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 8, 2010
The Story behind 'God's Beautiful Butterfly'....
(handpainted by Brandon M. Guppy)
This artwork above will be available for purchase in a notecard set with the poem inside, in Fall 2010. If you would like your child to submit a painted butterfly for the notecard set, please submit JPEG high quality picture to: MichelleMGuppy@yahoo.com.
Right now, in conjunction with Autistic Artist Steven Knox, Butterfly prints and notecards are available through his website at: http://www.boundlesscreations.biz/butterflies/gallery.html - pictures 01 and 02.
The story of Brandon's Butterfly.....
(as written long ago when I created my first Texas Autism Advocacy website, www.TexasAutismAdvocacy.org. I now also have the website Houston Autism Disability Network, www.HoustonAutismDisabilityNetwork.com)
"Happiness is a butterfly, which when pursued, is just beyond our grasp, but which, if you will sit down quietly, may alight upon you.”
“…and we eagerly await a savior from there, the Lord Jesus Christ, who, by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body.”
I love butterflies, and so it was no surprise that when I decided to create a website for parents and professionals in Texas for information and networking for autism spectrum disorders --- that I chose the butterfly as the website logo.
For me, the butterfly represents the transformation of my life from before my son was diagnosed with autism – to my life after …
Those first few years after Brandon was diagnosed with Autism were hard to say the least. My hopes and dreams for my son as a “typical” child – were shattered almost overnight. The enormity of what that meant, once I finally realized ALL that it meant, was overwhelming. I didn’t understand how or why my son went from a smiling, happy baby; one with a bubbling personality and sparkle in his eye, - to a screaming, shrieking toddler who refused to look at me or allow me to touch him, and wanted only to be left alone in his room.
I felt like a caterpillar – who wanted nothing more than to hide in a cocoon and not ever come out.
Obviously, that wasn’t an option.
I had to find a way to cope, so that I could get to the important business of helping my son. I had to find a way to pick up the pieces of that shattered dream, and arrange them into a new one for my son.
A butterfly proved to be the piece of the puzzle called autism, that I needed.
One day when my son came home with one of those magnetic photo frames with a picture of his handprints arranged in the shape of a butterfly. In the bottom corner was a seven circle caterpillar with each letter of his name in the circles – indicating that the picture was made by him. I remember looking at that picture and thinking that in order for me to help my son, and other families, I would have to break free from that cocoon that was crippling me. I would have to change my view of autism from it being like “a crippled caterpillar” – to it being the “beautiful butterfly” that my son’s handprint represented. I needed to break free from that cocoon of despair and devastation and do something positive.
During many tearful nights in prayer, and thanks to God’s grace and mercy, I learned how to cope and my attitude was slowly transformed from despair to hope. There is a quote I came across one day from Sally Meyer that reads:
“Autism is not the end of the world, it’s the beginning of a new one, just open your eyes, and see…”
And so I did.
Slowly, I began to emerge from that cocoon of devastation, despair, anger, self-pity, and all the other emotions that were swirling in my head. Slowly, my eyes were opened to the beauty of my child despite his autism, and in the many unexpected blessings of this new life. I found new friends, thousands of internet friends whom I have received much information and resources from; but most importantly, I learned things about myself that I would have never known otherwise.
My transformation was in realizing for the first time, what truly matters most in life, and what unconditional love is. My son is 11 and has never been able to communicate or say “I love you” to me – yet at the same time I could not imagine loving him more. My husband's transformation was in learning how to accept that which he could not fix or change. He learned the humility of being on his knees crying to God for help. My typical son Matthew's transformation was that he has become a more mature, compassionate, unselfish, big brother. His prayers at night suddenly went from, "God bless my mom and dad and please let me have a new bicycle" - to - "God please help someone unlock autism so my brother can talk and all the children with autism can be cured." He asks me if I have been saving money for when they do unlock autism - so we can afford the cure. Perhaps the most profound transformation has been in those touched by Brandon. So many lives this silent, autistic, child of mine has touched! Their lives would not have been transformed had it not been for Brandon and his life with autism.
Autism is still hard.
It is a horrible, horrible disorder. One with many questions and few answers. I know no other words to describe how autism has affected my son. To have pictures of him laughing and smiling as an infant and toddler – replaced with the blank stare of autism as a child – is just devastating. So in no way do I attempt to water that aspect down. I simply want to share my perspective of how we have chosen to turn our anguish into awareness and advocacy.
Acceptance is liberation, not defeat.
Once I learned to accept this new life and this new journey – despite the hardship and heartache - I was able to truly find joy again. Joy in knowing that the caterpillar was designed by the creator to one day become a butterfly. To accept that there is purpose in my child having autism is to know true peace. I don't have to agree with it or like it, but I must accept it. Psalm 139 says that “All the days ordained for me were written in your book before one of them came to be…” Whether by mercury poisoning from the thimerosol in vaccines, genetics, toxins in the environment, whatever, – God knew my child would be the way he is. I am not defeated by accepting that. I am instead liberated. Free to start from that point forward in making my child’s life be the best it can possibly be. Free to help other parents with what I have learned. Free to make my voice heard in support of research, legislation, and services for my child. Which I have done. I have created a network for parents and professionals in Texas who are connected by Autism Spectrum Disorders. I have worked tirelessly for the past 9 years in building that network to inform and educate and give support to – other parents. I have been to Washington, D.C. twice now to participate in Autism Awareness Rally’s. Free to know that it’s not up to me whether one day he flies or not – but to simply encourage him, help him , and give him every opportunity to try. Free to know that whether my child is cured or not, I did my very best for him.
It's a hard journey – but we have a choice.
Even the butterfly must struggle to get out of it’s cocoon – and once out – there are predators out there to avoid! So make no mistake, our journey has not been easy, nor will it probably ever be easy. As with any situation in life - there are good days and there are bad days. But we have a choice... We can choose to focus on the ugliness of autism and the limitations and challenges it brings, which can be crippling; or we can choose to focus on the beauty and blessings of our child, and what he can do...
I choose beauty.
(and a good sense of humor about it all!)
God’s Beautiful Butterfly
I am a child who has Autism,
Who may not do things exactly like you.
But that does not mean I am useless,
I have feelings and emotions, just like you.
I can hear the things you are saying,
Even though with words I cannot yet speak.
I may not be able to play sports like you,
But that does not mean I am weak.
I know there are many things about me,
That you simply do not understand,
But please don't assume things about me.
Talk to me, and perhaps offer to shake my hand.
I may have a mind that works differently,
Pages in a book – I may flap instead of turn,
But that does not mean you can't teach me,
You might be surprised at just what I can learn.
If you think when I don't cooperate, I'm misbehaving,
And conclude that I'm not disciplined enough,
Please take a moment to consider,
That the road I am traveling can be tough.
When you stare at me, point, or start to whisper,
It makes me sad, and I so want to cry ---
Why do you view me as some crippled caterpillar?
Why can’t you see that I'm God's beautiful butterfly?
c. 2003 by Michelle M. Guppy
General Disability Version available as well.
For Brandon Michael Guppy
For permission to reprint: MichelleMGuppy@yahoo.com