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.

February 4, 2014

When HOPEISM hurts...

Blessed are the tears that fall
Clean the windows of the soul
And usher in a change of heart
And bring a joy that angels know

I thought about those lyrics in that song during the wee hours of the morning as my own tears were flowing.  The silent, sobbing tears of a mother for her child.  Her child with autism, seizures, immune dysfunction, and a whole other buffet of adverse reactions to vaccinations.  When I heard my son cry out in frustration at nearly 3am, I trudged into his room.  I saw that he was still in bed.  Wanting to sleep.  Trying to sleep.  But simply could not.  So I laid down beside him.  He settled down after a bit.  As he tried to go to sleep, I could hear he kept swallowing. Over and over.  And I wondered, "What now?" What is this new thing?  This thing that is keeping this sweet boy who wants to sleep, from sleeping.  Allergies?  Some throat issue?  Reflux?  What is making him swallow over and over...  And I went through all the scenario's of how I would even check that out.  Upper Endoscopy?  It would take months to find someone to agree swallowing over and over isn't just a "behavior" or isn't simply "just autism" to then jump through all the hoops of having that done under anesthesia.  As in no lifetime of ours, would he allow that as an office procedure with mild sedation.  Does he have fluid in his lungs or something from seizures, a cold, and how on earth would I get him to sit still for an x-ray?  His bed is raised, I made sure he was propped up even more on pillows in case it was allergy drainage...  He seemed still for a few moments so I tried to sneak out and go back to bed.  Before I got there I heard him doing that swallowing sound again and then his familiar crying out in frustration.  He wanted to sleep.  Oh how rare that is sometimes in "Life with Autism" and how cruel that is how when he wants to, he can't. 

I laid beside him again, helpless to do anything else but be there and go through it together.  I love that about Team Guppy.  Todd and I have always tried to be there with our children and go through any hell they are going through.  Right there with them.  Helpless to help them through it, but right there with them through it.  And as I laid there thinking about the cruelty of Brandon actually wanting to sleep but couldn't, I couldn't help but start silently sobbing out to God.   Asking him how he could be so cruel to Brandon like that.  Telling him how I have experienced God through Brandon's autism and how it has changed me, all of us, but how for once in a very specific way, I would like Brandon to experience God in some aspect of healing.  Every ounce of weight is a struggle for Brandon to keep.  Every day seizure-free is a struggle for him to get.  Every seizure is a struggle for him to even survive.  Every everything is a struggle for him.  Why does simply sleeping have to be one too?  Why God, why can't you heal that one thing that is causing him to do that?  Why can't you give me divine wisdom to even know what that one thing is and how I can fix it?  Every time Brandon made that swallowing sound, I sobbed and asked God why he couldn't just heal that.  And then Brandon would do it again.  And I would be reminded of how cruel I thought that was.  And then I sobbed some more.  And it made me angry.  Angry at how I was laying there angry over acute prayer issues I hear about.  People having a one time surgery, people with illnesses they can and will fully recover from.  These are people who have all lived full, typical lives.  And who will again afterwards, with a few modifications perhaps, but still a fully functioning life.  And then I think of the sweet chronically ill boy laying beside me who has so many medical dysfunctions, and who has had them for so very long, and who wants to sleep but can't.  Who can't even tell me where it hurts.  I'm not sure which I was most hurt by, those ugly thoughts I was thinking, or how cruel I felt God was in seeing my son simply struggle to get the sleep his body so desperately needs.

Oh how I wanted Brandon to experience answered prayer in some of, one of, those specific prayer requests.  We have so many a'la'carte' blessings, but last night in those wee hours of the morning, I wanted the main course answer to prayer for once. And as I those silently sobbing tears ran down my cheeks, I let God know just how cruel I thought that was that this sweet little boy didn't at least deserve that.  All he wanted to do is sleep.  And he couldn't.  And I had no clue how to help him except to keep crying out to God for him.  Yes, even in anger.

Sometimes HOPEISM hurts.  Mary knew that.  The only thing comforting me last night was knowing I wasn't alone.  Mary had to watch her son being beaten.  Humiliated.  Hung on a cross to die.   Jesus must have had some of the thoughts maybe that I did as he was in a desert fasting or days on end and being temped by satan to the point of sweating blood.

You need to know you've got a friend in Jesus
You need to know he felt rejected too
Humiliating pain and unjust treatment
He's been there so he knows what you've been through

HOPEISM simply hurt last night.  For my son, for me, for his future.  When I'm gone one day, who will hear him cry out and get up in the wee hours of the morning to trudge down the hall to lay beside this sweet boy and comfort him, stroke his arm, cry out to God for him?

Who will weep for him?

And God will send a merciful Peacemaker
Comforter of all of those who mourn

It's a personal faith crisis I had to deal with last night, and it's a very real societal crisis that has yet to be dealt with.  They are thousands of Brandon's out there who need medical help now, who will need such lifelong care.  But as for me and this new day where the rain is softly falling and at 10:30am Brandon is finally sleeping, I have to simply acknowledge and accept that sometimes HOPEISM is going to hurt.  But always know in my heart of hearts, as I do, that HOPEISM heals in its own way, in its own time.  And that hanging on to the hope in HOPEISM will always be worth it.  Will always be better than the alternative of living a life seeing no hope.  Finding no joy.  I'll probably never understand HOPEISM, but I'll always have have faith and believe in it.  Even during nights like last night, when I never saw it, or even felt it.

Blessed are the tears that fall
Clean the windows of the soul
And usher in a change of heart
And bring a joy that angels know
Psalm 30:5
".....weeping may endure for a night, but joy cometh in the morning."

Indeed it does....

To the NDCQ of HOPEISM of that...