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.
August 26, 2010
I'm sure it's a morbid thought that I shouldn't share...but each time Brandon has a grand mal seizure, I think of what I would miss most about him if he were not to live through it.
I mean, other than praying, there's not much else one can do while watching your child shake and tremble and choke uncontrollably while their lips turn blue and their face goes pale during those 1-4 minutes that seem more like 1-4 lifetimes. It is the most horrific thing that I've experienced as the mother of a son with autism. Those seizures. Those blasted seizures that make the thousandth one seem like the first. Those seizures that you think after the thousandth one you would handle it like a veteran, but you don't. You're still a scared, shaking rookie who wants nothing more than to scream "Uncle!".
Or like I do, panic and dial 911.
That's how I felt this morning after Brandon's second seizure in less than 12 hours.
Plans for the day replaced with laying beside a peaceful boy as he sleeps it off.
New plans made for following him like a hawk once he was up and slowly moving about.
And doing that, is when I found the cup in the picture above.
The cup my husband and I often see perched about our house at unexpected times, perfectly balanced in unexpected places.
Todd and I share that smile of understanding that only we can know, when it comes to that cup and the places it's been periously perched.
Always half full of something in it he's drinking.
Always perfectly balanced.
Just carefully set atop whatever he was by when he was done drinking it... On the corner of the couch, the one inch ledge of the TV, the corner of his bed on the blankets, the table saw in the garage, the pool rail out back....
This child who cannot read, write, or talk, but who can perfectly balance a half-full cup on a pillow.
Whenever we see the cup, we cannot help but smile. That amidst the chaos and confusion of our household, among the challenges and obstacles we face in our life with autism -- that something as simple as a perfectly balanced cup can make us smile and remind us of God.
That like Brandon's blue cup, He's there where we least expect to find Him.
I think that why seeing that cup so unexpectedly makes me smile, is because sometimes it is hard to see God's blessings when we're going through trials and tribulations. It is hard to focus on the obvious... That God is there and He does know what we're going through and that we aren't alone.
That's why I think that Brandon's blue cup is one thing I would miss most about him should a seizure take him from me one day.
That reminder just for us that such a seemingly imperfect child could do something so perfectly.
That when we're having a day where we just want to cry, we find that cup somewhere and just start to laugh.
The lesson he teaches us in how when it comes to God, we should always expect the unexpected! We should always expect to find miracles in the darkest valley. Peace among chaos. Beauty in the sometimes ugliness of life.
I watch him wander around the house like he is now, still a bit groggy, but wanting to just do and be despite what he's just gone through; and I can't help but just smile at how God uses this simple sweet little boy to bring such unexpected joy in my life!
I smile at how God uses Brandon and a blue cup to remind me of how He perfectly balances the scale of hardships with so very many blessings.
Now if only I could find a way to have each seizure he has take off five pounds of fat instead of five years of life, I'd be good to go........
August 7, 2010
August 3, 2010
So shocking was the statistic that I can't even remember it, nor did I think to save it to share here.
But trust me, it was shocking.
One of my good advocate-friends Clay shared this personal commentary about that issue as well:
"OK, let's get to the point: Texas has more folks sitting in church pews yet less community support per capita for people w/disabilities than any other state. This is in direct conflict with the bible and someone with an M.Div should... care. There's grant money available to get a discussion going. Ready, get set...GO!
Another of my Facebook friends Marty, replied to Clay's thoughts along the lines of: It shouldn't take someone with a M. Div to figure that out...
Ok, I'll go......
Clay, Marty, -- I agree.
While my thoughts usually more resemble the "far side" of things, I think that the issue goes even before that.
Before being a Christian in the church, and waaayyyy before becoming a Pastor or Master of anything in life.
That problem begins with each of us as parents.
As parents (and before autism I was included in that bunch too) we scrutinize every toy our children play with for chemical or choking hazards, we scour every food ingredient on the ingredients list to make sure it's pure and wholesome, and we make our children say 'please' and 'thank you,' be obedient to our authority, and not throw fits in public.
All things we should do for their health & safety and for the benefit of them growing up to be responsible members of society.
But yet we turn away when on the playground those very same children ignore those with disabilities, stare at them unknowingly, thus creating that atmosphere of exclusion.
Simply because as adults we're not quite so sure what to do either.
We put our kids in the best pre-schools because we want them to be with the best. If we are white middle-to-upper class --- can we really say we would seek out pre-schools of all black or other minority children? Even if they're just as prestigious?
As if Dr. Seuss reads any different to a poor child, or a child with a disability, than it does for a middle-class white child without any disability.
My answer would have been no.
Not because I did it on purpose, but because we just don't think about that.
We go with what we know... and with who society says belongs or doesn't belong.
I actually think Sesame Street is to blame for this.
Remember this song?
One of these things is not like the others, One of these things just doesn't belong, ...
We teach our children from an early age to pick out that which isn't the same, doesn't belong.
And unfortunately, that has translated to people.
We put our children, with children like our own children.
From pre-schools to play-groups.
We do that for our children - and they grow up to be the people in the church who say that the homeless, poor, minority, or disabled are not who we as a church need to "focus on" reaching, teaching, and ministering to.
As if they don't need to hear about who Jesus is too....
As mommies arranging playdates for our kids, do we seek out and invite children who can't walk? Can't see? Are different ethnicities than ours?
Or gasp, do we take our children to the homeless shelters to have a play-date with the children there?
Watching the movie, The Boy in the Striped Pajamas was a must see for me. It truly opened my eyes as to how innocent children are about their differences, until someone tells them about their differences.
This topic hit home personally to me a few weeks back. I get church e-newsletters from some different churches we had visited or who had programs my son liked, I liked, etc.
I was looking at some upcoming classes at one, and hit the 'contact' e-mail to inquire about one such program.
I explained that I had a sixteen year-old son with autism and if they had any program for him while I was in the class.
The response was basically that serving that population was not their focus. Wasn't where they felt God leading them, or their resources.
That made me chuckle, though it was far from funny.
Chuckle that even me, a Bible-scripture dunce compared to most at my church, could even 'get' how wrong that statement had to be.
How in the world could this church, this leadership in this church, right here in the middle of the Bible-belt, be so NOT buckled into the actual intent of God's word?
How can serving people in your own backyard, NOT be a focus? Not be worthy of your resources?
But yet their words, and the words of so many other churches, are exactly that.
I guess we think someone else will serve them.
Well trust me on this leaders in the church, no one else is.
A church planted downtown had best not be there to serve only those wealthy executives who make the church possible, but those on the streets who maybe think that a God who could save them, love them, reform them, - is impossible.
A church planted where there are poor, elderly, those with disabilities, - has the responsibility to serve them, resources or no resources, as well as all whom God put in their community.
For us as Christians in a church and church leaders to say that we don't serve a particular population because 'it's not our focus' -- is just plain wrong.
Again, I'm not a Bible scholar, but it seems to me that the stories I remember, were of Jesus helping the poor, the sick, those with disabilities, widows, adulterers, etc....
I don't remember many stories of Jesus helping someone who was perfect.
I don't ever remember reading in the Bible how much money it took for Jesus to perform a miracle in someone's life either.
How much it hurt his budget to heal those who couldn't pay.
And I don't remember stories in the Bible where Jesus or the Disciples were sued for damages or liable for injuries, etc.
More excuses I often hear for not pursuing programs.
Did Jesus not heal the paralytic lowered through tiles on the roof because he wasn't sure if insurance covered that?
Did the people who lowered that paralytic not do it because they might be sued for roof tile damages?
I think in the church today, we have hindered ourselves helpless in that respect.
It's not about who we can help, it's about how cost effective it is to help them.
It's about whether we'll be sued trying.
Which in my far-side view, makes us just as pathetic as raising our kids to 'don't stare, it's not polite' -- while not ever taking that step in the Jordan river to know just who it is we're not to stare at.
And whether or not they know Jesus Christ as their Lord and Savior.
I'm so proud to be a part of a church has it's belt buckle buckled tightly in the word of God.
Michelle M. Guppy