My letter to satan.... shared for anyone struggling against the unfairness of the world, doubting in God....
The Letter….
By Michelle M. Guppy - 2002
satan,
I feel as if a battle is going on - with you trying to weave your way into our lives to bring pain and illness.
I must admit, you WILL stoop to any level, the lower the better.
You know you can’t win by hitting my husband and I directly - so you choose to go through that which is most precious to us - our innocent child who already is burdened with a disability, autism.
To have him now develop seizures as well, and to cause us to question or abandon our belief in God and how He could allow this to happen....
You are attempting to use our precious son to harden our hearts and turn our light, into the darkness where you reside.
I recommend you stop.
Save yourself the hassle.
We will not let you win.
You have recently caused us to bend, and break, ---that is true. But not in the way you sought to.
You have bent us to our knees - in prayer. In perhaps the most powerful prayers we have ever prayed. Each one of us: my husband as he bent over his son during his first Grand Mal Seizure a few weeks ago. Breaking the barrier of pride, --he laid his hands over his son’s trembling body - calling out to God in tears, like never before. My other son, making his prayers at night for his little brother more mature, heartfelt, and genuine, than I have ever heard before.
And me - perhaps you have bent me the most - and I am thankful for that. For if it weren’t for my son’s recent seizures - I would not have the sense of God’s Peace and Provision that I now have. I would not have finally given up on what I could do for him, and instead turn to God completely for what HE could do for him and through him…..
Before all this - I would play a tug of war game with God.
Letting God have control of some things, and me keeping control of other things.
I’m sure you were rooting for me to win; knowing that was your best chance of victory.
You know you can't defeat God, but you could possibly defeat me.
I am thankful, that I finally just gave up and let go of the rope.
Giving God all the control, not me. And most certainly, not you. By letting go of the rope, I chose to trust God completely to catch me when I fall; and to pick my son back up after he has fallen. Giving up control in that way is not defeat. It is victory, because I gave the control and power to someone far greater than I. Someone far stronger than even you. So don’t think you won because I surrendered. I did win, because I have surrendered to God; in knowing that God’s wisdom and strength and timing is greater than mine.
Because we have bent so deeply in prayer - any barriers that have previously stood in our way of a pure and worshipful relationship with God - have been truly broken. Through our brokenness - we have come to truly believe that God is our Healer. Through the brokenness in our son’s bone during one of many seizures, we have learned the blessing of brokenness in the physical body; - in that broken bones heal to be stronger than before.
And so too, with our Spirit. Each time the meanness, ugliness, and pain of this world breaks our Spirit, God’s healing and redemptive spirit is there to give us a faith stronger than ever before.
I am thankful for that.
You have caused many tears.
Tears of pain and hurt - but again - even in that, you have not won. For after the rain - there is a rainbow. The reminder of God’s promise to His people, of renewal and restoration. Each time I weep - it releases the flood of pain and hurt that the world can bring. But then after the tears, I feel new Hope, and the Promise of a New Day Dawning.
Before this recent battle started, you did actually start to create a spirit of ungratefulness in us.
But even that cannot be credited as a victory for you.
Because now, since my son’s seizure disorder along with his other disabilities, we appreciate those little miracles and blessings like never before. Things we took for granted, we do not anymore. Each smile… Each sound of laughter…. Each new skill…. Each new day… We now cherish them all….
You may still be thinking you are winning in that we have no answers as to why these seizures are happening to our precious child, or when or if they will end.
But still, you are wrong.
Perhaps God simply wants us to know that Jesus is the answer.
The only answer we need to know.
Not in that He has brought this pain and suffering to our child - but that through this pain and suffering - we come to see God’s pure and perfect purpose – and draw closer to Him in the process.
You may have hoped to create doubt - in that God somehow broke his promise and is not there with us - and continues to let our son be hurt. Wrong again. Jesus did not promise life would always be easy. But He did promise that He would see us through each and every trial. He promised that through our suffering He will draw us close and hold us near.
Our son's blood that was shed as a result of some of the seizures that caused him to fall, is like the blood Jesus shed on the cross.
My son’s blood served to reinforce in me the covenant promise that Jesus will never leave or forsake us.
And He hasn’t.
Jesus has carried us through, and continues to carry us through, by the hugs, phone calls, prayers, and support of others.
You may have started to create disillusionment in me by these ongoing trials of late as I wondered just how much more pain my son, or me as his mother, would have to endure…
But even then, your plan failed. Jesus’ journey to the cross was full of pain and suffering, yes. A journey so full of pain it is beyond comprehension. It was hard for Mary, his mother, to watch him go through that. But I believe that as she did then, I now, cling to the hope and eternal peace that the journey symbolized.
Perhaps you thought you would pull the ultimate straw - in causing something to break in my son that could not be stitched back together or healed stronger than before it was broken -- in causing him to fall so hard during a seizure that he would shatter his permanent teeth.
I'm sure you pride yourself in knowing that very thing was our greatest fear --- it was what we prayed hardest for to not happen.
Such a trivial thing we know – but for us, our son’s smile was brighter than the stars….
When he smiled – the world stopped - and his disabilities were gone – and he was just our little boy.
Our little boy with the beautiful smile.
We prayed that at least his smile, those sparkling white teeth, would be spared from the injuries the seizures bring……
That he would have just that one part of his body – his smile - not affected.....
But God proved once again that he is bigger than any obstacle we may face, deeper than any pit we think we have fallen in, and more powerful than the greatest fear we have. Even if the most horrible thing we think can happen – happens – God is still there. We now believe that.
We have surrendered our son to God.
There is nothing more you can ever do to try and change that.
He is God’s – and you will never have him, and so you will never win.
Even on the day I found my son in the back yard, eyes fixed, body unresponsive, not breathing, and thought he had died during yet another seizure --- I was at peace.
At peace with the knowledge that my son’s name was forever written in the Lamb’s Book of Life, and not in your book of death……
And so during that time of panic and confusion and trying to revive my son – I knew that even in death, the victory would not be yours --- because for a child of God ---- death is not the end. It is merely a stepping stone on the path to eternity. It is the fulfillment of God’s purpose for us to reign in heaven with Him.
But, God said no, it’s not his time yet --
You have failed again.
4/8/02 by Michelle M. Guppy
December 29, 2009
I am.... for Mother's of Children with Special Needs
A Mother's Day Card,
written by Michelle M. Guppy
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I am………for mothers of Children who have autism or other disabilities.
I am…….
I am the little engine that did. When on my journey in life, my tracks led me to a mountain - a diagnosis of (child’s disability) - I looked at it with defeat - thinking there was no way I could climb over it. I then pondered the obstacle before me, and I then said to myself over and over, "I think I can, I think I can...," then I slowly started climbing the mountain saying to myself over and over, "I know I can, I know I can,...." and then I made it over that ominous diagnosis and continued my journey. I am the little engine that did.
I am more devoted than Noah’s wife. I sometimes feel overwhelmed in my “houseboat” -- 365 days and 365 nights a year, constantly working with and teaching my child. But when the storms of isolation and monotony become most unbearable, I do not jump ship. Instead I wait for the rainbow that is promised to come.
I am Xena. Real life warrior goddess of (child’s disability). With my steel plated armor I can battle anyone who gets in the way of progress for my child. I can overcome the stares and ignorance of those without a disability in their lives - and educate them as to why my child is the way he is, and why he does the things he does. With my sword of persistence, I can battle the schools to have them properly educate my child. Yes, I am Xena - and I am prepared for any battle that might come my way……
I am beautiful. I have hairy legs because I get no time alone in the bathroom, and bags under my eyes from staying up all night with my child. The only exercise I get is the sprint from my house to my car - to take my child to therapy. Dressed up to me is, well - just that I had a moment to get dressed! They say that beauty is in the eye of the beholder - and so even on the days when I don't feel very beautiful - I will know that I am…….. because God is my beholder.
I am the Bionic Woman. With my bionic vision - I can see through the disability my child has, and see the beauty in his soul, the intelligence in his eyes --- when others can't. I have bionic hearing - I can look at my child when he smiles at me, and hear his voice say, “I Love You Mommy,” --- even though he can’t talk. Yes, I am thankful to be Bionic.
I am Mary. A not so well known mother of a Special Needs child who was brought here to touch the souls of those around him, in a way that will forever change them. And it started with me. By teaching me things I would never have known, by bringing me friendships I never would have had, and by opening my eyes as to what really matters in life. Things like the Joy of just living in the moment, the Peace of knowing that God is in control, never losing Hope, and knowing an unconditional Love that that words cannot express. Yes, I too am blessed by a special child, just like Mary.
I am Superwoman. I am able to leap over tall loads of laundry in a single bound, and run faster than a speeding bullet, to rescue my child from danger. Oh yes, without a doubt, I am Superwoman.
I am Moses. I was chosen to be the mother of a Special Needs Child. I may at times question whether I am the right "man" for the job ---but God will give me the Faith I need to lead my child to be the best he can be. And like Moses, God will give me the small Miracles here and there, needed to accomplish my mission.
I am Stretch Armstrong – a mom that can be stretched beyond belief – and still somehow return to normal. I can stretch limited funds to cover every treatment and therapy that insurance won't. I can stretch my patience as I bounce from doctor to doctor in a quest to treat my child. I can stretch what time I have, and share it with my husband, my children, my church, and still have some leftover to help my friends. Yes, my name is Stretch. And I have the stretch-marks to prove it!
I am Rosa Parks. I refuse to move or waver in what I believe is right for my child --simply because my view is the minority, not the majority. I refuse to believe "What can one mother do?" But instead, I will write, call, and rally to the government if I have to, and do whatever it takes to prevent discrimination against my child and ensure that he gets the services he needs.
I am Hercules. The Greek god known for strength and courage. The heavy loads I must carry would make others crumble to the ground. The weight of Sorrow, Fear at uncertainty of the future, Injustice at having no answers, and the Tears of despair, would alone possibly be too much, --- even for Hercules. But then the Joy, Laughter, Smiles, and Pride, - at my child's accomplishments, - balance the load to make it easy to bear.
I am touched by an Angel. An Angel who lives in a world of his own. And it’s true. He lives in a world of innocence and purity. A world without hatred or deceit. A world where everyone is beautiful and where no-one is ugly. A world where there is always enough time. A world where he goes to bed with no worries of tomorrow and wakes up with no regrets of the past. Yes, I most certainly am touched by an Angel, and in some ways, his world is better….
I am a true "Survivor" - the mom of a child, who has faced, is facing, and will face, --some of the most difficult challenges life has to offer. I am ready for the challenge and have God given endurance to last until the end, -- along with a sense of humor to cope with all the twists, turns, and surprises along the way. Oh yes, I am a TRUE "Survivor" - and I don't need to win a million dollars to prove it!!!
I am the mom of a child with a disability, all the above, and so much more. Some days I will want to be none of the above – and just be a typical mom with a typical child, doing typical things. On those days I will know it’s o.k. to be angry, and to cry, and to lean on my family, friends, and church, for support. Because after all, ---the most important thing I am, ….. is human.
**** And on this day, and any other day I need to, I will read this as a reminder, of just who it is, I am………
c. May 2000 By Michelle M. Guppy – A Mother's Day card I wrote that was inspired by Mothers of children with autism I have met on my journey - and dedicated to all such mothers everywhere…….
Please contact MichelleMGuppy@yahoo.com for permission to forward or distribute or publish.
written by Michelle M. Guppy
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I am………for mothers of Children who have autism or other disabilities.
I am…….
I am the little engine that did. When on my journey in life, my tracks led me to a mountain - a diagnosis of (child’s disability) - I looked at it with defeat - thinking there was no way I could climb over it. I then pondered the obstacle before me, and I then said to myself over and over, "I think I can, I think I can...," then I slowly started climbing the mountain saying to myself over and over, "I know I can, I know I can,...." and then I made it over that ominous diagnosis and continued my journey. I am the little engine that did.
I am more devoted than Noah’s wife. I sometimes feel overwhelmed in my “houseboat” -- 365 days and 365 nights a year, constantly working with and teaching my child. But when the storms of isolation and monotony become most unbearable, I do not jump ship. Instead I wait for the rainbow that is promised to come.
I am Xena. Real life warrior goddess of (child’s disability). With my steel plated armor I can battle anyone who gets in the way of progress for my child. I can overcome the stares and ignorance of those without a disability in their lives - and educate them as to why my child is the way he is, and why he does the things he does. With my sword of persistence, I can battle the schools to have them properly educate my child. Yes, I am Xena - and I am prepared for any battle that might come my way……
I am beautiful. I have hairy legs because I get no time alone in the bathroom, and bags under my eyes from staying up all night with my child. The only exercise I get is the sprint from my house to my car - to take my child to therapy. Dressed up to me is, well - just that I had a moment to get dressed! They say that beauty is in the eye of the beholder - and so even on the days when I don't feel very beautiful - I will know that I am…….. because God is my beholder.
I am the Bionic Woman. With my bionic vision - I can see through the disability my child has, and see the beauty in his soul, the intelligence in his eyes --- when others can't. I have bionic hearing - I can look at my child when he smiles at me, and hear his voice say, “I Love You Mommy,” --- even though he can’t talk. Yes, I am thankful to be Bionic.
I am Mary. A not so well known mother of a Special Needs child who was brought here to touch the souls of those around him, in a way that will forever change them. And it started with me. By teaching me things I would never have known, by bringing me friendships I never would have had, and by opening my eyes as to what really matters in life. Things like the Joy of just living in the moment, the Peace of knowing that God is in control, never losing Hope, and knowing an unconditional Love that that words cannot express. Yes, I too am blessed by a special child, just like Mary.
I am Superwoman. I am able to leap over tall loads of laundry in a single bound, and run faster than a speeding bullet, to rescue my child from danger. Oh yes, without a doubt, I am Superwoman.
I am Moses. I was chosen to be the mother of a Special Needs Child. I may at times question whether I am the right "man" for the job ---but God will give me the Faith I need to lead my child to be the best he can be. And like Moses, God will give me the small Miracles here and there, needed to accomplish my mission.
I am Stretch Armstrong – a mom that can be stretched beyond belief – and still somehow return to normal. I can stretch limited funds to cover every treatment and therapy that insurance won't. I can stretch my patience as I bounce from doctor to doctor in a quest to treat my child. I can stretch what time I have, and share it with my husband, my children, my church, and still have some leftover to help my friends. Yes, my name is Stretch. And I have the stretch-marks to prove it!
I am Rosa Parks. I refuse to move or waver in what I believe is right for my child --simply because my view is the minority, not the majority. I refuse to believe "What can one mother do?" But instead, I will write, call, and rally to the government if I have to, and do whatever it takes to prevent discrimination against my child and ensure that he gets the services he needs.
I am Hercules. The Greek god known for strength and courage. The heavy loads I must carry would make others crumble to the ground. The weight of Sorrow, Fear at uncertainty of the future, Injustice at having no answers, and the Tears of despair, would alone possibly be too much, --- even for Hercules. But then the Joy, Laughter, Smiles, and Pride, - at my child's accomplishments, - balance the load to make it easy to bear.
I am touched by an Angel. An Angel who lives in a world of his own. And it’s true. He lives in a world of innocence and purity. A world without hatred or deceit. A world where everyone is beautiful and where no-one is ugly. A world where there is always enough time. A world where he goes to bed with no worries of tomorrow and wakes up with no regrets of the past. Yes, I most certainly am touched by an Angel, and in some ways, his world is better….
I am a true "Survivor" - the mom of a child, who has faced, is facing, and will face, --some of the most difficult challenges life has to offer. I am ready for the challenge and have God given endurance to last until the end, -- along with a sense of humor to cope with all the twists, turns, and surprises along the way. Oh yes, I am a TRUE "Survivor" - and I don't need to win a million dollars to prove it!!!
I am the mom of a child with a disability, all the above, and so much more. Some days I will want to be none of the above – and just be a typical mom with a typical child, doing typical things. On those days I will know it’s o.k. to be angry, and to cry, and to lean on my family, friends, and church, for support. Because after all, ---the most important thing I am, ….. is human.
**** And on this day, and any other day I need to, I will read this as a reminder, of just who it is, I am………
c. May 2000 By Michelle M. Guppy – A Mother's Day card I wrote that was inspired by Mothers of children with autism I have met on my journey - and dedicated to all such mothers everywhere…….
Please contact MichelleMGuppy@yahoo.com for permission to forward or distribute or publish.
My Mother's Day Musings...
A tour through my autism war museum....
The thought for writing this started with this subject line in an e-mail from my mother, to me:
“One Regret”
Now, being the sassy little thing I am at times, my first reaction was to hit reply and start typing to her, “Only ONE????” (smile)
I could think of so many she should have!
For starters, making me go the grocery store with her wearing her bright pink rollers!
Other things worthy of regret would be converse sneakers, my little brother, - and need I go there about the ‘spit combing’ of a stray hair on the way to school?
Her e-mail was very honest and sentimental, saying that she regretted that we did not have a better relationship, that we were not as close as perhaps we could be…
I thought about that a lot, about why that was, especially with Mother’s Day coming up….
I suppose that if this crazy life I have with autism were considered a war, which in many ways it really is, - that for me, and probably many others like me, one of the casualties of that war would be those things we’ve had to sacrifice in the process of surviving and saving our sanity, so we could have the strength to march on each day to help our child, care for our family, battle insurance, schools, society, mainstream medicine, government agencies, legislation, and etc, etc, etc….
I don’t know, - those who say ‘you can have it all’ and ‘do it all’ – must be far greater ‘at it all’ than I am, - because I’ve had to sacrifice many things just to some days ‘get through it all’….
For me those ‘casualties of the autism war’ are obviously a not-so-carefree relationship with my own mother, simply because our worlds are so different, our interests and topics of discussion sometimes as far apart as they could possibly be.
When she comes to visit, I selfishly see it as ‘the reserves’ coming in and a chance to go in my room and read the book that’s been gathering dust for months. She sees it as an opportunity to go shopping together and talking about things outside of autism, as if for me there is anything outside of autism!
And they are the fact that outside of the hundreds of autism friends I know all over the country that I could call on in an instant for anything autism-related, - I have no typical friends right here to go to coffee with or on a “girls night out” with.
No, somehow when I was busy with leaky-gut, lending a hand to newly recruited autism moms, and being involved in autism legislation -- that whole “typical” world slowly slipped away in the very name of autism.
That is not to say my life is a sad, depressing journey down pity lane!
Quite the opposite!
It’s been a colorful life of many blessings, much happiness, and abounding joy….as well as a rather interesting life in need of some….. editing.
The wonderful carefree days of being a mom to two little boys in matching Barney pajamas making painted handprints on the play-room wall; - but then editing out the parts where I've cried for 2 hours straight until I could cry no more and simply wanted to not even breathe anymore because it hurt so bad when the youngest of them retreated into a world of his own and was diagnosed with autism.
During that time, as I type this I can’t so much remember a whole lot of “good times” per say, as we were living in a blur of more questions than answers with no family or church support nearby to help us.
It was rather a period of life that was very much a time of sensing God’s presence in a powerful way, as it was a period I would definitely like to have had erased and not happen at all.
But, God apparently didn’t ask my opinion on that!
Damm him!
(sorry, edit that.....)
The snapshot that (ouch) stands out most though, is the one where after being from doctor to doctor with no answers, and finally to one who had the bright idea for me to keep myself and my son up all night for an EEG the next day – and I went through all that and once at the hospital got lost and eventually came to a white-haired volunteer lady who sweetly asked, “Can I help you” – and I answered her in an extremely loud sleep-deprived frazzled voice, “YES! Where the F*&#@ is radiology?”
Yeah that, her stunned silencer, and my mom’s horrified look, were moments to definitely edit!
Bittersweet memories of that time are in looking at the pictures of my son in his full face-shield helmet to protect him from the horrible, uncontrollable seizures he started to have.
As much as I would love to also erase that time-frame permanently from my memory, I know that it was a turning point that I will never forget.
It was when I truly saw my son as the warrior he is, and understood that he was being watched over by a warrior mightier and wiser than I - and that even though I didn't understand the thinking behind His battle-plan, I knew somehow that it would be a victorious one if I would trust Him.
And I think for us as a family, all that may have been lost over the years in both of us as parents not being able to be with our typical son at the same time for a swim meet or track meet or really do anything else typically for that matter --- was gained in the new perspective each of us realized about what does matter in life.
My husband’s words are as fresh to me now as they were years ago when he said them on our first, and last, family vacation that involved a plane trip cross-country. It was a bad mistake to try and force what we wanted for our son in being included in our family vacation, on what our son with autism was actually able to handle at that time. In between his sensory overload meltdowns, and our misery, my husband looked at me with love and determination, and pledged that we would get through this, together.
And we have been ever since.
And no one more so than my typical son.
Who despite the chaos in our lives, managed to develop a beyond-his-years maturity in many ways because of our simplicity.
As a T-ball player with the vocabulary of an adult, he stuck up for why his little brother was acting the way he was by telling his team-mates that, “He has autism. He is in a preschool program for children with disabilities and his brain does not work in the same way yours and mine does”.
As a young child his prayers at night for things he wanted, turned into prayers for his little brother and for his parents to be able to afford to buy a cure for his autism.
And even today in High School, in his compassion in spending a Friday night with a friend who seems to be a bit different than others, and who doesn’t have a lot of friends at all because of that. And him coming home and telling me that he doesn’t understand why people don’t like him, that he is one of the nicest people he knows.
He went on to say that he couldn’t stand how others made fun of him and how he wants to punch out anyone at school who does!
(If he did that, I don’t think I would edit that. That would definitely be a keeper even though as a responsible parent I’m not supposed to endorse that…but secretly know that there were a few people I would have liked to edit in, that I punched out! --- ah - nevermind - better edit this whole thought too!)
All of that makes me think that all the ‘normal-ness’ of a typical sibling life would not have taught him near the life lessons he learned ‘hands-on’ over the years.
You can’t teach compassion, tolerance, patience, and acceptance.
You must live or experience all those things – as my son has.
You can't teach how 'laughter is the best medicine' until you've personally had nothing left to do but laugh so hard that your sides hurt - at the absurdity of some of the situations we've been in!
Yes, our favorite family motto is: No one would ever believe this stuff if we told them!
And you can’t teach someone how to overcome adversity, that is something they have to experience, and overcome, - personally.
So yes, many typical family life things were lost, but so very many more extraordinary perspectives on life were gained!
But you know – as much as there were parts to edit, many, many parts to edit, - those not so glamorous or glorious snapshots of the past should not be forgotten.
They shouldn't be hidden from the museum shelves or walls just because they aren't "perfectly polished or poised".
Put into perspective, yes, - but they are as much a part of who I’ve become, who each of us in my family have become, as all the good things were that we proudly display are.
The further down deep into your soul that you have to dig to cope and to overcome, the deeper you become as a person.
And for the mere16.5 years now that I’ve been a mother, for 14 of them I’ve had to dig pretty darn deep as a fellow warrior mom who is part of a large platoon of other warrior moms of children of autism and other disabilities, who have been challenged and tested and stretched beyond belief in ways no mom should ever have to be.
However, I do have a long way to go still, as the mom of a typical son, autistic son, wife, daughter, sister-in-law, cousin, friend, and in maturity as a Christian….
If one was looking for a perfect mom, they would have had to look well past me.
If one was looking for the perfect wife, - well, if ‘no-time’ and ‘not-now’ was your standard, then I would be her.
If one was looking at me to see who God is, then at times they would come away thinking God was an imperfect short-tempered little thing whose language in those early days, occasionally needed to be, – edited.
No, my battle plan in this journey has been far from perfect, but it has led me to know and depend on in a very personal way, the only one who is.
My Savior, Jesus Christ.
Through me, what you could learn about Him, is His grace, His mercy, His forgiveness, His unconditional love, and thankfully for me, - HIS patience.
I suppose in ending the tour of my Mother’s Day war museum, you could simply say that my life as a mom thus far has been many things that I’m proud of, and many things that I’m not so proud of….
But what I think I’m most proud of, is that above all, it has been real…
I’ve lived, loved, laughed, learned; and through it all, - survived.
No, - edit that...
Thrived.
~~~~~~~~~~
This Mother’s Day take a tour your own memories…
Re-live all the good times and victories, laugh as you edit the bad times, - and for the ugly times, - well, stand there just long enough to realize how far you’ve come then move on, - don’t stay there and stare…
Written by Michelle M. Guppy
The thought for writing this started with this subject line in an e-mail from my mother, to me:
“One Regret”
Now, being the sassy little thing I am at times, my first reaction was to hit reply and start typing to her, “Only ONE????” (smile)
I could think of so many she should have!
For starters, making me go the grocery store with her wearing her bright pink rollers!
Other things worthy of regret would be converse sneakers, my little brother, - and need I go there about the ‘spit combing’ of a stray hair on the way to school?
Her e-mail was very honest and sentimental, saying that she regretted that we did not have a better relationship, that we were not as close as perhaps we could be…
I thought about that a lot, about why that was, especially with Mother’s Day coming up….
I suppose that if this crazy life I have with autism were considered a war, which in many ways it really is, - that for me, and probably many others like me, one of the casualties of that war would be those things we’ve had to sacrifice in the process of surviving and saving our sanity, so we could have the strength to march on each day to help our child, care for our family, battle insurance, schools, society, mainstream medicine, government agencies, legislation, and etc, etc, etc….
I don’t know, - those who say ‘you can have it all’ and ‘do it all’ – must be far greater ‘at it all’ than I am, - because I’ve had to sacrifice many things just to some days ‘get through it all’….
For me those ‘casualties of the autism war’ are obviously a not-so-carefree relationship with my own mother, simply because our worlds are so different, our interests and topics of discussion sometimes as far apart as they could possibly be.
When she comes to visit, I selfishly see it as ‘the reserves’ coming in and a chance to go in my room and read the book that’s been gathering dust for months. She sees it as an opportunity to go shopping together and talking about things outside of autism, as if for me there is anything outside of autism!
And they are the fact that outside of the hundreds of autism friends I know all over the country that I could call on in an instant for anything autism-related, - I have no typical friends right here to go to coffee with or on a “girls night out” with.
No, somehow when I was busy with leaky-gut, lending a hand to newly recruited autism moms, and being involved in autism legislation -- that whole “typical” world slowly slipped away in the very name of autism.
That is not to say my life is a sad, depressing journey down pity lane!
Quite the opposite!
It’s been a colorful life of many blessings, much happiness, and abounding joy….as well as a rather interesting life in need of some….. editing.
The wonderful carefree days of being a mom to two little boys in matching Barney pajamas making painted handprints on the play-room wall; - but then editing out the parts where I've cried for 2 hours straight until I could cry no more and simply wanted to not even breathe anymore because it hurt so bad when the youngest of them retreated into a world of his own and was diagnosed with autism.
During that time, as I type this I can’t so much remember a whole lot of “good times” per say, as we were living in a blur of more questions than answers with no family or church support nearby to help us.
It was rather a period of life that was very much a time of sensing God’s presence in a powerful way, as it was a period I would definitely like to have had erased and not happen at all.
But, God apparently didn’t ask my opinion on that!
Damm him!
(sorry, edit that.....)
The snapshot that (ouch) stands out most though, is the one where after being from doctor to doctor with no answers, and finally to one who had the bright idea for me to keep myself and my son up all night for an EEG the next day – and I went through all that and once at the hospital got lost and eventually came to a white-haired volunteer lady who sweetly asked, “Can I help you” – and I answered her in an extremely loud sleep-deprived frazzled voice, “YES! Where the F*&#@ is radiology?”
Yeah that, her stunned silencer, and my mom’s horrified look, were moments to definitely edit!
Bittersweet memories of that time are in looking at the pictures of my son in his full face-shield helmet to protect him from the horrible, uncontrollable seizures he started to have.
As much as I would love to also erase that time-frame permanently from my memory, I know that it was a turning point that I will never forget.
It was when I truly saw my son as the warrior he is, and understood that he was being watched over by a warrior mightier and wiser than I - and that even though I didn't understand the thinking behind His battle-plan, I knew somehow that it would be a victorious one if I would trust Him.
And I think for us as a family, all that may have been lost over the years in both of us as parents not being able to be with our typical son at the same time for a swim meet or track meet or really do anything else typically for that matter --- was gained in the new perspective each of us realized about what does matter in life.
My husband’s words are as fresh to me now as they were years ago when he said them on our first, and last, family vacation that involved a plane trip cross-country. It was a bad mistake to try and force what we wanted for our son in being included in our family vacation, on what our son with autism was actually able to handle at that time. In between his sensory overload meltdowns, and our misery, my husband looked at me with love and determination, and pledged that we would get through this, together.
And we have been ever since.
And no one more so than my typical son.
Who despite the chaos in our lives, managed to develop a beyond-his-years maturity in many ways because of our simplicity.
As a T-ball player with the vocabulary of an adult, he stuck up for why his little brother was acting the way he was by telling his team-mates that, “He has autism. He is in a preschool program for children with disabilities and his brain does not work in the same way yours and mine does”.
As a young child his prayers at night for things he wanted, turned into prayers for his little brother and for his parents to be able to afford to buy a cure for his autism.
And even today in High School, in his compassion in spending a Friday night with a friend who seems to be a bit different than others, and who doesn’t have a lot of friends at all because of that. And him coming home and telling me that he doesn’t understand why people don’t like him, that he is one of the nicest people he knows.
He went on to say that he couldn’t stand how others made fun of him and how he wants to punch out anyone at school who does!
(If he did that, I don’t think I would edit that. That would definitely be a keeper even though as a responsible parent I’m not supposed to endorse that…but secretly know that there were a few people I would have liked to edit in, that I punched out! --- ah - nevermind - better edit this whole thought too!)
All of that makes me think that all the ‘normal-ness’ of a typical sibling life would not have taught him near the life lessons he learned ‘hands-on’ over the years.
You can’t teach compassion, tolerance, patience, and acceptance.
You must live or experience all those things – as my son has.
You can't teach how 'laughter is the best medicine' until you've personally had nothing left to do but laugh so hard that your sides hurt - at the absurdity of some of the situations we've been in!
Yes, our favorite family motto is: No one would ever believe this stuff if we told them!
And you can’t teach someone how to overcome adversity, that is something they have to experience, and overcome, - personally.
So yes, many typical family life things were lost, but so very many more extraordinary perspectives on life were gained!
But you know – as much as there were parts to edit, many, many parts to edit, - those not so glamorous or glorious snapshots of the past should not be forgotten.
They shouldn't be hidden from the museum shelves or walls just because they aren't "perfectly polished or poised".
Put into perspective, yes, - but they are as much a part of who I’ve become, who each of us in my family have become, as all the good things were that we proudly display are.
The further down deep into your soul that you have to dig to cope and to overcome, the deeper you become as a person.
And for the mere16.5 years now that I’ve been a mother, for 14 of them I’ve had to dig pretty darn deep as a fellow warrior mom who is part of a large platoon of other warrior moms of children of autism and other disabilities, who have been challenged and tested and stretched beyond belief in ways no mom should ever have to be.
However, I do have a long way to go still, as the mom of a typical son, autistic son, wife, daughter, sister-in-law, cousin, friend, and in maturity as a Christian….
If one was looking for a perfect mom, they would have had to look well past me.
If one was looking for the perfect wife, - well, if ‘no-time’ and ‘not-now’ was your standard, then I would be her.
If one was looking at me to see who God is, then at times they would come away thinking God was an imperfect short-tempered little thing whose language in those early days, occasionally needed to be, – edited.
No, my battle plan in this journey has been far from perfect, but it has led me to know and depend on in a very personal way, the only one who is.
My Savior, Jesus Christ.
Through me, what you could learn about Him, is His grace, His mercy, His forgiveness, His unconditional love, and thankfully for me, - HIS patience.
I suppose in ending the tour of my Mother’s Day war museum, you could simply say that my life as a mom thus far has been many things that I’m proud of, and many things that I’m not so proud of….
But what I think I’m most proud of, is that above all, it has been real…
I’ve lived, loved, laughed, learned; and through it all, - survived.
No, - edit that...
Thrived.
~~~~~~~~~~
This Mother’s Day take a tour your own memories…
Re-live all the good times and victories, laugh as you edit the bad times, - and for the ugly times, - well, stand there just long enough to realize how far you’ve come then move on, - don’t stay there and stare…
Written by Michelle M. Guppy
Seeing Mary...
Seeing Mary
c. by Michelle M. Guppy
(permission needed to share, MichelleMGuppy@yahoo.com)
Today I was totally frustrated,
My son didn’t listen to a thing that I said.
He was misbehaving and constantly humming,
Giggling as he ripped my papers to shreds.
I yelled, “Stop it!” “Be Quiet!” “Enough!”
“Go to your room!” I told him a bit rough.
Feeling drained and totally defeated,
I wondered if life would always be this tough.
I felt guilty the instant that I heard it,
His soft whimper that turned into a cry.
I went in and sat down beside him,
Looked to the heavens and cried out, “Why?”
Why did life always seem so unfair?
Why so many things he doesn’t understand?
Wondering how in the future I will care for him,
When my little boy grows up big like a man.
And then I gasped the moment I saw her,
Reflected through a tear that was still in his eye.
Mary, --- the mother of Jesus,
Was soberly looking me right in the eye.
Ashamed at my words and my actions,
The grumblings about all I’ve been through.
She --- had to watch her son’s suffering,
There was not a thing she could change or do.
Seeing Mary that day changed my attitude,
By picturing her son who died nailed to a cross.
And what she must be thinking about me,
Did I remember her son and her loss?
I told my son I was sorry and I loved him,
Took his hand as we went out to play.
I shed a tear for Mary’s hand that was empty –
As she walked home that crucifixion day….
c. Michelle M. Guppy, MichelleMGuppy@yahoo.com
~~~~~~~
During this Easter season, - I suppose because it’s right smack dab in the middle of National Autism Awareness month and the fact that I was in the Houston photo shoot for the “Warrior Mom” project for awareness, -- I’ve been thinking a lot about “Warrior Moms” – and about Mary.
Mary.
Talk about a warrior mom.
I’m such a wimp compared to her.
If an angel, Gabriel, had come to me one day and said that I would be a highly favored mother of a child who would one day regress into autism, and would face the scorn of society in many aspects and who would have challenges, even pain, -- I would not have felt “highly favored” and certainly would not have said “May it be to me as you have said.”
No, I would have said, “No way, not me, move on angel-boy….”
And as I sit here and think about what my response would have been, I now understand why God doesn’t always tell us about his plan, let alone ask if we approve of it!
If that angel would have told me all I would go through, that it would be worth it, that I would be BLESSED by it, that in a way that child would be my savior, - I can’t say I would have believed him, even if it was presented on a scroll signed by God himself.
I’m not sure I would have believed it if it was delivered by God himself!
Laugh at the angel, yes.
But believe the angel, no.
No, apparently some things you do have to see to believe.
And so my contribution to autism awareness month, and what Easter is about, is that as lame as it may sound, I have seen, and I do believe.
Oh yes, I have seen how autism can devastate me beyond belief.
I’ve had front row seats to see very clearly and without obstruction, - just how much autism sucks sometimes.
Not autism the child, but autism the ‘stuff’.
The lies parents are told about the hopelessness of it.
The cause of it.
The road-blocks insurance and agencies barricade you with.
The discrimination society still breeds to this day.
However, I’ve also seen how it has changed me in ways I would have never otherwise been changed.
And for that, I do feel “highly favored.”
Highly favored to be the mother of my very own angel.
Ok, more like Tasmanian devil at times, but angel nonetheless.
My Brandon.
The child who saved me from the pitifulness of my own shallow self-absorbed self.
The child who has given me the truest sense of who God is, that is wider than the deepest Biblical knowledge I may have of God.
The child who made me a "warrior mom".
And I also believe more than ever, the verse in Jeremiah that says God promises us that His plan is a plan to prosper us and give us hope and a future.
Mary must have had some kind of faith to believe that verse when she had to have known all of what the Angel was telling her would entail. How else could she have endured watching her son die on a cross, if she didn't have that "warrior mom" faith to begin with?
The kind that I had to work for over the years.
The hard way.
As each autism awareness second, minute, hour, day, week, month, and year comes and goes – along with all that comes with it in being very well aware of autism, - I will do my best to remember Mary, the ultimate warrior mom.
And I'll do my best to remember what Easter, - the Resurrection, - is all about.
The beauty from ashes.
The strength from fear.
The gladness from sorrow.
The peace from despair.
And as each Easter season comes and goes, I’ll remember the hope that only emptiness can bring.
No, not the emptiness of Mary's hand on crucifixion day...
The emptiness of a tomb.
On Resurrection day...
~~~~~~~~
Written by Michelle M. Guppy for Brandon - my Angel with autism
c. by Michelle M. Guppy
(permission needed to share, MichelleMGuppy@yahoo.com)
Today I was totally frustrated,
My son didn’t listen to a thing that I said.
He was misbehaving and constantly humming,
Giggling as he ripped my papers to shreds.
I yelled, “Stop it!” “Be Quiet!” “Enough!”
“Go to your room!” I told him a bit rough.
Feeling drained and totally defeated,
I wondered if life would always be this tough.
I felt guilty the instant that I heard it,
His soft whimper that turned into a cry.
I went in and sat down beside him,
Looked to the heavens and cried out, “Why?”
Why did life always seem so unfair?
Why so many things he doesn’t understand?
Wondering how in the future I will care for him,
When my little boy grows up big like a man.
And then I gasped the moment I saw her,
Reflected through a tear that was still in his eye.
Mary, --- the mother of Jesus,
Was soberly looking me right in the eye.
Ashamed at my words and my actions,
The grumblings about all I’ve been through.
She --- had to watch her son’s suffering,
There was not a thing she could change or do.
Seeing Mary that day changed my attitude,
By picturing her son who died nailed to a cross.
And what she must be thinking about me,
Did I remember her son and her loss?
I told my son I was sorry and I loved him,
Took his hand as we went out to play.
I shed a tear for Mary’s hand that was empty –
As she walked home that crucifixion day….
c. Michelle M. Guppy, MichelleMGuppy@yahoo.com
~~~~~~~
During this Easter season, - I suppose because it’s right smack dab in the middle of National Autism Awareness month and the fact that I was in the Houston photo shoot for the “Warrior Mom” project for awareness, -- I’ve been thinking a lot about “Warrior Moms” – and about Mary.
Mary.
Talk about a warrior mom.
I’m such a wimp compared to her.
If an angel, Gabriel, had come to me one day and said that I would be a highly favored mother of a child who would one day regress into autism, and would face the scorn of society in many aspects and who would have challenges, even pain, -- I would not have felt “highly favored” and certainly would not have said “May it be to me as you have said.”
No, I would have said, “No way, not me, move on angel-boy….”
And as I sit here and think about what my response would have been, I now understand why God doesn’t always tell us about his plan, let alone ask if we approve of it!
If that angel would have told me all I would go through, that it would be worth it, that I would be BLESSED by it, that in a way that child would be my savior, - I can’t say I would have believed him, even if it was presented on a scroll signed by God himself.
I’m not sure I would have believed it if it was delivered by God himself!
Laugh at the angel, yes.
But believe the angel, no.
No, apparently some things you do have to see to believe.
And so my contribution to autism awareness month, and what Easter is about, is that as lame as it may sound, I have seen, and I do believe.
Oh yes, I have seen how autism can devastate me beyond belief.
I’ve had front row seats to see very clearly and without obstruction, - just how much autism sucks sometimes.
Not autism the child, but autism the ‘stuff’.
The lies parents are told about the hopelessness of it.
The cause of it.
The road-blocks insurance and agencies barricade you with.
The discrimination society still breeds to this day.
However, I’ve also seen how it has changed me in ways I would have never otherwise been changed.
And for that, I do feel “highly favored.”
Highly favored to be the mother of my very own angel.
Ok, more like Tasmanian devil at times, but angel nonetheless.
My Brandon.
The child who saved me from the pitifulness of my own shallow self-absorbed self.
The child who has given me the truest sense of who God is, that is wider than the deepest Biblical knowledge I may have of God.
The child who made me a "warrior mom".
And I also believe more than ever, the verse in Jeremiah that says God promises us that His plan is a plan to prosper us and give us hope and a future.
Mary must have had some kind of faith to believe that verse when she had to have known all of what the Angel was telling her would entail. How else could she have endured watching her son die on a cross, if she didn't have that "warrior mom" faith to begin with?
The kind that I had to work for over the years.
The hard way.
As each autism awareness second, minute, hour, day, week, month, and year comes and goes – along with all that comes with it in being very well aware of autism, - I will do my best to remember Mary, the ultimate warrior mom.
And I'll do my best to remember what Easter, - the Resurrection, - is all about.
The beauty from ashes.
The strength from fear.
The gladness from sorrow.
The peace from despair.
And as each Easter season comes and goes, I’ll remember the hope that only emptiness can bring.
No, not the emptiness of Mary's hand on crucifixion day...
The emptiness of a tomb.
On Resurrection day...
~~~~~~~~
Written by Michelle M. Guppy for Brandon - my Angel with autism
Where's my Son's American Dream?
The American Dream.....
What image or achievement does that conjour up in your mind?
Close your eyes, think about that.....
Graduating High School?
Surviving your parents endless rules?
A colllege degree?
A career?
Home?
Marriage?
Kids?
Retirement in Florida?
My typical son recently had an assignment in High School where they were to illustrate, the American Dream.
A teenager lying on the ground while the rest of them emptied a huge bucket of quarters on him - showing how having alot of money is the American Dream.
They illustrated practicing ones faith freely, as an American Dream.
Even posed by someone's sports car as I'm sure for them, the ultimate American Dream.
But what about the American Dream for my other son, the one who has Autism and cannot care for himself without assistance?
Have we forgotten about those like him?
I think we have.
What if you are someone like my son, who does not even know he is American.
Much less what a dream is....
Do you still then, have a right to it?
Do people who don't know what the American Dream is, still have a right to achieve it?
It would seem - NOT.
Where was Michael's American Dream?
The young man with a disability in a state school who was murdered, over his clothing.
As of this writing, the District Attorney has yet to file charges.
Who can define the American Dream for all the Michael's in the world to me?
All those who through no fault of their own, are dependent on care from others.
What should the American Dream look like for them?
Is it to banished to a state school because that was the only option for their care?
Is it to have to be there and have the priviledge of accepting whatever treatment their caretakers decide to give them that day, because after all, they're only making minimum wage to do it, so why put forth proper effort?
Is it to have been harmed, or murdered, and the perpetrator merely get fired and not prosecuted - signifying that the individual harmed or life lost - didn't matter enough in the first place for a proper conviction or jail time?
Heaven forbit their life mattered enough for the Death Penalty!
Who can tell me why I should be proud to be an American pursuing the American Dream, while my fellow Americans are harming or murdering individuals much like my own son -- in the pursuit of their own American Dream of a paycheck?
I will die one day.
And while other family members are out there pursuing their own American Dream, I know that perhaps one day my son who has Autism will be in some sort of facility being cared for by others.
Cared for by the majority of the youth of today who only see the American Dream as money, fast cars, worshipping their god, taking care of only their family.
And I wonder...
Will they even understand why the Michael's of the world deserve to have an American Dream that has nothing to do with money, or things???
But that has everything to do with Life, Liberty, Choice, Justice, and Happiness?
Will someone be there to stand up for that American Dream, for all those who on their own, cannot?
Anyone?
~~~~~~~~~~~~
http://unworthybum.wordpress.com/
~~~~~~~~~~~~
Written by Michelle M. GuppyFor Brandon..........
What image or achievement does that conjour up in your mind?
Close your eyes, think about that.....
Graduating High School?
Surviving your parents endless rules?
A colllege degree?
A career?
Home?
Marriage?
Kids?
Retirement in Florida?
My typical son recently had an assignment in High School where they were to illustrate, the American Dream.
A teenager lying on the ground while the rest of them emptied a huge bucket of quarters on him - showing how having alot of money is the American Dream.
They illustrated practicing ones faith freely, as an American Dream.
Even posed by someone's sports car as I'm sure for them, the ultimate American Dream.
But what about the American Dream for my other son, the one who has Autism and cannot care for himself without assistance?
Have we forgotten about those like him?
I think we have.
What if you are someone like my son, who does not even know he is American.
Much less what a dream is....
Do you still then, have a right to it?
Do people who don't know what the American Dream is, still have a right to achieve it?
It would seem - NOT.
Where was Michael's American Dream?
The young man with a disability in a state school who was murdered, over his clothing.
As of this writing, the District Attorney has yet to file charges.
Who can define the American Dream for all the Michael's in the world to me?
All those who through no fault of their own, are dependent on care from others.
What should the American Dream look like for them?
Is it to banished to a state school because that was the only option for their care?
Is it to have to be there and have the priviledge of accepting whatever treatment their caretakers decide to give them that day, because after all, they're only making minimum wage to do it, so why put forth proper effort?
Is it to have been harmed, or murdered, and the perpetrator merely get fired and not prosecuted - signifying that the individual harmed or life lost - didn't matter enough in the first place for a proper conviction or jail time?
Heaven forbit their life mattered enough for the Death Penalty!
Who can tell me why I should be proud to be an American pursuing the American Dream, while my fellow Americans are harming or murdering individuals much like my own son -- in the pursuit of their own American Dream of a paycheck?
I will die one day.
And while other family members are out there pursuing their own American Dream, I know that perhaps one day my son who has Autism will be in some sort of facility being cared for by others.
Cared for by the majority of the youth of today who only see the American Dream as money, fast cars, worshipping their god, taking care of only their family.
And I wonder...
Will they even understand why the Michael's of the world deserve to have an American Dream that has nothing to do with money, or things???
But that has everything to do with Life, Liberty, Choice, Justice, and Happiness?
Will someone be there to stand up for that American Dream, for all those who on their own, cannot?
Anyone?
~~~~~~~~~~~~
http://unworthybum.wordpress.com/
~~~~~~~~~~~~
Written by Michelle M. GuppyFor Brandon..........
Define Hero
An Autism buddy recently asked a question for a vote for "Autism Hero of the Year"...
Simply put, "Who is your hero?"
I read all the names. Thought of a few new ones to add to the list. Heck, for a flicker of a moment, I even let my pride include myself on that "H" list.
But, the more I thought about it, the more I realized how differently I see that concept of 'hero' in the autism community. Or any community for that matter.
I just don't like this concept of "who is the hero of the year".
What even defines a hero in that regard?
Is it someone who has the resources to make a big change and they did? What about the ones that don't have the resources, the funding; but make changes with that they have?
Is it someone who started an autism organization, chapter, or support group? There are hundreds who do that daily. By what measurement would you choose one doing more than the other if they all make the journey for someone with autism in their life a bit less confusing?
Popularity? I hope not.
Celebrity? Please not.
Is it a mom who walked at a rally shouting "Enough!" and you were there to hear her, or you read about her? What about the invisible mom in her house in Podunk, USA who also stood up and roared, but no one heard her? Does she not get a vote because you don't know her? Didn't see her? Didn't read about her in the news?
Would your definition of hero be someone who wrote a book and sold many copies and thus changed views and attitudes?
Or the mom at the ARD meeting who simply wrote "disagree" on the ARD papers and walked out, refusing to have her rights to a FAPE silenced in defeat - and thus by that example changed the views and attitudes of those in that room only?
Is it the fact that a parent, physician, or professional did what they had to? Were trained to do? Learned how to do? Or just that they did what they didn't want to? We would all get equal votes in that case.
Do you have to have lost something in doing what you were doing? Better get more paper, no one is exempt from loss in this community....
Doing the right thing doesn't make you a hero.
Doing what you can do, doesn't make you a hero. That merely makes you responsible and someone worthy of great admiration and respect. It makes you the opposite of a scum-bag leach of society.
Most of the people mentioned as heroes did what they could do. They chose to do what they are doing. And they willingly do it. I am humbled by them. But that doesn't make them heroes.
For us, you want a hero, then find someone who did what is virtually impossible to do.....
Someone who wasn't given a choice.....
Someone not paid, or funded, or rewarded, for doing it......
Someone who doesn't even know they are doing it....
When you get through all that, you will find that many deserve a standing ovation for their service, but that the only true hero is the child with autism. ...
They must daily fight an enemy they never even saw coming.
On a foreign battleground they aren't even equipped to fight on.
And they do that not with bitterness, hatred, grudges, anger, or defeat...
But with the grace, innocence, purity, and joy of an angel.
Daily, they march on.
Fighting for one painstakingly slow victory after another.
Many don't even know they are fighting!
Many without an exit plan in sight.
By that definition, could any of us say we are worthy of that title?
Hero???
Not I.
Just he.
~~~~~~~
You are my hero Brandon....... thank you.
MichelleMGuppy@yahoo.com
Simply put, "Who is your hero?"
I read all the names. Thought of a few new ones to add to the list. Heck, for a flicker of a moment, I even let my pride include myself on that "H" list.
But, the more I thought about it, the more I realized how differently I see that concept of 'hero' in the autism community. Or any community for that matter.
I just don't like this concept of "who is the hero of the year".
What even defines a hero in that regard?
Is it someone who has the resources to make a big change and they did? What about the ones that don't have the resources, the funding; but make changes with that they have?
Is it someone who started an autism organization, chapter, or support group? There are hundreds who do that daily. By what measurement would you choose one doing more than the other if they all make the journey for someone with autism in their life a bit less confusing?
Popularity? I hope not.
Celebrity? Please not.
Is it a mom who walked at a rally shouting "Enough!" and you were there to hear her, or you read about her? What about the invisible mom in her house in Podunk, USA who also stood up and roared, but no one heard her? Does she not get a vote because you don't know her? Didn't see her? Didn't read about her in the news?
Would your definition of hero be someone who wrote a book and sold many copies and thus changed views and attitudes?
Or the mom at the ARD meeting who simply wrote "disagree" on the ARD papers and walked out, refusing to have her rights to a FAPE silenced in defeat - and thus by that example changed the views and attitudes of those in that room only?
Is it the fact that a parent, physician, or professional did what they had to? Were trained to do? Learned how to do? Or just that they did what they didn't want to? We would all get equal votes in that case.
Do you have to have lost something in doing what you were doing? Better get more paper, no one is exempt from loss in this community....
Doing the right thing doesn't make you a hero.
Doing what you can do, doesn't make you a hero. That merely makes you responsible and someone worthy of great admiration and respect. It makes you the opposite of a scum-bag leach of society.
Most of the people mentioned as heroes did what they could do. They chose to do what they are doing. And they willingly do it. I am humbled by them. But that doesn't make them heroes.
For us, you want a hero, then find someone who did what is virtually impossible to do.....
Someone who wasn't given a choice.....
Someone not paid, or funded, or rewarded, for doing it......
Someone who doesn't even know they are doing it....
When you get through all that, you will find that many deserve a standing ovation for their service, but that the only true hero is the child with autism. ...
They must daily fight an enemy they never even saw coming.
On a foreign battleground they aren't even equipped to fight on.
And they do that not with bitterness, hatred, grudges, anger, or defeat...
But with the grace, innocence, purity, and joy of an angel.
Daily, they march on.
Fighting for one painstakingly slow victory after another.
Many don't even know they are fighting!
Many without an exit plan in sight.
By that definition, could any of us say we are worthy of that title?
Hero???
Not I.
Just he.
~~~~~~~
You are my hero Brandon....... thank you.
MichelleMGuppy@yahoo.com
December 22, 2009
Christmas through Brandon's Eyes...
I thought I knew Christmas.
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.
Until Brandon.
And his autism.
What would Christmas be then?
Can a Christmas, without Christmas things, still be Christmas?
Without Santa?
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.
Sound familiar?
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 Jesus’ eyes...
On that first Holy Night, many Christmases ago.
~~~~~~~~~~
Merry Christmas Brandon….
I love you .
Written by MichelleMGuppy@yahoo.com, December 2009
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.
Until Brandon.
And his autism.
What would Christmas be then?
Can a Christmas, without Christmas things, still be Christmas?
Without Santa?
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.
Sound familiar?
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 Jesus’ eyes...
On that first Holy Night, many Christmases ago.
~~~~~~~~~~
Merry Christmas Brandon….
I love you .
Written by MichelleMGuppy@yahoo.com, December 2009
December 16, 2009
Twas the Night before Christmas...
Twas the Night before Christmas, And all through Merk’s house,
Not a long-term safety study was completed, not even on a mouse.
Pediatricians vaccinated the masses, hastily and without care,
All while the many mothers, did not know to beware.
Innocent children were all nestled, snug in their bed,
While the neuro-toxins and viruses, danced in their head.
And daddy in his kerchief, and I in my cap,
Had just settled down, for what would be out last peaceful nap------
When from down the hall, there arose such a clatter!
I sprang from my bed, to see what was the matter.
Away to my child’s room, I flew like a flash, tore off all his covers,
“What is wrong?” I did ask.
My child was loudly screaming, for why I didn’t know,
He was so hot and sweaty, he had a toxin like glow………
When what before my wondering eyes did appear?
It was a vaccine-reaction, from his toe to his ear!
Being a sharp little mommy, very lively and quick,
I knew in a moment it was from the poisons, of the multiple needle-sticks!
More rapid than Eagles, my anger did rise,
As I cursed and I shouted, and called out bad names!
You idiots! You Jerks! You are Harmful and Lame!
Injecting poisions in a child, you must be insane!
To the multiple combinations! To vaccinating a child who's ill!
Now stop it! Just stop it! Before another child's future you kill!
As I now cope with my child, like a wild hurricane he does fly,
So many odd behaviors, he no longer looks me in the eye.
So off to my Pediatrician’s, me and my child we flew,
After days worth of tests, it was Autism…….who knew.
When finally back home, I felt so aloof,
No more singing or pretending,………. Not under my roof.
Sometimes banging his head, sometimes spinning around,
He could escape a tall fence naked, with a leap and a bound.
He could not handle touch, on his head or his foot,
When he did keep on clothes, they were tarnished with “leaky-gut” soot.
A roomful of toys, he doesn’t really care,
He is happiest when alone, acting as if we’re not there…
Oh how I miss his eyes, how they would sparkle and twinkle!
Now because of his allergies, his food choices are woefully simple!
I remember when he would wear hats, always laughing and merry!
Now I’m left with a child – who might not ever say “strawberry…”
His sweet little fingers, will they ever tie a bow?
Why the change that occurred?
Brainwashed doctor’s, say they don’t know…….
As I listen to their nonsense, tongue pressed hard in my cheek –
I feel the smoke circling, my head like a wreath.
The Vaccine manufacturers, they are two faced and smelley!
When they say vaccines are safe, their proof is as solid as jelly!
With ego’s so plump, they’re like a pompous old elf:
And I laugh when I listen to them, in spite of myself.
With a wink of their eye, and a twist of the truth,
They assure us and lie to us,
That with the autism/vaccine-connection,
“There is simply no proof……….”
Parents beamed many true stories, as they set out to work,
And joined with willing organizations, to rally against those like Merk.
Their vaccine immunity now lifted, because such a rucous arose,
And finally after Congressional Hearings, many a class-action suit proposed.
Their testimony began, “There’s no evidence to prove vaccines are scary!”
But independent researchers proved, ----- quite the contrary!
The judge read the decision: “You have stolen children’s health,
And for that we award parents, all of your wealth.”
Vaccine Manufacturers sprang to their sleigh, after they were denied an acquittal,
And away they all flew, like the down of a thistle.
In the courtroom parent’s exclaimed,
As they held their children tight,
“Finally a Merry Christmas for us all...for future children & parents, a peaceful night...
~~~~
One day Brandon, one day....
Thank you Generation Rescue, Safe Minds, NVIC, Canary Party, & every other like-minded independent organization fighting daily to make so many vaccine wrongs - right.
c. 2000 by Michelle M. Guppy
for Brandon….
Disclaimer….
Any relation to any vaccine manufacturer is “purely coincidental, anecdotal, not backed by evidence, or any other hogwash nonsense we parents have been fed for years….”.
Not a long-term safety study was completed, not even on a mouse.
Pediatricians vaccinated the masses, hastily and without care,
All while the many mothers, did not know to beware.
Innocent children were all nestled, snug in their bed,
While the neuro-toxins and viruses, danced in their head.
And daddy in his kerchief, and I in my cap,
Had just settled down, for what would be out last peaceful nap------
When from down the hall, there arose such a clatter!
I sprang from my bed, to see what was the matter.
Away to my child’s room, I flew like a flash, tore off all his covers,
“What is wrong?” I did ask.
My child was loudly screaming, for why I didn’t know,
He was so hot and sweaty, he had a toxin like glow………
When what before my wondering eyes did appear?
It was a vaccine-reaction, from his toe to his ear!
Being a sharp little mommy, very lively and quick,
I knew in a moment it was from the poisons, of the multiple needle-sticks!
More rapid than Eagles, my anger did rise,
As I cursed and I shouted, and called out bad names!
You idiots! You Jerks! You are Harmful and Lame!
Injecting poisions in a child, you must be insane!
To the multiple combinations! To vaccinating a child who's ill!
Now stop it! Just stop it! Before another child's future you kill!
As I now cope with my child, like a wild hurricane he does fly,
So many odd behaviors, he no longer looks me in the eye.
So off to my Pediatrician’s, me and my child we flew,
After days worth of tests, it was Autism…….who knew.
When finally back home, I felt so aloof,
No more singing or pretending,………. Not under my roof.
Sometimes banging his head, sometimes spinning around,
He could escape a tall fence naked, with a leap and a bound.
He could not handle touch, on his head or his foot,
When he did keep on clothes, they were tarnished with “leaky-gut” soot.
A roomful of toys, he doesn’t really care,
He is happiest when alone, acting as if we’re not there…
Oh how I miss his eyes, how they would sparkle and twinkle!
Now because of his allergies, his food choices are woefully simple!
I remember when he would wear hats, always laughing and merry!
Now I’m left with a child – who might not ever say “strawberry…”
His sweet little fingers, will they ever tie a bow?
Why the change that occurred?
Brainwashed doctor’s, say they don’t know…….
As I listen to their nonsense, tongue pressed hard in my cheek –
I feel the smoke circling, my head like a wreath.
The Vaccine manufacturers, they are two faced and smelley!
When they say vaccines are safe, their proof is as solid as jelly!
With ego’s so plump, they’re like a pompous old elf:
And I laugh when I listen to them, in spite of myself.
With a wink of their eye, and a twist of the truth,
They assure us and lie to us,
That with the autism/vaccine-connection,
“There is simply no proof……….”
Parents beamed many true stories, as they set out to work,
And joined with willing organizations, to rally against those like Merk.
Their vaccine immunity now lifted, because such a rucous arose,
And finally after Congressional Hearings, many a class-action suit proposed.
Their testimony began, “There’s no evidence to prove vaccines are scary!”
But independent researchers proved, ----- quite the contrary!
The judge read the decision: “You have stolen children’s health,
And for that we award parents, all of your wealth.”
Vaccine Manufacturers sprang to their sleigh, after they were denied an acquittal,
And away they all flew, like the down of a thistle.
In the courtroom parent’s exclaimed,
As they held their children tight,
“Finally a Merry Christmas for us all...for future children & parents, a peaceful night...
~~~~
One day Brandon, one day....
Thank you Generation Rescue, Safe Minds, NVIC, Canary Party, & every other like-minded independent organization fighting daily to make so many vaccine wrongs - right.
c. 2000 by Michelle M. Guppy
for Brandon….
Disclaimer….
Any relation to any vaccine manufacturer is “purely coincidental, anecdotal, not backed by evidence, or any other hogwash nonsense we parents have been fed for years….”.
December 9, 2009
I've got better things to do than this...
I've got better things to do than this......
A Christmas toast to my autism friends, some of whom I've never even met....
~~~
I have a section in the little red spiral notebook I bring to church with me to write down notes, and admittedly when my mind wanders, titles of possible devotionals to write when I have the time....
When I have the time.
There's a future title right there.
(Better stop and write that down.)
Anyway, last Sunday at church, Pastor Bryan, "PB" my son Matt calls him for short, - used the title of this writing, to illustrate a lesson in humility - to demonstrate an "attitude adjustment" he needed pretty badly one day.
(Nice to know Pastor's really are human....)
He was called for Jury Duty - and he didn't like that.
You see, he had better things to do than that...
And while he was sharing about his crappy attitude leading to the surely crappy day of jury duty, and the eventual attitude adjustment he did later get, ~ my mind wandered...
I thought about myself, and the day I fully realized what autism meant for me, my son, my family, - our life. I could certainly relate to PB's, "I've got better things to do than this...".
I could so relate to not wanting to be called for "Autism Duty".
I could relate to being mad at having to interrupt my picture perfect dream of the picture perfect marriage with the two picture perfect (yet dirty) boys in the picture perfect house with the not-so-picture-perfect busted out window from a foul ball gone astray in the backyard.
Yeah, sometimes being called to do your 'duty' - rather sucks.
Especially when it's more than just an inconvenience for a day.
For me, my name has been called for "Autism Duty" each day since 1996.
How do you like those odds?
I don't thnk the "typpies" of the world, those without autism or disability in their lives, get that.
How easily an 'inconvenience' in their otherwise 'normal' world, affects their attitude so.
Shoot, PB even got paid $5 for his jury duty.
My autism duty thus far has cost me a few life savings....
Sometimes it bothers me, but many times it merely humors me not in a prideful contempt way, but in a humble, blessed way....
I could be like them...
(smile)
Those 'typpies' whose world is just shattered by a little piece of mail that interrupts their life for perhaps a day or two.
Yeah, I'll call your Jury Duty and raise it with every 45-minute toilet routine duty with a 15-year old who can't do that on his own.... or the wonder of whether all your efforts will pay off and your child will recover and he would get to experience everyday milestones like, oh, marriage, children, etc...
I'll call your your having to take out yet more annoying time once in a blue moon trying to get through to someone on the phone to figure out what bus to take to even get to the courthouse to serve that Jury Duty; and raise it with having to do that daily for every service, support, school, and insurance question you have in caring for your child with autism.
Yes. Serve a day, week, or month in my Autism Duty - and you will nodoubtedly fold.
I think it was probably, hmmm, the hundredth stupid-doctor appointment I had where all they said was it's just autism - that I probably screamed, ok cursed, "I've got better things to do than this!
Or maybe it was the thousandth poop mosaic I had to clean from the walls, sheets, floor, - child, that I KNOW I yelled out to God in the heavens, "I went to college to DO better things than this you know!"
But alas, one day it finally hit me, that given the circumstances that I don't seem to have a cure for at the moment, there's nothing I'd rather do than this.
There's nothing more important or rewarding, than caring for a child such as this.
One that has brought more love than a heart could possibly hold, more joy than a mother could ever deserve, and more knowledge about what really matters in life than a mind could comprehend.
There's nothing better than being a part of such a tight-knit yet scattered across the globe-community such as this.
Knowing you have friends that you have never met, who are out there only a click away, who will stay up all night with you researching something that you can't figure out yourself.
Walking side-by-side at a rally with strangers who are in many ways closer to you than your own relatives...
I do admit though that some days are tough...
I am like PB and grumble about my "Autism Duty".
I do admit that if there were excused exemptions from serving listed on the back of my Autism Summons, I would have used them.
Just like I'm sure many of you would.
Many of whom, I know only by e-mail...
JudithNeverSleeps@ -- I know that as a single mom raising a child with autism and no help -- you have better things to do, most of them starting with a nap I'm sure!
AutismTookMickie@ - As you fight to get him back, I wonder if you too had better things to do...
AutismMommie@ -- That says it all. I wonder if you had a high-paying corporate job before your Autism Duty led you on a new career path.
ARDMomAngryPants@ -- Ahhhh, my faceless soul sister! I can so relate....
SpecialEdMarine@ --A true Marine Seargent who at one time has defended our country, and who is now defending children's rights to an appropriate education. I do salute you David.
Keys2UA@ -- Those who work tirelessly searching for those keys that will unlock the cause and pave a way for the treatment and cure - of autism.
NeverSayUncle@ -- Oh how you personify every one of us who at one time wanted to quit because the world just seemed too stacked against us and our children. But we don't. It's not in our nature. We will never cry uncle! We will never stop fighting whoever or whatever is in our way - for our kids.
HuntersHope@ - reminds me of that when I see that mom's posts. Hope is each of our child's last name. There is hope, and we must cling to that hope daily.
Just like PB was blessed at the end of his day by meeting some people who touched his life and changed his attitude, so too have each of you changed my attitude, touched my life and have given me hope.
I thank each of you for that.
I thank God for that.
For giving me what I needed, not what I wanted.
So, for everyone out there in Autism-land - and for everyone who whether 10 years ago or 10 minutes ago received their "Autism Summons" and has been or is about to - serve their "Autism Duty" and who thought or will think, "I've got better things to do than this" ---
Raise your glass of spiked Eggnog with me...
This Christmas toast is for you.
Here! - Here!
Merry Christmas everyone...
Proudly serving alongside each and every one of you,
juror number 01031968
(written by Michelle M. Guppy)
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