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 9, 2016

My Mighty Morphin' Power Moves...

So today an e-mail from Amazon came across my inbox.  It was an e-mail asking me to rate a recent purchase I made...  I was about to delete it, as thinking about why I ordered this particular gift for someone brought on negative vibes that I have been trying to put in the past...  But as I was about to hit "delete" I could hear that marvelously michevious grinchy-grinch humor rumbling from that sweet spot of sarcasm that often saves my sanity.

So I rated the item.  My reply too long to share there, so I shall share it here....

I gave it five stars.

I ordered this particular item in response to a twenty-something year old who in all his wisdom of those twenty-something sheltered years, thought he was justified in sending me an e-mail outlining how "no one likes me" and "nice power move" in response to me challenging a family member on blatant lies spoken against me.  Mind you the e-mail he was replying to was not addressed to him, but the master manipulative party it was addressed to, saw fit to send it to everyone for the purpose of getting people to "no one likes me".

I choose to polish the mental toughness I must have to survive vaccine injury and all the horrific seizures that come with that, -- by humor.

I was going to buy this "gift" for that particular person who I would have thought knew better than to do that to us, Todd and I, who have done nothing but love and support him...  Who we have included in family gatherings as if he were our own son.  Who we have shared our precious time with Matt with so that all could be with him --when all we wanted was to have our son all to ourselves.  So much for thinking of others.  What is that saying?  "No good deed goes unpunished?"  But I digress....   What an "power move" that was in loving and including someone who would turn on us for a baseless reason, a reason not his own, but of what others shared with him about us.

His words "nice power move" stuck in my head and made me think of Power Rangers.  So I went to Amazon in search of a "Power Ranger" to send to him for Christmas as a reminder of me and my many "power moves".  To give him one final "Power Move" because after all, if I'm going to be accused of these "power moves" then I might as well do one to deserve the accusation!  I even had a great caption for the gift tag, "Because I'm all about those Power Moves."  Yellow isn't really my color, but sometimes you have to go with what you've got, and it was either yellow or pink, and I do not do pink.  Shudder.

But, I'm not going to send it to him.

I think the realization one day of what he's done will be enough.  And even if he never realizes that and continues to ignore us for no reason, that is on him.  Not us.  This "Power Ranger" sitting on my desk has been great therapy in teaching me that.  Not a bad lesson for $18 and free prime two-day shipping.

Instead my "power move" will be to pray for him.
Pray that he never has to understand what it is to truly be ignored.  In having a son who was maimed by vaccines and who has been ignored by society, by doctors, by our government.  For us to have lived that for so very many isolated years - to have had so many needs ignored by insurance, by state services, for some by their very church - and then to have someone "ignore" us further?

It's hard to even be mad at someone who is that shallow.

I think the best test of your sanity is when you can look at an insane situation and laugh.  Truly realize it's not you, it's them.  When you can look at a situation and know that it's not about who is right or wrong, it is about what is best for you and your sanity.  And for us, and our sanity, it is best for us to move on believing in what Maya Angelou says, "When people show you who they really are, believe them."

Love them...

Forgive them...

But believe them...

It took a long time and many repeated hurts and manipulations to believe that in those who are supposed to be closest to us.  I believe we are better than that and that we have so many around us who love us and believe in us and who would be there for us through calm or conflict.  Those are the people who we choose to invest in.

I watched a movie recently that had a very profound line in it.  "You know you are over being hurt when you have an opportunity for revenge and do not take it."

This Power Ranger figurine was my opportunity for revenge.  I had it all wrapped and ready to mail...

But I didn't.

It sits on my desk as a reminder of my true "power moves" that he nor those who have manipulated him against us will ever be able to fathom.

The power moves of forgiveness.  Of truth.  Of understanding conflict and how to deal with it and work through it.  Of loyalty.  Of love.  Of what a true family is and how a real family should treat each other.  I don't say it often enough, but it is my husband and his parents who have taught me that.  There has been conflict but there has always been love and working through it.

Especially as a warrior mom, the power moves of enduring the unendurable.  Of having no choice but to bear the unbearable.  Oh how I wish I could quit on my son like they have quit on us!  But because my son cannot quit his autism and the life it forces him to live, we cannot and will not ever quit on him.  There are way too many out there who do not comprehend that in any way, shape, or form and that is the greatest tragedy of all.  To not truly know what unselfish love is.  To not truly understand what it means to not quit, but to stay, stand firm, and fight for what you love, for what you believe in.  It is so easy to quit and walk away and that is what he has done.  It is he who that "power move" will bite in the ass one day down the line.  Team Guppy has learned the hard way that life is measured by how you act and what you do during the not-so-easy times.  When those around us have long since gone, here we will remain, marching on.

Our "power moves" are measured by the words HOPEISMNot Dead Can't Quit, Be Brave, and Never Quit!

Our power moves are in how we pursue truth and have pursued a relationship despite all the roadblocks.

But I've come to realize that our greatest power move is in moving on.

In not letting that which we can't control, --influence us, consume us, change us, or define us.

In not continuing to expose ourselves to the bullets that continue to pierce.

So yes, Amazon review folks, I give this "Power Ranger" 5 stars and 2 Guppy fins way up.

I would highly recommend it to anyone who needs healing in the face of false persecution.

It will sit on my desk as a reminder to make each day a positive power move in being thankful for those in your life who love you so much they would pursue you from hell to HOPEISM and back again!


July 5, 2016

The Crazy, Mad, Wonderful...

The crazy, mad, wonderful world of being a warrior mom... That should be the title of the book so many tell me I must write about our "Life with Autism, Seizures, and a side of Chaos..." There have been many titles I've thought of using over the years. I think my favorite is still "There's Poop Floating in my Tub: and other Oddities of Life with Autism." We certainly have experienced enough of those oddities to fill an entire book series. But I digress --
The crazy, mad, wonderful world of being a warrior mom --- is that as I sit here -- I've waited an entire year for this year's opportunity for four nights and days of respite. Sweet, blissful, respite. Oh, we occasionally get a break - at least 3-4 days a week he goes to his therapy program. Once a quarter or slightly more often we actually get a few hours respite on an evening or weekend day. But for overnight respite. For 4 nights and 4 days. That is sheer luxury. It's like, well, what typical families can have anytime they want. Their typical kids going to another typical friends house for a sleepover. Going to Grandma's for a week. Luxuries. Those things are luxuries. The parents who can take advantage of those things are soiled rotten with extravagance. And for the next four nights and four days, I get to be them. I've longed for this day. Camp Day. I've counted down. I've wished it was sooner. More often. But as is always the case, on this day I am not filled with the sweet decadence of no worries, but rather the bitter taste of what if. I mean, when the phone rings with my typical son at someone's house or Grandma's it will be about those silly things typical boys do that a stern threat will thwart the continuation of. If the phone rings while Brandon is at camp -- he's either had a seizure and a bad fall, or they've lost him. Hence the "OMG-when-will-camp-start?" and then the "OMG-how-can-I-leave-him-there!" Just this morning - his incessant humming for the last two days has me at the point where Todd needs to hide the ice pick so I don't use it to gouge my ear drums out. I literally cannot will the clock to move fast enough forward to peel out of my driveway and be the first in line at the camp gate to honk the horn in cadence with Brandon's humming until they come get him and I can leave skid marks leaving camp. But as I feel the sweet relief of writing that - I know that once there I will linger. I will grill his counselor in testing him to make sure he read my twelve page "Caring for Brandon" document that is highlighted and referenced. (Ok, maybe not twelve pages and maybe not referenced, but it is four pages long and there are highlighted parts.) I will cry. I will regret wanting to leave him so badly. And I will cry some more as all of my fears will scroll through my mind. What if he wanders off. What if they don't feed him enough. What if they don't do his supplements right. What if he wanders off. What if he's cold at night. What if his counselor actually dares to sleep and Brandon is wet. He has a seizure. As much as I want to take him, I don't want to leave him. All of my hopes and fears in my life with autism and seizures summed up in that sentence. I think perhaps for me the only reason I can actually leave him and drive away with tears streaming down my face, is because I know I must. This camp each year, prepares me, and him, for what will come one day when I am no longer here. I will have to trust. Brandon will have to adapt. And it reminds me that all I truly have control over is my HOPEISM. In believing in prayer. HOPEISM that the heart of all who are part of Camp Blessing, TX is the heart of all who will be caring for him when I am no longer here. Prayer that his counselor, his caregiver for the week is someone who is given supernatural ability to endure. To understand Brandon. To persevere. Someone who is superhuman and needs no sleep for the next four nights. Prayer that God will give him an autism-free, seizure-free week. Prayer that he won't wander off or fall down. Peace to know that it will be ok. As I sit here with his bags packed, his supplement suitcase packed, the forms filled out and the car loaded as if we were moving out of the country - I'd like to think that this fifth year of Camp Blessing, TX for us will be easier. I mean, we are veterans at this. But it's not. It never gets easy. Autism doesn't give you that luxury. All I have is the fact that our life with autism is in fact a crazy, mad, sometimes wonderful life that has landed us somewhere between the sacred and mundane but always, always, right smack in the middle of where our faith that it will all be ok meets with God's faithfulness that it will indeed, be ok.

March 1, 2016

Through the Eyes of a Lion

I want to share with all of you a portion of our Team Guppy Christmas Letter (below) that we sent out this past year.  Each year I try to find a way to sum up what we've learned through that year -- and this picture I saw this morning while scrolling through Facebook made me think of that again, in light of what Todd and I are going through in his unemployment.

 I finally quit spontaneously crying at the enormity of it, but each morning when I wake up I must again face our reality and the vulnerability in that, and for a few moments just panic.  I'm a control freak.  I like my chaos controlled!   And this chaos is so totally out of my control!  Just when I think I can't get any further from my comfort zone, God redraws the boundaries and shows me I must.

Which is why I was drawn to this picture when I saw it.

In a way, (a very small way), I am thankful for these "evils" I have been forced to face because of how they have changed me.  I have had to confront life with autism, seizures, the trauma those things have brought upon our son; ---and now, a side of unemployment.  Through the course of our journey I have had to learn what true hardship is, and most importantly, what it's not.  But slowly, begrudgingly, albeit at times kicking and screaming in protest, -- we got through it.  Beaten, bruised, and scarred at times, but always we get through with a little help, prayers, encouragement, and now support from our warrior friends.  The battle is both enlightening and empowering.  It's odd to see it that way, but it's true.  If we were to have gone through nothing of what we have been made to go through, we would be the very people we see, perhaps know, that we definitely don't want to be.  That is the thankful part in all of this...in what we have learned, how we have grown.  Our whole attitude changed in exactly what this picture says --- knowing we are confronting what most people refuse to acknowledge.  The lies, corruption, and evil that brought us to this battlefield. Running toward the roar of our situation and not shying away from it.  Staying the course when everything in us screams to turn back and quit.

I sit here humbled by it all.  By the strength, courage, and determination of this warrior community we are a part of.

(With that said, I would very much like a season of boredom please.)

Through the Eyes of a Lion...

What has inspired us
this year were truths found in that book by Levi Lusko...

It speaks of how we live with our heart set on heaven but our feet still here on earth, and how we must learn to navigate that space between promise and fulfillment.  Jesus died on Friday, he rose on Sunday, in between is Saturday.  Saturday --- where each of us must reside.  The book is about how to keep going during those Saturdays where  it seems that our "greatest endurance sport is disappointment." 

We've certainly run that marathon this year. 

Each day for us is an indescribable challenge.  We must bear burdens few could ever fathom, the reality of that often taking our breath away.   But as he points out in the book, "God always grants incredible power to those called to face impossible pain." and "Suffering isn't an obstacle to being used by God.  It's an opportunity to be used like never before."    I do believe that.  I love his description of hope, which I call HOPEISM:  "HOPEISM is a joyful anticipation.  When you have hope, gale-force winds can blow and tsunami waves can smash into the hull of your life, but you are buoyed by the belief that the best is yet to come, that brighter days are ahead.  HOPEISM quietly tells your heart that all is not lost, even as storms rage."   He encourages us to "Run toward the Roar" meaning that most when they hear a lion roar they will run away.    He encourages us to run toward that which is challenging - run toward our fear -- run toward our faith -- and NEVER QUIT.   Turn your mess into a message.   Your pain into a platform.   Your trial into your testimony.   The trash that has come into your life into triumph.      

Together Todd & I savor each good moment and hang onto HOPEISM through the not so good ones.

We dream, dare, & do. 

We do not quit, we overcome.   

We run toward the Roar!   


January 4, 2016

What Brandon taught me about Birthday's...

Happy Birthday Brandon! I wanted to take him out to dinner for his Birthday today..... Instead we went out yesterday on my birthday. It was such a beautiful day and he was doing good - so in our "Life with Autism, Seizures, and a side of Trauma" we've learned to not plan ahead, but to instead go for it in the right here and right now. So we did. We took advantage of a good day and he was my Birthday date yesterday instead of me being his Birthday date today! I think I got the better deal! Team Guppy has learned the hard way to take advantage of what the moment allows, because if we wait for another moment to do it, seizures will prevent it. I'm glad we went out on our adventure to the Nature Trails then dinner yesterday - because early this morning - on his 22nd Birthday - he had a seizure. Perhaps it was early enough in the morning that maybe he'll be up for going out later - but even if not, I'm so glad we went yesterday. I am so glad we took advantage of the moments we were given instead of waiting for the moments to come. I think that lesson is perhaps one of the greatest Brandon's life has taught me. To live in the moment. It is only this moment, right here, right now, that we have to do what we must do. To witness to who needs to hear about Jesus. To live to the fullest. This moment to make a difference. This moment to speak truth. This moment to not waste worrying what others think. This moment to choose who and what our priorities will be. This moment to not squander on any thing or any one not a priority. That one is a hard one for me. I squander too many moments on those who don't have even a moment to be a part of our lives. I give too many thoughts to people who do not ever give us a thought. And speaking of thoughts.... I've thought a lot these last few years about "Birthday's" and what I've felt the true "gift" in them should be. For me it's not people giving Birthday gifts to that person, it's that person giving a Birthday gift to God. The former creates a "me-centered" existence and I've seen enough how that plays out in most teenagers and then in most adults. "Gifts to me, it's my birthday, give me..." To me that creates a lifetime of thinking the world owes you something. It is in that where I find such thankfulness in Brandon's life with autism. We were never a part of the "bigger and better" Birthday parties. Gifts and gift bags and whose party was more lavish and how do we top last years lavish. We lived simply. No way in our chaos we could ever compete with anyone else, so we never even tried. My thinking has shifted to that yes, it's your Birthday. You are loved. You are a blessing. Now what gift are you giving God for another year of life? His Birthday gift to you was life, what gift to him will you give back each year in return? Even children can be taught to understand that concept. What will you promise to do better as you blow out those candles on the cake? How will you be a better person this year? Who will you help more this year? Who will you befriend who has no friends? What gift to someone who truly needs your Birthday gift of money, help, things, encouragement will you give this year? I thought about that a lot yesterday... and I think for me it's that squandering thing. I waste so much time pursuing things or people who really don't matter. Not that they aren't loved or really don't matter, but for these precious moments I have so few of, I need to let God go after the one and me worry about the 99 right here in front of me. I worry too much what others think and let their lies and confusion muddle my world. Less of me and more of you God. Less of them and more of your word.
That is my Birthday gift to you, God. Thank you, --thank you for the gift of my life. I vow to use it to the fullest to bring you Glory. I want to give gifts to others. Inspirations and encouragements to people so they may know you, follow you. That it's you whom the gift of HOPEISM flows from, not me. That it's you who gives the strength of NDCQ, not me. Brandon's Birthday gift to God is how he draws me closer to Him. I can't think of any better Birthday celebration than that. Not healing, not even if Brandon's Birthday had been seizure free. Nothing.
Ok, well maybe..........