On being forged into a warrior mom

If I could summarize our journey from Hell to HOPEISM, it would be in my faith, which I call HOPEISM. It has been my weapon of choice to get me through each battle I have had to fight in my mission to win our war called life with autism and seizures. Vaccine injury to be more specific. It would also be in committing to heart, soul, & mind the words and motto's from Forged, NDCQ, the Lone Survivor, and Levi Lusko in his book, "Through the Eyes of a Lion." I will be forever grateful to the inspiration, encouragement, and mental fortitude found through all of them collectively. Because of that, I am not allowing this tragedy of vaccine injury that has come into our lives to be an obstacle to being used by God. I am instead turning it into an opportunity to be used like never before!

This blog is dedicated to Brandon. His life has been forged by difficulty, obstacles, & all too often because of seizures - pain, blood, broken teeth, & broken bones. Yet through all that he has shown such fortitude. The bravery, strength, & resilience of a true warrior. He taught me that having strength through adversity means that even if you lose every battle, like the Lone Survivor, you never quit fighting until you win the war. That in the words of "NDCQ," you keep "dreaming," keep "daring," & keep "doing." As Team Guppy has yet to be able to escape vaccine injury, we have no choice but to as Levi Lusko writes, "Run toward the Roar." God has indeed given us such incredible power in enduring such impossible pain.

Some days the HOPEISM in that simply takes my breath away.

November 19, 2013

Of Idiocy, Indifference, & the IACC...

Warrior Mom's of Autism are pretty potent.  Everything about them multiplied over typical mom's.  You could probably get by with lame excuses of being too busy in not helping with a bake sale or something, but with warrior mom's and advocacy, that ain't gonna fly.  When warrior mom's ask you to do something, you don't tell them you're too busy.  They'll laugh at you if they don't smack you upside the head first.  No, when a warrior mom asks you to do something above and beyond the above and beyond you already do, - you simply find a way to do it.
That's what the warrior mom's who went to Washington, D.C. did. They asked me to go to Washington, D.C. with them to give oral testimony at the IACC.  I went over my list of excuses why I couldn't, then abruptly had to quit because they had the same ones, they're autism mom's too, yet they were going.  Then I came to a big one that I thought would for sure get me out of it "smacked-upside-the-head" free....   Money.  I simply had none to even justify using to go.  So I told them I simply couldn't afford to go.  Even that didn't stop them though.  They proceeded to plan our trip.  In my brilliance I thought I would play chicken with God, I guess you would call it.  I told Him that if He wanted me to go, He would have to send me a ticket to go.  Note to self:  Never play chicken with God.  He'll call your bluff.  

A business person in the Autism community who I have met at different conferences and resource fairs over the years, bought me a ticket. So, off we went to Washington, D.C.  I want to share that though I am writing this from my perspective only, there were other parents who made the sacrifice to be there and who shared their testimony:
Carolyn Gammicchia
Carol Fruscella
Dawn Loughborough
Megan Davenhall, who read the written testimony of Lisa Joyce Goes

What was so surreal for me in even being there in Washington, D.C., is that the last time Carolyn, Carol, and I were there together, was for the 1st Autism Rally & Congressional Hearings on Autism.  Thirteen years ago.  That we even had to be back there still fighting the same exact fight, was very sobering.  Depressing really.  Will the next time we all converge there be when we're in wheelchairs?  I pray not.  But make no mistake, the caliber of women I was with that day in April 2000, and that day on November 15, 2013 -- is that if need be, we will be.

That's what gives me HOPEISM.  Knowing that despite any differences we each may have in what our child needs - we will find a way to join together, putting all those differences aside, to collectively fight for our children.

Our adults.

When I was last there, my son was a child.

In January 2014, he will be twenty years old.

Which is precisely what saddens me most regarding the autism community.  How lately so many are attacking "their own" so to speak.  Using their brilliance and talent to repetitively attack a select few over and over, accomplishing absolutely nothing but further weakening, further dividing, a weakened and divided autism community.  I sat in that room at the IACC meeting wishing that person were there with us, truly investigating each person in that room who needed to be investigated. Which was most of them.  Using his time, talent, and brilliance in writing to help in the battle of us against them.  Not pitting us against us.

So much time spent in "An Open Letter to ......"  Then because some other organization didn't agree, their own "An Open Letter in Response to......"   How such waste of time saddens me.  The clock is ticking in my life on earth to care for my son; and for groups that claim to represent us to spend such time in wasted effort just tips me closer to the edge of insanity.  I want this to be my "Open Letter to All Y'all's" that says "STOP".  Stop wasting time and effort. We have an autism crisis.  To sit there and nit pick to cover all politically correct bases is a waste of time.  There is room on this autism battlefield to accommodate all who need what they need.  If someone wants a cure, they deserve it.  If someone doesn't, it doesn't need to be forced on them.  "Life with Autism" for my son is a silent, painful disorder.  One that yes, has brought such joy and meaning to our life, but one where my son is very much in need of medical treatment.  Medical healing for him to have the chance one day to talk.  To advocate for himself!  Autism for him isn't an alternate lifestyle where people must simply accept him and adapt to his quirks.  I do not want to, nor will never, view burning hot lava spewing out of his ass as something to accept.  I will never think that in advocating for my son, that he would rather me just accept his seizures that have split open skin, broken bones, shattered teeth, and landed him in the emergency room more times than I can count, as part of who he is.  No, I will watch how he must suffer and know in my heart that that is not the lifestyle he would choose to live.

What I share is my perspective of being at the November 15, 2013 IACC Strategic Planning meeting.  If you want facts and numbers and specific people who said what - I urge you to watch that meeting.  It was truly eye-opening to me, someone who has never been to one before.  And as much as I hated to go and give oral testimony, I honest to God want to be at all further meetings. If for nothing else than to be a presence of truth in a room full of lies.  Someone representing our truth must be at each of those meetings giving oral comments and sharing the truth they refuse to see.  All of us, for every meeting, must make the time to submit written testimony. 

That's perhaps the short version of my take from the trip.

The IACC...
To find out what that stands for and what the role of this committee is, click here.
Parents who care for children, youth, and adults who have an autism spectrum disorder diagnosis, I beg of you to familiarize yourself with this committee.  Take some time to browse through their website and listen to previous meetings.  Read about who is on this committee.  And always, always submit written testimony to be included in the meeting.  So very many of you said that you submitted written testimony, but it wasn't included in the handouts each member received.  You must clearly indicate in your submission to them for specific meetings, that you want your written comments included in public input as written testimony to be made available to each member of the committee.
IACC Website
Public Comment Guidelines

I think one of the first observations was from my friend Carol.  She wrote in my little Mickey Mouse notebook, "We are sitting at an IEP Meeting for this committee and no one can agree on how to write the goal."

What they were trying to accomplish is to put together their strategic plan that would justify  their thirty minutes of wasted time in introducing themselves to each other when the meeting started, and the millions upon millions of dollars spent in doing absolutely nothing of value.

Please click here to read all seven questions they are to answer in that strategic plan.  I kid you not when I say that the five of us parents who were there that day, could have answered those and found studies already done that illustrate our points.  Most autism advocates and parents could, and that was so depressing to hear them all go back and forth among each other and all their fancy titles, and know that they are the ones in charge of helping my son.  When each of us parents in that room knew more than them regarding those questions.

Perhaps to me, the most poignant illustration of that is their "Question Three" -- which is:
What causes this (autism) to happen and can it be prevented.

Not.One.Mention. of toxins, poisons, GMO's, the nutritional deficiency of non-food fast food, vaccinations.


I wanted to cry.  This committee with millions of dollars to truly make a difference, truly help, and not one mention of any of the things that have been proven independently to trigger the biological dysfunctions that cause a diagnosis of autism for so many.

You know what IACC, here's your answer to that question...  Toxins in vaccinations, Poisons in our environment, Genetically Modified Food, fast-food, processed food, multiple vaccinations at once -- all contribute to the epidemic of autism.  To prevent the possibility of your baby being adversely affected -- remove all toxins from vaccinations.  No multiple vaccinations at once.  I would say to not vaccinate, but we'll start with baby steps.  Ban GMO's, eradicate Monsanto's poisons in our environment.

Parents -- not one mention of any of those things were spoken.

Not one.

I hope this puts fear in each person reading this.  Parents must stand up for the health of their children as we did that day.  If we were each not there and in some way mentioning those things, it would not have been mentioned at all.  And that scares me.  Tremendously.

Parents whose children are receiving special education services in the public school, the person representing the Department of Education wasn't even at the meeting.  All of you who are battling schools, who have children who have been in some way bullied or abused in schools, no one was there to represent you.  Not one mention of special education services.

This is where I beg God to have me win the lottery.  I want to be able to be at every IACC meeting to answer their "Question Three" over and over again.  All of you must be submitting written testimony if you can't be there in person, in answer to questions three.

I think at one point in the discussion of the cause of autism, Insel shared about an App for Parkinson's that helps diagnose it based on speech patterns.  He wanted to know if there could be an "App" developed that would diagnose autism.

I can see it now.  "Autism, there's an App for that!"

You know what Insel?  The "App" for that would be that any mother going to her Pediatrician's office to vaccinate their baby - would have an alarm sound that would say, "Danger!  Autism potential!  Tear the consent form in two and walk away!"

There's your "App" for Autism.

It only got worse after that.  One highly initialed 'expert' suggested that we could track mother's based on their cell phone to see where they go -- as some way to determine the cause of autism.

The only tracking that must be done, is who is vaccinated, who is not, and who is healthier.  That question has been asked, and answered, in other countries, with the result being that the unvaccinated are healthier.

That is the tracking parents in this country must demand before they ever consent to another vaccination ever again.

Insel also asked what yard line they are on in identifying autism.  He asked if we are on the 30, 40, etc yard line.... 

Insel, you, and the IACC, aren't even on the field.

In identifying it, treating it, let alone doing all that can be done in helping to prevent the biological devastation to a child's body from it. 

You have no clue.

It was then oral testimony time, and all five of us did very well in the delivery of our comments.  I was so proud to be among such women of strength who stood up and spoke the truth.  Who made the sacrifices to be there.  The teamwork of one person who could be there, sharing the testimony of someone who couldn't be there.  God gave me the strength to get through mine, and the boldness to stare down Boyle and Insel during parts of my testimony.
Click here to view my testimony.

I couldn't take any more after that.  I was physically drained from being in the presence of such disdain and disregard for our children's health.  There was a presence of such lies and corruption in that room.  It's hard to put into words.

My friend Carolyn stayed until the bitter end, and from her recap I know I didn't miss much.  When she shared that one of the members made reference to how perhaps our children could "grow out of it" - I knew I would have been arrested had I been in that meeting.  That Carolyn shared that studying adult issues or services for autism was underfunded by that committee tells me that they even further have no clue.

As I said in my testimony, there's an entire generation who will "age out" of public school/services and who will have no where to go.

I don't want this to be a feel good blog.  It's not.  It must be sobering to each who read it because there is much work to do and there are no excuses for anyone not contributing some part to doing it.

That committee must have parents there at each meeting to be that elephant in the room.

To speak the truth.

Those handouts they receive must be in the hundreds with regard to public comment received as written testimony.

Congressional Hearings are coming up the fist of December, from now until then each parent must be writing to their Congressman or woman with regard to that "Question Three" in what causes autism and what must be done to help prevent it.

Please, I beg of you, CLICK HERE and make your voice heard.  Please support the efforts of so many who are working together for our children.

That night after the meeting, Carolyn, Carol, and myself went on a monument tour.  We needed to just do something fun and for me, try to put aside the depressing reality that is the idiocy and indifference of the IACC.

But the whole time we were on that tour, I kept wondering if it was worth it to even have been at that meeting.  We were but five in a room full of so many who out initial us and who have the funds to out spend our truth and perpetuate their lies.

Then we came to the last memorial.  The wall.  That sobering wall with endless names etched in it.  It was fitting that it was dark, and cold, and raining.  It fit my mood after being in the presence of such dark and cold indifference.

I just stood there and could do nothing but touch the names.  I don't know anyone listed on that wall.  I will never be able to relate to what any of those names went through, except in wondering if they thought their sacrifice was worth it.  I was sure pondering if my insignificant compared to theirs sacrifice to attend that meeting was worth it  If what I said would make any difference.  When they left to go fight a war that perhaps they never wanted to fight, did they wonder if anything good would come from it?  Did they think they should just stay home and let someone else do it?  If they could come back and stand there as I stood there and touch their own name, would they be proud of how they gave their all, or simply regret that they did?  If they could do it all again knowing their outcome would be the same if they did, would they?

I just wanted to cry as I am now in writing this. 

I honor them by saying yes.  It is worth it.  Fighting a battle worth fighting is always worth it, no matter what the odds, opposition, or outcome.

We honor them by never forgetting their war.

We honor our children by Never Quitting our fight.

The November 15, 2013 IACC battle is over. 

The next battles are just beginning.

Please be a part of them.

Congressional Hearings on Autism

January IACC Meeting



written by Michelle M Guppy

November 13, 2013

Standing in the Shadow of God's Glory

Well, this is it!  A third trip to Washington, D.C. to advocate for my son who is severely affected by autism.  My first trip was for the 1st ever Autism Rally and Congressional Hearings  thirteen years ago, in April of 2000.  The second trip was "The Power of Truth" rally regarding vaccines.  This one, to hopefully indeed have time to give my five minute oral testimony to the IACC.

Let's hope this time "13" is a lucky number.  Though I don't believe much in luck.  I believe in HOPEISM, and I have great Hopeism for this trip.  Despite what a gut-wrenching-anxiety-driven-panic-attack hardship it has been in preparation.  I hate to travel.  I hate even more to speak in public.  But when my long-time advocacy warriors urged me to go, I found myself telling God that if he wanted me to, he would have to provide a way.  I simply "ain't got no funds for that."  And, he provided a way.  Someone bought my ticket.  It seems the right time to go.  There is momentum building - many "autism" things have recently happened last week in Washington, D.C., are happening this week, and will be happening in the near future.  Oh, how I "HOPEISM" that change is a' comin'.  But, that does little to make my going there any easier.  I still would rather not, and am kinda counting on an appendix to burst or something minor, fully recoverable, and within the scope of the travel insurance parameters for full refund, to happen before I leave!


The Pastor of my church hit the nail on the head with last Sunday's sermon about Moses.  I feel Moses' pain.  When the Lord sought him out to deliver the Israelites, this was his reply:

Moses said to the Lord, "O Lord, I have never been eloquent, neither in the past nor since you have spoken to your servant.  I am slow of speech and tongue."
To which the Lord replied:

"Who gave man his mouth?  Who makes him deaf or mute?  Who gives him sight or makes him blind?  Is it not I, the Lord?  Now go; I will help you speak and will teach you what to say."

And so, on Thursday morning at 12:39 I will board a plane to Washington, D.C.  Me and my stumbling speech and shaky voice will indeed go.  And I will trust that He will indeed help me speak clearly, and in under five minutes, and give supernatural impact to the words I say.  To the words all of us warrior mom's or dad's there will say on behalf of our children who are so severely affected by autism.

My friend Carol who was also at the 1st Autism Rally and Congressional Hearing, messaged me to pray Ephesians 6.  I ask all of you of faith to pray that for us all (in light of autism advocacy) who will be there on behalf of our children.

The Armor of God

Finally, be strong in the Lord and in his mighty power.  Put on the full armor of God so that you can take your stand against the devil's schemes.  For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.  Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand.  Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace.  In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one.  Take the helmet of salvation and the sword of the Spirit, which is the word of God.  And pray in the Spirit on all occasions with all kinds of prayers and requests.  With this in mind, be alert and always keep on praying for all the saints. 

Pray also for me, that whenever I open my mouth, words my be given me so that I will fearlessly make known the mystery of the gospel, for which I am an ambassador in chains.  Pray that I may declare it fearlessly, as I should.


I thank you again for your prayers for me on Friday.  That God's Power, and Truth, and Majesty, and HOPEISM  overshadows everything the enemy would use to hinder me, and simply leaves me standing in the shadow of His Glory when it's all said and done and I travel back home to the family I so love and who make it all more than worth it.

Please pray for Todd as he cares for Brandon and somehow tries to get to work at some point. 

Pray for Brandon that he sleeps.  So Todd can sleep. 

No seizures so Todd can go to work.


October 18, 2013

Let us run with perseverance...

Every time I go in the garage I see these shoes.

It always amuses me because of how they so symbolize our "Life with Autism" and how so very much has changed since our life became one with autism in it.  I'm haunted by all the negative that autism has brought to our home...  Isolation, Challenges, Financial issues, trying to find medical care, let alone proper, adequate, or exceptional medical care.  Just medical care appropriate for autism.  The list of those negative things could go on and on.  Autism is that all-encompassing.  At least our kind of autism is.

But Todd's shoes make me think of the positives "Life with Autism" has brought to our lives.  They make me smile.  (Ok, once I quit growling from the trail of mud from the front door to the garage.) Smile thinking of where Todd and I would now be if in autism-free yuppiness.  Two careers, two incomes, valuing things over people.  We would never have owned muddy shoes.  We would never have a dirty house.  We would be able to afford maids to clean our house and personal trainers to come to our house and heck, work out for us while we sit by the pool and sip our spirits.  Gah.  I just have to laugh at who we would have become had it not been for autism.

Since we do now have life with autism, we are deeper.  We no longer value the accumulation things, we value relationships with people.  We love dearly our community of friends who have helped us through our Life with Autism.  The prayer partners in our church who have prayed us through our darkest of times of that life with autism.  The few family members who perhaps still have no clue what our Life with Autism is really like, but who stay connected with us in some way -- making us feel less isolated.  We are one income yet have been richly blessed by understanding the true value of money and the true definition of need, versus the shallowness of wants.  We have a non white-glove Martha Stewart house.  It's tidy, but we have cobwebs.  At any given time one can see dust on our ceiling fan blades.  My wood stairwell banister has Brandon's teethmarks all down the top of it.  Our kitchen ceiling has splotches of dried smooshed fruit and applesauce from our never ending supplement taking wars where Brandon most usually wins and the spoils of that victory get splattered on the ceiling.  The white ceiling.  Pretty soon I'll be able to pull off how we are the latest in home decor by having a polka-dot paint job on our ceiling.

Even our clothes reflect our Life with Autism.  I like to think my wardrobe would be vastly different had it not been for autism.  I'd be a properly dressed woman, wife, mother, Christian.  Now, my wardrobe reflects the Warrior Mom of Autism I must be.  I wear mostly Camo & Combat Boots.  Spend just one day in the life of someone who lives with true autism, not the commercial or celebrity autism, and you will see why.  I can't speak for everyone, but for me "Good Housekeeping" has been replaced with medical journals and research abstracts.  That changes you.  It has changed me.  It has changed my husband and I.   To survive autism in our lives, in our marriage, we've had to adopt the mental attitude of a soldier in combat.  From dressing like one to training like one.  Which is where the picture of Todd's boots comes in.  You'd think we have enough crazy in our life with just autism.  But that's another way autism has changed us.  When we get to "have fun" or go on vacation, or even workout -- we do it running a hundred miles an hour with our hair on fire.  Or as Todd does, with combat boots late at night in full Camo running through the woods, though the muddy drainage ditches, being at times stalked and hunted by suburban wildlife.  In the rain.  Oh, that's how we know God truly loves us, when we can do those things we love to do -- running in the woods at night for Todd, walking the Nature Trails for me during the day -- in the rain.  In the pouring, drenching, soaking rain.

What joys we would have missed if not for "Life with Autism."

And perhaps the best way autism has changed us, is in understanding that to thrive, we've had to add humor to all of that.

Lots and lots and lots of humor.


Hebrews 12:1
"And let us run with perseverance the race marked out for us...."
Lace up yer shoes ---life's gonna be muddy at times but you just gotta put on your Camo & Combat Boots and run right through it!

October 1, 2013

My Saving Grace, My Hiding Place, and Who will never let me be lonely...

I need a saving grace
A hiding place
I don't have forever or time to waste
So don't let me be lonely

I wanna shake this winter coat off my sleeve
Dust off a record and just be free
Oh don't let me be lonely
No don't let me be lonely

Those lyrics are from a song by The Band Perry, Don't Let Me Be Lonely.  I think lately they've been my "Life with Autism" lyrics. I have felt at times that I just want to hide from the disappointments.  I don't have forever or time to waste on these blasted seizures that plague my son.  I want to shake the winter coat of "Life with Autism" off my sleeve.  I want to dust off my son's limitations so he can just be free. 

What made those feelings worse is that the other night after he had been sleeping so very well for a couple nights prior - he decided to be up all night.  I had thought I would capitalize on my opportunity to catch up on sleep by taking a Benadryl so that I could get some deep sleep going for once. Bad idea.  I started hearing voices.  At first I thought I was in a horror film with the villian-doll "Chucky" giving me a tour through Alphabet Town.  I kept hearing music and letters of the alphabet and then after brief moments of silence an evil voice saying, "Come and visit the town again, Goodbye!" Over and over again that's what I heard.  When I finally realized I wasn't in the middle of a nightmare or a horror film, yet still hearing that evil voice, I opened my eyes to see just what it was I was hearing.  In my Benadryl-stupor I half expected to see Chucky standing in the doorway smiling at me with his evil blood-scarred face.  But no.  No Chucky doll, no horror movie, no nightmare.  It was something far scarier.  Autism.After.Dark.  It was Brandon in his room down the hall, up at 2am playing with his electronic alphabet game.  In the dark.  As I got up and stumbled to his room to check him, change him, the sheets, and destroy, er hide all the electronic toys, I remember thinking on my walk back to where I was sleeping ---- Why God, why?  Why do we have to do this again?  He was doing so good.  I can't express how disappointed I was as I continued my barrage of questions to God.  Are you there?  Do you hear me? 

I felt so lonely despite knowing that I am far from lonely.  I have a wonderful husband, I have family, I have prayer partners in our church, and I have an autism community of friends.  Friends I may never get to see in person, but who are always a click away.  Yet when it's "Life with Autism" and you're stumbling around at 2am arguing with God in a Benadryl stupor, - you feel alone!  At least I did.  I guess that's why I have to constantly bombard myself with HOPEISM, with Never Quit, with NDCQ.  I have to have a mental attitude superior to my circumstances if I am to thrive in this Life with Autism.  If I'm to survive 2am wake-up calls.  Those times of disappointments, -the things most often not written about or shared about -- but yet that are as profound and powerful as the success stories you do hear about.   We can read all day long about the many hard earned successes and victories in autism -- and we should -- those stories give us hope.  I've shared many stories on this blog of hope in our Life with Autism.  Brandon has come so very far.  But what if you have been on this journey for so long and have done so much - yet still must battle two steps backwards for each step forward?  That has seemed to define our journey for whatever reason.  What Hopeism is there to impart in that?  We tend to not speak of those things.  Those stories aren't as pretty as the other ones. We make it sound like if you do this, go there, and spend that, ---that you too will have those successes.  Many do.  Many don't.  And I think "the don't" stories are just as important.  How you get through those times.  How you still hang on to Hopeism and never let go.  How you never quit.   

Like Sunday...  Oh how I anticipated last Sunday.  I have big goals for Brandon.  Huge.  But for the day-to-day practical goals, I count our days as seizure-free days.  I hang on to the Hopeism of 5 days seizure-free.  That's a lofty goal for us.  And then I sacrifice so much and work so very hard in achieving it.  Watching his diet so nothing triggers yeast to flare.  Spending such great amounts of time executing "Mission: Supplements" daily.  Multiple times daily.  Researching proteins for calories for him and the most pure elemental and amino acid protein powders for him.  Careful not to over-stimulate.  Reading.  Researching.  Praying.  So last Sunday when we hit half a month, fifteen days seizure-free, I cried tears of joy.  No one could be more proud of such a victory.  No one could be more humbled by that victory.  I savored it as any autism mom would savor any such hard fought victory.  I savored it, celebrated it, and then set out to break that record.  Earlier this year we hit 28 days seizure-free.  Almost a month.  We haven't hit that since.  Once we hit a full week seizure free, my goal was then two weeks.  Then a month.  If we can make fifteen days, half a month, then we can make it a full month seizure-free.  I have to live by that kind of Hopeism no matter how elusive it has been these past four years of relentless seizures.  Then Monday morning came.  With it, cluster seizures.  Talk about a buzz-kill.  Laying there beside him in bed that day reminded me of that song again.  I had to laugh, in the song there is a line that goes like this:  Well the night rolls on like a long lost friend, 'Til the sunrise bleeds like the bitter end, Don't let me be lonely...  I had to chuckle, the sunrise truly did bring a bitter end to our seizure-free streak!

(But not to my HOPEISM!)

I'm thankful for my faith that allows me to believe in a God who is deeper than my disappointments.  Who loves me through my loneliness.  My greatest success stories in my Life with Autism have been those that had nothing to do with achievement, but everything to do with having an attitude of accomplishment.  And that is really the only thing I have total control of.  My NDCQ coin sits on my desk, and on one side it says:  I can only be defeated in two ways.  If I give up or if I die.   And really, as a Christian, death can't even defeat me, which leaves, "If I give up" - which I won't.  There is such sweet success in that.  Success worth sharing.  That's what I want Brandon to somehow know.  When he screams in pain or convulses in seizures, I want him to know that I may not have been able to fix it or take them away, but I never quit trying to.  That while I couldn't take his autism burden from him, I carried that burden with him.  That's also what I want my "other son" Matt to have seen in my life.  To always see.  That sometimes things don't work out the way you hoped, but you still press on.  You have an attitude superior to your disappointments.

It was so odd being reminded of those things by a Country song with lyrics that in places could be deemed quite depressing.  But for whatever reason, that song cheered me up from recent disappointments, short-lived victories, and regression in areas I thought we were past.  Many lyrics in that song made me think of verses to cling to in those times I feel lonely...  In fact, late at night I've been singing that chorus "Don't let me be lonely" as if in prayer to God...."Please, don't let me be lonely in these thoughts, through these disappointments...."  One morning I woke up after what seemed like only a few fleeting moments of sleep...  I can't tell you that I heard God's voice in the night, I didn't.  But I can say that I know with all that is in me that God did reply whether I heard it or not.  I can picture him looking down and in a soft whisper answering, "I won't...." 

When we give God the keys to our car and the keys to our heart and let him drive, He promises that he won't ever let us be lonely. 


He promises:
I will give you rest --- Matthew 11:28
I will help you --- Isaiah 54:4
I will supply all your needs --- Philippians 4:19
I will never leave you or forsake you --- Hebrews 13:5
I will strengthen you, I will help you, I will uphold you with my righteous right hand --- Isaiah 41:10
I will fulfill to you my promise, I will hear you, I will be found by you --- Jeremiah 2
I will direct your steps --- Proverbs 3:5
I will take revenge, I will pay them back --- Romans 12:19
It will be worth it --- Romans 8:28

He is my saving grace:
"For it is by grace you have been saved, through faith - and this is not from yourselves, it is the gift of God - not by works, so that no one can boast."Ephesians 2:8-9

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
2 Corinthians 12:9

He is my hiding place:
"You are my hiding place; you will protect me from trouble and surround me with songs of deliverance."
Psalm 32:7

He is the freedom for Brandon that I so desire:
"Now the Lord is the Spirit, and where the Spirit of the Lord is, there is freedom."
2 Corinthians 3:17

When I'm laying there weary and worn as the night rolls on like a long lost friend, 'Til the sunrise bleeds like the bitter end, and I'm asking God to not let me be lonely ---- all I need to do is "be still and know that He is God."
Psalm 46:10

I just love that song because it reminds me that I am never lonely.  As in the chorus of that song, He will never let me be, let me be, let me be lonely -- ever.  Not at 2am.  Not on a Monday morning abrupt ending of a seizure-free streak.  Not in the good, the bad, or the ugly.  Not in anything.  Not ever.

"I am with you always, even unto the end of the world.”
Matthew 28:20

There is such HOPEISM in that! 

My HOPEISM that's such a beautiful thing!


Click here to listen to Don't Let Me Be Lonely

September 29, 2013

The Angry Family...

Today is Sunday.  Last night I was up all night waiting for and this day.  I sat at my desk all morning in anticipation of Brandon waking up.  Would he, or wouldn't he...

For the last four years my sweet son who is significantly affected by vaccine induced autism, gastrointestinal disease, immune dysfunction, and a host of other things, has also battled relentless non-stop seizures.  Four years we've lived through those with Brandon.  Four years of praying, crying, begging the medical community for the help it knows not how to give for this new man-made disorder called autism.

But today, Sunday, with the help of a doctor we pay out-of-pocket for, would be fifteen days seizure free.  We haven't had that in quite a while.  Once so far this year we've had 28 days, but not since March have been been able to get close to that mark again.  Brandon's immune system is just too weakened from numerous assaults and numerous years of neglect by the very medical community who created his autism with their vaccine spree equal only to our Governments spending spree.  I sat at my desk with Brandon asleep down the hall....waiting.  Typically his seizures occur upon waking, which is why for the past four years, we dared not wake him.  Not to be on time for school, to be at an appointment, to go to church, -- nothing.  He was having enough seizures other times of the day, we dared not do anything to increase that number.  We have added that as yet another thing autism demands that we must not argue about, because as we have learned, in those instances, autism wins, leaving Brandon to pay the price.

Then I heard it, his feet hitting the floor.  No, not in a seizure, but in waking up.  I grinned so wide.  I thanked God so greatly.  He did it.  Made it half a month seizure-free.  God did it, Brandon did it, his doctor who is 'in it to win it' did it.

This day was a day to rejoice.  Finally, tears of joy for however long they last.  Tomorrow, he can have a seizure. I can't worry about that.  I'm too excited about today's victory.  If we made 15 days, we can make 20.  If we make 20, we can equal that 28 day record.  If we can do that, we can do just two more days and make a month.   I live my "Life with Autism" seizure-free day by seizure-free day.  Seizure-free record by seizure-free record.

  Hopeism by Hopeism.

Which is why my jubilation of joy in today's record, today's hard fought record for Brandon, for his doctor, for us, was marred by having had the unfortunate displeasure of reading yet another blog trashing those in the autism community who have done, who do, some pretty darn good things for autism.  For my son.

After I read the blog, I was so crushed, so disappointed.  It was like the fourth or fifth such blog from this individual on a seeming vendetta in public.  I've read them and can make no sense of it, except that it creates further divide in a community with way too many divisions already.  I don't want to make sense of it either.  I am too busy working each second of each day trying to hit those seizure-free milestones.  Trying to reclaim what they took.  They who are outside the autism community, not they who are inside it.  I can't believe we've slain all the jabberwocky's there are to slay outside the autism community, to have time to behead anyone in the autism community.

I look back at my autism journey with my soon-to-be twenty year old son, and I think of all who have helped me get him to where he is today.  Who has helped me most.  And it's been the very people who have been trashed recently.  If it weren't for the editors of Age of Autism I would have never known about Dr. Wakefield's work and Thoughtful House Center for Children where I scraped my pennies for months to drive my son there for a scope. A scope that changed his life, and ours.  Finally, someone saw very real medical issues that weren't called, "It's just autism."  Finally someone treated our son medically.  Finally, after a decade, our son didn't live his days diarrhea episode by diarrhea episode.  If it weren't for Adventures in Autism I would have never known all the information I know about vaccine links.  I would have continued to blindly believe my doctors who said there was no link.

I don't care who didn't do what or who didn't play fair with who at the last hearings on autism.  They were hearings on autism that we so desperately needed.  I didn't get to speak on behalf of my son either, and I guarantee that what I would have had to say would be just as controversial as anyone,  but I'm not blaming anyone.  I made sure his voice was heard in the letters I wrote to those in that committee.  We all have that opportunity.  The opportunity to beg of them to hold more hearings, so more can have the opportunity to speak.   Not nit pick and blame and point fingers for whatever reason.  I sat glued to my computer screen all day watching those hearings.  I didn't see anything hijacked.  What I saw was a hearing on autism.  What I heard repeatedly was members of that committee asking about the autism/vaccine link.  Asking questions of the CDC that the CDC could not answer.  I whooped and hollered all day watching that.  I cried tears of joy that maybe, just maybe we were getting somewhere.  But ever since then instead of capitalizing on that momentum, I've unfortunately read negative blog after negative blog about it.  And let me tell you, if all of that makes those members of Congress not want to mess with it again, I'm going to be one very angry warrior mom.  How dare anyone do that to our kids.  My son needs these hearings to happen this November.  My son needs everyone in our community and who claims to write about it, serve it, investigate it, and speak for it, - to be on the same team of us versus them.  Not us versus us.  When we win that fight, then by all means fight each other.

I am a veteran in this "Life with Autism" who has seen it all so to speak, yet it still stuns me when I see us acting as "The Angry Family" as portrayed in a story written by a little boy in Everybody Loves Raymond.

That's how they'll see us.  Those in Congress who must help us.  Anyone really.  They'll only see us as the angry family and not want to be a part of that.

Watch this video clip below: 
 Click here for video 

That is us.  Today, when I should have been rejoicing all day, I was instead equally saddened by that blog.  That hurtful, hurtful blog against those who have done the most to help us.  And when you think at how few actually help us, it's even more heartbreaking.

After that clip, in that episode the family met with the Reverend of their church.  They all sat there and blamed each other for why the little boy wrote about the angry family.  That is us.  Everyone blaming each other, except for who is the true blame. ThemNot us.

The Father sat there and listened to them all make fools of themselves, then very calmly said this:
"Nobody wins in this game.  Least of all the children, which is what I got out of this book - The Angry Family."  He then pointed to each adult in the room and said, "It's not about you or you or you or you, or even you.  It's about this little guy and his sweet simple way of giving you a message."

My son is that sweet little adult guy who is silently screaming that message.  Begging us to help them.  And how do we answer?  By hurting the few who actually have helped.  Who continue to help.  I'm reminded of a few lines of my favorite song, and how I've prayed all day long that our community has something better for my son while he's alive... That it's not only until this generation has died, drowned, or have been murdered by their mother's when people stop listening to their pride and start listenin' to the plight of the 1 in 50...

A penny for my thoughts, oh, no, I'll sell 'em for a dollar
They're worth so much more after I'm a goner
And maybe then you'll hear the words I been singin'
Funny when you're dead how people start listenin'

September 23, 2013

Holding Unswervingly...

In church this past Sunday our Pastor was talking about Faith.  And as typically happens, I relate things to my "Life with Autism."  I found myself really inspired by one scripture in particular that he shared.  Hebrews 10:23 which says, "Let us hold unswervingly to the hope we profess, for he who promised is faithful."  
Hold unswervingly.  I really like those two words.  One of the most often asked questions I get in e-mails from parents when they find out how old my son who has autism is, and how much we've been through, -- is "How do you stay positive?  How have you coped so long?"  By holding unswervingly to the HOPEISM I believe in and profess because he who promised is faithful.  That verse, Hebrews 10:23 is my HOPEISM, it's the NDCQ I live by.  It promises that God will meet my needs if I stay the course and persevere.  It doesn't promise that it will be easy.  It doesn't promise fast results.  It simply promises that if I hold unswervingly to hope, he who promised will be faithful.

Do I get tired of waiting for those promises?  You bet.  I am tired.  I am weary.  I am simply worn out from life with autism.  But I don't see any other option than to hold unswervingly.  It was really interesting to me to hear our Pastor share how Noah waited 120 years for the flood to finally come.  He was preparing, building, waiting, for 120 years.  With my son, I've been praying, waiting, advocating, fighting, caring, sharing, appealing, writing, researching, treating, going broke, - for seventeen years which at times has seemed like a lifetime.  Until I heard about that 120 years!  Noah could have given up, but he didn't.  He held unswervingly.  When Jesus was in the desert sweating blood, knowing what was to come, he could have given up, but he didn't.  He held unswervingly.

My Brandon... I just can't comprehend the things he has felt these past seventeen years.  Pain, frustration, fear, sadness, confusion.  Yet he never quit.  No matter what he's been through, he is still happy.  He has yet to let those things defeat him.  When he feels pain, he gets frustrated, but then in the next moment we get a rare Kodak moment of a smile.  Me, when someone doesn't answer an e-mail or I feel betrayed by something or someone, I brood about it for hours or days.  But not Brandon.  He has no choice but to hold unswervingly whether he knows what that means or not.  He can't quit his autism, which is why I won't ever quit helping him overcome it.

When I'm tired, I will hold unswervingly.
When I'm frustrated by lack of progress, I will hold unswervingly.
When I'm heartbroken by seizures, I will hold unswervingly.
Through fear of the future, I will hold unswervingly.
Through obstacles, advocacy, challenges, and disappointments, I will hold unswervingly.

When my prayers aren't answered in the way or in the timing that I want them to be, I will hold unswervingly.

I will simply hold unswervingly to HOPEISM.

I liked the next few verses from the above scripture as well, which said, "And let us consider how we may spur one another on toward love and good deeds.  Let us not give up meeting together, as some are in the habit of doing, but let us encourage one another -- and all the more as you see the Day approaching."

As it applies to "Life with Autism" -- let us also hold unswervingly to one another as we spur each other on in our autism advocacy. Let us never quit going to each other for fellowship and friendship.  Let us encourage one another -- and all the more as we see the day of reckoning of what was done to our children approach!

To holding unswervingly!


September 5, 2013

Finding strength in the suffering.

I love this picture and quote from Forged Clothing

Sometimes we're tested. Not to show our weaknesses, but to discover our strengths.

I'm not in the military, and I don't know what it's like to do log PT as in the picture,  but I love to apply the principles and beliefs of those who created Forged and who their clothing is in honor of and helps support --to my everyday life as a "Warrior Mom of Autism."

I had occasion to visit with a friend over dinner recently, and something she said has really been tugging on my heart.  When I saw the above picture and quote on my FB news feed, I was reminded of what she had said....  (I love Christian friends who make you think deep thoughts..... Well, deep to me.)  She said something to the effect of, "We want to be like Christ, but we don't think it means we might have to suffer like Christ did...."   I didn't quote that exactly, I don't remember her exact wording.  I just remember being very moved by the implication.  We want to be like Christ -- but not the suffering Christ.  We would rather be like the "Don't Worry Be Happy" Christ as the world tends to portray him at times.  Again, I'm no theologian, but I don't recall God ever saying he came so life would be easy, or that if we did good, the world's fortune and prosperity would come to us; but rather that by following him we would receive faith, hope, love, grace, and mercy.  And that he would see us through --- to eternity.  Many days our "Life with Autism" has been nothing short of suffering for my son, for me, for our family.  Some days the HOPEISM of God's promises is all that has (and does) see me through. 

I'm currently going through Experiencing God Bible study.  One of the pivotal points of the study is coming to a "crisis of belief."  I remember vividly what mine was from the last time I went through this study....  It was during a horrific seizure cycle when Brandon would have atonic seizures. He was falling all the time.  Once when he fell he broke his ankle.  We didn't know that he broke his ankle until I saw him on the trampoline jumping with an ankle the size of a softball.  You've never lived as an autism parent until you have naively allowed a cast to be put on your son who has severe sensory dysfunction.  By the second night, on a Sunday when the doctor's office was closed, my husband and I found ourselves sawing the cast off with a pocket knife and pliers, chip by chip, using anything that would get it off our screaming son who could not handle it being on not one second longer.  During that seizure cycle he was falling against counters, once hard enough to need stitches in his eyebrow.  I know I'm not supposed to swear, but I do swear that the emergency room doctor that morning was an Angel.  How he got eight stitches in Brandon's eyebrow without his eye ending up as a pin cushion, I'll never understand.  During another fall he broke his clavicle.  The third doctor visit and x-ray was the charm in figuring that out.  I kept telling the doctor something was wrong, he was leaning funny getting in bed, but we couldn't figure out what it was.  Arm not broken.  Shoulder not broken.  Ahhh, the joy of having a child who can't even tell you where it hurts...   Finally, clavicle x-ray...bingo! We prayed and prayed.  Oh, how we prayed for those seizures to stop.  For them to not take from our son what was his best and brightest most perfect asset -- his smile.  His perfect white teeth.  Oh, how we prayed for him to not have a seizure, fall, and break his teeth.  For the one thing on his body that could not heal -- to be spared.  I guess I in particular prayed the hardest for that to not happen...  His smile was the only thing that could shatter his autism.  The rare times he would smile, oh my goodness, those were the times you couldn't see autism.  The times I simply saw my Brandon.  And that meant everything to me in our world that was slowing being torn apart by autism.

Then it happened.  I knew what happened the moment I heard the sound.  We lived an arm's length from Brandon, if not an arm locked around Brandon in case a seizure hit.  The one time I wasn't holding him or within arms reach to catch him, a seizure hit and he went face first on my tile floor.  I still have post-traumatic-stress from that.  The sound, the sight, the shock. Neither will go away.  I can't imagine how much more profoundly multiplied that is for those who have been in military combat...  Oh sweet Jesus, be with each of our military men and women who go through that... That was my crisis of belief.   Through my tears I screamed over and over, "Why God, why?  Why would you do that?" Oh, I was angry at God.  Livid.  I hated God in those moments and I didn't understand how he could do that to my son.  How he could let satan win like that!?  But even in that, I remember another question I knew I had to ask, and answer, before I let the anger of my flesh penetrate to my soul.  I had to ask myself, "If the thing that I prayed for the most to not happen, happens, will God still be God?"

I could barely hear myself choke out a whisper of a .......yes. God is still God even if the thing you prayed for the most to not happen, happens.  God is still God when prayers aren't answered in the way we asked them to be.  God is still God in the suffering, the betrayal, the challenges, the silence, the autism, the anything.

When we make the choice to give our lives to Christ, we need to understand and accept that it might also mean we have to suffer as He did.  Perhaps not in the way he did, but still experience some level of suffering.  Like the quote, I don't think He allows those times to expose our weaknesses, but for us to realize what strength we can find in Him. That gives me such joy. And it's that joy that I respond with when satan snickers and sneers at me with each time Brandon has a seizure, each of the times his teeth were shattered and his smile ruined.  Joy in knowing that even though I do not understand it at all, nothing happens without God knowing. There is a purpose and reason in everything.

While I would like "Life with Autism" to be a bit easier -- I do realize that I am who I am more from suffering I've been through than from the good times I've enjoyed.  Brandon is the warrior he is because of the battles he's survived.  If suffering draws me closer to God, then that's where I want to be.  Gulp.  I don't want to live in ease which leads to complacency.  I don't want to just get by.  I don't become stronger there.  I become stronger through the things that draw me closer to Christ.  And if that means suffering...... Aye...

That's where your faith is tested.  I don't speak for anyone who has gone through the training that picture portrays, but I would imagine those who made it through, didn't do so without a bit of suffering.  A whole heap of suffering.  But to get what they wanted, to pursue their "prize" so to speak, they had no choice but to go through it, and be all the better for it.  That's where I want to be.  In the pursuit of the prize of drawing closer to Christ.  And I just don't think you can get there, truly there, without a bit of hands on suffering.  In that picture above they are doing "Log PT."  I was reading online about that, and there is a famous log they used (not sure if they still do) that was named Old Misery.  She's a 300 pound beast.  It seems those who fail to work together as a team in lifting the "lighter" logs, are sent to Old Misery to work together lifting that as punishment.  It says that carved in Old Misery are the words, "Misery Loves Company."  I guess the "company" is in who misery defeated or who defeated it!  In who passed the testing of resolve.  Who was made weaker by Old Misery in perhaps quitting, or who discovered strength they never thought they had, in surviving it.

Some days there are many aspects of my son's autism that illustrate that.  His "Old Misery" - not in punishment but in terms of "cross to bear" is his seizures, his GI Disease, his communication barriers, being non-verbal, his immune disorder, methylation issues, etc.  Yet what those things bring out in him, and us, are determination, courage, strength, endurance, perseverance, patience.  Those men doing that training in the picture, don't get to become what they're training to become without great cost.  Without great suffering.  But I bet if you would ask each one who endured, who maybe survived Old Misery and much, much, more, if it was worth it, if they were changed for the better, made stronger, and for some who are Christians, stronger in their faith --- they would agree they were.  They may have hated every exhausted, cold, wet, sandy, blistering minute of it, but they were made stronger for it.  There is no way they could be prepared to do what they might have to one day do -- if they didn't go through the suffering in training first.  I'll never know what having to lift Old Misery or any of those logs felt like, but I do know that at times it's felt like I was made to carry my own 300 pound beast of a cross.  My Christianity is no different in that respect. I am training to be more like Christ and it isn't going to always be easy or fair or without suffering.  But it will be worth it.  God promises that.

I'm not sure what my crisis of belief will be this time around in Experiencing God.  Perhaps it will be in resolving how much I hate the suffering parts of "Life with Autism" with how much I love the joy and HOPEISM parts I've experienced in "Life with Autism." Whatever it will be, all I can do is each morning keep on singing the song, "10,000 Reasons" by Matt Redman....

The sun comes up, it's a new day dawning
It's time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes

You're rich in love, and You're slow to anger
Your name is great, and Your heart is kind
For all Your goodness I will keep on singing
Ten thousand reasons for my heart to find

And as far as "Misery loves Company" part?  For me I am so very thankful that in my "Life with Autism" --- through any suffering I must endure, I have the most awesome sisterhood of Warrior Mom's (and a few Dad's) one could ask for.  To laugh with, cry with, be my snarky self with, pray with --- and grow stronger through the trials with.  The men in that picture, those who endured, who got through it, are brothers for life because of the suffering they went through together.  Equally strong yet in a different way, is that sisterhood of Warrior Mom's and Dad's.

To any of my sisters (and brothers) in Christ going through times of suffering, the lyrics of this song are for you...

The Servant Song, by Marantha Singers

Brother, let me be your servant
Let me be as Christ to you
Pray that I might have the grace
To let you be my servant too.

We are pilgrims on a journey
We are brothers on the road
We are here to help each other
Walk the mile and bear the load.

I will weep when you are weeping
When you laugh I'll laugh with you
I will share your joy and sorrow
Until we've seen this journey through.

When we sing to God in heaven
We shall find such harmony
Born of all we've known together
Of Christ's love and agony.

Brother, let me be your servant
Let me be as Christ to you
Pray that I might have the grace
To let you be my servant too.

When suffering is unavoidable, the joy of the Lord becomes my strength.

I just love the HOPEISM of that.


August 24, 2013

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!


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.

July 29, 2013

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To God be the Glory

~ ~ ~ ~ ~ ~

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

To each of you ---

Keep Dreaming.

Keep Daring.

Keep Doing.


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