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!

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The drool that broke the fish's back...

My dear friend Tonya posted on her status yesterday that she was going to compliment herself on something each day.  So often she found herself only seeing the stuff she did wrong, that she felt she needed to remind herself of some things she does well.  I really admired her for that.  I too, find myself getting so down on all the mistakes I've made, all the things I can't do.

So I'll start off this post by sharing how many autism'ism's I've survived.  The big ones are the seizures.  The one that left Brandon laying face up in the backyard with the sprinkler sprinkling water in his open mouth from having had a seizure.  He had literally drowned and Todd had to give him CPR to revive him from that.   Then there was the fall from Brandon standing on the deck of our above ground pool, straight backward onto the concrete porch below.  And somehow survived without a scratch or concussion.  I've survived more of Brandon's seizures than I can count, stares from society, staples in his head, stitches on his face, stress, and shattered teeth.

I've survived a lot.  My husband and I have been through it all.  All of my friends in the autism community have. It is unimaginable the daily stress, challenges, and obstacles of raising a child, youth, and now adult who is severely affected by vaccine injury.  Er, sorry, - autism. Insurance battles, trying to find a doctor, trying to get services, trying to pay for everything that is out of pocket and never ending.  School.  What opportunities are out there for fun for him. What to do after school.  What to do when you die.  Where to find recreation, respite, relief.  Then in your spare time, advocacy, advocacy, and more advocacy.

I'll say it for me, for all of us, -- it is amazing what we survive in a day's time.  Let alone the endless weeks, months, and years we must battle on for the sake of our children's health and future.

We survive the unsurvivable.

But what knocked me out today, this morning, was drool.

Of all the things we must battle with my son's autism -- seizures, how to communicate with him, GI Disease, PANS, yeast, yeast die-off, humming, humming, incessant humming at times, etc --- of all those things that are so all encompassing -- it was drool that reduced me to a blubbering, screaming idiot this morning.

In running errands yesterday to get last minute camp things for Brandon, I bought him new black "Camo-shorts" and a matching black shirt.  Of all the ways he is deemed "not typical" -- I at least always like him to "look typical."   So there we were this morning, another late morning at that....  finally dressed, supplements down, new clothes on, out the door.    I'm driving and notice long streams of orange drool coming from his mouth.   During times like this, many times when my flesh wants to scream to me that there is no God, I was reminded that there indeed is.  Todd and I had switched cars today so that I could have his truck to drop Chevy off at his breeder's "ranch" for him to have his annual vacation from us!  Had we been in my car, Brandon would have been too far back for me to reach in the vain attempt to spare his new black shirt from orange drool.  And I know I believe in God -- but I am still human and my flesh, when faced with overwhelming stress at times, screams quite the opposite.

But it didn't matter that I could reach him with the napkin I was thankful to find in his car.  The damage was done.  The entire way to school I would look over at him and catch a long stream of orange drool a few seconds too late.  Yet just in time to wipe so that one side of his face remained flesh colored - and the other side a "you didn't quite rub in that rub-on fake tan cream" look.

I know I must be close to my breaking point in needing a break, when I lose it over drool.  Not wanting to scare Brandon, I rolled down my window and between sobs and sobs and more sobbing - I pulled over and screamed out the window loud, louder, and loudest.  To add insult to injury, Brandon found all that quite amusing.  Sitting there laughing with a big smile of orange goo all over his teeth as another big orange waterfall was about to happen.

What's even more insane is that his laughing, made me laugh.  So between sobbing and screaming, I found myself laughing.  I truly am a stark-raving-mad-laughing-lunatic.  Truly.

The insanity that even Brandon's wardrobe is affected by autism.  Most every shirt Brandon has, has some sort of stain on it.  Most recently, orange stains from one of the myriad of supplements I must give him to help heal him.  No matter how I give it, how much I "wash it down" with other food or drinks -- it comes back out with his drooling.  There is not one aspect of Brandon's life, or mine, that is not affected.  So very many days we show up at school with him looking like a slob. 

Like today.  By the time we pulled up at school, I had taken his black shirt off, only to notice that the white t-shirt under it had dried-on orange stains as well. 


That new shirt lasted all of a ten minute drive to school.  Couldn't even have that spared from autism's claws.

The poor therapist came out to get Brandon and I was still sobbing.  She asked what was wrong because I probably looked like someone died or something.  How, how do you explain how it was Brandon's orange drool that tipped me over the edge?  Reduced me to a blubbering idiot?

Who, but us in our own community, would ever understand that?

No one.

Society, as my autism friend Lisa Goes eluded to in her own way, will only ever see this about us and our lives:

"Poor Michelle, so upset over drool...  Look at her, she lives in a two-story brick house, they drive big cars, and her husband makes good money.  Brandon gets to go to camp and she and her husband get to go on vacation this year....  Poor, poor, spoiled pity-party dear.....  They should just pray and be thankful....."


I'll never understand that, and those outside the autism community will never understand how orange drool was the straw that broke this fish's back.

But now that I've had a few moments to compose myself, and thanks to blog therapy to tip my scale back closer to sane than crazy, -- I think I do have a solution.  Instead of not giving him that supplement he needs anymore, I can just buy all new clothes in orange.  Perhaps some with stripes to break it up.  Maybe some shirts with some numbers on them too.

It may not solve the drooling problem, but it'll best illustrate to society the prisoner to autism we often are...

And if I was reduced to feeling the way I did today -- how in the world does Brandon feel so very many days of his life, as he is the one who must live with pain that he can't even show us where it hurts, with words he wants to say but can't, with things he wants to do but doesn't know how?


To the HOPEISM that one day my sweet, sweet son will break free from behind those bars of autism.

When HOPEISM Blooms...

Romans 8:18For I consider that the sufferings of this present time 

  are not worthy to be compared with the glory 

which shall be revealed in us.

 

I have so loved watching the Sunflower seeds that I planted in my back yard grow.

Likewise, this has been such a year of "growing" for us too in so very many ways.  After a long time of planting faith that things would change, finally the harvest of change.  Beginnings of healing.  For all of us in Team Guppy.  For the first time in what seems like forever, I've been able to get back to doing more of what I so love to do.  Gardening.  Anything outside.  I am so much like my sons.  Neither one can be contained.  They need open.  They need to see the sky.  I need to feel the dirt. 

Romans 8:18 can be the motto for this past seizure cycle that began in August 2010.  I know so many of you are growing weary of that date.  I've shared it often.  I remember a woman's conference I went to once where the speaker shared how you should never let others see your scars.  It was a "Don't worry be happy" kind of speech where if you do good, good will happen to you.  I was so disillusioned by religion after that.  Sometimes bad things happen to good people.  Sometimes they're good all their lives and still aren't healed.  Flesh and blood people do worry, the key is still choosing happy.  Wounds leave scars.  And without a scar, you would have no reminder of the healing that took place.  How you survived that which you thought would surely break you. 

That's what those last nearly four years now have been.  A very deep wound.  The most unrelenting seizures to date.  And for as many visits as we have made to the Emergency Room and for as many staples and again broken teeth, and neurosurgery,  it's hard to imagine sharing how that still wasn't the most damaging seizure cycle.  The nine month long atonic seizure cycle several years ago was the worse.  My son having so many hard slams into the floor or wall or table that he had to wear a full face shield helmet every waking moment.  What that seizure cycle didn't have in width - length of time - it made up for in depth - severity.  That was a wound I am glad that healed rather quickly.  Yet in looking back at that scar -- I see so very many lessons in faith learned during that time.  It was a crisis of belief time.  I prayed so very hard each day for those slams to the floor to not break a tooth - to not ruin my son's bright smile.  It was the one thing I prayed the hardest to not happen.  Then one day it happened.  The moment he hit the floor, I knew his teeth were gone before ever seeing that indeed they were. Both front teeth shattered.  Gone.  The question I had to answer in my heart, in my soul, through my tears and in between my screams, was "If the thing I pray for the most to not happen, happens, will God still be God.  Would I still believe he was God?"

My answer then, now, forever, was, is, always will be --- yes.

In the years since then, many things have tested that answer.  So very, very many.  Hurts, betrayals, unfairness. 

Heart-sinking devastation.

But yes.  God is still God even when you pray for something and want something so bad - but it never happens.

God is still God when you do right by others, but they don't do right by you.

And then these past few years -- not only were we dealing with relentless seizures, every kind of seizure one can have -- sometimes all in the same day -- but a myraid of other health bamboozelments in Brandon.  GI regression, Yeast beasts, Viral issues, Chronic fatigue, and a movement type disorder that the jury is still out on -- in determining just what kind it is.  Either seizures rendered him in bed for days on end - or when he was up and could walk, it was the walk of a drunken soldier.  He lost 20 pounds over the course of that time, and lost skills that he fought so long and so hard to learn in the first place. 

Not to dwell on that pus-filled festering wound, just suffice it to say that if an autism friend hadn't begged her son's doctor to consult with me regarding my son -- I have no doubt Brandon would be about as close to death as one could be.  He simply had nothing left to fight with between the seizures no doctor would properly treat, the yeast beast no doctor would even try to beat, the viral issues no doctor would even consider as being an issue.

That doctor saw the sunflower inside my son -- the glory beyond the suffering - and listened to me - and treated Brandon.  Not as a text book would dictate, but as my son's symptoms dictated.  Nothing I mentioned was not explored simply because 'it couldn't be' - but simply tested for and treated as if it was.

And indeed it was.

The wound from this period of time in our "Life with Autism" will leave a very large scar.  Hopefully the largest we'll ever have to endure in times to come.  As my son is slowly but surely healing, gaining weight, having fewer seizures farther apart, the toll that wound took on our lives will not be soon forgotten.  And I'm not sure I would want to forget.  Like with any other wound we've had -- as painful as it was -- we have learned so very much.  Our faith has grown deeper and deeper.  Become stronger and stronger.

I want to show people, "That, do you see that one?  That's when I decided God would always be God, no matter if the thing I prayed the most to not happen, happened."

"You see that one there?  That's when I found out the hard way that no matter how deep the pit you feel you're in, God is deeper still."

"And this one....  Ahhhhh, this one.  I think I'll put a tattoo on this one.  It's long enough.  HOPEISM.  I learned how to hang on to HOPEISM and NEVER QUIT with this one....."

"That one?  Well, it's not quite healed yet.  But maybe I can put NDCQ by it.  As a reminder that for as long as we must live our lives with autism - we must as Mack says, 'Keep dreaming, Keep daring, and Keep doing.'   We are not dead and we cannot quit."


I love looking at that picture of the sunflower bud.  I love that it reminds me of Hebrews 11:1 -- "Now faith is the substance of things hoped for, the evidence of things not seen."

Every evening when I would go water it, I would look at that bud and see HOPEISM.  I would see Brandon's healing that I know is inside him.  And since consulting with our new doctor, I've watched that healing bloom into the Sunflower I've always believed was in there.

It's hard to believe that like in Romans 8:18 above - if anyone had asked me a year or two or three ago if these present sufferings would pale in comparison to the glory that will soon be revealed in God's time, in God's healing -- I would have to say no.  I could not imagine it.

When Brandon was in bed for three days at a time with no food, no water, not even having moved an inch, no, I couldn't imagine the glory being greater than that suffering. 

Yet now that he is doing so much better, he is healing, getting stronger, gaining weight, beating the yeast....having fewer and fewer seizures, I can now look back and say that yes, the glory of seeing that Sunflower bloom --- HOPEISM blossom --- makes the sufferings of those past three years indeed pale in comparison to God's glory revealed in healing.


Some scars remind me that at times God moves the mountain out of the way.  The challenges, obstacles, hardships.  Others remind me how He moved me to a place of deeper faith and stronger resolve to be able to climb over obstacles he for whatever reason, chose not to move. 

And this one - this scar will be remembered as the time God did both.  He moved the mountain in bringing us a doctor who would help heal Brandon, and he moved me in so very many ways.  He moved all of us in Team Guppy.

I don't suppose it would be right to say "I love my scars."  Quite frankly I could have gone my whole life without a one of them.  But I do love how I'm humbled by them.  What they represent in terms of my faith.  My HOPEISM.  Healing.

It's not that I idolize how they got there, it's that I do my best to give Glory to God in how he healed the wounds.

Romans 8:18
"For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us." 

The Glory that has overwhelmed me on this "Thanking God for His Grace" Friday as our HOPEISM continues to bloom into healing for our Brandon...  and us.

My Marathon...

As a warrior mom of autism, I like to live my life "mission to mission."  Unfortunately, in living that "Life with Autism" - I don't get the opportunity to embark on many personal missions.  But -- in light of a personal challenge, I decided that learning to swim would be a mission I would make the time for.  It started with the realization that even though circumstances in our life with autism most likely will not ever change, we would instead need to change the way we deal with those circumstances.  Change how we do things.  For us, that meant actually getting back to doing things.  Branching out, no matter how hard or impossible that might prove to be.

Buying our "Redneck Beach House" - what we call our Camo-tent for Brandon that we take to the beach, was a first step.  Open beach, open water, wandering Brandon.  Yeah, we live on the edge of stupid and have lost all sense of smart.   When people wonder why they may not see too many families with autism out in the open, that's why.  It's "open."  It's exhausting enough to try and supervise your child, youth, or in my case adult with autism in the locked down confines of your house and yard -- but to try and do that in the outside world -- as Todd would say -- it's often "non-recoverable."  Too exhausting.  And in my case, when your child reaches the age and speed where they can outrun you, it's down right dangerous.  One of the things I miss most about my older son not living at home, is my most used phrase to him, "Matt, go catch your brother!" One of Matt's most used phrases to us, was "Nakaby Alert!"  Oh, the memories....   And come to think of it, between our swimmer-son Matt not ever wearing anything but a Speedo all those years, and Brandon not even wearing that at times -- maybe the NIH or Autism Speaks should fund a study on the discovery of the naked gene. "How being allowed to play naked in the back yard pool as a toddler can influence having a child of your own with autism and the propensity to strip off their clothes."

I digress.

Another one of our challenges was to get an Open Water Diver Certification.  Todd went first, so that I could cheat off him if necessary!  (smile)  He came back from one class and shared with me something I hadn't planned on.  As part of the certification, you had to swim so many laps. While I can swim and stay afloat, I have never learned how to "swim" proper swim-strokes.  With goggles on, face in the water, etc.

Challenge, on.
(I wrote a separate blog about that challenge.)

I am so proud of myself for overcoming so many things to be able to be a real lap swimmer.  The only challenge that remained, was one which relates to my "Life with Autism" as well.

The marathon vs sprint analogy.

I would be in that pool several times per week, and see all these graceful swimmers swimming steadily back and forth.  Over and over.  Not stopping.  And there I would be, gasping for breath at the end of each lap, not being able to swim non-stop.  It frustrated me to no end.  Why couldn't I swim like them?  Then it hit me one day...  I'm swimming just like I'm living my life with autism.   I've heard over and over and over about how "Autism is a marathon, not a sprint" and I really wanted to punch those who said that in the face.  I have even said that a time or two in mentoring new parents, and I regret it.   Maybe to some, autism is a slow, steady, controlled marathon run.  But my life with autism is a series of sprints that leave me breathless and gasping for air by the finish line of each day.  It is high intensity interval training where at times there is not even the benefit of a recovery phase.   Those months where the yeast-beast had a grip on Brandon was one such period of time of no recovery.  Not even in the wee hours of the morning.  It was simply one long non-stop spring.  It really always has been.

In my life with autism, no matter how much I would like to pace myself, it's nearly impossible.  When school is out, you pick him up, come home and must do his routines, his meals, while at the same time trying to cook your meal in between 30 minute toilet times.  There is no marathon in that. It is a constant series of non-stop sprints.

And that's exactly how I was swimming. 

My life so conditioned to autism's demands, that even the cells in my muscles had forgotten how to pace themselves when given the chance.  My husband had said this to me over and over at church, "Slow down!  It's not a race!"  He would want to casually walk to the sanctuary, stop to say "hi" to folks, etc.  But no, there's Shell -- sprinting to the sanctuary.  Afraid some autism disaster will happen so I must get there and get settled before it does.  Life with Autism had all but obliterated my ability to switch gears.  They were hopelessly stuck in overdrive!   Same with swimming.  No matter how I started out from the wall, by the time I got to the other wall I was out of breath.  Too afraid that somehow I would hear my phone ring from my bag on the side of the pool indicating Brandon had a seizure and I would need to go get him.  My body so conditioned to those calls the past three years, the past decade, that without even thinking it, my body was swimming as fast as it could in case that lap would be the last and I would have to yet again leave an activity or cancel a meeting or appointment to go get Brandon.

I think that's what had kept us from doing things.  We never got to finish anything we started since autism, so eventually we quit trying.  Realizing that was liberating.  For me at least.  I dropped once again the stress of trying to be like or live like, typical people.  I may want to live my life with autism like a marathon, but my son's autism dictates that I must sprint.  And hope that there might be a few recovery times between the intervals where I can catch my breath!

Once I realized why I was doing that, swimming so darn fast because I was afraid the phone would ring and I would have to leave, - I finally allowed myself the luxury of trying to swim a marathon instead of a sprint.  I forced myself to go slow motion, to swim long easy strokes where I could breathe fully between each stroke so that I could swim a 25.  Then a 50.  Then a 100.  Within two weeks, I was swimming a mile non-stop.

And you know, that phone never rang once.

I'm still working on being at peace with what I can do -- not what I wish I could do.  When I walk the Nature Trails, I see the runners going non-stop.  Sometimes I wish I could do that, but with a torn ACL and stress fractures in my back, it will not be worth it to try that.  I will never be them.  I don't want to be them.  I need to be me.  I need to keep the focus on challenging me to be the best me.  Not the best them.  They can run their 5K's and their Boston Marathon's.  I'll swim or walk my 5K and my marathon and be just as proud of myself.

For me, life with autism might always be lived more like interval training sprints than a marathon.  Typical parenting may indeed be a marathon, but for me, autism parenting is certainly anything but.

My goal is to quit trying to change that.  You can't slow down and pace that which by its very definition cannot slow down or pace itself.  That's where all my unnecessary stress came from.

All I can do is find other things in my life to balance out that sprint.

For me, swimming is my marathon.

That recovery.

I am so thankful I challenged myself to do that.  Each day I look at that pool, look down my lane, I can't wait to get in and begin.

Who knows, maybe someday I'll even learn how to do a flip-turn...