On being forged into a warrior mom

If I could summarize our journey from Hell to HOPEISM, it would be in my faith, which I call HOPEISM. It has been my weapon of choice to get me through each battle I have had to fight in my mission to win our war called life with autism and seizures. Vaccine injury to be more specific. It would also be in committing to heart, soul, & mind the words and motto's from Forged, NDCQ, the Lone Survivor, and Levi Lusko in his book, "Through the Eyes of a Lion." I will be forever grateful to the inspiration, encouragement, and mental fortitude found through all of them collectively. Because of that, I am not allowing this tragedy of vaccine injury that has come into our lives to be an obstacle to being used by God. I am instead turning it into an opportunity to be used like never before!

This blog is dedicated to Brandon. His life has been forged by difficulty, obstacles, & all too often because of seizures - pain, blood, broken teeth, & broken bones. Yet through all that he has shown such fortitude. The bravery, strength, & resilience of a true warrior. He taught me that having strength through adversity means that even if you lose every battle, like the Lone Survivor, you never quit fighting until you win the war. That in the words of "NDCQ," you keep "dreaming," keep "daring," & keep "doing." As Team Guppy has yet to be able to escape vaccine injury, we have no choice but to as Levi Lusko writes, "Run toward the Roar." God has indeed given us such incredible power in enduring such impossible pain.

Some days the HOPEISM in that simply takes my breath away.

December 29, 2009

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...



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

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