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.
December 22, 2010
As a child it meant Santa, Rudolph, and gifts galore.
It was a winter wonderland perhaps not always of snow, but always of the magic of it all.
Christmas as a child was a carefree time with no worries.
When my husband and I became Santa & Mrs. Claus with the birth of our first son Matthew, Christmas was all those things and more, but perhaps with deeper sentiment.
In knowing we were making these memories for our son, to be his Christmas memories one day, to pass on to his son, and so on.
As it should be.
During Matt’s childhood, I could not imagine Christmas meaning any more than it did then.
We had the best of both Christmases.
Both real and make-believe.
The bribery of Santa’s ‘naughty’ or ‘nice’ list.
The truth that Christmas was about Baby Jesus’ Birthday, who was born for us to be put on His eternal-life list.
Cuddling on the couch with him each night, watching Charlie Brown, Rudolph, or Santa Claus Comes to Town.
Christmas Eve Candlelight service, singing about our Savior.
And then the look on his face Christmas morning in finding all the toys Santa left him under the tree…
I thought that was Christmas.
And his autism.
What would Christmas be then?
Can a Christmas, without Christmas things, still be Christmas?
Without the understanding of his own Birthday, let alone Jesus’?
What memories do I make for him, who might never have a son to pass them on to?
I now know the answer.
It would still be Christmas.
Christmas through Brandon’s eyes.
You see, once you strip everything from Christmas that is autism… the magic, the pretend, the imagination, those things that my son can’t comprehend.
The crowds, the Christmas goodies, & the parties that my son can’t have or handle.
And the perfect gifts, that I can’t buy, from a list that he can’t write…
If you take away all that – all you have for Christmas is a mom, a dad, and a precious child.
If not, look at any Nativity scene.
What do you see?
What don’t you see?
And when I look at it that way, I can see why many do not like this time of year.
And I’m even more dazzled by how much I love this time of year.
They see a perfect Christmas as one in a clean, full house, decorated exceptionally.
I see it as an essentially homeless couple forced to have a baby alone in a dirty barn.
They see the only point of Christmas in being if you have a job and can put gifts under the tree.
I see it as a poor Shepherd Boy who had no gift to bring except for himself.
They think you can’t have a Merry Christmas if you are burdened by challenges, disappointments, or poor health.
I see the joy of Three Wise Men who wouldn’t have missed that journey, that Holy Night, and all the hardship & challenges they had to endure to get there - for all the Frankincense, Myrrh, and Gold in the world.
And sometimes when the world tries to make it so complicated and hurried, I think it is good to just sit back and think as simply as the animals did in that barn long ago, - simply staring in awe at a baby asleep in their hay.
It’s because I now must look at Christmas that way, that it has become the most wonderful time of my year.
It’s the time of the year that I look back on the journey and how far I have come in following that Star, my God, who is up in the heavens guiding me.
It’s that time of year when I can look back at all the Herod’s in my son’s life who would want to harm him, but didn’t because I would go to the ends of the earth to protect him.
It’s that time of year when I take time for renewal, in preparation for the New Year and a new journey, as challenging as it too may be.
It’s that time of year when I can truly smile that in my own plain-ness, I am highly favored.
I have given birth to a most special child.
No, not one who would save the world from sin…
But rather one who has saved me from myself.
Yes, I can look at what the world has done to Christmas, and what it has told me Christmas can only be about – and I can see how I too would want it to just go away as quickly as possible.
But when I look at Christmas through my son’s eyes, and through Mary’s imperfect journey in getting to that first Christmas night so long ago, I can only see joy, peace, and a most perfect love.
I can only be joyful.
I can only wish for it not to end!
I think that’s God’s personal confirmation to me, that He knew what he was doing with autism in my life.
His personal illustration to me, that Christmas is not what the world has taken away in my son, but rather what God has given me through the gift that is His son, my son.
Christmas through Brandon's eyes, is my son’s gift to me.
His sacrifice, my gain.
Those lines sound familiar too…
And it humbles me to no end.
Just like I’m sure it did to Mary.
As she saw Christmas through Baby Jesus’ eyes...
On that first Holy Night, many Christmases ago.
Merry Christmas Brandon…..
I love you .
December 17, 2010
I know you didn't want to be late to work this morning, or have to haul your son out of the tub yet again from another seizure.
I know I didn't want to have to take the dog to the vet, nor have my plans changed or made more difficult to complete yet again by Brandon having to miss school...
That seems to be the key word of late!
You and I remind me of Joseph and Mary.
Their journey to the birth of Christ.
No, not that we are as holy or as chosen as they were.
But that really in God's plans and purposes for our lives, we are.
Their life together was not as they planned.
Many pitfalls, challenges, tests of faith.
I have to know that during all that - they were focused on the destination. On the overwhelming joy of what would come to be - overshadowing all that they would face simply to get there.
And so I simply thank you this Christmas.
For listening to that voice of God that tells you in prayer that all will be well if you remain steadfast and focused and do not jump ship no matter how hard it may shake.
For living that quiet, simple life of focusing on only what matters and helping us to shut out all that doesn't for self-preservation of our sanity.
For loving the Lord your God with all your heart, soul, and mind.
Those things being the key to our survival of "Life with Autism".
Our journey lately has been a hard one.
It's tested our patience and endurance.
But I can't help but smile in how it so reflects all that Christmas is meant to be about.
And I know that come Christmas Eve and Christmas Day - if we have never left our house to do anything "Christmas'y", if we have not a Christmas gift bought, not a Christmas card sent, not a Christmas program or party attended, - we will have celebrated the true gift of Christmas in the way it was meant to be celebrated.
And the ever present...
You'll want to focus on that last one when you get the $515.00 vet bill from this morning.
I love you Todd....
Thank you for all that you do....
December 3, 2010
(originally written in 2004)
December 2, 2010
There's a scene in one of the episodes where Charles & Caroline had just lost a baby boy. Caroline was in a strange town where they had taken their son to get better help, and it was there where he died. She stood staring out the window at the busy street down below and simply said, "Where is everyone in such a hurry to get to..."
Her son had just died and she could not imagine anything else in that moment.
Time for her, simply stood still.
Being no stranger to travesties with my own son who has epilepsy, I often find myself thinking of that line in that episode.
Something Life with Autism brings to me, is an appreciation of timelessness.
In Brandon's world, there is no time.
There's never not enough of it, never too much of it. He doesn't even know what time is, and is therefore, never stressed by it.
He never has too much to do where he would need more of it, and he's never been bored and wished he had less of it.
He simply lives each moment, as that moment.
Once that moment is gone, no regrets if he made a mistake or lived it wrong.
Never thinking about moments yet to come, nor the worries or stress of what those moments might, or might not, bring.
His world is a timeless world - and the kind of world I try to live in as much as possible.
Where all that matters is this moment right here, right now.
Where all that matters is if you are truly living in this one moment that you are guaranteed.
Each seizure my son has, reminds me of that.
Today he had one and fell backwards down our wood stairs, landing head first on the tile floor.
He survived that praise the Lord, but it once again reminded me how timeless time is. In the moments that followed that incident, it didn't matter what time it was, what appointment I was missing, what I could or couldn't now get done.
It didn't matter if that put Christmas behind - or at least my self-imposed thinking of what schedule should be kept in the warp-speed pace that Christmas has become.
Nothing mattered except each moment that I could sit with or lay beside my son, simply being thankful for each breath he took.
Christmas -- the stuff of it could have come and gone and I wouldn't have cared or really missed it.
Because Christmas -- the spirit of it, was being lived right there and right then in the simplicity of a moment.
Of each moment filled with thoughts and things that truly mattered.
Surprisingly not one of those thoughts or things included gifts still to get or parties to plan or attend.
Much like the simplicity of the moment on that Christmas long ago when all Mary and Joseph could do, was sit with the newborn Savior-King and keep him warm and safe.
Not complaining about or regretting the hardship of getting there, not worrying about the hardships that would face them in the days ahead.
Just simply savoring that timeless moment of Christ's birth...
That's the kind of timelessness that my son celebrates each day.
And the kind that I vow to this Christmas.
As I look out my window each day wondering where all the people are in such a hurry to go, I'll be thankful that because of my son, I'm not going to be one of them...
Christ gave to me unconditional love.
I never really understood what "unconditional love" meant, until my son Brandon brought "Life with Autism" into my life.
Here is a child who by the world's standards, can give me nothing. He cannot show his love for me by searching for or making me the perfect gift. He cannot tell me he loves me. Most days I wonder if he even knows me, let alone loves me!
But I know that he does.
And I know that I love him whether he can buy me something to show his love, make me something to show his love, write to me that he loves me, or tell me that he loves me.
I love him when I get a rare hug, a sweet smile, when he's pinched, punched, or puked on me.
I love him whether he knows me or loves me!
That is unconditional love.
To give everything for someone who can give you nothing.
That's God's love for us.
That He gave everything for us.
For us who can truly give Him nothing.
He loved me when I didn't yet know Him. He loved me when I did know Him but rejected him. He loved me when I finally accepted Him and then hurt him.
He. Simply. Loves. Me. Unconditionally.
No. Matter. What.
What a perfect gift to know and receive this Christmas --- Christ's unconditional love!
Thank you God for the unconditional love whose cheek Mary kissed when he was born on that Christmas Day long, long ago...
Thank you God for the unconditional love whose cheek I kiss each night...
November 17, 2010
Let me explain...
Our son with autism has seizures and has been in a very bad seizure-cycle for the past two months. Finally, after watching him go through hell with each one and me getting no help to help him, -- a not-so-nice letter to his primary care doctor resulted in tests scheduled and referrals being made.
In preparation for all that, we had received a flier in the mail from a Medical Center by our house about a seminar on Epilepsy. Essentially going over the latest and greatest in research and treatment.
Hence, our hot date tonight.
Before another hot date tomorrow for the EEG.
Now to most people, a hot date would imply a much different scenario. But not for us. Our second honeymoon was spent in Orlando. No, not to have 'sex on the beach' the drink - or the act. But to stay cooped up in the airport hotel at an Autism conference listening to workshop after workshop, on poop.
In fact, the closest we got to Mickey Mouse that weekend away, was the Disney Gift Shop right there in the airport/hotel that we again, never left the entire weekend.
Yep, just me and my sweetie, and a whole heapful of poop. Pictures of it, the research being done on it, and the treatment of it. I still swear that I could actually even smell it coming from the overhead screen during one such graphic workshop.
Thankfully though, this hot date will be a bit less... crappy.
Yet the reason for having to go to the seminar stinks just as bad.
We just came off of a decade-long battle with that issue, and now must focus on the treatment and recovery from this lingering issue. Let alone all the other issues we daily face.
I'd like to cancel my subscription to autism issues please!
Just like with the "Leaky Gut" issue, where we were repeatedly told, "It's just autism", (um no, it looks like diarrhea to me, not autism), I have been told that these horrendous seizures might just be "learned behavior".
Yes folks, that was the expertise we were met with after one season of seizures years ago. After a period of nine months of relentless seizures that responded to no amount of medication, and after stitches on his eyebrow, a broken collarbone, twisted ankle from stumbling, and shattered front teeth, --- because the EEG during a brief period did not show any seizures, the only intelligent, common-sense conclusion would be that I, his mother who was the one with him day and night, was mistaken. I wasn't seeing seizures, I just had a faker for a child.
I told my husband that night what the "specialist's" diagnosis was, and his reply was, "And you let him live?"
If I wasn't so sleep-deprived and caught off guard when he said that, I just might have gotten in a few good punches before security was called.
No, not really. I don't condone violence, nor would I perform it, - but visualizing it in some situations like this, sure makes me feel better....
Just because an expert didn't see a seizure on an EEG during a time he wasn't having seizures, doesn't mean he's not having them, any more than being autistic and having chronic diarrhea is 'just autism'.
Which brings me back to our hot date tonight learning more about epilepsy so we can turn his seizures from helpless to hopful in him being seizure-free one day.
Which leads in to our hot date tomorrow as well, as we wrestle our son's arms and legs that will be flailing as they attempt to put the leads on his head, the most sensory dysfunctional part of his body.
To further the romance of that rare day spent together as husband and wife, we'll have to somehow get him to lay there still and quiet and if we get really, really, lucky, we'll score by Brandon having a seizure during that time.
But if not, and when I'm sitting there while yet another "specialist" suggests to me that perhaps what Brandon has been experiencing these past two months might just be 'behavior' -- I'll at least be prepared.
I'll know I've learned everything I can and did the best I can.
And will continue the search for answers just as long as I can.
While I'd rather not be on this roller coaster called Life with Autism - I at least know I'm not alone. I have an entire community of support, and an entire church of prayer partners.
And a wonderful husband to go on these hot dates with.
It took me ten years to find a doctor who would test for, diagnose, and properly treat my son's gut issues. But the validation of that moment made it worth it. I was no longer just a mother who imagined cleaning up diarrhea 8-10 times a day for a decade, I was a mother who perservered and with God's timing and provision found our miracle.
It may be that with these seizures as well.
And that's ok.
That doesn't deter me nor does it discourage me.
It just makes me cling tighter to the hope that this test will be different, this new referral will be the one.
And that this too, shall pass.
Hanging on to Hopeism,
Michelle M. Guppy
October 28, 2010
I took the above picture from my Uncle's boat in Georgia this summer. We were out fishing and a summer sea-storm came in about as fast as it went out. The picture was taken after the "went" part, when the storm passed and the clouds were moving on and the sun was breaking through.
That description also depicts the song "Hold On" by Toby Mac ---and the lyrics of that song describe our Life with Autism.
... so hold on, just another day or two, I can see the clouds are moving faster now and the sun is breaking through... If you can hold on, to the one that's holding you, there is nothing that can stop this crazy love from breaking through....
We've certainly had our share of "Holding On" and "Crazy" experiences during the storms of autism and seizures, waiting for the clouds to move away so the sun could break through.
Ever since my husband came home from prayer meeting last night and shared his heart with me about that experience, the 'who' of who we've been holding on to throughout everything has consumed my thoughts.
He wanted us to pray together that night, after he spent such time in prayer already. For us to "hold on" to the One who was holding us.
And holding our son.
That's what our ministry is about. Two seemingly separate ministries in that he does his at church. Mine is done more in my writing and ministering to parents by e-mail that I can help no other way, except in prayer.
But together, we so do not want 'the world' to see the fear of autism, seizures, or anything, as something we've held on to, or are holding on to.
Though make no mistake, there have been many things that we've been fearful of.
I remember as if it happened just a moment ago, the sound of my son's permanent teeth shattering on the tile floor when he fell from a seizure. Before I ever saw what happened, I knew what happened. I remember sitting on the couch later after the chaos in absolute shock that the thing we prayed hardest for to not happen, happened.
(For his permanent teeth to not be hurt during a seizure - his smile was the only part of his body not affected by autism, and we wanted that smile, those pearly white teeth, to remain untouched)
Our worse fear had literally come true. That rarely happens for anyone, yet it did for us. It was hard to accept that.
My husband and I both remember our son having a seizure and falling from the top of the deck to the cement patio below during another one. It was like watching a nightmare from slow motion. A nightmare we hadn't even considered fearing. But we didn't have to. He survived without a scratch.
We remember the absolute horror in finding our son in the backyard, blue and not breathing after yet another one. THAT, should have been our worse fear all along, but it wasn't. It didn't need to be. God said, "Not his time...". And after CPR he came back to life.
There is nothing lighthearted or funny I can share about in those situations we've had to go through.
They were fearful times emotion-wise, as people no doubt saw on the outside.
But what we so want to share about our faith and ministry with others, is that during those times we were not holding on to the fear.
We were holding on to our father.
The One who was, is, and who always will be, ~ holding on to us.
Because my husband leads a prayer ministry at church and has for months at times been the only one at the church on a Saturday night, one of few on Sunday morning, and part of many lately on Wednesday evenings, some see him as "The Prayer Guy". The one to go to for prayer needs or to lead prayer times. As if he has some special 'prayer power' that sets him apart.
Something that qualifies him above others.
I suppose he does.
It's called dependence.
He knows he can't be the Christian God wants him to be without prayer.
He knows he can't provide for our family without prayer for his continued employment and to find favor with his boss.
He knows he can't be a father to his children without being in constant prayer to his Father.
He knows without a doubt he can't be a husband to his wife without hours upon hours of prayer....(smile)
And he knows in his heart that it is God's desire for His people to come together in God's house to do that.
So he does.
And it's also called fear.
The fear that without those situations in our life to draw us closer to our father, holding on for dear life, we wouldn't have the sense of peace from our Father.
Or the sanity to cope.
We fear our prayers becoming complacent.
We fear taking the calmness for granted.
We fear taking God for granted.
We fear forgetting what the security of entering the Father's fortress of prayer during our deepest darkest, most desperate moments feels like.
I think that's what's scariest of all, and I can't help but be overwhelmed by how if those fearful situations had not ever happened in our lives, we wouldn't know that security.
We wouldn't have that dependence on God.
We wouldn't be gripped by the power and purpose in prayer as much.
Even in unanswered prayer.
Our son is still having seizures.
Todd came home last night after a particularly moving prayer time with his heart being burdened by so many of Brandon's seizures of late.
He cried there at church, in the prayer meeting, in front of many, many people he doesn't even really know. He shared with me how he didn't want people seeing tears of fear, in him not being able to handle the seizures or being hopeless because of them. He didn't want others to see the tears and have pity on our situation. Or to feel sorry for us.
But to rather see those tears as total submission and reverence to the amazing sovereignty of a powerful Savior who can stop those seizures with a split-second sigh.
When I'm home and the one who must hold my son during a seizure, it's not tears of helplessness I cry, even though helpless is how I feel in terms of the power I have within me alone to stop them.
Rather it's simply the tears I cry when I need the One holding him during the seizure, to hold me too.......
When we share those things on Facebook, e-mail, in person during prayer, it is not the attention or 'woe-to-us' that we seek.
It is the call for companionship of our 'crazy friends' as in the song, to march with us in our crusade. As we march with those we know who are in crisis or whose lives are in chaos.
For both of us it is scary, yes. We do pray they stop. But more than that, we are surrendered to our Savior and willing to go through anything that gives Him the Glory.
It's so hard to convey that to a watching world.
To a world that wants convenience and ease.
Autism is neither.
Autism & seizures, are even more neither.
But yet that's where we find our prayers to be the most meaningful.
It's where we find ourselves holding on to God our tightest, and that's where we want to be.
Stripped bare of pride, Todd at prayer meeting, me through my writing, allowing our tears to quench our faith's thirst.
When we hold on to God that tight in prayer, only then will we ever understand just how much tighter He is holding on to us.
If anything qualifies anyone to be a leader in prayer ministry, it is just that.
Until over autism, over seizures, over anything, -- there is victory.
...and the stars are up there shining for you, oh, the Father does adore you, His love will never change, And you and I we were born to follow, the hope that will lead us to tomorrow, and no one can take it away...
Michelle M. Guppy
October 14, 2010
He simply asked:
"Mom whats wrong with him ?"
That's exactly how he typed it.
It broke my heart.
And as I laid there beside a raspy-breathing Brandon, I wondered what to text back to my sweet son who was supposed to be sleeping, not worrying about his brother's seizures.
This son who in Elementary School, started off one day with the ambulance getting to our house right before the bus did because his brother broke his collar bone during a seizure.
This son who in Middle School called the ambulance for us while Todd was giving CPR to a not-breathing Brandon after we found him unconscious & blue in the back yard from a seizure.
This son who while in class in High School, I had to call to come help me get his brother out of the van and into the house because he had a seizure on the way to me driving him to school and I couldn't get him out once I got back home.
Never once during those times did he verbalize what he must have been thinking then too.
But tonight, he asked the question that I could not answer.
Oh how much easier it was when Matt was little and could only ask questions I knew the answers to!
Oh how much easier it was when Matt was little and the boo-boo's not too big for band-aids!
When a scraped knee could be made better with a kiss.
When broken toys could be glued back together.
When someone was bullying him and all it took to solve that was a phone-call.
I remember when stitches fixed his cut skin, surgery fixed his severed thumb, and a cast fixed his broken bone.
And I remember a time not a few years after that, when there wasn't such a procedure to fix his first broken heart.
All I could do then was hold him and hug him.
And then the present, last night, and the text message.
"Mom whats wrong with him ?"
I laid there and thought about how Mom's & Dad's are indeed, supposed to be able to fix anything.
We are supposed to know all the answers to all the "why's" our children ask us.
But I guess there comes a point when we have to answer the "why's" with the "who's".
I don't know why you have a broken heart; but I know the One who will always love you unconditionally and who will never leave you or forsake you.
I don't know why bad things happen to good people; but I know the One who has a plan for you and who will prosper you and never, ever, hurt you.
I don't know why there are no answers for your brothers seizures; but I know the One who because of His very sovereignty, is the only answer we need to accept and have faith in for now.
I won't know the answers to the "why's" you will no doubt ask in the future; but I know the One who created you. Who knit you together in your mother's womb, who has searched you and who knows you and your thoughts as well as all the days ordained for you before even one of them came to be.
And I know that because of that, we don't have to always know the answer to what is wrong.
We just have to remain steadfast in knowing that one day all those wrongs will be made right.
As a complete stranger.
A fly on my own wall -- so to speak.
To see our Life with Autism as a stranger might see it.
I'm sure at first glance, heck, any glance, it would seem like pure discombobulation.
A mom trying to keep a resolution to be like "Julie & Julia" and cook something new each week for her all too deserving husband. To somewhat make up for years of not being able to consider such a challenge in the face of the challenges of autism.
A young adult son grabbing the onions she's just chopped while her back is turned checking something in the oven.
It's cute if it was a little toddler doing that and you could threaten them with their life if they did that again.
But not so cute when it's an adult child who doesn't know any better doing that, and doing it over and over again because threats don't work on a person who doesn't understand what a threat is.
The military precision with which all doors are locked then unlocked to enter or leave a room, pantry, refrigerator, garage, or yard.
The secret service duty of always having to know where that person is every moment of every moment.
The lengths we go just to keep whatever we're drinking, for ourselves. Hide-and-Seek has nothing on our family. Try finding a hiding spot to set your drink between taking drinks, where an adult-sized child won't get to it to drink it before you can finish it.
I chuckle when I think what our guests must be thinking when they're eating with us and we look at them then smile at each other as we put our drinks on top of the refrigerator behind the basket with a towel over it, lest one millimeter is showing, - while they naively just set their drink down on the table where they're sitting.
You will quickly learn.
And then Brandon walks by and teaches them.
As he has taught each one of Matt's friends anytime they came over for pizza and left a slice unattended while they went to the bathroom or out to play, and came back to no more pizza.
But Matt still had his.
It was in the oven, on the top shelf, pushed back where it couldn't be seen when the oven door was opened.
Because he knew, the oven door would be opened.
I wonder if they would see the stains and scrapes on the walls and banisters as bad housekeeping.
Or the little things that in your spare time you have time to pay attention to, and do; but for a family that has no spare time, must remain overlooked...
Do they see that as laziness?
That concept is as foreign to us as keeping a campaign promise is to a politician.
When they see our house and it's lack of fancy decorations, curtains, or meaningless things, do they feel sorry for us or think we're lacking?
Do they think us poor?
I hope not, because our house is instead filled with things they can't see that can't be lost in a flood, tornado, hurricane, or destroyed by our tasmanian-devil Brandon!
It's filled with laughter, tears, and we hope unmistakingly to others, - the presence of God.
That's all the wealth we care to have.
That's all the wealth we need.
And yeah, they'll hear alot of the stuff most people try to hide.
Shoot -- I share thinks daily that others would shudder to utter!
I at times yell.
My husband at rare times, letting his frustration come out.
My typical son sometimes acts like a typical teenage son.
And my not-so-typical son is all the time his loud hummy-hummerson self.
It may be embarrasing, it may be irritating, but it's real.
Life does get tough and we do make mistakes.
We've said things we've regretted to each other; but we've never regretted the blessing that has stressed us to the point of having to say we're sorry for those stupid things to each other we've said.
But in the dysfunctionalness of our family at times, and in the non-existence of any typical normalness, we've manage to function.
We have consistently stuck it out, no matter what the it was.
And for the it, for us, there is no self-help book to solve it in 5 steps or 5 weeks or less.
It, is for the most part until prayers are answered, - lifelong.
There is no option to leave it.
There's no way to avoid it, go around it, get counseling to solve it, buy a cure to fix it, or to even deny it.
Only the option of depending on the only One who can truly see you through it.
I hope they see that, and then go back to their home with the feeling that the things that trouble them there, aren't so very bad in comparison.
That maybe they are making life a bit more complicated or extravagant than it needs to be.
In seeing all that we can't do as a family, I hope they would not take for granted the things they can do with their own, yet probably don't because of selfish individual "me" pursuits.
Where we can't all do things together, we have learned to divide and conquer in doing all things. My husband and typical son have created great bonds in service to others on Saturday's; while I have served in caring for my son so they could do that.
The fact that our family has spent more time in serving somewhat seperately than vacationing perfectly together, doesn't mean we've missed out, it means we've instead been given the opportunity to do what disciples of God are called to do...serve others and not always self.
Creating memories where we can go, instead of wallowing in misery because we can't go.
Ever more so grateful for those who chose to serve us instead of themselves, so that we could on rare occasion, all go somewhere or do something together.
And even though they would see our marriage perhaps more as us being two doctors giving shift reports to each other as to the status of the children, household, and honey-do's; I would also hope they see it as something held together by something perfect circumstances could not ever provide for.
That we've stayed together despite no regular date nights.
Despite the lack of regular, meaningful communication.
I would hope they learn that you have to find a way to keep a committment, when everything in you screams how much easier it might be without that committment.
When you have no more energy for that committment.
That's where in that strand of only husband/wife, the third strand of God comes in to keep the braid, braided.
And then when you get the chance for a date night and meaningful conversation, it's that much more meaningful.
It's not taken for granted.
It's like a new marriage, each time there's a chance to have a marriage!
After a weekend of poop, floods, humor, and horrors, - they might wonder how we don't drink, beat our dogs, or do drugs to cope.
After a week of witnessing our insurance denials, seizures with no answers, ARD's that get nowhere, and dealing with policymaking absurdities, they might view a bad day at their office as not such a bad thing.
After a month of witnessing the seriousness of us dealing with some stuff where even the God we hold close in our heart seems silent - to see that we still love Him, we still have hope in Him, and we still trust Him.
For sure after that experience, they would view our life as uncontrolled chaos.
But our chaos is controlled.
We are a well-oiled machine that only occasionally has the normal slip-up in having a neighbor call us from the park because our son slipped out of our 'forgot to lock it' back-yard gate.
Only occasionally do we take the last sip of our drink and realize as the gfcf bread-crumbs from the bottom hit our lips, that we didn't quite put the cup far enough back behind the basket on the top of the refrigerator.
Only occasionally does Matt find that Brandon slipped in his 'forgot to lock it' bedroom to find candy wrappers and half eaten candybars all over his bed.
Only rarely does Todd have to come home from work, take off his shoes and roll up his pants to wade across the floors to get the shop-vac because of the 'forgot to lock it' bathroom that flooded because a sink was turned on for a drink and never turned off.
I have to sit here and chuckle at the thought of a stranger spending time with us then running out the front door screaming "Get me outta here!" just as fast as they can from the experience.
We've had attendant-care providers do that.
Even a few relatives.
Heck, some days I'd like to join them.
And that's perhaps the best thing our Life with Autism has taught us.
That we wouldn't.
October 13, 2010
It's given me freedom. Freedom to connect with who I want to, and the freedom of not being burdened by connections I don't want.
I wish I could say the same for the battle of getting control of my e-mail account.
In the isolation of my Life with Autism, Facebook is sometimes my only opportunity to see anyone in the outside world.
I've enjoyed connecting better to politicians and policymakers through Facebook...reading their posts, seeing their priorities.
But it saddens me.
I've seen Politicians lately frothing at the mouth at the possibility of a perfect political election storm, in that if so and so loses, so and so will get that seat. That will open up for so and so party to be in control.
Is that what it's become about?
More who is in office than who in office than what's actually done while in office?
It seems the most work done, comes the moment before they might get voted out of having the priviledge of serving the people by working their darndest for them.
I admit I'm pathetic politically.
I'm neither democrat, republican, nor independent; but rather parts of all of them.
I refuse a label that identifies me as a member of any clique.
Ok most cliques.
I'm a Christian, I suppose that could be viewed as a clique as well.
And for some, it is.
I further admit I'm probably part of the problem because many, many, many elections, I never voted. The ones I did, was more a vote against someone than a vote for someone.
And I'm not sure that's the point of voting in the first place.
What I have done faithfully monthly, if not weekly, is contact those in office to express needs and injustices for those who could not do that themselves.
Instead of voting for the lesser of two evils, I've just determined to battle evil period!
And that's such a sad way to view it.
I'm not sure if that balances things out - but the way I see it, our freedom to vote is so watered down by the politics of voting, that I'm not entirely sure it should be called a freedom to vote.
Freedom to vote is now more a freedom to express an opinion between two names on a piece of paper, than a freedom to have had the opportunity for names who truly deserve to be on that piece of paper, be on that piece of paper.
And the profit-mongering-lobbying of the political process has all but squashed that opportunity.
Who better knows how to serve the people, than someone who has suffered alongside of the people?
But how many of those people can afford to get on the ballots?
Either way, as I read more and more on Facebook from those Politicians busy politiking, I wonder who is actually doing the work of serving those people they promised to serve.
I mean, are you really serving the people when you have staged reading times in public schools? Or might that service be better spent alongside a family trying to navigate the system you naively created for them to try to navigate?
Being principal for a day, or being poor for a day?
I don't think too many are actually working for the people.
For the votes maybe, but not the people.
And I'm reminded of what should be the motto for any person who has the honor of being called a politician in office. It was a quote someone heard a Senator say in reply to the Autism legislation that was initially passed a few sessions ago:
"I would have fought for this bill to pass even if it cost me my re-election, because it was the right thing to do..."
That's how it should be.
People on ballots who other people vote for because they want them in office.
People who serve their term as if it will be their last.
Not parties on ballots that do nothing but perpetuate the lameness of a lame duck session of bickering because their very label dictates that they are supposed to disagree with someone of a different label.
Where's the unity of purpose in that?
My son doesn't care if it's a Democrat or Republican who advocates for him anymore than I would vote for Perry simply because I'm a Christian and Christians vote Republican.
No, it should be this:
Candidates not afraid to do hard work, expecting to serve only one term, and using each drop of every day as their once in a lifetime opportunity to make a difference in the world.
Not half a term to try, the other half working even harder for the chance to try again.
My son deserves that kind of political philosophy.
And I'm sorry that it's been way too long since he's been given that.
I'm sorry Brandon, that we have a billion dollar surplus for a rainy day, but that your needs, and the needs of your friends, aren't worthy to be called a rainy day.
I'm sorry Brandon, that we think it more important to build multi-million dollar state-of-the-art stadiums to watch millionaire teams lose in, than it is to meagerly fund a program that gives you a place to hang-out at on a Friday night or Saturday Fun Day.
I'm sorry Carla that we have politicians more excited by the possibility of perfect politicial storms than by you having the choice to live in your community with supports.
I'm sorry Mr. & Mrs. Jones that you are on your third mortgage and have no 401-K left in caring for your son with a disability, because those who you gave your vote to who promised to help you, sold it out to those whose money could get them the political leverage they need to go higher in office while doing less.
I'm sorry all those like my son who have been on a waiting list for years to get services, only to have them cut in half each year, while the paperwork to even get that, triples each year.
I'm sorry all those like Hassib, that the help you needed was replaced with the hatred of others who abuse you versus care for you because of a system that devalues you and pretty much says that not only they can, but they will and will get away with it too.
I'm sorry Michael, that keeping and supporting a broken institutional system means more to a group of parents, lobbyists, & politicians - than your life meant to your family.
I'm sorry to every child being left behind by a not so very special, Special Education system that seeks more to graduate than educate.
I'm sorry to everyone affected by broken systems and broken promises simply because those who were put there to fix them are too busy getting re-elected to office so they can serve another term of not fixing them.
I'm sorry to all of you.
All of you who can't vote, can't speak up, and who can't buy a politicial agenda from a politician more focused on being politically correct than doing the correct thing.
I'm sorry meeting your needs doesn't net returns worthy of your needs being met in the first place.
I'm sorry you don't get treated better.
You deserve better.
We all do.
October 12, 2010
This picture is one I took after a day of sailing with Captain Dave of "Heart of Sailing" in Kemah.
We were on our way back to the car, and where Brandon would normally be lagging behind us taking in the sights, he suddenly hurried up ahead to where his brother was walking -- and kept up with him, just a step behind him, walking stride for stride.
So much went through my mind as I was capturing that kodak moment.
From where I walked behind both of them, they looked so.... "normal".
Like two brothers who grew up laughing, fighting, breaking windows with baseballs, and pushing my sanity to its limits with their brotherly antics.
Like two brothers who at 17 & 16, would be fighting over girls, their dad's car keys, and who could beat him at arm wrestling.
(Neither of course, would be the correct answer in that....)
Watching them from behind, I could almost convince myself that was how it was.
I allowed myself in that snapshot, to grasp what I wish had been.
And not what instead was.
Even though there are moments like that day where I do take a dip in the daydreams of what I desired, I don't dwell there.
While there are so very many things Matthew couldn't ever do with his brother, there were so very many more important things he learned from him instead.
Things I could have never taught him in the way that the life experience with Brandon has.
Humor. Yeah, anyone can laugh at their siblings. But can you laugh when the absurdity of a situation that should make you scream, makes you instead laugh?
Patience. Anyone can bang on the bathroom door of a sibling taking too long in the bathroom, but can you patiently learn how to sleep when Pajama's, I want my pajama's, is playing over and over and over, all night long in the next bedroom, all your life?
The list is long.
The values learned from the list even longer.
I always wonder about the "stuff" about Life with Autism that Matt hasn't told us over the years. The stress if it was too much at times, if he felt cheated of our attention, if he wanted opportunities other families had that we didn't.
But if those things affected him negatively, we never knew it.
I think maybe perhaps much like how the good we saw about God from Brandon made our lives as parents of a child with autism more a blessing than burden; it had that same effect in Matt's life.
Making the maturity he gained from realizing the big picture of life, more important than those other things that now seemed small and insignificant in comparison.
I like to hope that any emotion Brandon's life put on Matt's, wasn't pity - but rather the kind that would urge him to press on to better use his gifts and talents in honor of his brother.
I like to think that any peer pressure Matt faced was put into perspective in seeing how Brandon was often viewed by others.
That anything Matt ever thought was too hard and wanted to quit, --- that Brandon never had the option of quitting autism.
I like to think that for Matt heading into adulthood, having a brother who will be in perpetual childhood, will remind him to not take things so seriously.
To stop and jump on the trampoline just because.
To not ever think you're too old for Mickey Mouse.
That anything in the future Matt thinks he won't survive, --- to recall the past and all the very many things about autism we all together as a family -- have survived.
To spontaneously laugh at the memory of "nackaby alerts" in a wet, naked brother running from the tub to the kitchen.
Passing a living room of his friends on the way.
That whatever brotherhood autism took away, its blessings gave back ten-fold.
In that truly there was in both their lives, a friend who was closer than a brother.
Matt praying to God for his little brother, Brandon living out those qualities of God for his older brother.
All those things and more swirl in my mind when I see that picture of my two boys.
But the overriding emotion is that of God's awesomeness and sovereignty.
The picture I wanted would have fallen so short of what God gave.
I wanted children who were smart and who could succeed in the world.
God gave me two boys who together more than they ever could separately, have changed our corner of the world and how we see it.
How we live it.
Who have taught us there's so much more to life than academics & achievements.
Than profit and perfection.
God's sovereignty and awesomeness in that quite frankly boggles my mind.
But I'm human and will always see that picture as a longing of what could have been.
I'm also changed and will always be humbled by the picture that is.
And as far as how I see it, even though Matt will always live a life that is two steps ahead of Brandon; because of Brandon, he'll always know that the best parts of that life are lived and learned from those just one step behind.
And from the One who is closer than any typical brother could ever hope to be.
October 6, 2010
Because of Johnny Depp, yes of course. But more for Alice.
I've watched the movie four times now, each time so drawn to Alice in how she so emanates the things I struggle with in my own life.
I've never been one for the world's "stockings", "corsets", or "proper behaviors".
I've never been one to conform for the sake of conformity.
I've always believed in a God I couldn't see, that even though He wasn't in the flesh He could & does indeed talk, and that His word could make me grow taller spiritually.
But the most poignant thing in that movie to me, is where the Mad Hatter was talking to Alice about how she had lost her much-ness.
How she used to be much muchier.
I've found myself there, where it seems that in another world there was a picture of me slaying the jabberwocky.
Where I've become more the Mad Hatter slowly going mad frozen in time just waiting for it to thaw out and begin again.
For the past Alice - to once again be the present Alice.
For the much-ness, to once again be much.
Oh how I hate it when I've let the world do that to me. When I've let its doubts, detours, deception, & demons devour me!
I believe for me, my much-ness is God.
My belief that in my inconsistency, in my confusion, in my flawed thinking sometimes; that there is a God who is consistent, clear, and perfect.
That there is a God who can with His word that is sharper than a double-edged sword, slay any jabberwocky the world has to offer!
When I'm in the word and believing that, I better understand my much-ness in Christ.
When I'm further awed by the humbleness of that, I can realize even more how much more muchier my much-ness is!
I see that much-ness in so many of you in the autism/disability community, and it inspires me.
So many Christian counselors on the radio talk about how to make your marriage stronger by having regular date nights. What if you never get that chance?
So many Pastors on TV talk about how if you are good enough, give enough, or are faithful enough, you will have all that you desire. What if you are good, do give, and have the faith of a mustard seed, but still struggle?
I've read in books about the importance of communication in marriages. What if the circumstances absolutely do not allow that? What if life with a child with autism is a noise that cannot be turned down like a radio or turned off like a TV for that quiet time to talk?
I've heard in sermons the need to simplify. What if your life is complicated by circumstances so beyond your control, that doing that is desirable, yet not doable?
Recently I've watched a video testimony of a Pastor who wrote a Bible study I'm currently studying, share about how his, and others', faithful prayers have miraclously healed their child. What if your prayers are just as faithful and fervent, but you don't have that testimony?
I've let all those scenarios in my own life and more, cause me to lose my much-ness.
Where I've found my much-ness again, is in realizing the pure joy in knowing that God is still God even if my circumstances don't change.
My much-ness comes from the sheer grit & determination to keep my marriage a good marriage, despite many months at a time of not having a date night.
Our much-ness in marriage comes from my husband and I laughing hysterically that the most meaningful conversation we have most weeks, is arguing.
Our much-ness comes from knowing that because of our circumstances, we do live as simple a life as possible! When you can't go out or go do period, that's pretty much as simple as it gets!
Our much-ness comes from knowing that as much as we'd like to, we will not be able to slow down until we slide into heaven; bruised, stained, spent, half bonkers, and if we're lucky, - not mentally broken!
Our much-ness comes from knowing that even though we've prayed a million prayers for a miracle that hasn't happened, that it doesn't mean we haven't experienced a million of them we haven't been praying for.
I think that's why so many people get depressed.
They allow those things to steal their much-ness.
The world bombards them with the success stories. That if they believe this, dress like that, do this, achieve that -- that they can have everything.
That's the Red Queen. Lying, cheating, deceiving to gain power. You cannot have it all. You shouldn't even want it all, unless that all is God.
We need more White Queen's. People who patiently stand firm in the truth.
We need more Mad Hatter's telling more Alice's to just buck-up and realize or reclaim their much-ness!
We need more people's testimony being that yes I've done everything I know to do. I've tried everything I can reasonably try. I've prayed all the prayers I can pray. Yet my son still has autism. Still has seizures. And my God is still my God who can and does perform miracles.
He's still the God who can slay any jabberwocky, anytime.
That's how I've found my much-ness.
(Thank you Mad Hatter for telling this Alice through scripture, to believe in the much-ness of prayer that can slay any jabberwocky we are faced with....and that even if we can't slay it, we will be given the strength to keep fighting it.....)
Written by Michelle M. Guppy
October 1, 2010
I think the first time I saw the below translation for what it means, I just stared at the words across the top of her blog for what seemed like an hour....
Between the Sacred and Mundane
Something about those words captivated me, and I still don't know quite why.
I told Laura I was sure I would steal that title and use it as the title of one of my own blog entries one day.
I guess this is the day.
Maybe the reason I was so drawn to that name was/is, because the simplicity is so profound in how it describes the title of my own blog: "Life with Autism".
Definately from the diagnosis to this day in my life with autism, I have experienced both the sacred and mundane, as well as the whole spectrum in between.
Sacred in the pure holiness of being a part of my son's life. My son who has autism, seizures, and a host of challenges along with that.
I don't mean to for an instant compare my son to the holiness of the God. But I very much mean to imply that I know that I am in the presence of purity and innocent perfection in that son.
And it has been a very sacred experience.
So very many times in this journey I've experienced that sacredness, but each time much like my son's seizures, is like the very first.
And it amazes me.
Amazes me in how quickly I forget just how amazing God and His sacredness, is.
So much so, that it is like the first time each time.
Lately that has been proven again in this round of trials and other issues unrelated to autism.
The seizures, going to the ER, the hospital stay, back home more seizures, more calls, more questions.... Family situations that are too big for us but not too big for God.....
All of it bringing me once again to that sacred place where my Savior dwells.
Where there is no autism, no seizures, no trials.
Where there is only perfection.
That place far, far, far, from the mundane where my problems and my imperfections lie in comparison.
That place far from being fed up with the futility of fretting over things I cannot change.
That place far from the insignificance I feel in comparison to those with careers and credits after their name.
That place far from having security in my savings account, or in anything tangible the world has to offer.
Sometimes I forget that.
That sacred place where God dwells and what it means in my life.
Sometimes I get stuck there, between the sacredness of God and mundaneness I allow myself to make of things.
(I mean really, how mundane is your life when your facebook status shares how excited you were to get more of your son's pee in the cup than on your feet, face, or body?)
I do though, like to think my life is humorously mundane.
That's better than just plain mundane, right?
Even as I type these rambling thoughts, I am again struck by that title:
Between the sacred and mundane...
I like that.
It gives this scarlet sister some hope!
To each and every day make the mundane, sacred.
Take who the world calls insignificant, and do all that you can to show the world their significance.
Take who the world throws away as trash, and polish them as a jewel.
Use your hands, feet, voice, gifts, words, - to serve.
Even if you must do the same thing day in and day out, do it with the sacredness and servanthood as Jesus did when he washed with his own holy hands, the filthiest of feets.
Do it with the compassion of Christ as he healed the lepers of the world.
Even if you must fight a losing battle, fight it with the preserverance of the man who didn't let even his own death on the cross stop him.
I guess I was remembering more the mundane and not the sacred the other day on the way to taking Brandon to the medical center. Again.
There's a place going downtown, where all 6 lanes sorta go up a 'hill' and on the horizon looking forward, what catches your attention is a huge billboard that simply says "God Listens".
As I was driving I saw that and glaced at all the lanes of cars beside and before me, all going the same direction, all filled with people who have their own trials and challenges.
I wondered what they were thinking.
If they were simply driving in the mundane traffic, going to a mundane job, just to mundanely do it all over again in the morning.
If they knew when they too see that sign, that God indeed, does listen!
That God can take their mundane, and make it sacred.
I wondered if there was any sacred in their life.
I was reminded of the sacredness in my own life.
I just can't imagine if it wasn't there to keep the mundaneness from becoming manic madness.
To keep me grounded, focused, & purposeful as I live life with autism between the sacred and mundane.
Humorously mundane that is.
I gotta have the humor....
Thank you Laura....
September 17, 2010
August 26, 2010
I'm sure it's a morbid thought that I shouldn't share...but each time Brandon has a grand mal seizure, I think of what I would miss most about him if he were not to live through it.
I mean, other than praying, there's not much else one can do while watching your child shake and tremble and choke uncontrollably while their lips turn blue and their face goes pale during those 1-4 minutes that seem more like 1-4 lifetimes. It is the most horrific thing that I've experienced as the mother of a son with autism. Those seizures. Those blasted seizures that make the thousandth one seem like the first. Those seizures that you think after the thousandth one you would handle it like a veteran, but you don't. You're still a scared, shaking rookie who wants nothing more than to scream "Uncle!".
Or like I do, panic and dial 911.
That's how I felt this morning after Brandon's second seizure in less than 12 hours.
Plans for the day replaced with laying beside a peaceful boy as he sleeps it off.
New plans made for following him like a hawk once he was up and slowly moving about.
And doing that, is when I found the cup in the picture above.
The cup my husband and I often see perched about our house at unexpected times, perfectly balanced in unexpected places.
Todd and I share that smile of understanding that only we can know, when it comes to that cup and the places it's been periously perched.
Always half full of something in it he's drinking.
Always perfectly balanced.
Just carefully set atop whatever he was by when he was done drinking it... On the corner of the couch, the one inch ledge of the TV, the corner of his bed on the blankets, the table saw in the garage, the pool rail out back....
This child who cannot read, write, or talk, but who can perfectly balance a half-full cup on a pillow.
Whenever we see the cup, we cannot help but smile. That amidst the chaos and confusion of our household, among the challenges and obstacles we face in our life with autism -- that something as simple as a perfectly balanced cup can make us smile and remind us of God.
That like Brandon's blue cup, He's there where we least expect to find Him.
I think that why seeing that cup so unexpectedly makes me smile, is because sometimes it is hard to see God's blessings when we're going through trials and tribulations. It is hard to focus on the obvious... That God is there and He does know what we're going through and that we aren't alone.
That's why I think that Brandon's blue cup is one thing I would miss most about him should a seizure take him from me one day.
That reminder just for us that such a seemingly imperfect child could do something so perfectly.
That when we're having a day where we just want to cry, we find that cup somewhere and just start to laugh.
The lesson he teaches us in how when it comes to God, we should always expect the unexpected! We should always expect to find miracles in the darkest valley. Peace among chaos. Beauty in the sometimes ugliness of life.
I watch him wander around the house like he is now, still a bit groggy, but wanting to just do and be despite what he's just gone through; and I can't help but just smile at how God uses this simple sweet little boy to bring such unexpected joy in my life!
I smile at how God uses Brandon and a blue cup to remind me of how He perfectly balances the scale of hardships with so very many blessings.
Now if only I could find a way to have each seizure he has take off five pounds of fat instead of five years of life, I'd be good to go........