we must do with Brandon.  They are always equally frustrating, nearly fruitless experiences.   We've decided that we aren't going to put Brandon through some of them ever again, but those we must, like teeth cleanings, scopes to see the status of his bowel disease - SPECT Scans, -- we simply get through as best we can.  As best I can, since I'm the one who is most often the one taking him, -- and as I've shared, without witnesses to my bad attitude in these situations!  I remember one such time I guess my husband had told our friend where I was, which hospital, at what time.  I about killed him.  The last thing I wanted was a witness to my endless pacing, endless rudely asking the clerk HOW MUCH LONGER when it's already been a few hours past scheduled surgery time!  Misery in my case, does not want company!  (smile)    I do exaggerate in that a bit, it was nice to have a calming presence there, I appreciate that someone thought enough about me to want to come be with me through that process; but it didn't make the process any less miserable! 

And to reassure that this isn't all so serious, I do remember a time at a dental procedure where the surgeon was less than fond of me.  I had advocated to the higher up's about the horrendous wait time for my son to be able to get his front teeth fixed that were knocked out from a seizure fall.  The surgeon was not used to strong-willed parents pulling strings I guess...  Before Brandon's procedure she came in the room where Todd and I and Brandon were waiting, and asked to speak with me down the hall in private.  Once in that room she berated me and threatened to cancel Brandon's surgery that we had been waiting over a year for, just because I was a few minutes late in arriving.  Didn't matter that they weren't ready for us anyway, they were behind schedule.  But that was just enough ammunition for her to use against me.  After a while Todd comes in the room all worried as the doctor was leaving.  I told him thank you for coming to check on me, and he said, "I didn't come to check on you, I was worried about what you might have done to HER!"

Ha ha ha -- he knows me well!

This is where humor comes in and plays a huge role in getting through this "Life with Autism"....   Through any such situation of mine that seems to be unlike anyone else's experience, I can always rest assured of three things:  1)  God has my back.  2)  Todd has their back.  3)  Tonya has my bail.

I am simply me, a mother who loves her son just as much as any warrior mom loves their child with autism.  I am a woman who trusts God and puts her faith in Him.  For me, that is what gets me through imperfect vacations and and helps me survive the unsurvivable doctor's visits and hospital stays.  It what heals better than any biomedical intervention ever could.

I will still read other people's experiences that are always far better than mine because their children are far more high functioning and recovered than mine, with gladness for them and a bit on envy from me.  But what I won't do is allow satan to entice me into thinking that it's because I didn't do enough of this or that, or spend enough, or go to enough different doctors.  Their child is their child.  Their level of autism functioning theirs. 

No one should ever feel guilty in any of that.  No one should ever feel intimidated that if they don't do any of that or all of that, that they aren't doing enough.   Because let me tell you a wee little secret...  You can do all of that, spend all you have to spend, and more, and still have a child with autism.  You can do all the interventions there are to do, and your child can still develop seizures, bowel disease, or any other host of things.

And yes, of course, you can do all that and spend all that and your child can one day be recovered. 

You have to simply do what you feel is best to do, with the means you have to do them with.  And you know what?  You can even have a bad attitude in pacing floors in endless hospital stays.  Not everything has to be picture perfect.  You can laugh in the face of having read all the perfect tips on how to survive this or that - knowing that even after doing all that, you still failed to accomplish what you needed to.  The vacation flopped and at the hospital you and your child flipped out, you said 'flap it' and then fled the hospital.  God understands your foibles.  You don't always have to pretend your life with autism is an inspirational quote or think you have fallen short as a parent if you don't have the photo-shopped non-acne faced kid in the autism awareness picture wearing an airman hat, goggles, and scarf -- alongside a cutesy saying implying how he'll be a pilot one day.  I'm sure that kid will.  If he can stand a hat on his head and goggles on his face, then he most likely is on the "spectrum" of autism where those goals would be realistic!  Either way, my snarky-self would so like to post a rebuttal to that picture each time I see it, with a non-photo shopped picture of my supplement-colored drooling son doing what he loves to do, --  lick tires.  In fact, any "autism awareness" picture of a kid wearing anything on their face or head is as far from portraying my son's kind of autism as "vaccines don't cause autism" is from the truth.

Don't get me wrong, I have high goals for my son.  We have him in a school that has even higher hopes for him!  We all do our very best in helping Brandon achieve the most he can achieve.  Be the best Brandon he can be.  I just get tired of this photo-shop autism world sometimes, the implication being that if you just do enough, are good enough, all will be well and your child recovered.  That biomedical intervention will always result in success.  It has helped my son tremendously, but it hasn't healed him.  And it hasn't made him any more interested in sitting still and playing a video game or obsessing with reading the same book over and over for hours.  Things that I long for, instead of the constant 24/7 motion that is my son.  It most certainly hasn't made it possible for us to ever consider a week-long stay in an EEG monitoring unit!  I have so very many friends who have been through it all, have done it all, yet still we find ourselves having a conversation through Facebook at midnight and beyond trying to figure out what more we can do.  Sharing the tears, understanding the suckiness, sharpening each other's faith, -- all while our kids are in the next room still awake and our husbands alone in bed putting yet another check mark on the "how long it's been since" calendar...

For me there simply must be more than a blog on how to.  More than a doctor who knows all.  More than an intervention that is all.  There has to be more than a cute picture or inspirational saying.  For me there has to be HOPEISM.  There has to be the joyful assurance that God does have a plan for me and my son, whether I know what it is or not.  Whether I agree with it or not.  I have to believe in  God and daily seek HIM to better understand what to do for him.  I have to have faith in the God who does as he promised in Matthew 5, and in the meantime continue to advocate, fight, search, right wrongs, and endure for him.  Continue to dream, dare, and do for him.  Continue the "Never Quit" warrior mentality.  Continue to know God can heal my son, even though he hasn't yet.....

I've shared that sometimes I get jealous of others in how it's always so much easier for them.  I wonder sometimes if God gets jealous of me in how I'm always so quick to put faith in what others say to do before I've even fully prayed to and trusted in him to do what only he has the power to do.

So if you're feeling like I have at times, too deaf from "The Humming from Hell" to even hear "The Applause of Heaven" and are just glad to be done with whatever situation or circumstance it was you had to imperfectly endure...if you did as Todd and I did in yelling "HURRY" to the innocent EEG tech to rip those leads off faster so that at 4am on only the first night of a planned five night stay we could bolt out of that EEG Monitoring unit like a bullet from a gun, in total failure of what we knew better than to even try to attempt, ---  know this:

Blessed are those who Never Quit,
   who persevere through obstacles, disappointments, setbacks,
      for they will know the joy of HOPEISM that is better than any HALLELUJAH!

HOOYAH!

Shhhhhh....  Listen, do you hear that?  Look, do you see that?

Forget the applause of heaven.... that's for typical parents.

Warrior Mom or Dad, --- yours is a standing ovation.

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.

HOOYAH!

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

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.

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

PART THREE

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...

Part 2: The Renewal of our Forever: Happy Someday

PART TWO

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... 

Giddy.
Thankful.
Delirious.
Blessed.
Anxious.
Hopeful.
Guilty.
Thrilled.
Humbled.
Happy.
Happy.
Happy.


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! 

Well...

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..."

Darn!

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?"

Uhm........

Surprise!

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. 

Our Happy Someday is today. 

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

Aloha, Jack!

Part 1: The Renewal of our Forever: God gave me you!

PART ONE

Exceedingly Abundant

Ephesions 3:20
"Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us."

Today is our 25th Wedding Anniversary.

Our Silver Anniversary.

Exceedingly abundant are the words running through my mind as I reflect upon our journey thus far.  Our journey that seems like just yesterday in some ways.  In others, a lifetime ago.

Someone commented to me regarding their invitation to our Silver Anniversary Camo-cake & cookie reception we are having in honor of that milestone...  They said, "So, you're throwing yourselves a reception..."   I'm sure they meant nothing by it, but I was somewhat taken aback by that statement...as if this were just another anniversary, no biggie.  I guess it is just another anniversary, but to me, to us, it is a biggie.  We are proud of this achievement.  We know what it took to get here, what it will take to get to the Golden one -- and you bet your bloomers we're celebrating.  This isn't a participation trophy we're getting for simply being married.  This is an achievement award we have earned.  The hard way.  With much hard work.  With few rewards.  Except for those rewards that center on the pride of knowing the true meaning of commitment, Never Quit.

According to statistics, 50-70% of all marriages where there is a child, youth, or adult with a disability end in divorce. 

"Unfortunately, according to available statistics, the chronic stress it produces is more likely to cause a couple to pull apart than pull together. The divorce rate for marriages with a disabled child is estimated at between 50 and 70 percent. The only heavier stress on a marriage is the death of a child, which destroys 90 percent of marriages. After hearing all the bad news, couples should be forewarned that they must commit to do the hard work of finding a better solution to handle the inevitable stresses that will inevitably come up if your child's special needs are anything other than short-lived."

For many years in knowing those statistics - and in unfortunately seeing those statistics lived out all around us -- on the rare occasion when we could go out to dinner on our Anniversary, we did a little toast to "beating the odds" one more year. Those are some pretty tough odds to beat, too.  Considering that studies have shown that the stress involved in caring for a child who has autism is comparable to that experienced by a combat soldier.

They found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat, the researchers report in one of two studies published in the Journal of Autism and Developmental Disorders.  “This is the physiological residue of daily stress,” says Marsha Mailick Seltzer, a researcher at the University of Wisconsin-Madison who authored the studies. “The mothers of children with high levels of behavior problems have the most pronounced physiological profile of chronic stress, but the long-term effect on their physical health is not yet known.”

Each warrior mom and dad knows all too well the long-term effect on that physical health. I especially do in having a stress fracture in my back.  I share those sobering facts because in order for me to fully appreciate what this day represents and why indeed we view it as a celebration, I must first look back at all our marriage has been through.

And its been through some stuff!

I have to laugh typing this how naive we were on our Wedding Day, June 25, 1988.  We knew nothing about love as a commitment.  Only love as a feeling.  We knew nothing about the meaning of the vows we so eagerly recited.   We had our dreams of "for better."  Which to us meant perfect jobs, perfect kids, perfect house, perfect life.  It never, ever would have occurred to me that to truly understand "for better" you must first go through "for worse."  And for a mother/wife, there is nothing worse than watching your child suffer through the pain of gastrointestinal disease, the gasping of breath in the choking and convulsing of seizures.  For a father/husband, there is nothing worse than having a tool in your garage to help you fix anything, but not one that can help heal your son.  Stop his pain.  Help him talk. 

We are, our marriage is, all the better for having gone through some of the worse of the worse.  It's funny that in our "courtship days" we would always end our letters with "One Way" - meaning so many things at the time - none of which had anything to do with the road through hell as some of our autism journeys seemed to be.  But there again, the saying "When you're going through hell, just keep going!" - got us through.  I guess our "One Way" saying still does apply after all these years! 

So very many things about those vows mean so much more now.  "To have and to hold..."  We figured we'd have children - not autism.  Broken windows from baseballs, not broken teeth from seizures.  The commitment it takes to hold on when at times it would be easier to just let go - oh my goodness how much that has taught me!  I'm not sure about other marriages in life with autism, but in ours, there was no time or money to seek counseling if we felt we needed to, or go to marriage enrichment seminar's. There was no childcare so we could even go if we wanted to.  So many people depend on everything else to solve their problems for them, except for themselves.  So dependent on quick fix books.  Feel good seminars.  And then when the fun wears off and things get tough -- there's the drive-thru divorce.  It quite frankly makes me mad.  We had none of those things and divorce simply was never an option.  Our marriage license had no escape clause, disclaimer, or warranty that expired.  Our promise was a promise and forever meant forever.  We had to work things out on our own in between leaky gut episodes, humming, seizures, humming, autism, humming, meltdowns, humming.   There were no regular "date nights" to keep that candle burning.  We had to learn to appreciate a good flicker at best at times.  What there was, was a whole lot of shift reports in the changing of the guard and "tag" you're it - don't leave a mess and don't let him escape.  There was mind-numbing insanity of "lights on" "lights off" - "water on" "water off" - "close door" "close door" "close door" -  lather, rinse, repeat.  There was a huge figure for someone so underweight who incessantly stood in front of the t.v. right when the game winning field goal in triple overtime was kicked.  Shoot, there were even months our candle was a glowing ember at best!

But it was going through those times where we learned how to love and to cherish.  We didn't love the hard times, but they sure helped to define how very much we cherished the good times and the few times we've had a respite opportunity for just us.

I think if I were to write our vows today, they would have to include laughter in there somewhere.  I think perhaps that has been the key to surviving this crazy, mad, wonderful journey.  The humor of how when all else is "non-recoverable" and fails -- you simply just laugh.  I would also change them from, "To have and to hold," to instead, "In faith and with much HOPEISM."  Reflecting how our early, naive, worldly dreams have been replaced by the meaning and purpose in our motto of Choosing Happy.  Living Joyfully.  Following Christ.  Wearing Camo.

Team Guppy has fought to preserve our marriage with the mentality of NDCQ and Never Quit -- while wearing Camouflage & Combat Boots, of course!  We've learned that "for richer or poorer" has nothing to do with money.  Richer is the person who knows that happiness isn't about having a big house filled with perfect kids and lots of things.  It's not about being successful.  It's about choosing happy no matter what the circumstance.  It's about living joyfully in the middle of such sorrow at times.  It's about not following the Jones' but following Christ.  It's not about having a lot of money, but in what you do with the money you have.  Poorer is the person who has never given to those who need.  Who has never given of themselves to help another who cannot thank or repay them.  Our marriage has taught us the lesson of unselfishness.  And what we didn't learn about unselfishness from our marriage, we sure learned it from autism and our autism community.

It's nothing short of amazing to me how much more than just the basic stuff our marriage has endured. Not just typical chaos, but over-the-top-you-just-can't-make-this-stuff-up crazy chaos.  Marriages need the most attention, however in our "Life with Autism" it has received the least. If at times, for weeks at a time, - any attention at all.  I can get really sad in thinking about that.  So I'll try not to look back through all those years since autism and stare at what was missed.  It's yet another thing that typical marriages could never fathom.  How many months upon months we've not had the opportunity for a date night.  For carefree walks holding hands.  For conversation...  And until God chooses to heal our son -- we might never have those opportunities except as rare occasions to cherish thanks to the respite of others.

So yes...  Yes we are celebrating this day.  Our crazy, mad, wonderful journey that brought us to this crazy, mad, wonderful day.  We've fought the good fight for it.  We're going to thank God for it, and savor it.  Then this Sunday evening we're going to share it with dear friends and family who will be here.  We're going to light the unity candle that we first lit in the church during our wedding ceremony so long ago...

Our son and his new wife just celebrated their 1st Anniversary in the "Beginning of their Forever" and here Todd and I are celebrating our 25th Anniversary - our Silver Anniversary - with the "Renewal of our Forever."  I can hardly believe that.  I can't wait for them to get to this day that perhaps for them at times they thought might never come; then when it does, when they are in that moment as we are -- to look back with such humble pride of accomplishment.  Such strength of commitment.

I hope at that time they do as we are doing today, in giving such Glory to God for His exceedingly abundant faith, grace, mercy, provision, unconditional love, humor, ---

HOPEISM.

~ ~ ~

Happy Anniversary Todd!  Let's continue on our "One Way" journey to our Golden Anniversary, shall we?  And in the meantime, do you realize that over the years we've had more date nights in doctors offices, emergency rooms, and hospital day surgery waiting rooms, than at romantic restaurants?  Do you realize that we've had more vacations apart - one of us with Matthew and the other home with Brandon -- than all of us together?   Here's to the HOPEISM that we truly and for it's-really-going-to-happen real - get to change that!

I am so happy happy happy that God gave me you, and I couldn't agree more with the words Miranda Lambert spoke at the beginning of this song:

We've made it through...the unthinkable...we've made it through everything we could possibly make it through.  I know that we have a lot more trials & tribulations to go, but I'm ready to continue with you on our journey...

I love you!

Click here for "God Gave Me You" video