The "Dang-it" of Disappointment.

I'm doing "The Bible in 90 Days" -- it actually started as my Lent season undertaking that obviously is taking a bit longer than 90 days.  I share a brief blog post about each day's reading on my blog, God's Word Day by Day. When it's all said and done, I'll have "90 Days" of reflection about that journey.  Albeit 90 non-consecutive days....

Anyway, in that journey, I've just finished the book of Job.  Seems lately I haven't just read about his trials, I've lived them.  "Team Guppy" as I call our family -- has lived them.  If you read this blog's posts - you know that over the last 18-20 months we have not only lived with autism, but horrendously uncontrolled seizures in our son who has autism.  There should be a limit on the amount of trials a person must go through, but as we see through Job's life, that isn't always the case. 

For us it certainly hasn't been.

Dang it!

Which brings me to these musings about disappointment.  More specifically, how the heck you handle them.  I'd like to sit here and think that with all my experience in having faced so many of them, I would have a 30-minute power-point all ready to insert here for you to watch and be duly enlightened and amazed by.  But I don't. And I don't want anyone to think for a split-second that I have the arrogance of thinking my disappointments are the worse ever. They aren't.  I guess I could have one slide in that power-point presentation after all.... I do know this about disappointments:  There are others whose disappointments are greater than yours.  And that's something that always balances the scale for me.  It doesn't take away the pain of my disappointments, but it certainly helps to keep them in perspective.

While I can't answer why disappointments happen or how to best handle them, I can share what I've learned about them.  Mainly, that it seems like people today have the attitude that they don't deserve disappointments.  That they somehow take for granted having so many blessings, that how dare the universe send the plaque of a disappointment or bad-day upon them.  The slightest hiccup in a day ruins the entire day for them.  I guess that comes from raising kids by giving them a reward for every good thing they do.  No, not every good thing you do earns a reward, but you do good anyway.  When we grow up expecting good for doing good -- we can't handle bad when it blind-sides us. I credit my childhood for preparing me for my "Life with Autism."  It wasn't perfect.  We didn't win the lottery and have a life of ease because we were good.  Bad things happened despite us being good.  And I was made stronger for it.  When a bad thing happened, it didn't mean we were exempt from more bad things happening.  

Others think that if you just ignore disappointments they'll go away.  They won't.  Pretending satan isn't lurking doesn't mean he isn't.  Pretending you weren't just sucker-punched and had your breath taken away by a disappointment isn't going to take that pain away or make the next breath any easier.  I prefer to see my enemy face-to-face. I prefer to go ahead and face my disappointments, not duck from them. Actually, I'd prefer to blow them up with a canon, but since there isn't a concealed hand-gun license for that -- I have no other choice.

I guess my saving grace in disappointments is humor, albeit sarcastic at times.  Not by choice, but by necessity.  I've heard many times by many people when going through a disappointment:  "When life gives you lemons, make lemonade."  While I know they have the best intentions with that statement,  I wonder if they would have wanted someone to say to them if their spouse/relative/best friend died prematurely, "Well, they dropped dead suddenly, but you know, you just have to be thankful and make lemonade!"  That topped only by, "Here, would you like some ice cubes to go in that glass of lemonade you're presently choking on?"

It is true that after life throws you lemons you have lemonade.  I could use a wine cellar in my house to store the barrels of lemonade I have!  But not because I purposefully made it.  It's merely what has oozed out of the lemons that have been pulverized as life threw them at me and they were somehow caught between my head and the wall I was banging against in hurt, confusion, disbelief, or anger.  Sometimes the lemons were thrown so hard at me they were instantly liquefied into lemonade.

Lame cliches' no matter how well-meaning, have no place in helping someone through disappointments.  That's why I love our dearest long-time friends.  The husband is the most laid back person I know, and upon sharing our most recent disappointment with them, his wife texted me his reply of  simply "Dang-it".  I can't tell you how hard I laughed at that.  I could picture his calm self sitting on the couch and upon hearing our news, say simply, "Dang-it!"  And I know that when I get a moment to share with my BFF, she'll have an equally humorous to me "buck-up buttercup" response.  Or she'll come over with a bat and burlap bag and ask me for the address of the person who dared cause our disappointment.

You can't avoid or change disappointments, and there are many times you can't even make the best of them.

Sometimes disappointments are just that --- a "Dang-it!" bleep in an otherwise blessed life.

They are as unfair as life itself.  But I suppose the most merciful thing I have learned about them is that God is still God even though he allows them.

That was the hardest thing to learn about disappointments as a Christian.

Twice in my life I have prayed with everything in me, for something to not happen.  I mean deep-down-to-my-soul praying.  Laying-on-the-floor-with-arms-and-legs-outstretched-crying praying.  All-night-and-all-day praying.  God-will-answer-my-prayer-miracle-believing praying.

And twice those things happened anyway.

Like I said, I have no advice on how to handle that depth of disappointment.  My first reaction was, "Really, God?"   From there my whining only got more pathetic.  Then I got angry.  Then hurt.  I'm still a bit bewildered and in shock.

But even in all that -- I do know that no matter how deep the depth of your disappointment, God is deeper.  Though God may allow disappointments to happen, God is not disappointment. They don't happen because you are bad.  You're not exempt from them because you're good. They just happen.  God is still God.  Life is still good.  I think to further illustrate that to my fractured-faith on that particular day -- at the very moment that second thing in my life I prayed for the most to not happen,  happened - God sent in the middle of a perfectly hot, humid, Houston day -- a hail storm.  Those who know me, know that my most perfect of days, is a dark, stormy, thunderous day.  Hail would just be icing on that type of day for me. And it hailed on top of that dark, stormy, thunderous, 104 degree moment that day.  Big chunks of icy hail in the middle of a hot, humid, Houston day.  It was God reassuring me that he was still God, and that if he could send quarter-sized chunks of hail in a 104 degree day, then he could surely be in control of what we were going through.

God is there in our disappointments whether he shows himself or not. Just because the thing we prayed for most to not happen, happened, doesn't mean prayer doesn't work.  Although admittedly I asked our friends to pray for my husband through a difficult time at work because I was afraid that if I prayed for him I would jinx him!  I didn't want to go three-for-three just quite yet!

(smile)

Like I said, I should be a pro at handling disappointment.  But I'm not.  I sometimes kick, scream, cry, and curse.  I get angry, I get sad.  At times I even laugh.  What I don't do, is run from disappointment. I stand firm and embrace it in all its suckiness.  I don't not dream because of a dream that was shattered.  I don't not pray because a prayer wasn't answered how I wanted.

I've dreamed many wildest dreams for both of my boys, and especially as they pertain to Brandon's healing those dreams have been disappointingly crushed more often than not.  For Matt, disappointingly delayed.   But I still dream them. And I still believe in prayer and in the miracle that dreams can and do come true.

I guess that's the thing I do know about disappointment...

That it's not so much in how you handle it, it's whether you will choose to defeat it or allow it to defeat you.

And I choose to defeat it.

Each and every ding-danged, blasted, gosh-darned time I must.

That's what I appreciate most about "Team Guppy" --- no matter how many times life trips us, kicks us, or knocks us down, -- as long as we have air flowing through our gills, we will rise to the surface and swim on.

Against the tide no less.

There are too many people in this world so defeated by disappointment that they quit daring to dream or do.

Not us.

Not ever.

HOOYAH!

Experiencing God through "Desperate for Respite" ---

I guess what brings me to sharing these thoughts today, is an "Experiencing God" Discipleship Class I attended years ago.  The most significant words to me, came back to me today as I read an e-mail I received about an event cancellation.

The e-mail was from the non-profit organization Desperate for Respite.  Each month that organization has been meeting the needs of parents who are DESPERATE for Respite.  But due to a scheduling conflict that should not have ever been one in the first place, they had to cancel the event.

The parents receiving that notice will be crushed. 

I am crushed because I know that if my son were not attending camp that weekend, I would very much have been counting down the SECONDS until I could take my son there for him to have a fun evening with fellow friends while my husband and I had some much needed "us" time.

I just can't help but remember these words from that "Experiencing God" class:
“Watch to see where God is working and join Him.” 

God is working through Desperate for Respite.  That is an undeniable fact.  The people who run that organization have seen a need, felt a calling, and answered it.  Though at times it has been nothing but struggle.

As Christians sometimes the hardest thing to figure out in serving, is how, when, where.  How do I know I'm doing what I am to be doing?  How do I know where to serve?

"Watching to see where God is working" is the answer to those questions.

"and Joining Him!" is the exclamation point at the end of the sentence.

God is working mightily through Desperate for Respite -- and our community as well as the churches within that community would do very well to join in that.  Not cancel that, not ignore that, not work against that and not try to recreate that on their own.  But to simply partner with that and join in that.

God is using that organization to increase his Kingdom!  Families who perhaps never stepped foot in a church are stepping foot in a church.  They are "Experiencing God" through the hands and feet of the faithful volunteers.

In a day and age that could use all the light it can get, why on earth anyone would work against those who are shining a light or just turn the switch off completely - for any reason -- is beyond me.


Please join me in sharing this June Newsletter for Desperate for Respite -- if you would like to join in where God has been doing a mighty work, please contact them!

~ ~ ~

The opinions and views expressed here are those of Michelle M. Guppy and Michelle M. Guppy only!
MichelleMGuppy@yahoo.com

The Joy Box...

I have a "Joy Box" in my office. 

Got the concept from one of my favorite Christian authors of all time -- Barbara Johnson.  I suppose my motto is from her life --- Choosing Happy, Living Joyfully, Following Christ, and for me, -- Wearing Camo.

She's been through some STUFF in life, but like one of my new motto's -- she "Made her Mess her Ministry".  As part of that ministry, she kept a "Joy box" of things that when life got her down, she would go to that and look through each sentimental picture, thing, or saying, to cheer her up.  I have a "Joy file" as well as a "Joy box" -- I've saved e-mails of thanks from folks about my writings, quotes from people, etc.  Things to encourage me or make me laugh when I need to.

I guess this evening I found myself dreading taking Brandon to the doctor tomorrow because of his shoulder.  It just keeps popping and crackling and my stomach churns each time I hear it.  I hate being a "the glass is half empty" person in situations like that, but I've got a good record going, in how the glass is indeed half empty when it comes to our track record in such doctor visit matters.

And of course, misery loves company, so I thought about how I was missing my son Matt as well.  How we are back to "Boot Camp" days of little to no communication.  (Anything less than a Skype a day, a call a day, and a dozen texts a day, in this mamma's book translates to "little to no communication.)

So I found myself digging through my "Joy box" and I came across Brandon's t-shirt I had put in there long ago...

 
Not only has he grown since that toddler-sized t-shirt -- but he's changed.  I've changed. Our family has changed.  And yes, because of all those changes in us, the world of autism we live in has not only been unlocked, but changed.  We may always have some difficulties, but in just looking back at that t-shirt and how autism affected the newly diagnosed boy who wore it at that time, compared to the young man of now, -- oh my ---  how.he.has.changed.

Some things however, ahem Matthew, - don't change!  Ha ha ha....

I actually had to resort to my "Joy file" of humorous quotes to get me over missing my Matt.  I came across this one:

“Cheer Up the worst is yet to come!”
― Barbara Johnson

I think I put that in there during a particularly "high volume call period" from the AP at his High School to me at home.  I think that might have been the time the track coach asked if he could have free reign to discipline Matt for driving to Sonic during practice, and when Matt felt he could just leave school to drive to Wal-Mart to get a poster board for his next class and have no one notice.  (Which, the way he drives, I'm sure he indeed felt he could get there and back between classes!)

But much like that t-shirt of Brandon's -- that quote I put in there for Matt has proven true too! The worst kind of worrying for a parent is yet to come for us!  Matt is now in a training program that will test him, and us, in every way possible.  Oh, for those AP phone calls instead of dreading a phone call that he's injured or something! 

Which is why a parent shouldn't worry in the first place.  There's always going to be something worse to worry about, than the trivial thing you're worrying about right now!  Ha ha ha....

I even have a quote in there for that situation:

“Hope is not the conviction that something will turn out well, but the certainty that something makes sense regardless of how it turns out. ”
― Barbara Johnson

That puts a lot of my worrying into perspective. 

Assures me that there is purpose in all things.

My Joy box reminds me that sometimes when I think I'm not getting anywhere, I need to go back and be reminded of where I've been. But most of all, my Joy box reminds me to laugh, and to laugh deeply.  Something Barbara Johnson's writings were all about.  Using humor to cope.

She laughed deeply, as do I each time I read this very last note my beloved Grandpa ever left under my pillow.  It was a tradition of his to when they left from a visit, leave a note to me under my pillow that I would find that night.

Ha ha ha, - sorry Grandpop, but as many things in my life that have changed for the better ---- "cutting down on my sassing" hasn't been one of them!

But then again that's probably what has allowed me to bring about the most change in the autism world we live in..........

To each of us having a Joy box full of joy, love, and laughter!
To changing the world we live in!
To HOPEISM!

To all the Warrior Moms of Autism on Mother's Day.

It's no secret that I have a high regard and respect for the U.S. Navy SEALs.  My son's hero is a Navy SEAL, and because of that I have read all there was to read about them.

As a Warrior Mom of Autism, those books have inspired me.  Those books share about the mental strength one has to have to be a SEAL.  The same mental strength a Warrior Mom of Autism must have as well! 

SEALs for the most part fight enemies they can see using a battle-tested strategy they have studied and prepared for.  Warrior Mom's have no such intel and must fight an enemy we can't even see --- autism.  Oh, we know it's there and has captured our child - what we can't see is exactly where it is.  What we don't know most of the time is what to do.  Mainly for me because my son can't tell me where it hurts.  What is bothering him.  How I can help him.  SEALs must fight the enemy using rules of engagement that aren't fair.  Mom's like me are engaged by an enemy whose rules constantly change and whose tactics aren't ever fair.  

SEALs become SEALs because that is what they want to be. They fight because they chose a path that would necessitate they do that.  Warrior Mom's are not Warrior Mom's because that's what they wanted to be.  They were made to be.  They fight not because they wanted to, but simply because they have to. 

Navy SEALs enlisted.

Warrior Mom's didn't.

SEALS are the best of the best, that one percent of the nation whose character, willpower, strength and stamina cannot be beat. 

The Warrior Mom's I know are the same. 

To become a Navy SEAL, that BUD/S Candidate must go through a grueling testing.  One of the "highlights" in that hell, is Hell Week.  Those candidates must endure every form of physical training and "surf torture" a person could endure, all while not sleeping for more than four hours that entire week.  Some Warrior Mom's I know have gone weeks on four hours of sleep. That Hell Week pushes those candidates to the ultimate extreme of what a person can handle both physically and mentally.  As does Autism. They must be able to endure and survive Hell Week if they ever hope to survive a deployment to a war zone once a Navy SEAL.  We must survive a diagnosis of autism if we ever hope to rescue our child from it.  It's an unforgiving training, and one that is necessary if they are to become what they want to become and are -- the Nation's best of the best.

As much as "Hell Week" is the highlight of a Navy SEALs training, "The Bell" is the highlight of Hell Week. The bell as pictured above, is located at the "Drop Area" on the base in Coronado where they train.  When a candidate can endure no more, for reasons only they know, they take that solemn walk to where the bell is and they ring it.  They place their helmet under that bell on the concrete in a row where others before them have done the same. To the candidates who see that bell each and every day, it is either a friend or a foe.  It is a motivator encouraging and challenging candidates to Never Quit as much as it is a tease that begs them, taunts them, and assures them they will give up and quit.

The test for a SEAL wanna-be -- is which voice will win.

I guess for me on this Mother's Day, as a Warrior Mom of Autism, -- I find that bell and all it represents more inspiring than any gift or Hallmark Card.  I know that as a mom whose son is severely affected by autism and in all the ways that diagnosis has affected our lives - that bell represents all the extremes I have endured.  All that all Warrior Mom's of Autism endure.  In what we have to go through each and every day from the moment our child is taken by autism.  In trying to reclaim them from that autism we sometimes daily go through our own Hell Week.  For the SEALs, "The Only Easy Day was Yesterday".  For us, "There Ain't No Easy Day."

Heck, there ain't even no bell for us to ring even if we wanted to!

Let that sink in...

In their training, the elite of the elite have a bell to ring for their pain to stop when they've had enough.  They can choose to ring it and be free of the pain, or go on enduring the pain for the triumph over it that their earned Trident pin, the symbol of a Navy SEAL, will bring.

I know no Warrior Mom of Autism who has given up.

What I do know, is that there is a row of helmets of those who have tried to defeat us or our child, but failed.

The reward for those of us who never give up isn't a trident to wear, but our child that we've healed.

Or died trying to...

And that's what I want to share with my autism-mom friends on this day.  Especially for those like me whose child cannot even make them a card for Mother's Day or tell them that they love them.

That you are the top one percent of Mother's in this Nation, in this World. 

You have endured what no typical Mother could ever endure.

You have made it through each Hell Week autism has thrown at you.

You were not given a bell to ring when you've had enough and wanted to quit - and even if there were one for you to ring ---


You wouldn't.


From reading about Navy SEALs to keep my own mental strength where it needs to be to survive autism, I came across Richard "Mack" Machowicz and his "NDCQ" (Not Dead Can't Quit) philosophy.

I'll leave you with his encouraging words on this Mother's Day---

Dream! Dare! Do!  N D C Q!!

Keep DREAMING the wildest dreams for your child...
Keep DARING to defy those who say those dreams can't come true...
Keep DOING all that is in your power to change attitudes, policies, discrimination....

To HOPEISM!

HOOYAH!

A Call to Autism Action

Please share this far and wide:

Click here to join the movement in demanding Congressional Hearings on Autism.

The Autism Awareness Month Blog...

The "Thirty Steps in our Shoes" Autism Awareness Blog is now here on the below link for any future reference...

Click here for the Autism Awareness Month Blog - Thirty Steps in our Shoes

When life ain't fair.

Sometimes it's too much.

Too much to bear, too much to understand, -- simply too much.

To have a child with autism, one could learn to accept and overcome. To have a child with autism, epilepsy, GI disorder, and a mystery-illness causing weight loss that he can't afford to lose to begin with, -- is just not fair.

I get that in life we must have "crosses to bear" -- what I don't get, is how life has free reign to keep nailing more crosses on the one you already have.

I don't get how heroes like Dr. Wakefield, who have done more for Autism and GI issues than anyone anywhere, must not only bear the cross of shame that others put on him because of being threatened by him, but must also now bear the cross of lawsuits in defending himself and the financial toll that takes. And not only those crosses, but as if that weren't enough, his sweet, angel of a wife was in a car accident and has a very long recovery road ahead of her.

I don't get how my friend, the person who is responsible for helping me get Brandon out of the public school that did nothing for him and into her school which has done everything for him, and who is the mother of a son who has autism, plus another sweet little boy --- I don't understand how her husband must be killed in a car accident.  Her love-of-a-lifetime soul-mate husband! 

I don't understand why each and every day I'm faced with knowing I have single friends who have children with autism and whose spouses have left them.

I don't understand why each and every day I'm faced with e-mails from parents of children with autism needing the financial resources that simply aren't out there.

I don't understand why each and every day my phone rings from parents who need help because their child with autism is not getting what the law requires them to get in the public school, but who do not know enough to fight them.  And even if they did know enough, they could never afford to.

I don't understand all those things and much more about this "Life with Autism."

I don't understand it to the point where I just want to scream in rage. I want to hit. I want to destroy. I want to simply shut out the pain and not care. 

I simply want to hate.

But what I do understand...

Is this...

You can't do that.
You can't shut out the pain.
Because if you do, this happens:

When you close your heart to the bad in life, you also close your heart to the good in life.
When you close your heart to not feel pain, you close it to not accept healing.
When you close your heart to not feel sadness, you close it to not feeling happiness either.
When you close your heart to keep sorrow out, joy can't get in.
When you close your heart to try and prevent that hatred from seeping in, love can't find its way out.
When you close your heart and reject God, you open it to allow satan in.
When you simply give up and don't care, thus shutting out all the lies and injustice, it means you've also given up the even greater fight to let the truth out.


And as much as life hurts sometimes, especially lately, I refuse to allow those things to happen.

I will keep my heart open to see the beauty, choose the happiness, and experience the joy that life has to offer.

I will keep my mouth open in proclaiming the truth.

I will.


Even on days like today, when I don't want to.