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.

July 20, 2011

When autism bites...

Sometimes I marvel at the simplicity of Christ's story. Christianity and what it means. Even though I know very well it's far from simple. It is a complexity theologians spend a lifetime 'ciphering. So I won't try to. I'll just relate to it as I can, and hold fast to it as I do.

Like yesterday.

It was just another day in "Life with Autism". I picked up Brandon from school to go to Texas Children's for a pre-op appointment for a VNS surgery later in the week.   Halfway there, he had a Grand-Mal seizure. Somehow I get across 5 lanes of traffic without causing a colossal collision and pull over.  I call the doctor's office to see if we should proceed or abort and try again.  But then with "Life with Autism" - you can never plan for when it will be a better time.  In "Life with Seizures" you can never wait for a seizure-free trip.  It may never happen.

So.... we proceeded on our way.

What happened later when we pulled up to the valet parking area, still leaves me reeling with the whiplash of "what the heck just happened".  It's best described as "Brandon Guppy's A Series of Unfortunate Events".  Events that for the first time in my life with autism, allowed me to relate to the many others who must deal with that often, if not daily.

As a mom of a child with autism, I only have two gut-wrenching fears:  1) Death, and 2) Dying.  Numbers three, four, and five would be abuse, neglect, wandering.  And after yesterday, I realized for the first time that I'm not at all prepared for the issue of what would be next in the list, -- restraint.  Of how to control a child I cannot control.  Issues many deal with daily, but an issue I've never had to consider, let alone experience.

As we pulled up into the valet parking, Brandon started to have another seizure, slid down in his seatbelt, and it got tangled around his head and neck.  He freaked out. And until I could stop the car as quick as I could to go back there to untangle him, he had to stay like that.  And by that time, he was scared and screaming and going into a meltdown of epic proportions.  This 5'9" 136 pound of pure muscle and strength child was on the van floor, half under the seat, screaming and thrashing.  The freaked-out valet driver did the only thing he knew to do, which was go in the ER to get help.  In a split-second three ER personnel and an ER doctor come out.  By that time Brandon is even more upset because now not only was he scared by the seatbelt that had been around his head, but he was in a place he didn't like, and surrounded by people holding on to him. All things that made him more upset.  By that time there was nothing to do but allow them to wheel him in the ER where by that time we had 10 ER personnel and myself trying to hold him and keep him from hurting himself.  There were additional personnel trying to get an IV started to give him meds to calm him, because the shots were not doing a thing.  He was King Kong on a "roid-rage".  The strength of my little boy was astounding.  TEN people, most of them men, could not hold him.  Me, his own mother, could do nothing to calm him.

Do you know what that felt like?

It was unreal.

It was like the scene in "The Passion of the Christ". My son, a perfectly innocent child, was the sacrificial lamb bearing a cross he didn't deserve to bear.  Because we could do nothing to contain him even after an hour of trying, we had to restrain him with leather restraints. There he was on that stretcher, bound, scared, hurt, pleading, confused, innocent.  Looking at me with eyes blood-red from screaming for so long. There I was looking through him to the other side only to see satan, autism, standing there mocking me.  "Look what I'm doing to your child...do you see him suffering...can you hear him screaming...."

Mocking me.

I felt as if Mary might have in that scene of the movie.  Here she was, the mother of the most innocent little boy. Her child. The Messiah.  Surely she didn't deserve to have to walk beside him as the beaten, bruised, bloody boy she gave birth to carried his cross to his death.  Mary, -- the mother of Jesus, a King, a Savior, the God who holds the universe in his hands, -- had no power to stop what was happening!  All she could do was look at the blood-red eyes of her son and feel her heart break. All she could see was satan on the other side of Jesus, walking step for step, mocking her. Mocking the Messiah. "Look what I'm doing to your King... do you see him suffering....did you hear his screaming..."

In those moments of unreality you don't understand God.

You don't understand why that had to happen to Him, why Mary had to go through that, nor why what is happening is happening to you. No, all you can do is cling to the happily-ever-after of the story that began once upon a time on the cross. You must have that grace and mercy of salvation in your heart when you can't see it with your eyes.

You must have the Hopeism that everything will be ok, even when it's not.

Like with Mary, the mother of Jesus, you don't understand how she could have lived through that day.  But you know she did. And because of that, you know you will too.

You don't know how her child could have endured what he did, but you know he did and somehow your child will too.

I guess that's why I believe in Christ's story and the Bible with all my heart, soul, and mind.  It's real. I can relate to it. I can be reassured by it. It's not Bill Gates trying to explain poverty, something he's never experienced.

The Reality of Restraints is something I never thought I would have to consider, something I would have never thought possible in the life of my good-natured son with autism... Something only other people must deal with.
Well, Tuesday I was those other people.  Those mom's with no help and an adult with autism they can't control. My son became a client in a center where the only option was leather straps and medication.

In those few hours in the ER, knowing I was there but feeling that surely I wasn't, I bonded with all those faceless parents who are out there but who you don't see, and who deal with this on an all too often basis.  I felt the pain of all those faceless clients we very well know who are out there even though we don't see them, who are being held down and strapped to a bed and medicated, scared and not understanding why.

The image of yesterday that will forever be burned in my memory is that of my son's blood-red panicked eyes staring at me pleading me to help him, and my tear-filled eyes staring back at him not knowing what to do.

I've thought of it over and over, what could I have done different, and there's not much. I could have asked that they just left us alone in the van for my son to calm down on his own. But he was so far out of control that he was hurting himself on the metal from the floor of the van, and I feared he would hurt himself further if he banged his head in the glass. I knew that as strong as I am, I couldn't hold him down myself to keep him from hurting me, or him, in such a confined space. I could have asked that they just take us to a simple room that was empty except for padding or mats like we have at church for those who do thrash when upset.  But ER's don't have those.  There was no where to take him to just allow him to safely work it out until he calmed down.  They didn't have enough help to allow the people to stay there holding him, there were other patients with urgent needs as well.  Sadly, the only option was restraints, and even then, the ones they had were too small.  No one plans for an adult-sized patient needing restraints in a Children's Hospital.

I had a lot to deal with yesterday in having an adult with autism who is bigger and stronger than me - and what to do if somewhere and that happens again.  And I have no more answers now than I did yesterday.

But what I do have, is another fear for my list to add right after wandering...  Restraints. What happens when #'s 1 and 2 above happen to me? What happens when someone's only option is to restrain him and drug him? When I'm not there to reassure him no matter how futile the attempt?

This may not be a popular writing. It's terribly real and no one likes that.

I sure don't.

But what happened yesterday happened to me. As it does daily to some mom, some where.  As it does to some person, in some facility.

And it breaks my heart.

What happened yesterday is another reality of autism that you won't see in an awareness campaign.
It's a reality that often bites.
And hurts.
And leaves scars.



Hilda Bowen said...

You write about an inevitability that will happen to us. I know that if Patrick ever had to go into the hospital, this is the scenario we will face. I do not know if I will handle it as well as you did. God bless you.

Anonymous said...

Amen to that Michelle. That is one of my biggest fears next to 1 and 2. It's not right and it's so not fair. America needs to know the truth.

praying for Brandon's recovery and hopefully he will be home soon in the conforts of his own home.


barb said...

I cried when I red this. You see I too have been there. We had to call an ambulance for my son. The police came with guns and maze. Used regular hand cuff on hands and legs. Of course he fought the restraints and was cut badly. My son is now 24. His dad passed 3 years ago and I don't know what I'm going to do if I have to take him to the hospital again. My biggest fear is that I will get sick or die before my son. I'm all he's got.