Back to reality...
I've been at my desk off and on for a week trying to find the words to reflect on thirty years of marriage.
And not just your typical kind of marriage, but an autism kind of marriage...
I even went digging through stacks of pictures in hopes of finding some inspiration to commemorate such an occasion. I mean, for a marriage (add in life with autism, seizures, and a side of PANDAS) to last this long in the midst of today's drive-thru-disposable society is worthy of some sort of fairy tale story, right?
A million dollars?
I guess a dose of "Life with Autism, Seizures, and a side of PANDAS" marital truth will have to suffice.
It was hard looking at all those pictures.
It brought back the floodgates of should have been, could have been, would have been if not for... I mean, as parents of young children you expect it to be hard. You expect your marriage to time together to take a back seat to raising kids. You expect the sleepless nights and sacrifices. But then you know that ends and then you can pick up where you left off, so to speak.
Our child is twenty-four years old.
We have yet to be able to have that transition. We've been in the starting blocks with the adrenaline rush just waiting for the gun to sound so we can go full speed until we cross our finish line. It has yet to be fired. I have to laugh at how if it ever does go off I'll be so stiff from being in the starting blocks so long that I'll fall flat on my face and not be able to go anywhere!
(Heck, looking back at our pictures of our early years in "Life with Autism" before all the seizures and PANDAS - I had no clue either! I mean, we were bigger, stronger, and faster than a young Brandon!)
And I pray they never have to have an inkling of a clue of what kind of "enduring" our marriage has had to have...
I guess to even begin to share about what kind of marriage we've had since autism, how we have learned about what loving someone and true commitment to that person really is; I would have to go back to Valentine's Day 2010. It was on that day Todd and I stood in a court before a judge, and when he asked each of us if we would vow to protect our son and his rights for the rest of his adult life, - we said, "I do". Knowing full well that saying "I do" to him, meant giving up yet another piece of us and the "I do" to our marriage.
But we did it...
Because only in thinking about and fully realizing what his vaccine injury/autism means to him, could we understood what our marriage commitment truly means to us. And what unconditional love truly is. You may marry for love, but you stay married because of unconditional love.
(And it's how I do boldly say that any marriage that does not have the magnitude, --the length, depth, width, breadth of the all encompassing consequences of vaccine injury as ours does, --you've not understood what true commitment is, nor has your marriage endured on this lifelong level. Nothing compares to what this community of marriages have to face, and for the length of time they must face it. Nothing.)
Brandon cannot divorce his autism when it hurts, gets too hard, gets old.
Think about that.
Sometimes the weight of trying to be everything to everyone gets so heavy that I just want to run away. But then I think of Brandon and his vaccine injury. His seizures. His PANDAS. How he has no choice but to endure. To fight. To survive.
Our marriage deserves that same mindset.
We see all the pain, frustration, and limitations his autism places on him. We see in him all that he has lost. We know what it's like to want to be free of what those things mean for us as his parents and caregivers; and can hardly imagine how that impact is a thousand-fold for him in being the one who must ultimately bear the weight of his injury and all that comes with it.
Yet he must.
He has yet to be able to think or say to all that affects him, "Ok, I'm done!"
"Autism, I'm packing up my things and am out of here!"
"We had a good run of it autism, but it's over!"
"I've found someone way better than autism!"
"We are never, ever, ever, getting back together again, like, ever..."
(cue Taylor Swift song)
That is the depth of marriage commitment someone like us has to have with autism.
Brandon has no choice but to deal with what hinders him.
Therefore quitting cannot be an option for us for lesser things.
And trust me, anything other than life with autism, is a lesser thing.
Much like there is no magic potion to restore what was lost in an entire generation of vaccine injured children - there is no marriage counseling, marriage seminars, marriage books, or marriage retreats that can come close to advising a couple how to endure a vaccine injured marriage.
There's just not.
For one, there's not even a way for most parents to go to such things. No one has even understood that basic first step yet!
Those of us whose marriages have endured, have had to learn how to do so essentially on their own. We are thankful, grateful, and blessed that for us, our faith has been the rock where each of us has been sand a time or two (or three) over the years.
While many things have happened to cause us to question that faith a time or two (or three), it has never been washed away.
Our faith is a faith that has been forged not by conviction, but by fire.
And in this rock, paper, scissors game of married with autism, fire wins.
While God has been, is, and always will be the mountain; that I have been a pebble, and Todd a rock, is only because of the boulder Brandon is. He has had to hold fast through the storms he faces; and in seeing the incredible amount of strength he has to survive all he must survive, we have found a great strength for our marriage to survive all it must.
For as long as it must.
We've endured the tenderness of a rare moment to actually get to look at each other and share a thought with one another; and we've endured the eternal heart-stopping terrorizing moments of a PANS flare. We've cherished the bittersweet Kodak moments we've managed to capture in seeing Brandon without his autism, and we have tried our best to delete the horrific, sometimes bloody moments of what that autism has done to Brandon.
With the exception of a few, we've been abandoned by family who should have been (and be) our closest allies; but in their place we've found a tribe of warriors, most of whom we have never personally met, who have stood beside us and fought alongside us and who have helped us up each time we have fallen down.
There have been fleeting marriage moments where we could get in thirty seconds or more of a conversation before being interrupted by humming or the demands of autism; and there have also been many more weeks or months where we felt more like nurse and doctor giving shift reports as one clocks in and the other clocks out in caring for our son.
In a marriage that thrives on putting each other first, because of how deep the claws of autism are, not only has "each other" been last, but the "marriage" hardly made its way on the list at times. No marriage seminar advising regular date nights to keep the love kindled is titled, "Date Night, table for three please!"
In reality our marriage has been so tag team based that it's like the child of a divorced couple -- one week Todd does what he wants on the weekend, the next week I do, and then when Brandon is feeling good and we're feeling brave, we all attempt something together!
And there's not a thing we could (or can) do to change that.
Not on our own at least.
We needed (and need) a village to help, but sadly more often than not we've found ourselves on a remote island with way too many other husbands and wives in the exact same situation.
Autism is spelled C.O.N.S.T.A.N.T D.E.M.A.N.D.S. It is not something that can entertain or care for itself for any length of time. It is not something that can go out to play, be put in front of the television, or sent off to a friends house or to Grandma's for the weekend.
Oh, how we've longed for those opportunities - to simply be in our own home by ourselves for just a weekend or two here and there.
Despite the challenges, we have done our very best to live well, laugh often, and love much in this crazy, mad, wonderful marriage journey.
We've had memorable's, forgettable's, regrettable's, and in Todd's words, "non-recoverable's".
There have been moments we've laughed so hard we couldn't catch our breath, and moments we were sucker-punched so severely it knocked the wind right out of us.
We are ever so thankful & grateful to those who have been our tribe; those who have been a blessing in helping to ease a burden, pray us through, provide respite, a vacation, a bucket of water for our journey through hell.
We have cherished the times on top of the mountain, and have loathed the times in the valleys.
And we have been humbled in having to admit that it has been in the those valleys where we have learned the most about life, love, marriage, fairy tales...
Because of autism, we've been apart more than we've been together. But because of that, our precious times together have meant so very much more. We have learned to take nothing for granted.
It has only been through our journey from the hell of autism to the HOPEISM our faith gives us, that we truly understood what a fairy tale marriage is. For us, it will have nothing to do with happily ever after. It just won't. Vaccine injury rewrote such endings for an epidemic number of marriages (the ones that have survived) and unless God chooses to completely heal our son, or calls him home before our time, there will not be peace in our final marital sentence knowing we leave behind our most vulnerable, completely dependent son who we love with all that is within us. Happily ever after will be for those who leave behind children and grandchildren who can live independently and take care of themselves...
I think perhaps though, we've learned something far better...
That a fairy tale is more about slaying dragons than happily ever after.
And I think I can say that as the King and Queen in our fairy tale marriage, we have slayed a hell of a lot of dragons to get to this point.
The most fierce dragon being divorce.
We've won some battles, lost some battles, and our marriage has been beaten and bruised beyond recognition at times by those battles; but we've never quit.
Each dragon bravely fought with all the strength we have.
There has been no fairy godmother, no carriage, no kingdom...
Only a sword:
"Blessed are you, Israel! Who is like you, a people saved by the Lord? He is your shield and helper and your glorious sword. Your enemies will cower before you, and you will tread on their heights.”
We can't know what the next years of marriage might hold... And unless society changes how it supports those with autism, unless the government changes how it financially helps those with autism, and unless families, friends, and the church fully grasp the enormity of autism and step up to help in whatever tangible ways they can -- our marriage with autism will only get harder. Life with autism will continue to steal the very air a marriage needs to breathe.
All we can cling to with all the strength that is in us, is the HOPEISM that God will continue to sustain us, provide for us, and be that shield of protection around us with His Love, Grace, Mercy, Faith, --- and Humor.
Lots and lots and lots of humor...
A trip down our memory lane...
|It was thanks to our Navy-son, Matt, who through the path he chose to pursue, introduced us to the warrior mentality that would get us through the many battles that would be coming our way soon after this calm in the storm.|
|Baby shower! Where was my tribe then to guide me in the wisdom of how to prepare for our first child! Oh, how I wish I had my tribe back then to warn me NOT to allow all the things I allowed!|
|We have certainly had our share of high's on this journey. We cherish these few precious times together of being able to go, do, and be...|
|Laughter. It has been our saving grace. The precious few and far between times we've had to be together, we've, .....needed adult supervision.|
|I think this picture captures the essence of our marriage in "Life with Autism, Seizures, and a side of PANDAS" in how you freeze-frame the good times, and delete from the camera the bad times.|
|Endurance. That's what a marriage takes. But oh, when you cross that finish line, the sense of accomplishment is worth all the tears shed to get there.|
|Marriage Moments... courtesy of Team Guppy 1.0 who were caring for Brandon so we could spend "Christmas in Cali". And yes Todd, I still remember why you have that smirk on your face! Not funny! :-)|
|Marriage Moments, thanks to those who offer to be the hands and feet of Jesus for Brandon so that we can run a hundred miles an hour with our hair on fire, er, full of mud.|
|In a marriage like ours, "Date Night" has often been during "Day Surgery" for our son...|
|Marriage Moments thanks to Camp Blessing, TX|
|Marriage Moments made possible only because of those who offer to care for Brandon.|
|Oh how we cherish those moments of solitude, peace, tranquility when Brandon sleeps...|
|The key to marriage is to laugh until you can't breathe. This was yet another "Date Night" during "Day Surgery". And another reminder of why we need adult supervision when out in public. Who knew taking a selfie could be so hilarious!|
|Unleashing our inner hippie while Brandon is at Camp Blessing, TX|
|Warriors. Till death do us part! HOOYAH!|
|We still do...|