My journey through life with autism, seizures, - and a side of crazy, mad, wonderful.
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.
January 17, 2011
The Gospel according to Wakefield...
Webster's defines "gospel" with the following words: good news, the teachings of Jesus, anything proclaimed or accepted as truth....
I chose this title because to me it mixes both sets of emotions I have right now about Wakefield and my beliefs as a Christian.
And to be clear, - no, I don't view Wakefield as "God" or "the Messiah" or anything idolatrous like that. What I do have for Wakefield, is the utmost respect and admiration for who he is, what he stands for, and what he won't back down from -- which is quite simply, the truth.
The gospel truth...
According to what the scientific process should be about, but isn't anymore.
Not since Proffit, er Offit, no, I mean the "profit" that has occurred since the onslaught of vaccinating from everything from getting the flu to most likely not long from now, not having freckles.
Not since what the government and the vaccine industry saw in how much they could gain from the profit off of attempting to prevent sickness in children, or from the treatment of the sick children those very vaccinations create.
Even though Wakefield happened to be the one that started us on our path of saving our son, he is not our Savior.
God is.
Wakefield is simply an endangered species of man who dares to tell the truth at no profit and at all cost.
He is simply a man who last Friday night at dinner with a group of people, challenged me in a way I've not been challenged in a long time; and it's had me thinking since then.
At dinner with he and the authors of "The Age of Autism" and some parent warrior-mom's of autism --- one of the authors said matter-of-factly to Dr. Wakefiled, "You know they won't stop until you are in jail".
To which Dr. Wakefield calmly replied without a blink or hesitation, "I know.".
I sat there across from Wakefield in stunned silence.
You see, "The Gospel according to Wakefield" is so solidly based on the truth and pure intentions, the thought of being persecuted all the way to jail does not even deter him.
I cringed at my own Christianity at that moment.
What am I being persecuted for believing?
What career am I giving up for the pursuit of truth?
How far will I be willing to go for Christ?
The next day at the event he was brought in to speak at along with Mark Blaxill and Dan Olmsted, I watched a man who has been carrying the cross he has been crucified on time and time again for years now, still stand strong with dignity. I listened to a man undeterred. Unphased by the media man-hunt of the previous week. Not angry, not accusatory, not out-of-control, -- but steadfast in the only way one can be when they know what they are doing and why they are doing it, and doing it not because they particularly enjoy it, but because it must be done.
I was watching a modern-day Paul.
A man from "The Gospel" who was just as persecuted.
A man who was Beaten. Belittled. Jailed.
Yet from jail, still encouraging the church to remain faithful.
From jail, still proclaiming the truth.
If there is anything 'god-like' about Wakefield, it is that similarity.
That truth cannot, and will not, be silenced.
Not even by death.
That similarity so lost in modern-day journalistic bias and mainstream medicine's apathy, that it seems as foreign as a story from Biblical times.
Making Wakefield seem like a god because average men who do what he does, are so rare that anyone who does do what each of us are called to do in speaking the truth, must be gods with delusional cult-like followers!
I have no doubt Wakefield would go to jail for a cause that doesn't even affect his own family.
Do you get that reporters? Critics? Mainstream Medicine?
You who are swayed by the lure of pharma & advertising money today, just as Judas was then?
You who are nothing but marionette's controlled by the strings of the paycheck you would dare not lose as Wakefield willingly did?
You who will eventually hang yourselves on your own wrongness as Judas did?
One doesn't need research, facts, more research, and more facts, to understand the basic premise of who is believable and who is wildly trying to defend a very lucrative way of life.
Healthy children simply do not make anyone any money. Period.
There is too much at stake for a rational debate on the issue of vaccine manufacturing or drug safety.
There is too much money to be lost by a multi-billion dollar industry in Wakefield being right.
Jesus understood that conflict about those who convicted & crucified him.
He understood that for most people, their very pride would not ever allow them to believe in a Messiah, or that he was that Messiah. And he understood that even if they did believe that, their love of self would not let them follow that belief.
Yet he endured the cross anyway, for them.
Just as Wakefield endures the cross he bears, for us.
For me.
For my son.
When I had given up hope in ever finding answers for my son's chronic diarrhea, Dr. Wakefield's research led me to Austin and Thoughtful House Center for Children in 2006. There, Dr. Krigsman's Endoscopy & Colonoscopy of my son, led to the medical treatment my son had been denied from the most respected medical center for children I live 20 minutes from in Houston. Treatment which made my son a healthier person, no longer in pain, no longer homebound from the up to twelve bouts of diarrhea he had daily for over a decade.
From that period of time in getting that help for our son, I had come across a poem written by a profoundly disabled boy, who through a painstaking process, could share his poetry. That boy's name is Marshall Ball, and this poem is one I've kept in my Bible ever since then, as a symbol of my son's autism, bowel disease, and what Wakefield's research, and Dr. Krigman's subsequent treatment meant to us:
Kind
Rich
Love
Listens
Kindly
For
Answers
If there's anything in this life Dr. Andrew Wakefield is guilty of, it is that.
Written by Michelle M. Guppy
..... for Brandon
December 22, 2010
Christmas through Brandon's Eyes
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 Baby Jesus’ eyes...
On that first Holy Night, many Christmases ago.
~~~~~~~~~~
Merry Christmas Brandon…..
I love you .
December 17, 2010
.....our Christmas journey
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...
Yet again.
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 detours.
Many pitfalls, challenges, tests of faith.
Sound familiar?
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.
Humbly.
Prayerfully.
Faithfully.
Peacefully.
Joyfully.
Simply.
And the ever present...
Humorously.
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
The Gift of Peace
(originally written in 2004)
December 2, 2010
The Gift of Timelessness
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...
By MichelleMGuppy@yahoo.com
The Gift of Unconditional Love
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 me.
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...
By MichelleMGuppy@yahoo.com
November 17, 2010
Random thoughts on Hopeism, hot dates, and going through hell....
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