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.

November 24, 2014

Thankful for challenges...

Ten days.  Ten whole days seizure-free.  Not since May 11, 2014 has he gone that long without a seizure.  It's hard to describe how wonderful it has been to have him not down for the count because of seizures.  It's hard to describe how wonderful it's been seeing him eat those precious calories seizures starve him of so very often.  It's hard to describe the smile that's been on my face, though I've tried to temper it with the caution of what might happen in the next moment.  Reflecting on that now, I do regret that.  I allowed myself to not fully feel the joy of our seizure-free moments, lest that joy piss off satan and jinx the streak.  I allowed myself to breathe more freely, but not fully exhale.  I'm sure that's just the unfortunate "Life with Autism and Seizures" conditioning I've been an unwilling participant of.  When you've lived in crisis mode so long, it's hard for your body to adjust to the normalcy everyone lives with daily with only a few temporary exceptions.

Then this morning.

Our streak abruptly broken. 

The seizure-free counter reset.

But I remain thankful.  Hence the title of this blog.  It comes from our sermon yesterday in light of the upcoming Thanksgiving Day.  Psalm 118 says to "Give thanks to the Lord, for he is good; his love endures forever."  And it's true.  Because His love for me endures no matter what, I can have the strength to endure no matter what I must.  Because His love endures, my HOPEISM can overcome. I don't learn that in being thankful for seizure-free days.  I learn that from seizure-filled days.  As our Pastor was sharing his message about being thankful for hardships, I felt like perhaps in all the things I do wrong, I might have been doing something right in sharing the struggles of our journey not to showcase our scars, but to highlight who has helped us endure the pain of them.  I don't want autism or seizures in my life.  Make no mistake about that.  The thankfulness for the things I've learned because of its intrusion in my life, I do cherish.  Only in my agony have I learned true faith.  Only through my deep sorrow have I learned true joy.  Only in the deepest pit of despair have I seen the brightest light of HOPEISM.  Yes, I can truly say I am thankful for the challenges in my life. 

Our Pastor shared these verses, those verses that I have depended on for my own HOPEISM.

James 1:2
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.  Perseverance must finish its work so that you may be mature and complete, not lacking anything.

1 Peter 1:6
In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.  These have come so that your faith --of greater worth than gold, which perishes even though refined by fire --may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed.

James 1:12
Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.

Even before the message, during the worship service as the song Amazing Grace was sung I was so overcome by the thankfulness of our ten days seizure free, that I found myself grabbing my husbands hand and walking to the altar.  So unlike my introverted self, but I could find no other outlet for the thankfulness than to be as close to God as I could get in that moment.  I'm not sure why I was suddenly overcome by that, we've been through hard times many times.  I guess like what the Pastor would later share, it was the pure thankfulness in those seizure-free days that were born from the challenges so many weeks and months brought.  It just meant more.  You can never fully experience how amazing grace really is until you've wept endlessly in begging God for mercy.  I knelt there with my husband with tears of thankfulness for those ten days Brandon's seizure chains were gone.  That burden for him lifted.  For how during those ten days he was set free.  My God, my Savior had ransomed him. Like a flood His mercy reigned.  Reminding me of His unending love, His amazing grace.

How again in Psalm 118 -- He is good and His love endures forever...
I cried in thankfulness for how the Lord has indeed promised good to me, and Brandon.  His word my HOPEISM secures.  How He will my shield and portion be, as long as life endures...

Our Pastor's message Sunday was nothing new for those of us in the autism community.  I think that's one thing for certain that we "get" -- being thankful for the little things.  Most days, that's all we get, the little things. If that some days!  A day with no meltdown.  No crapisodes.  A few precious hours to sleep after weeks living in sleep-deprived delirium.  The sweetness of the tiniest victory after the bitterness of so many gigantic defeats. Make no mistake, where I may have inspired those whose challenges may not be as intense as mine, I am greatly inspired by those whose challenges are far more significant than mine.

My Pastor's message was put to the test this morning.

In being thankful for challenges.

My husband will be out of town for the entire week.  Brandon hardly made it to school last week, and will be out all this week.  He not only had two Grand Mal's this morning - but after the first one, I was met with having to clean him up after a bowel accident.  To have to assist with that aspect of toileting in your adult son on a good day is bad enough.  But to have clean that up where he is out cold and a brick of jello on his bed is quite another thing.  That will test your thankfulness resolve for sure.  Thank goodness my husband was still home to help, and as he lifted him to mat on the floor so I could change sheets, I found myself standing in a pool of warm pee.  Brandon had another accident.  It's as if God was giving me an extra credit opportunity on the thankfulness in challenges.  I like to think I passed.  We passed.  All we could do was laugh.  I had poop on my hands and was standing in a puddle of warm pee.  In my socks, to really soak it all in.  Todd was trying to dry him off enough to be able to even lift him out of it so we could clean him up.  In our "Life with Autism" hilarity, that was what we call a "non-recoverable" incident.

I think more than the thankfulness we have in our challenges, in how we are most thankful that we can see them for what they are -- opportunities to draw closer to God -- we are thankful for the humor which sees us through them.  The amazing grace that gives us reprieve in them.

There will be seizure-free streaks - hopefully one day as in the song those seizures will dissolve like snow.  One day, please no God, Brandon's light could forbear to shine and God could call him home.  Us home.  I can't know what tomorrow will bring.  All I can do is be thankful for the victory of today or the comfort of God in any defeat of today.

And simply be thankful that no matter what, God is forever mine.

Our challenges are but for a season.

His love for us endures forever.

Before "Life with Autism and Seizures" I was blind to that.

But now I see.


HOOYAH,
HALLELUJAH,
&
HOPEISM!



1 comment:

Anonymous said...

Amen sister! My opportunity to be thankful was just yesterday. My son, while not one who has seizures, has random and often unpredictable violent outbursts. Yesterday his attacks caused us to cancel family plans to go to the city and have a fun day out (not unusual) but this time Grammy was visiting. She didn't get it, got pretty upset on seeing everyday life here and got all emotional as I explained to her, this is life, she said she understood and it upset her and ranted for a couple minutes, and I told her you don't understand, you get to go home, this is a 24/7 battle for us and it's been like this for years. But that God is good and he teaches us through suffering. I'm reminded often of that and it keeps us close to Him. In that we can be thankful can't we? How often as I am cleaning up his teenager sized pee messes I am reminded that Christ told us to was one another's feet, what less desirable job was there then? And what less desirable now that cleaning up poop and pee messes? So let us remember that even then we are learning to be more like our Savior as we die to self and serve others. It's a blessed calling, but oh so painful. The journey is rough, but He is carrying us. So many ask me, what if this? What if that? What will happen when he is bigger than you? And I have to say, God gives the grace for each day and I'm not going into what ifs. He is faithful, He will provide! And I'm trusting Him, we live by faith not by sight :) May He bless you today sister, you aren't alone, and I am thankful you are putting into words what it's really like to live in the depths of this.
- Tara