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.

October 14, 2010

On being a fly on the wall in my own house...

I would like to go undercover in my own house one day.

As a complete stranger.

A fly on my own wall -- so to speak.

To see our Life with Autism as a stranger might see it.

I'm sure at first glance, heck, any glance, it would seem like pure discombobulation.

A mom trying to keep a resolution to be like "Julie & Julia" and cook something new each week for her all too deserving husband.  To somewhat make up for years of not being able to consider such a challenge in the face of the challenges of autism.

A young adult son grabbing the onions she's just chopped while her back is turned checking something in the oven.

It's cute if it was a little toddler doing that and you could threaten them with their life if they did that again.

But not so cute when it's an adult child who doesn't know any better doing that, and doing it over and over again because threats don't work on a person who doesn't understand what a threat is.

The military precision with which all doors are locked then unlocked to enter or leave a room, pantry, refrigerator, garage, or yard.

The secret service duty of always having to know where that person is every moment of every moment.

The lengths we go just to keep whatever we're drinking, for ourselves.  Hide-and-Seek has nothing on our family.  Try finding a hiding spot to set your drink between taking drinks, where an adult-sized child won't get to it to drink it before you can finish it.

I chuckle when I think what our guests must be thinking when they're eating with us and we look at them then smile at each other as we put our drinks on top of the refrigerator behind the basket with a towel over it, lest one millimeter is showing, - while they naively just set their drink down on the table where they're sitting.

Silly guests...
You will quickly learn.
And then Brandon walks by and teaches them.

As he has taught each one of Matt's friends anytime they came over for pizza and left a slice unattended while they went to the bathroom or out to play, and came back to no more pizza.

But Matt still had his.

It was in the oven, on the top shelf, pushed back where it couldn't be seen when the oven door was opened.

Because he knew, the oven door would be opened.

I wonder if they would see the stains and scrapes on the walls and banisters as bad housekeeping.

Or the little things that in your spare time you have time to pay attention to, and do; but for a family that has no spare time, must remain overlooked... 

Do they see that as laziness?



That concept is as foreign to us as keeping a campaign promise is to a politician.

When they see our house and it's lack of fancy decorations, curtains, or meaningless things, do they feel sorry for us or think we're lacking?

Do they think us poor?

I hope not, because our house is instead filled with things they can't see that can't be lost in a flood, tornado, hurricane, or destroyed by our tasmanian-devil Brandon!

It's filled with laughter, tears, and we hope unmistakingly to others, - the presence of God.

That's all  the wealth we care to have.

That's all the wealth we need.

And yeah, they'll hear alot of the stuff most people try to hide.

Shoot -- I share thinks daily that others would shudder to utter!

I at times yell. 
My husband at rare times, letting his frustration come out. 
My typical son sometimes acts like a typical teenage son.
And my not-so-typical son is all the time his loud hummy-hummerson self.

It may be embarrasing, it may be irritating, but it's real.

Life does get tough and we do make mistakes.

We've said things we've regretted to each other; but we've never regretted the blessing that has stressed us to the point of having to say we're sorry for those stupid things to each other we've said.

But in the dysfunctionalness of our family at times, and in the non-existence of any typical normalness, we've manage to function.

We have consistently stuck it out, no matter what the it was.

And for the it, for us, there is no self-help book to solve it in 5 steps or 5 weeks or less. 

It, is for the most part until prayers are answered, - lifelong.

There is no option to leave it.

There's no way to avoid it, go around it, get counseling to solve it, buy a cure to fix it, or to even deny it.

Only the option of depending on the only One who can truly see you through it.

I hope they see that, and then go back to their home with the feeling that the things that trouble them there, aren't so very bad in comparison.

That maybe they are making life a bit more complicated or extravagant than it needs to be.

In seeing all that we can't do as a family, I hope they would not take for granted the things they can do with their own, yet probably don't because of selfish individual "me" pursuits.

Where we can't all do things together, we have learned to divide and conquer in doing all things.  My husband and typical son have created great bonds in service to others on Saturday's; while I have served in caring for my son so they could do that.

The fact that our family has spent more time in serving somewhat seperately than vacationing perfectly together, doesn't mean we've missed out, it means we've instead been given the opportunity to do what disciples of God are called to do...serve others and not always self.

Creating memories where we can go, instead of wallowing in misery because we can't go.

Ever more so grateful for those who chose to serve us instead of themselves, so that we could on rare occasion, all go somewhere or do something together.

And even though they would see our marriage perhaps more as us being two doctors giving shift reports to each other as to the status of the children, household, and honey-do's; I would also hope they see it as something held together by something perfect circumstances could not ever provide for.

That we've stayed together despite no regular date nights.

Despite the lack of regular, meaningful communication.

I would hope they learn that you have to find a way to keep a committment, when everything in you screams how much easier it might be without that committment.

When you have no more energy for that committment.

That's where in that strand of only husband/wife, the third strand of God comes in to keep the braid, braided.

And then when you get the chance for a date night and meaningful conversation, it's that much more meaningful.

It's not taken for granted.

It's like a new marriage, each time there's a chance to have a marriage!

After a weekend of poop, floods, humor, and horrors, - they might wonder how we don't drink, beat our dogs, or do drugs to cope.

After a week of witnessing our insurance denials, seizures with no answers, ARD's that get nowhere, and dealing with policymaking absurdities, they might view a bad day at their office as not such a bad thing.

After a month of witnessing the seriousness of us dealing with some stuff where even the God we hold close in our heart seems silent - to see that we still love Him, we still have hope in Him, and we still trust Him.

For sure after that experience, they would view our life as uncontrolled chaos.

But our chaos is controlled.

We are a well-oiled machine that only occasionally has the normal slip-up in having a neighbor call us from the park because our son slipped out of our 'forgot to lock it' back-yard gate.

Only occasionally do we take the last sip of our drink and realize as the gfcf bread-crumbs from the bottom hit our lips, that we didn't quite put the cup far enough back behind the basket on the top of the refrigerator.

Only occasionally does Matt find that Brandon slipped in his 'forgot to lock it' bedroom to find candy wrappers and half eaten candybars all over his bed.

Only rarely does Todd have to come home from work, take off his shoes and roll up his pants to wade across the floors to get the shop-vac because of  the  'forgot to lock it' bathroom that flooded because a sink was turned on for a drink and never turned off.

I have to sit here and chuckle at the thought of a stranger spending time with us then running out the front door screaming "Get me outta here!"  just as fast as they can from the experience.

We've had attendant-care providers do that.

Even a few relatives.

Heck, some days I'd like to join them.

And that's perhaps the best thing our Life with Autism has taught us.

That we wouldn't.


Loren said...

Great Post Michelle!! Thanks for sharing the humor and frustrations that are so common to this Blessed Struggle.

K.T. said...

AMEN!!!! AND AMEN AGAIN!!!! So often I have also laughed to think what others must think on their first visit! I even had our neighbor say he doesn't know how we do it and he'd be drinking a whole lot if it were him!!

Anonymous said...

God Bless you. I am so glad you are still strong in your faith and that your family is a team. You are a witness.