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 18, 2013
It always amuses me because of how they so symbolize our "Life with Autism" and how so very much has changed since our life became one with autism in it. I'm haunted by all the negative that autism has brought to our home... Isolation, Challenges, Financial issues, trying to find medical care, let alone proper, adequate, or exceptional medical care. Just medical care appropriate for autism. The list of those negative things could go on and on. Autism is that all-encompassing. At least our kind of autism is.
But Todd's shoes make me think of the positives "Life with Autism" has brought to our lives. They make me smile. (Ok, once I quit growling from the trail of mud from the front door to the garage.) Smile thinking of where Todd and I would now be if in autism-free yuppiness. Two careers, two incomes, valuing things over people. We would never have owned muddy shoes. We would never have a dirty house. We would be able to afford maids to clean our house and personal trainers to come to our house and heck, work out for us while we sit by the pool and sip our spirits. Gah. I just have to laugh at who we would have become had it not been for autism.
Since we do now have life with autism, we are deeper. We no longer value the accumulation things, we value relationships with people. We love dearly our community of friends who have helped us through our Life with Autism. The prayer partners in our church who have prayed us through our darkest of times of that life with autism. The few family members who perhaps still have no clue what our Life with Autism is really like, but who stay connected with us in some way -- making us feel less isolated. We are one income yet have been richly blessed by understanding the true value of money and the true definition of need, versus the shallowness of wants. We have a non white-glove Martha Stewart house. It's tidy, but we have cobwebs. At any given time one can see dust on our ceiling fan blades. My wood stairwell banister has Brandon's teethmarks all down the top of it. Our kitchen ceiling has splotches of dried smooshed fruit and applesauce from our never ending supplement taking wars where Brandon most usually wins and the spoils of that victory get splattered on the ceiling. The white ceiling. Pretty soon I'll be able to pull off how we are the latest in home decor by having a polka-dot paint job on our ceiling.
Even our clothes reflect our Life with Autism. I like to think my wardrobe would be vastly different had it not been for autism. I'd be a properly dressed woman, wife, mother, Christian. Now, my wardrobe reflects the Warrior Mom of Autism I must be. I wear mostly Camo & Combat Boots. Spend just one day in the life of someone who lives with true autism, not the commercial or celebrity autism, and you will see why. I can't speak for everyone, but for me "Good Housekeeping" has been replaced with medical journals and research abstracts. That changes you. It has changed me. It has changed my husband and I. To survive autism in our lives, in our marriage, we've had to adopt the mental attitude of a soldier in combat. From dressing like one to training like one. Which is where the picture of Todd's boots comes in. You'd think we have enough crazy in our life with just autism. But that's another way autism has changed us. When we get to "have fun" or go on vacation, or even workout -- we do it running a hundred miles an hour with our hair on fire. Or as Todd does, with combat boots late at night in full Camo running through the woods, though the muddy drainage ditches, being at times stalked and hunted by suburban wildlife. In the rain. Oh, that's how we know God truly loves us, when we can do those things we love to do -- running in the woods at night for Todd, walking the Nature Trails for me during the day -- in the rain. In the pouring, drenching, soaking rain.
What joys we would have missed if not for "Life with Autism."
And perhaps the best way autism has changed us, is in understanding that to thrive, we've had to add humor to all of that.
Lots and lots and lots of humor.
"And let us run with perseverance the race marked out for us...."
Lace up yer shoes ---life's gonna be muddy at times but you just gotta put on your Camo & Combat Boots and run right through it!
October 1, 2013
A hiding place
I don't have forever or time to waste
So don't let me be lonely
I wanna shake this winter coat off my sleeve
Dust off a record and just be free
Oh don't let me be lonely
No don't let me be lonely
Those lyrics are from a song by The Band Perry, Don't Let Me Be Lonely. I think lately they've been my "Life with Autism" lyrics. I have felt at times that I just want to hide from the disappointments. I don't have forever or time to waste on these blasted seizures that plague my son. I want to shake the winter coat of "Life with Autism" off my sleeve. I want to dust off my son's limitations so he can just be free.
What made those feelings worse is that the other night after he had been sleeping so very well for a couple nights prior - he decided to be up all night. I had thought I would capitalize on my opportunity to catch up on sleep by taking a Benadryl so that I could get some deep sleep going for once. Bad idea. I started hearing voices. At first I thought I was in a horror film with the villian-doll "Chucky" giving me a tour through Alphabet Town. I kept hearing music and letters of the alphabet and then after brief moments of silence an evil voice saying, "Come and visit the town again, Goodbye!" Over and over again that's what I heard. When I finally realized I wasn't in the middle of a nightmare or a horror film, yet still hearing that evil voice, I opened my eyes to see just what it was I was hearing. In my Benadryl-stupor I half expected to see Chucky standing in the doorway smiling at me with his evil blood-scarred face. But no. No Chucky doll, no horror movie, no nightmare. It was something far scarier. Autism.After.Dark. It was Brandon in his room down the hall, up at 2am playing with his electronic alphabet game. In the dark. As I got up and stumbled to his room to check him, change him, the sheets, and destroy, er hide all the electronic toys, I remember thinking on my walk back to where I was sleeping ---- Why God, why? Why do we have to do this again? He was doing so good. I can't express how disappointed I was as I continued my barrage of questions to God. Are you there? Do you hear me?
I felt so lonely despite knowing that I am far from lonely. I have a wonderful husband, I have family, I have prayer partners in our church, and I have an autism community of friends. Friends I may never get to see in person, but who are always a click away. Yet when it's "Life with Autism" and you're stumbling around at 2am arguing with God in a Benadryl stupor, - you feel alone! At least I did. I guess that's why I have to constantly bombard myself with HOPEISM, with Never Quit, with NDCQ. I have to have a mental attitude superior to my circumstances if I am to thrive in this Life with Autism. If I'm to survive 2am wake-up calls. Those times of disappointments, -the things most often not written about or shared about -- but yet that are as profound and powerful as the success stories you do hear about. We can read all day long about the many hard earned successes and victories in autism -- and we should -- those stories give us hope. I've shared many stories on this blog of hope in our Life with Autism. Brandon has come so very far. But what if you have been on this journey for so long and have done so much - yet still must battle two steps backwards for each step forward? That has seemed to define our journey for whatever reason. What Hopeism is there to impart in that? We tend to not speak of those things. Those stories aren't as pretty as the other ones. We make it sound like if you do this, go there, and spend that, ---that you too will have those successes. Many do. Many don't. And I think "the don't" stories are just as important. How you get through those times. How you still hang on to Hopeism and never let go. How you never quit.
Like Sunday... Oh how I anticipated last Sunday. I have big goals for Brandon. Huge. But for the day-to-day practical goals, I count our days as seizure-free days. I hang on to the Hopeism of 5 days seizure-free. That's a lofty goal for us. And then I sacrifice so much and work so very hard in achieving it. Watching his diet so nothing triggers yeast to flare. Spending such great amounts of time executing "Mission: Supplements" daily. Multiple times daily. Researching proteins for calories for him and the most pure elemental and amino acid protein powders for him. Careful not to over-stimulate. Reading. Researching. Praying. So last Sunday when we hit half a month, fifteen days seizure-free, I cried tears of joy. No one could be more proud of such a victory. No one could be more humbled by that victory. I savored it as any autism mom would savor any such hard fought victory. I savored it, celebrated it, and then set out to break that record. Earlier this year we hit 28 days seizure-free. Almost a month. We haven't hit that since. Once we hit a full week seizure free, my goal was then two weeks. Then a month. If we can make fifteen days, half a month, then we can make it a full month seizure-free. I have to live by that kind of Hopeism no matter how elusive it has been these past four years of relentless seizures. Then Monday morning came. With it, cluster seizures. Talk about a buzz-kill. Laying there beside him in bed that day reminded me of that song again. I had to laugh, in the song there is a line that goes like this: Well the night rolls on like a long lost friend, 'Til the sunrise bleeds like the bitter end, Don't let me be lonely... I had to chuckle, the sunrise truly did bring a bitter end to our seizure-free streak!
(But not to my HOPEISM!)
I'm thankful for my faith that allows me to believe in a God who is deeper than my disappointments. Who loves me through my loneliness. My greatest success stories in my Life with Autism have been those that had nothing to do with achievement, but everything to do with having an attitude of accomplishment. And that is really the only thing I have total control of. My NDCQ coin sits on my desk, and on one side it says: I can only be defeated in two ways. If I give up or if I die. And really, as a Christian, death can't even defeat me, which leaves, "If I give up" - which I won't. There is such sweet success in that. Success worth sharing. That's what I want Brandon to somehow know. When he screams in pain or convulses in seizures, I want him to know that I may not have been able to fix it or take them away, but I never quit trying to. That while I couldn't take his autism burden from him, I carried that burden with him. That's also what I want my "other son" Matt to have seen in my life. To always see. That sometimes things don't work out the way you hoped, but you still press on. You have an attitude superior to your disappointments.
It was so odd being reminded of those things by a Country song with lyrics that in places could be deemed quite depressing. But for whatever reason, that song cheered me up from recent disappointments, short-lived victories, and regression in areas I thought we were past. Many lyrics in that song made me think of verses to cling to in those times I feel lonely... In fact, late at night I've been singing that chorus "Don't let me be lonely" as if in prayer to God...."Please, don't let me be lonely in these thoughts, through these disappointments...." One morning I woke up after what seemed like only a few fleeting moments of sleep... I can't tell you that I heard God's voice in the night, I didn't. But I can say that I know with all that is in me that God did reply whether I heard it or not. I can picture him looking down and in a soft whisper answering, "I won't...."
When we give God the keys to our car and the keys to our heart and let him drive, He promises that he won't ever let us be lonely.
I will give you rest --- Matthew 11:28
I will help you --- Isaiah 54:4
I will supply all your needs --- Philippians 4:19
I will never leave you or forsake you --- Hebrews 13:5
I will strengthen you, I will help you, I will uphold you with my righteous right hand --- Isaiah 41:10
I will fulfill to you my promise, I will hear you, I will be found by you --- Jeremiah 2
I will direct your steps --- Proverbs 3:5
I will take revenge, I will pay them back --- Romans 12:19
It will be worth it --- Romans 8:28
He is my saving grace:
"For it is by grace you have been saved, through faith - and this is not from yourselves, it is the gift of God - not by works, so that no one can boast."Ephesians 2:8-9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
2 Corinthians 12:9
He is my hiding place:
"You are my hiding place; you will protect me from trouble and surround me with songs of deliverance."
He is the freedom for Brandon that I so desire:
"Now the Lord is the Spirit, and where the Spirit of the Lord is, there is freedom."
2 Corinthians 3:17
When I'm laying there weary and worn as the night rolls on like a long lost friend, 'Til the sunrise bleeds like the bitter end, and I'm asking God to not let me be lonely ---- all I need to do is "be still and know that He is God."
I just love that song because it reminds me that I am never lonely. As in the chorus of that song, He will never let me be, let me be, let me be lonely -- ever. Not at 2am. Not on a Monday morning abrupt ending of a seizure-free streak. Not in the good, the bad, or the ugly. Not in anything. Not ever.
"I am with you always, even unto the end of the world.”
There is such HOPEISM in that!
My HOPEISM that's such a beautiful thing!
Click here to listen to Don't Let Me Be Lonely