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.
March 7, 2012
Too much to bear, too much to understand, -- simply too much.
To have a child with autism, one could learn to accept and overcome. To have a child with autism, epilepsy, GI disorder, and a mystery-illness causing weight loss that he can't afford to lose to begin with, -- is just not fair.
I get that in life we must have "crosses to bear" -- what I don't get, is how life has free reign to keep nailing more crosses on the one you already have.
I don't get how heroes like Dr. Wakefield, who have done more for Autism and GI issues than anyone anywhere, must not only bear the cross of shame that others put on him because of being threatened by him, but must also now bear the cross of lawsuits in defending himself and the financial toll that takes. And not only those crosses, but as if that weren't enough, his sweet, angel of a wife was in a car accident and has a very long recovery road ahead of her.
I don't get how my friend, the person who is responsible for helping me get Brandon out of the public school that did nothing for him and into her school which has done everything for him, and who is the mother of a son who has autism, plus another sweet little boy --- I don't understand how her husband must be killed in a car accident. Her love-of-a-lifetime soul-mate husband!
I don't understand why each and every day I'm faced with knowing I have single friends who have children with autism and whose spouses have left them.
I don't understand why each and every day I'm faced with e-mails from parents of children with autism needing the financial resources that simply aren't out there.
I don't understand why each and every day my phone rings from parents who need help because their child with autism is not getting what the law requires them to get in the public school, but who do not know enough to fight them. And even if they did know enough, they could never afford to.
I don't understand all those things and much more about this "Life with Autism."
I don't understand it to the point where I just want to scream in rage. I want to hit. I want to destroy. I want to simply shut out the pain and not care.
I simply want to hate.
But what I do understand...
You can't do that.
You can't shut out the pain.
Because if you do, this happens:
When you close your heart to the bad in life, you also close your heart to the good in life.
When you close your heart to not feel pain, you close it to not accept healing.
When you close your heart to not feel sadness, you close it to not feeling happiness either.
When you close your heart to keep sorrow out, joy can't get in.
When you close your heart to try and prevent that hatred from seeping in, love can't find its way out.
When you close your heart and reject God, you open it to allow satan in.
When you simply give up and don't care, thus shutting out all the lies and injustice, it means you've also given up the even greater fight to let the truth out.
And as much as life hurts sometimes, especially lately, I refuse to allow those things to happen.
I will keep my heart open to see the beauty, choose the happiness, and experience the joy that life has to offer.
I will keep my mouth open in proclaiming the truth.
Even on days like today, when I don't want to.
March 5, 2012
It's going to be feeble at best to put into the words this picture of my son Brandon I took in the van today. Brandon has been so sick lately, has lost so much weight. This past weekend he was laying down more than he was standing up. He's not eaten enough to keep a snail moving.
Yet today as we were driving back from the Pediatrician's office for a weight check, he just started smiling.
For us, pictures like this are rare. In fact, so rare that I keep the originals in a safe, because they are that priceless to us.
But today, in those few moments the smiles were not rare. They showed me how Brandon lives his life -- smiling, even though those smiles don't always show.
We had the windows down in our tan minivan and he was enjoying the breeze coming through the car and the music was playing on the radio.
You would never know by this picture all that this young man goes through in a day, in his life, and perhaps the purpose of his smiles today were to remind me of how that's supposed to be in my own life.
I'm not supposed to be bummed out that he still isn't eating.
I'm not supposed to be bummed out that all the lab tests trying to figure out why he's so sick came back negative.
I'm not supposed to be bummed out that I have no clue what to test for or do next.
I'm simply supposed to enjoy these moments. This child. This life that despite its challenges, has purpose.
Perhaps that's why God sent those rays of light through the open windows like that, to highlight the kind of attitude we are to have in all things.
How we are to Choose Happy. Live Joyfully. Follow Christ. (and wear Camo).
Not fifteen minutes after I snapped that picture, I had to once again pull over on a busy street with no shoulder because once again he was having a Grand Mal seizure while I was driving.
As I was holding his head waiting for the seizure to stop, and as I could hear the swoosh of the cars speeding around me last minute and just holding my breath hoping they wouldn't hit me, --- the song Amazing Grace came on the radio.
I could do nothing but smile.
I could be nothing but happy.
I could be nothing but joyful.
And so we sat there until I could get him settled and continue on home - and with the windows still down, sang that song for the both us.....
And marveled at just how amazing grace really is.
March 1, 2012
It's been a while since I last shared here...
But with April - and Autism Awareness month quickly approaching, - and an incident in my head way back from Christmas -- I thought now would be a good time to put on this blog, what's been on my mind...
I'm already beginning to see things here and there having to do with "Autism Awareness month"...and quite honestly, if someone asks me to "Light it up Blue" again this year, I'll vomit.
Autism Awareness month anymore has more to do with mega-autism organizations raising money to do nothing of impact to an actual family or individual living with autism; than it has to do with truly understanding what it is they are making you aware of.
Who it is you should be aware of.
The child, youth, or adult with an autism spectrum disorder...
The family who loves and care for that person...
The marriage trying to survive autism...
And trust me...you won't see it on any commercial or on any e-mail blast.
You won't see it by "Lighting anything up Blue"...
You won't see it by blindly writing a check to any mega-organization thinking your funds are doing a family good. Most families will never see that money you donated to that organization.
You'll only see it by taking the time to know someone with autism. By walking in their family's shoes for a day. By directly asking them, "How can I help you?" And if you are not in a position to help them "hands on," you could best help by asking them, "Who can I donate to, who will directly help you?"
You would have seen what autism awareness needs to be about by spending Christmas with us this last year. And because you will never, ever see "true autism" in a 30-second commercial (reality only sells in a reality show on TV) -- I will again boldly go where most others let alone the mainstream media won't dare go, in sharing the good, the bad, and this one-time really ugly, ---here.
Last Christmas was perhaps one of the hardest (yet one of the best) for Todd and I in our marriage and in our "Life with Autism". Since August 2010 our son with autism and epilepsy has been in a sort of decline, a relentless seizure cycle combined with other medical issues that have manifested their ugly faces in his beautiful innocent body. Combine that with little to no respite, and you have many stresses that collectively break the camel's back.
Our oldest son was off to Boot Camp so Christmas was already quite different. The first time ever we didn't have Matt home with us. My brother and his family traveled to Missouri to spend it with our mother in hopes of having a "White Christmas" for their little ones to experience. Brandon was not in any position to travel, and even if we were brave enough to attempt it, we did not want to be in another city should some crisis happen.
So, for the first time ever, Todd and I and Brandon spent Christmas alone. Didn't get to go to church, didn't do anything or go anywhere. We just enjoyed the simplicity of a different kind of Christmas courtesy of our different kind of life.
And you know, -- it was ok.
It was actually quite inspiring to be celebrating Christmas in the way that very first Christmas was celebrated so very long ago, with just Mary and Joseph and their precious son. It was a time to reflect on and appreciate what Christmas should really be about. No things, not even necessarily a house-full of people. But the love of all those people in your life, whether near or far.
Todd and I took pictures of each other holding live lobsters and then I made Lobster Bisque with fresh lobsters.
We smiled, we laughed, we loved, and we had a really, really good Christmas.
I'm not saying I'd like to do that again, (the Lobster Bisque I would) but for that time in our life, it was as it was planned to be, no doubt.
But then the day after Christmas happened. Already in the two weeks before Christmas our Brandon was in the Emergency Room twice for staples in his chin from falls from seizures. He had been out of school for over a week.
The constant paranoia of atonic seizures that happen suddenly and just as suddenly slam Brandon into a wall, a table, the floor - was becoming too much. Where tag-teaming typically works for us, in allowing one of us to escape to the outside world for a while and the other staying home "on watch" and vice-versa -- this situation was different. It took both of us tag-teaming in the house to keep an adult sized child who knows no danger, doesn't understand sit down and watch a movie, whose personal challenge it is to see how high he can climb or jump and how many times in a day he can go up and down the stairs in a two-story house.
Which again, we live with all that each weekend, but we at least have the absolute blessing of school five days a week to store up energy during! A few weeks of no school, and you're depleted the first day.
It was Todd who had to go out and do something, and I texted him about something. I didn't like his reply. He didn't like my reply to his reply. I didn't like his reply to my reply of his reply. And well.... you can see where I'm going with this. When he got back home, we both yelled. We both cursed. We both yelled some more and I invented some curse-word combinations that would make a sailor shudder.
No we're not proud of that. No we don't do that. Yes we are Christians. Yes we faltered. Not that autism causes that, but the stress of the situation we were in, had been in for a very long time, can. Does. Did.
I think it was after I slammed a bottle of Italian Salad Dressing as hard as I could on the table (Note to self: if you slam a bottle of Italian Salad Dressing as hard as you can on the table, remember that it will splatter all over you and you will smell like Italian Salad Dressing the rest of the day. This point will become relevant in a minute.)
It was right after that - and in the middle of more subdued arguing (we were yelled-out at this point) that Brandon had another atonic seizure, hit the counter, and split open the skin right above his eye. Both Todd and I standing not three feet from each other, and on either side of Brandon. That is how fast and how suddenly those atonic seizures hit and cause him to drop. You can be right there and still not catch him in time.
(Thus sending me to the emergency room, even with changed clothes, still smelling like Italian salad dressing.)
Nothing like a seizure to stop an argument mid-sentence!
We are fragile. We are human. We sometimes shatter. We sometimes blow up like gasoline in fire. We were a picture of what autism awareness in April is supposed to be about, but isn't. We were what the money people throw at Autism Speaks during Autism Awareness month is supposed to help prevent, - but didn't. Doesn't. Because most often people like us never see the benefit of those funds. For Respite. For community programs for our son to safely attend so he can get out of the house. For the stress relief we in turn would have by going on a date while our son is out having fun with friends.
I don't want to go out if it means my son's only option is to stay home.
Make no mistake, as strong as autism has made us, we are still breakable. We are still glass. We are blessed in that through the darkness of the initial diagnosis of autism and in the still relentless seizures, we've learned how to shine. Our marriage has somehow managed to shine through the darkest of days like that day was.
Oh how we've learned how to shine! But sometimes with no break, we do break.
Thankfully, God doesn't.
For Todd and I, that's what saves us. That's what saves our marriage from days like that day. God picking up our pieces, and putting us back together again.
Just like he does for our son each time he has a seizure and falls and cuts something open.
For each of you who do not live with Autism -- April cannot be about lighting it up blue, walking for a cure, or writing a check to make you feel that you are making a difference in the life of someone with autism. Because if it's written out to mega-organizations like Autism Speaks, you haven't. We're not a disaster relief opportunity. We're not tornado victims even though the stress and chaos we live with daily is a Cat 5.
What it needs to be about and who we are, is an individual. A family. A husband and wife whose marriage needs respite so it can suck in as much light as it can for the days when its dark.
It needs to be about a community that helps and supports each other.
A church realizing that for essentially six days a week they have a building that can be used to host community programs or respite opportunities for these individuals.
A Sunday School Class saying we can pool our resources to help support those local organizations that do support individuals and families living with autism.
I can't even find the right words to put into words just what it takes for a husband and wife to stay married in "Life with Autism"... All I hear out in the mainstream is "communication," "communication," "communication." Parents of children with autism do not have that luxury. They are lucky to get 5 words total out in between this crisis or that, this moment or that. To get a sentence out would mean it's the middle of the night and their son finally fell asleep, except that now they must too, to be able to do it all again tomorrow with no help. These families must learn to keep a marriage despite not being able to do anything it even takes to keep a marriage! They can't fall apart because of a crisis, their whole life is one crisis!
When you understand what it takes to even keep a marriage in "Life with Autism" - then you can perhaps even somewhat begin to comprehend the sheer amount of stress that it took to crack ours that very awful day.
That's what Autism Awareness month misses. In the hoopl'a of this or that, in the raising funds for this or that, we miss who it is we really need to be aware of so we know best how to help.
This April I'll be just as aware of autism as I've been since my son's diagnosis in 1996.
I won't celebrate autism as some sort of frat party or art exhibition.
I'll instead celebrate the God who shines through our son and who is always faithful to pick up and put back together the pieces that the stress of autism sometimes shatters.
I'll celebrate my husband and marriage that I'm reminded of in the song, "We are Glass."
(there is a link to listen to that song and watch that video at the very end of this writing)
I'll celebrate our marriage that with God's love, grace, and mercy is steel, even though individually he and I are truly but glass.
I'll celebrate my son who lives with autism and seizures and a host of other challenges...yet who is anything but --
~ ~ ~
Michelle M. Guppy
For Autism Awareness Month
If you would like to make a difference in Houston for Autism Awareness Month, please contact me for suggestions on how you can help and who you can donate your money to:
Thank you Todd for taking a chance and going through it all with me...
Better and Worse
Richer and Poorer
Sickness and Health
And for having the faith that says whatever glass breaks in our life, God will help us put the pieces back together.
To watch video "Glass" - click the link below:
Click here for video of song.
~ ~ ~