Provision: Then, and now...

Brandon’s Helmet – and how God, through my son’s teacher, ---  provided.

I am mom to Brandon – my 9 year old son who has Autism, Mental Retardation, and now – a seizure disorder.     To have a highly mobile child who loves to climb and does not understand danger, suddenly develop seizures where he blacks out and falls, has been interesting to say the least – not to mention challenging.  But what I have come to realize through this, is that God provides.  Psalm 23 tells of the “Lord being our Shepherd”.  He knows my son, he created him….  He knows what struggles we will face before we ever face them….  And He provides the direction to get through our struggles – just like a Shepherd who leads his sheep out of danger. 

Before our son developed Autism, he would wear hats.  We have baby pictures of him in cute little hats to match his outfit.  I have a picture of him at 14 months hanging on my wall – of him wearing a hat.   It’s the last picture I have of him in a hat.   When he developed Autism – he could no longer stand the sensation of ANYTHING touching his head.  We would try to put a hat on him – and within a microsecond – it was flung across the floor followed by a rather loud shriek of protest.   It was a challenge to brush his hair, brush his teeth, or wipe his nose!   Let’s not even get into what a challenge it was for the Pediatrician to check his ears!

So, we gave up on him ever overcoming the sensory issues related to his head.  We just did the things we had to do, and left it at that.  Bigger issues to tackle we figured.  

Time went on, and one day his teacher at school decided that she wanted Brandon to learn to wear a hat like the other kids do.  She asked if she could write that in as a goal to work on – and I said “Go for it” – thinking that inspiration would last about a day when she found out how hard it would be!  But, she stuck with it.  “The patience of Job” is how the other classroom teacher describes Nancy.    With determined tenacity, she did desensitize him.  First with the hat on only a second at a time, then longer, then longer.  Soon Nancy sent home a picture of Brandon wearing a hat, with a note that now Brandon will walk around the halls at school with his hat on ----  just like the other kids….   I was duly impressed.  At the time, I didn’t really see the huge importance of that, and secretly thought of other goals I wished it was that he had mastered.   But, wearing a hat is an accomplishment, it IS a big victory for Brandon. 

Three weeks later – Brandon developed a seizure disorder that causes him to fall suddenly, and hard, usually face first.  One of the first things the Pediatrician did – was give me a prescription to go have Brandon fitted for a protective helmet to wear to protect his head and face when he falls….   Now if I had had to go through the long tedious process of getting Brandon desensitized to wear a helmet --- while dealing with the seizures, the doctors, and the shock of it all ---  I would have been ready to count the flowers on the wallpaper of my padded cell in the nut house! 

Brandon actually seems to like wearing his helmet!

Some may call it purely coincidence that Brandon’s teacher taught him that skill at that time – but I call it pure provision.  God, being the Shepherd he is, knows our needs and and provides for them.  He is our creator, our shepherd, and our provider….  I wanted the teacher to teach my son something more important and more academic than wearing a hat – and God knows my son needs to learn those things too --- but first – God knew Brandon needed to learn to wear a hat……

Perfect timing, from a Perfect God, who perfectly Provides.

Written in 2003 by Michelle M. Guppy

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ 

That was then, this is now...2013.

Exactly a decade later.

During that time we've had many cycles of seizures to deal with.  More stitches, more staples, more broken teeth that had to be repaired.  Another fitting for a bigger helmet.  More moments of him defying death in falling from places that should have killed him, but didn't.  More heart-stopping moments when Brandon did stop breathing and needed to be revived by CPR.

We've rejoiced in the few years that were seizure-free during that time.  Oh how precious they were.  Those years when we were allowed the luxury of just dealing with autism.   Crazy without the chaos. 

And now, during the last three years of the relentless seizure-cycle he has been in, we've once again experienced how God provides.

This past seizure-cycle has been epic.  Oh, allow me to stop for a moment and just savor that.  This. past. seizure. cycle.   Past.  Whenever we go more than a few weeks without a seizure, we officially retire that seizure-cycle.  The great seizure-cycle of 2010 is now over.  Done.  Past.  History.  And with good riddance.  It has taken the greatest toll on him, and us, simply because of the myriad of other health issues that have been going on at the same time.  Chronic viral issues, chronic yeast issues.  Flare-up's from the chronic gastrointestinal issues.  And as is always the case with autism, who knows what else is going on that we haven't figured out yet.  I hate to admit having had such thoughts, but I have had dreams where I had to try and find the words to share with those who have prayed so hard, tried to help us so much, that Brandon did not recover from a seizure.  That's how bad some of those seizure clusters were.  But as I wrote about in my "Letter to satan" -- with each of those very bad seizures, God said no.....  It wasn't Brandon's time yet.

As we do with all other seizure-cycle "exit interviews" - we now pause and reflect on just how great God is.  Just how much he provided for us, though not in the form we had hoped in him stopping the seizures.  When we wanted.  How he was there with us each step of the way.  From the abundance of prayers from faithful family and friends, the bountiful harvest of support from our autism community, the advice, suggestions, --- all of it making us feel that our son was their son too, - to realizing just how strong the bonds of our faith are, in at times being the only thing that held our marriage and our sanity together through a very, very tough three years. 

With the seizure-cycle from the above story from 2003, God provided a teacher for Brandon who would get him ready to wear a helmet.  For nine long months, summer months at that, Brandon had to wear that helmet every waking moment. 

With this past seizure-cycle, God provided a physician for Brandon who would help implement the treatments necessary to help his body heal and not have to react with seizures.  And he provided a friend even more bold and relentless than his seizures -- who would bring Brandon and that physician together. 

Once again, perfect timing, from a perfect God, who perfectly provides.

I just have to marvel at that. 

And at how prayer always - always works like a pebble thrown in a pond.  It's ripples extending further and further and getting more powerful - finally ending in provision.  In one form or another.

For us last time, a helmet.

For us this time, a physician.

For us each time, God's provision.

Just as he promised.

And just as he has always delivered.

Time.

After.

Time.


Written in 2013 by Michelle M. Guppy

Autism's Swan Song

Reflecting on this Autism Awareness Month --- particularly the oddities of yesterday.

It was an ending of sorts. Brandon's last office visit with our longtime Pediatrician. He's the only Pediatrician Brandon has ever had. He walked in the exam room and said with a smile, "So, this is our Swan Song...."   I remember thinking how odd that was for him to say that. We've had a love/hate relationship the entire time. He loved vaccinations, I hated them. We would banter back and forth with our facts. Well, his fantasies and my facts. But, he was nice, he did what I asked of him in terms of paperwork for Brandon, and my other son liked him, so we stuck it out. No sense breaking in new ones all the time. Especially since they're all bound by the same Pharma-brainwashing.  While he would begrudgingly order some tests for my "wild goose chases" and "quackery" as I'm sure he called them; I can honestly say that as far as autism, he never did a thing for my son.  So how can one have a 'Swan Song' to a dance that was never danced?  How can you have an ending to something where there was never a beginning?

There lies the root of our autism travesty. At least mine. And it's why I have hated every single autism month anything I have seen. Like my Pediatrician, autism organizations and agencies make it out to be this great Swan Song - this great finale to the hallucination that anything of use has been done for the rampant epidemic called autism.  This great ending to an autism treatment performance that has been non-existent at best.  To the healing that for most is out of reach.  To services, supports, and respite that has yet to be offered. 

Sharing facts about autism awareness, pumping people up about it, encouraging them through it, - posting perfect pictures about it -- that's not what this month is about.

But finally...

Finally,  I had the chance to experience what this month is about. In finding a doctor who is educated on the latest treatments autism has to offer. In dusting off their biochemistry book in going back to the beginning of medicine in understanding how the cells work. In finding a doctor whose focus is more on what the body says to do, and less on what traditional texbook or HMO protocol dictates doing. This doctor goes where the path leads whether it makes sense according to typical manifestations or not. This doctor listens, treats, and as we've experienced this month --- helps to heal.

And is healing.

Brandon has been seizure-free since April 5th.

Something all the traditional medical professionals in the world-class medical center thirty minutes from my house has failed to do for my son's nineteen year career with autism.  For his decade-long struggle with seizure cycles.  For this latest three year relentlessly devastating seizure cycle.

Even with all the drugs Pharma can push.

There's your swan song, Mr. Pediatrician.

Brandon deserves to sing it, not you.

That doctor earned it, not you nor any of the myriad of neurologists or specialists we've seen in that medical center for years upon years.

As Randy on American Idol would say, "Yo Dawg, this doctor -- this doctor IS IN IT TO WIN IT for us!"

That's what this month should look like.

That's where the HOPEISM of this month should come from.

From real doctors practicing real medicine for real healing.

Yet sadly, as long as I have to drive sixteen hours away for the rare doctor who understands autism, we haven't accomplished a thing for autism awareness, let alone autism action.

As long as the underground autism treatment network is stronger than the traditional medical one - where parents desperately e-mail each other asking where they got this, how do you treat that, what state must I travel to now to get help for my child -- we haven't accomplished a thing.

Twice now this month I have had to go back to our traditional doctors. The Neurologist to check the settings on Brandon's VNS, and the Pediatrician for a physical to get paperwork signed. I briefly shared about our seizure-free streak with each of them and what I felt was contributing to it. The treatment of underlying chronic conditions, and natural supplements other than Pharma's seizure-drugs. They both looked at me with less than enthusiastic expressions. Oh, they were happy for me, but there was no A'HA intrigue in where they ask questions so they can possibly apply that information to other such patients. There was no invitation to share our success with others in a "Grand Rounds" type educational setting. Most dishearteningly, I could see no "blue light" going off in their head in that maybe they needed to look at autism a bit different. Look at lab tests a bit differently.  From each of them there was only, "Do you need refills on anything?"  For me there was only the horrifying thought as I drove home, "Did my son even need that Neurosurgery, that VNS implanted in his body?"

The answer is no.  Not if I had found this doctor, before that surgery.
That was the moment I realized just how little the medical establishment understands about autism.

That was the moment I realized just how miserably we are failing at this month of autism unawareness and inaction.

Epically.

Miserably.

As this month comes to a close, and that "Pediatrics" chapter comes to a close, Brandon sang his own Swan Song. For the first time in the eighteen years of that Pediatrician trying to stick the ear thing in his ears to check them, he didn't kick, punch, scratch, scream, or require three of us to hold his arms and head still.  He didn't render the Pediatrician infertile for life.  No, because of the help and healing of a real doctor we've only seen for barely two months now, Brandon sat there and let a stunned Pediatrician check his ears.

While I sang mine in declining for the last time, his recommended vaccinations.

And I hope... 

Oh how I hope with the Hopeism of all Hopeism - that come May 1st, we can finally begin the work of educating those who need it most -- each and every doctor -- in each and every medical center, about the real treatment of the myriad of disorders and dysfunctions called autism.

So that next April --- can be every parents autism swan song.

Autism & Deadliest Catch...

 

 I love the show Deadliest Catch on Discovery Channel.

I grew up spending summers on Long Beach Island and one of my favorite places was the docks where the fishing boats came in.  It was so fascinating watching them unload their catch.  I guess that's why I love that show so much, it reminds me of that time and one of my Uncles in particular.  Oh how he loves the sea.  He would fit perfectly on any of those boats featured in the show.  (Language and all....)

I think another reason I'm drawn to that show so much is because of how it reminds me of my own "Life with Autism."  Full of suspense and drama.  Twists and turns.  Ups and downs.  It's really kind of a heartbreaking show to watch.  The danger is relentless.  The work is hard.  The hours are long.  At times there are more sorrows  than joys.  There are more failures than successes.  You sit there not breathing at times wondering what hazard will befall the crew next - much like I've found myself doing time after time when Brandon has that "look" or that "sound" that indicates a seizure is coming.  Like the waves that hammer the crew on deck, you know it's coming, you just don't know when.  So you must remain in a constant state of readiness.  Holding your breath.

There is no relaxation on their boat.

There is little relaxation in life with autism.

I love the voice of the narrator on that show.  He talks about their occupation that is anything but calm, with a calm steadiness that the icy waters of the Bering sea do not hardly know.  I'm drawn to his comforting voice because it's the total opposite of my chaotic life with autism.  I wish I could master the art of living each day in the calmness with which that narrator speaks.  But no, my daily narration is more like the sea -- always churning. 

I like to think I see a bit of myself in the crew of those boats.  Men who love the sea and who can't be anchored inside or at a desk.  They are rough, tough, yet possess a sincerity and transparency about them.  What you see is what you get.  There is no fake.  There are no pretenses.  They aren't afraid of hard work and it shows.  They are weathered and worn.  They work in the most perilous icy waters the Bering Sea has to offer doing the most dangerous job in the world.  And it shows.  They know honesty and the value of hard work.

And the Bering Sea, Autism, - is hard work.


If you've ever lived through a yeast die-off in your child, you know just how perilous those icy waters can be.  If you are a warrior mom of a child with autism, you too are doing the most dangerous job in the world.  I love how the narrator described it once, he said in his calm steady voice, "They do the most deadly occupation in the most breathtaking place on earth."

Indeed that describes Life with Autism.  Autism is deadly.  Death by drowning when they wander off.  Death from not understanding danger.  Death from seizures.  My son has stopped breathing long enough to need CPR once.  And long enough to need oxygen twice.  Each fall from a seizure could be the last...

Each voyage beyond the safety of Dutch Harbor, could be their last.

Much like the life of a greenhorn on the boat, life with autism is very unforgiving.  There is no grace period for new Moms. No mercy is shown even to veteran Moms.  There is no training period, there are no manuals.  It is merely sink or swim.  It is do until you get it done or die trying.  There is no lunch break when you're hungry or quitting time when you're tired.  There are no promises, apologies, or excuses.  Like those fishermen you work hard for up to a week at a time non-stop.  You work and you work and then you work some more in setting those pots in hopes that when you swing the boat back around to haul them up, they're full.

But often, they're not.

The life of those fishermen is one where they have learned how to rise above disappointment and to keep working at it for the love of doing it more than the reward of what you get from doing it.  That's a hard skill to master in this current world of instant gratification.

And like being a fisherman on Deadliest Catch, so very many aspects of it have been the most breathtaking moments of my life.

When you pull up that string of pots that for hours and hours before have come up empty, and as it's coming up out of the water you stare at it with such anticipation, such hope that this time, maybe this time, there will be Opie's or Blue's --- just a few.  Just enough to give you the breath of fresh Hopeism you need to rejuvenate your bone-tired body ---  the reassurance that you are on the right track, that you're where you need to be.  Once again you find yourself holding your breath as the pot comes up and you see crabs.  You can breathe.  You can whoop and holler.  Then if you're really luck, once the pot is all the way out of the water, you see that it's full of crabs.  Keeper crabs.   Eyes that have seen too much the darkness of disappointment dance in the light of a new skill mastered.  A new understanding revealed.  A new level of healing achieved. 

That is the breathtaking moment those fishermen live for.

That is the breathtaking moment I live for.

Those moments are there for the taking for those brave enough to hope for them. 

Believe in them.

I think I love that show and the real-life fishermen who do that work because they symbolize what hard work is.  On those boats, in life with autism, there is no participation reward.  There is no prize for simply being on that crew and showing up.  Sometimes, there's not even a paycheck at the end of the day.   No, sometimes the only reward they get, we get, is that we survived all the sea threw at us.   We dodged its bullets and we beat its death.  It's knowing that their best days, our best days, are worse than most typical people's bad days.  There is pride in that.  Bragging rights in that...

I type that and have to smile and shake my head in wonder why they do it.  How we do.  Yet they do.  We do.  I do.  Each year that Jennifer Crawford and I put on our Autism Conference and Resource Fair; by the time the last person left at the end of the day we would look at each other and swear that would be the last one.   Yet much like those fishermen, as each new season beckoned, we found ourselves drawn to the dock ready to fish.  Ready to face those perilous seas of planning again.  Ready to face whatever fate would befall us -- success or failure.

I think that's what keeps me coming back to the Hopeism of autism as well.

Just how rewarding its successes can be.

Like the ebb and flow of the tide, I know that autism will bring me both good and bad.  Successes and failures.  Triumphs and tragedies.  It will test me like no other test before, and if I can daily survive that test I will be among a brotherhood of a very select few who will have my back for life. Who understand this kind of life. 

Those are the only certain things in this sea of uncertainty that is autism. 

A few weeks ago a new season of Deadliest Catch began.  The narrator's voice captions the picture in saying, "As dawn breaks over Dutch Harbor the boats steam forward to an uncertain fate into the unknown of the Bering Sea.  The 2012 season is now underway...."

A few weeks ago a new season in our "Life with Autism" began as well.  I can hear the narrator's voice in my mind as I rejoice each morning with, "As dawn breaks over life with autism we are steaming forward to another seizure-free day.  Our 2013 seizure-free season is now underway...."

As I write the manuscript for this new season, I don't know how long it will last or how successful it will be.  All I know is that each day as dawn breaks we will do as the picture portrays.  We will steam forward into the unknown of autism's uncertain future, into its often icy, perilous waters where there will only be one thought I know to be true:  

HOPEISM begins again.

Where I will cling to the One who is even more powerful than the Bering Sea, and who can calm it with but a whisper of His voice.

~ ~ ~

I love that show so much because it's "Life with Autism" -- one of the most extraordinary, empowering, life changing journeys of all.

Thanking God for His Grace: Amazing Grace

Once again my version of TGIF - where I reflect on the week and simply thank God for His Grace.  His simple grace at times, his quiet grace, and times like lately, his amazing, amazing, amazing Grace that roars louder than a lion.

This Friday marks two weeks seizure-free.  Having faith that something like this can happen is one thing.  Experiencing that it is happening, totally another thing.

Another amazing thing.

The Lord has promised good to me
His word my hope secures
He will my shield and portion be
As long as life endures

Truly, the Amazing Grace of HOPEISM is what stands out this week.  In that when you search and search for the right person who will help you, but can't seem to find that person, that God calls someone else to make that connection to the person they know who can help you.

In the car on the way to school this morning, I had a talk with Brandon.  I asked him if he realized he has been seizure-free for two weeks.  If he felt as good as I feel for him!  Of course he didn't answer.  He is non-verbal.  But I talk to him like that anyway.  Oh how I would love to know if he feels the difference.  If he knows...

And then the song Amazing Grace played on the radio and we had us a bona-fide worship moment...

How precious did that grace appear
The hour I first believed
My chains are gone
I've been set free
My God, my Savior has ransomed me
And like a flood
His mercy rains
Unending love
Amazing Grace

Click here for the song Amazing Grace

And as if that weren't enough, when I went to pick him up from school, as he was coming out the door with his therapist beside him, I suddenly saw a shocked look on her face.  She stopped and looked at Brandon and her eyes got so big.  My first reaction was to think she heard that all too familiar choking sound that signals a seizure.

When she got to the car and opened the door, she looked at me with the beginning of tears in her eyes and said that on the porch when he looked my way, he said "Mom" as in putting together for the first time that I was indeed, his "Mom."

Amazing Grace
How sweet the sound...

Thank you Lord, for your Amazing Grace this week.

The Door of HOPEISM

I've been thinking about this picture a lot this week. 

When my "other" son went to Navy Boot Camp right out of High School - I'd hardly felt that I even had a chance to be with him during his school years.  It was hard.  "Life with Autism" had necessitated he grow up faster, and more independently than most.

Where most parents had the gradual separation of college, where they could visit, text, talk -- when my son got on that bus that took him to Boot Camp, I had the 'cold turkey' separation.  A day later only a three-second phone call where he read from a script just so we knew he got there.  Weeks later a letter. 

We longed for the PIR date where we could travel to Great Lakes to see our son. 

PIR... Boot Camp Graduation.  After 8 weeks of separation, parents sit on hard bleachers and check their camera's over and over to make sure they can capture the moment they see their sailor.

Waiting, waiting, waiting.

Then stillness, quiet, and you know it's time.  "The door" slowly begins to open and you see the glow of  light coming in from under the door.

Oh, that light.

Eight weeks of darkness - no communication, then little communication. 

Worrying.  Wondering.  Waiting.

Then the door opens more and you see that light stream in.

You see feet.

Then legs.

Then bodies.

As they come marching in. 

As men.

Forever changed from the boys who walked off  the bus.

It's hard to paint the image that is in a mother's heart.

The relief, pride, joy, love.

The HOPEISM revealed in when that door opens and you realize that your prayers were answered, your faith that he would make it came to fruition.

I don't know that I breathed while that door was opening.  You're too busy savoring the moment of anticipation to think of anything else.  You relive those long weeks while that door is slowly opening.  The hard times of separation, the tense times of worrying, the happy times of getting a letter, and the tearful times of a mamma reading those sleep-deprived letters from her sick, hungry baby!  You remember thinking this day would never come!

Yet that day does come.

No matter what you must go through, or how long you must go through it, that day when the waiting is over - does come.


I think more than anything else about my son's Boot Camp, I'll remember those doors and how they symbolized a light in our eight weeks of relative darkness.

I guess why I've been thinking so much about those doors at PIR Graduation so much lately, is because we've been going through a sort of Boot Camp in Brandon's seizures.  Some really tough darkness.  Some really tough waiting.

Then finally after such darkness, the door started opening for Brandon.

Light we hadn't seen much of in terms of seizure-relief for nearly three years, started creeping in under the door.

And as we had more and more seizure-free days, we could start to see parts of our son again as the door crept higher and higher and the light shone brighter and brighter.

8 seizure-free days - a record.
9 seizure-free days.
10.
11.
12.

13 seizure-free days.

I find myself in familiar territory -- not breathing as finally a door for Brandon is opening.

Too busy savoring the moments. 

For however long they last.

Too busy soaking in the light of HOPEISM where prayers are being answered and faith is coming to fruition.

Slowly.

Surely.

Too busy dreaming and daring to anticipate the day the door is wide open and my seizure-free-for-the-rest-of-his-life son comes dancing through it.

~ ~ ~


Ahhhh, that door of HOPEISM.

For one son, it changed him forever.

For the other son, it changed me forever.

Thanking God for His Grace: Faithfulness

This is my version of "TGIF" -- where I simply end the week by Thanking God for His Grace.

TGFG

I'll try and share a picture where possible.

This is the one I chose for this week... 

It shows God's faithfulness in keeping Brandon seizure-free this week.  No, not totally well as you can see, but hanging in there.  Able to jump-himself-worn-out on the trampoline!  Laying down to rest before getting up and going on again.

Such a warrior spirit my sweet son has.  It is incomprehensible all the dysfunctions that must be going on in his body - yet he lets nothing stop him from doing what he loves to do.  Not more than a few restful moments at least...

Today actually marks two full weeks he has been in school every day, all day.  We haven't had that in months upon months.

Today marks 7 days seizure-free.  We haven't done that in months upon months. 

So on this Thanking God for His Grace Friday, I'll consider being worn out from being able to jump on a trampoline a check-mark in the win column.  A column I hope finally catches up to those in the 'other' column.

A few have asked what I attribute his seizure-free stretch to, and I must first answer simply, God.  So many times it seems that autism is my idol.  That everything revolves around that.  But it doesn't.  All that is within me revolves around God.  Autism just happens to be the solar eclipse in that at times. 

Other things are finally finding a doctor, albeit in Florida, who is able and willing to help me with some underlying issues I've felt have been triggers for quite some time, but that no one in the traditional medical community would help me treat. 

Viral issues.  Yeast issues.

I have been vigorously treating those thanks to this new partnership in Brandon's care.  Essential Oils flowing in his room all night thanks to another partner in his care.  Servings of medium chain fatty acids with all meals.

All of those things I believe are making a difference. 

Brandon is still tired, but I think it's from finally being strong enough to fight off those things without resorting to seizures.

This morning, Friday, it seemed iffy if he would get to go to school.  He slept until nearly 11am and then once up and in the bathtub, he fell back asleep.  Typically that would mean a seizure was coming.  But it didn't.  He made it to school by noon.

Check mark.

Whatever it is that's keeping him seizure-free, - I'll take it.  I'll keep pressing hard in making more and more of those check marks in that win column, and I'll continue thanking God for His Grace & Faithfulness.

Other reflections of this week center around my warrior friends in this month of autism awareness.  On this Friday I continue to be amazed at God's Faithfulness for them.  Autism is it's own world of complexities and complications.  And so many of my warrior mom's of autism must juggle the flaming swords of other worlds of other complexities and complications.  One of them doing something I can smugly sit here and say that I would never do.  Ever.Ever.Ever.   But I can't really say that.  I simply don't know what the future will bring for us.  For my son.  I am quite sure she sat smugly at one time and thought that too.  But her "never" came.  I hate how autism makes us make choices no mother should ever.ever.ever have to make.  I hate that with all my being.  But God is Faithful.  He provides and he protects.  And I pray that he provides for her the comfort she needs and protects her sweet son who needs so much more than all the love she has for him. 

Another friend struggling with the sheer emotions of it all and wondering if that's normal. 

Another friend caring for someone who is at the end of their journey as she's knee deep in her own journey.  

In each of them I see God's faithfulness.  God's grace.  As they never quit.

Check marks.


And my sweet husband.  If there was ever a symbol of that faithfulness it would be him.  He works so very hard all week to provide for us.  Once home must work even harder in the partnership of caring for our son.  Slowly and surely we are figuring out how to carve time for us, together and individually.  To challenge ourselves in being healthier to survive the marathon we must run.  He was recently certified as an Open Water Diver.  I recently conquered a fear and learned how to swim.

More check marks.

Yes, this week had its challenges.  The main one being enduring a month that is to be more action than awareness, yet isn't.

More green than blue, yet isn't.

In seeing how much farther my son has to go and how in the world I will get there.

And how it won't be by celebrating what this month represents or plastering on Facebook glamorized portrayals of who it even represents.

But by celebrating the check marks...

Working hard for them.

And creating more and more opportunities for more and more of them.


Until next Friday  ---

HOOYAH!

Thanking God for His Grace,


Camo Mom TX

The Beginning of their Forever...

I can't believe that as I type this my son and new daughter will soon be celebrating their One Year Wedding Anniversary.

I still smile and shake my head at the whirlwind events of this time last year.  I wonder if Tiffany's mom has even recovered yet.

Matthew and Tiffany met through swim team when they were like 14 years old.  I think that each of them in their own way knew that it would be a forever kind of thing - even though there were some rough spots they would have to go through.  At least it sure seemed like they were headed to forever from the love notes I found in Matt's jeans pocket!  (smile)

They were truly "Beauty & the Beast" in the water.  Tiff's long graceful moves that distracted you from how fast she was swimming.  Matt simply a powerful, technical beast.  A very fast one at that.

I loved watching them swim each summer and through High School.  Even today when I go to summer league swim meets to watch my little niece and nephews, I see their names at the top of most events in many age categories as the reigning record-holders.

I may not have loved the transition of him wanting to be with someone other than his mommy, but it was a stepping stone in his life that could not be avoided.  And in keeping with my stubborn-self, I didn't go out without a fight.  Kicking and screaming more like!  Yes, like many mom's I'm sure (I hope I'm not the only one who felt that way) I was a bit jealous of the person who dared take my son from me.  But eventually I learned that it wasn't me losing him, it was us gaining her.

And what a wonderful "her" we have gained.

What a wonderful new family we have gained!

I haven't always been the most diligent in praying for a godly woman for my son, autism had a way of hogging all my prayers all those years.  But God had my back.  He put a godly woman in his path who would be able to complete him.  Support him in the endeavor of his lifetime, even though she may not have totally understood what a hardship it would be.  And even now that she more fully understands all that hardship will entail -- to still support him.  NMW.  

(No Matter What)

That's love.

And even before Edward said it to Bella -- I remember asking Matt long ago if he was in love with Tiff.  He thought for a minute and then said, "I'm not sure, but I know I have this intense desire to protect her."

Yeah.  You're in love boy...

So I guess it was no surprise when he shared with us that he was going to come home on leave from the Navy to visit us --- and ask her to marry him.  And get married if she said yes. 

All in one weekend.

Go big or go home!

I'm still stunned at how Tiffany's parents pulled that off.  We had literally one week to plan a stand-by wedding.  Of course Tiffany would say yes, but if she wanted to get married that weekend, to have a wedding ready, "on stand-by" - was a feat of ginormous proportions!

A Pastor, a cake, guests, food, decorations, a MARRIAGE LICENSE ---- all of it ready and on stand-by for a weekend visit Tiff had no clue about.  Where on that Friday night he would ask her to marry him, and once that sunk in he would ask if she wanted to get married that next day - on Saturday.  Leaving Saturday morning for her to go shopping with her sister to find a wedding dress.  For her wedding on Saturday afternoon.  And her honeymoon on Saturday night.

I still have to shake my head laughing at the lunacy of it all!

He did surprise her in the movie theater where they had their first date, got down on one knee and asked her to marry him.  She did say yes as both sets of parents looked on teary-eyed.  She did want to get married that weekend.  And it was the most beautiful backyard wedding.  What there wasn't time for in sending out invitations for extended family & friends to attend or registrations for wedding gifts, --- was made up for in the love and support of family and the sheer presence of God during that ceremony.

Complete with a rainbow at the end.

After a family fajita backyard dinner, they were off to their brief Honeymoon Saturday night.  Only to be back Sunday afternoon for family dinner and the flight back to the Navy base for Matt.

Oh my goodness the lies that had to be told!  Matt wanted everything ready should she say yes and should she want to get married right then.  Imagine how creative one must be to get your girlfriend to get a marriage license without knowing she's about to get married!  She didn't know that we knew and we tried to keep her from knowing that we knew - all while getting her the paperwork she needed in order to get what she had to get without anyone knowing!

Ha ha ha!

Oh what tangled webs we all weaved in each other trying to deceive!

Crazy.Mad.Wonderful.  

No other words.

Except for beautiful and full of family and love  -- more than things or expenses.

That is what their wedding was.

And it still blows my mind.

They truly lived out the cliche of "All you need is love," -- because that's pretty much all they started their marriage with!

Nothing about their first year of marriage has been conventional.  Heck, she didn't even get to live with her husband for a number of months after their marriage!

So I guess it's fitting that on their 1st Wedding Anniversary they went to Disneyland.  Roller coasters, Wild Rides, Thrills, Chills, Loving, and Laughter certainly sum up their first year!  I think if they can remember the overwhelming fun and laughter of Disneyland among the sheer terror of some roller coasters they'll be on during the course of their marriage - they will do well.

If they can each put God first as the constant figure who will never be deployed, they will have the security they need to handle any separations from each other their Navy journey will entail.

If they can realize that there will be times they will be apart, it will give them more patience in the little irritations of each other when they are together.

If they remember that it's not the things they amass nor the size of the house they can fill with those things - but their love that endures, the experiences they share, and the memories they make - then they will know what true happiness and fulfillment is.

If they remember to always be anchored in their faith and not by fear, then the challenges and obstacles that break other marriages will never break theirs.

If they continue to Dream! Dare! and Do! together in the NDCQ motto that is the essence of marriage, then indeed the two will be much better than one ---

And accomplish so much more!

If they remember those wedding vows and the NMW of them - like the t-shirts they wore at Disney - in her always being his Minnie if he will always be her Mickey - then like Edward and Bella they will always have their forever.

~ ~ ~

Do I wish I could turn back the clock to where my son still lived at home and I was still the 'only girl' in his life?

In a heartbeat.

(smile)

I'm not the kind of parent who can't wait for empty nest so I can have my own life back.  My children are my life and I wouldn't have it any other way.  But if I can't have that, I couldn't have asked for anything better for him than Tiffany.

His Bella...

Who is unconditionally and irrevocably in love with him.

Bravo Zulu, Matt & Tiff on your first year of marriage -- and Fair Winds & Following Seas for the next year.  And the next.  And the next......

No matter where your Navy journey takes you -- may you always remain Anchored in Faith.

~ ~ ~

May 19, 2007 may have been the beginning of their together; but April 14, 2012 was the beginning of their forever.

"Forever and forever and forever," he murmured.

"That sounds exactly right to me."

And then we continued blissfully into this small but perfect piece of our forever.

~ ~ ~

Of comfort zones, common ground, and conquering fears.

I learned something about my son this month.  Just how much joy and happiness jumping on the trampoline brings him.  I could always see it in his face, the joy, the happiness --- in how his whole body comes alive.  I could see when he jumps, that there's no autism.  No seizures.  No GI Disease.  No mitochondrial dysfunction draining his energy.

I could always see that - but I could never feel the freedom he was feeling.

Until lately.

I should first further my transparency in sharing that I have a few sensory issues.  Fear issues.  I mean, when it comes to anything autism-related -- I'm a fearless autism warrior mom.  I've been to Washington, D.C.   I've been labeled a "riot risk" - I guess was the term the Capitol police really meant to say - when they wouldn't let me in the Rayburn Building while wearing my "My Kid Got Autism From a Vaccine" t-shirt.  I've testified in Austin in front of Legislators.  I've taken on a school district (and won) and I've at times been the last appeal letter standing in simply wearing out insurance claims managers until they just pay the thing so I quit appealing.  I have taken on doctors, I've been on T.V., and I've been in the newspapers. 

I've lived a fearless autism advocacy life.

But personally?  Not really so much.

Until recently.

My own eyes were opened from a situation where people refused to step outside their comfort zones.  I realized I didn't want to be like that.  That even though there are very severe limits to what my husband and I can do -- we should still always attempt to do.  And not make excuses.

So I decided that if we ever get a chance to go on a vacation in the future, it would be nice to have a Dive Certification.  Our son Matthew does, so I figured that would be something we could all do together.  If not the opportunity for me to join them, then at least it would be something neat that father/son can do.  We've had so few of those opportunities in our life.

Talk about wayyy out of your comfort zone -- Todd took the class first.  It would seem that as "Guppy's" swimming would come second nature.  But for Todd Guppy -- not so much.  He was a Football player in High School and College.  Big, muscular-built football players typically don't swim.  They sink.  So much so that if sinking to the bottom of the pool were an Olympic event, he would be your Michael Phelps.  Oh, he can swim -- when jumping off a cliff into the water below, he can swim to get to where he needs to get back out to climb back up the cliff to jump off and defy death again.  But recreational swimming or competitive swimming like our son Matthew did, -- not so much his forte.

While he was taking the classes, I could tell, and he could tell, - that this was way out of his comfort zone.  But I was so proud of him for doing it.  And he was so proud that he did.  Like me, he didn't want to be like those who refuse to do something out of their comfort zone.  He didn't want to grow old and complacent. 

You stay young by constantly stepping out of your comfort zone.  And for autism parents like us, we must do all we can in finding that fountain of youth to live forever!

You can't grow as a person when confined in a comfort zone.

I wish doctors of today understood that.  The future of our children with autism depends on them being brave like my husband was in stepping way of their comfort zone.  Learning new things in this new biological disorder called autism.

I knew the challenges Todd had to overcome in doing that class - and when it was all said and done and he had his Open Water Diver Certification -- I asked him if he was glad he did it.  He was.  He actually wants to go do that for fun now.

Which brings me to my turn......  My fears...........   I am a true "Guppy" in that I love the water.  I love being in it and I love swimming in it.  I love the thought of being underwater and seeing a whole new world.

But I have sensory issues with things touching my head -- goggles, mask, etc.  With my face being in the water.

And I have never swam a true swim-stroke in my life. 

I know how to swim.  Well, let's just say that I know how to get from point A to point B in the water.  But like Todd, I have never taken any proper swim lessons to learn how to swim each stroke.  Which is probably why I was so insistent on Matthew taking lessons and being on swim team. 

I would go to the pool and do laps, but it was always using a kickboard.  Alternating swimming with my arms or my legs.  Rarely both at the same time. And never with my head in the water.  But knowing that with this Dive class I vowed to take, my bluff was close to being called.  I would have to swim a certain distance, without my beloved kick-board as my crutch.

And I would have to put my face in the water!

Under water.

With a mask on.

I gotta say, I understand now why doctors don't get out of their comfort zone when it comes to autism and realizing that indeed, gut issues could be related to brain issues.  That biological disorders could cause behavioral manifestations.   It's scary to get on those starting blocks and stare down at that water and have to jump in head first!

But we must if we are to grow.  Overcome.

And so I did.

I left my fear, and my kickboard, behind.

I swam one lap freestyle.  One lap breaststroke.  One lap butterfly.  One lap backstroke.   Albeit with my head out of the water, but I did it.  No kickboard.

It felt wonderful.

It was hard.  I was sore.  But I did it.

I remembered watching Matthew swim all those strokes at all those swim meets all those years, and I just pictured how Matt swam each stroke as I was swimming.  I've watched so many swim meets of his, that the form, the style, the technique is ingrained in my brain.  No matter how ugly I'm doing the stroke, I at least know how to do it.  Whether my arms and legs follow suit or not.  Perhaps one day what I do will somewhat match how he did it!

I realized so much about myself through this process - but even more, I realized so much more about my son Brandon and how he must systematically do things.  How many individual things he must overcome to be able to do the slightest thing.  Learn the slightest skill.

I am sure that his "want" to do something is as great as my fear was in doing something.  And that breaks my heart for his autism all over again.  How many things could there be that he wants to do but can't because of very real medical dysfunctions holding him back.

And here I was perfectly capable to do something all these years, but never did for fear of fear.

Shame on me.

Never again.

Autism Awareness month totally blows for the person with autism -- but this April, this Autism Awareness month -- it has taught me so much about my son that I hadn't realized before.  It has reignited a desire in me to push harder in helping to heal him so that he can do more! And for that I'm thankful.

For me personally, this month has taught me to live as fearlessly as he does. 

So fearlessly, that I bought a pair of goggles and a swim cap.  I figured if I was going to do this, I best do it all the way.

So I put the goggles on, the cap on, and I put my face in the water.  I swam all the strokes with my goggles on, eyes open, and head under water.

And it was the most marvelous feeling in the world.  Amazing.  Wonderful. 

So very often happiness has been a choice.  A fierce determination in defiance of the unhappiness autism sometimes is.

But until that day when I overcame a fear and swam like you are supposed to, I don't think I've truly felt that happiness.

I don't think my smile has gone away yet.

It was a whole other world totally under the water, seeing the black line at the bottom of the pool I was perfectly positioned atop.  Seeing the wall I was about to come to in completion of yet another lap swimming real swim strokes.

All those years of fearing the magnificence of what I'd just experienced!

All those years of watching Matthew swim - then finally doing it myself.

I wonder if that is what learning a new skill is like for Brandon.  All those days, weeks, and months of repetitive learning -- then finally the mastery of it.

In my self-taught swim class I do as often as Brandon's seizures allow me to be at the pool -- I'll probably never learn to do the strokes quite right, quite like I picture myself doing what I remember Matt doing -- but I can still consider myself a success in trying.

You can only be a failure if you never try.

I think that's why so many alternative doctors are seen as heroes to us.  They may not cure our kids, but at least they're trying.

The only failures out there are those who never try, who never step outside the box of what they were taught.

I feel amazing. 

There were so many fears I had to conquer, not to mention the fear of humiliation of the lifeguards watching me flop around like a two left-finned fish.   There were laps where I literally choked my way through them in trying to figure out how to come up to breathe, while swimming, without breaking stroke.   Oh my goodness how much more respect I have for my son's swimming accomplishments!

I feel like I found common ground with Brandon.  Like I shared earlier, I could see how free he felt when jumping on the trampoline.  But until I experienced my underwater-eyes-open swimming miracle, I never felt what he must be feeling as he jumped.

That freedom.

But now I know.

Being underwater there was no "Life with Autism."  There was no back pain, no discrimination, no judgements of if I'm too radical, not proper.  There were no advocacy fights to fight.  There was no fear of the future. 

There was nothing but joy and happiness and amazement of accomplishment.

There was no "I can't."

In the "Dream! Dare! Do!  NDCQ!" motto that I so love -- there was only "I did!"

I did something I thought I would never do.  Could never do.  And I'm still buzzing from that. 

It's giving me HOPEISM to keep dreaming, daring, and doing for my son so that perhaps one day after watching everyone else do things he can't do -- that perhaps one day I can get him well enough to be able to do them.  Clear that fog in his brain so he can.  Take the shackles off his feet so he can dance.

So yes, you must endure this picture of me in my Camo-swim cap and goggles --- it's my symbol of a long overdue hard earned victory.

A victory that perhaps only my Brandon as he's jumping on the trampoline, could ever understand.

To the HOPEISM that one day soon Brandon, you too will have your own "victory-buzz" in being able to do something you have wanted to do for so very long, but couldn't ----

HOOYAH!



(And yes Matt, I do know that the hair goes under the cap -- but that's just not as cute as this way is...)