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.
December 28, 2012
Though perhaps not by the world's standards of the perfect Christmas party, the perfectly color-coordinated Christmas decorations, or even the perfect Christmas gifts.
But simply by "The Commercialism that didn't steal our Christmas."
We didn't get to have Christmas on Christmas Day with our Navy-son once again, due to.... him being in the Navy and not getting to come home Christmas Day. But rather a week later. And thanks to the teamwork of some airline ticket clerks, we did get to see him a day earlier than expected. As any Military mom knows -- that's to 'infinity and beyond' priceless extra time. My son had volunteered above and beyond at work, and so his command officer gave whoever did that an extra day leave. So bright and early the day before their original take-off date, he and his Navy-wife show up at the airport to hopefully get a stand-by ticket on a flight. It's not policy to issue stand-by tickets on a flight that's not the same day as the ticket you bought -- but who can resist a handsome man in Navy Camo, right? The clerk said she could get them on the 4pm flight. He said, "Ma'am, we'd really like to try and make that 1pm flight...." She said there was no way, it was already boarding...
She obviously did not know the kind of life my son grew up in. Where the impossible was made possible each and every day. In what training path he pursues in the Navy, the times he had to defy the impossible each and every day. In having a little brother defy the potential of death with each fall from seizures. In having parents who have defied the odds of divorce from the stress of caring for a child with a disability with each Anniversary celebrated. In having a mother who never accepted "He can't" - "He won't ever" - "We can't cover that" - "We can't provide that..." In having a father who exemplifies that "Never Quit" spirit in doing the best he can in a very demanding and at times trying career.
Needless to say, as the gate door was closing, my son and his wife boarded that 1pm "No way you'll make it" flight.
Our first Christmas blessing is to those who go a bit above and stretch policies a bit beyond in helping those in uniform get home to their families for Christmas. No matter how belated that must be. And to my son who will forever and with all he has, defy the "No Way's" of life.
We are blessed to have three generations of "Team Guppy" here with us for our Christmas celebration. My husband's parents, Gary & Mary Ann Guppy make up "Team Guppy 1.0". Todd & I are "Team Guppy 2.0". Matt & Tiff are the newlywed "Team Guppy 3.0". In the mornings Todd's parents read a devotional and pray together. One morning I was upstairs having my coffee while I wake up, Todd was in his office checking on things at work since he's been on vacation, and I heard "Team Guppy 1.0" reading out loud. I stopped what I was doing and listened to them taking turns reading from Oswald Chambers. Something about the moment drew me to join them. I stopped by Todd's office and we both went in to where they were reading and just stood there watching them, listening to them reading out loud God's word. While they were reading and we were listening, I was thinking about how that is the stuff legacies are made of. What families should be made of. All together, all drawn to God. In prayer. I thought how so very many things that ail the family in this day and age, could be healed by this very act of togetherness in God's word. It felt wrong, but I knew I had to take a picture to capture the moment.
When they were done reading they looked up and saw us standing there. They explained that they do that each morning with few exceptions. And that they pray together after that. And they asked us to join them. And we did. And we will for the rest of the time they are here....
Our second Christmas blessing is for their example of "The Family that Prays together, stays together."
And thus can get through anything.
Of Perfect Smiles....
It's not lost on me that all this occurred in the middle of a mound of worldly gifts where watching the madness I was feeling like 'Cindy Lou Who' in The Grinch Who Stole Christmas wondering if this is what Christmas is all about --- opening things, things, and more things. Pouting because you didn't get as many things as someone else. Complaining because you got the wrong things. And then that answer from God. That smile that reminded me what Christmas is all about. Something that can't be bought. Wrapped. Opened. But rather, Given. Experienced. Accepted. Brandon's smile outshone everything in that room that symbolized Christmas. It was more perfect than the most perfect of gifts. That fleeting moment was my "Mary & the Manger" moment. His smile the Christmas Star that answered for me the question of what Christmas is all about. The simple humbleness of a special moment that reminded me of another special moment so very long ago on that first Christmas Day. Those moments, those memories, that love, -- is what Christmas is all about.
It was also not lost on me the shirt he is wearing in that picture. Our family's new motto: NDCQ. Not Dead Can't Quit. Where in our "Life with Autism" that has brought us such darkness of defeat -- those fleeting, momentary smiles that bring such light and help us refocus and find our way to renewed faith time and time again.
Our third Christmas blessing is simply the thankfulness of Brandon and how he reminds me each and every Christmas season to do my best to make Christmas more about the "Manger Moments" than the gifts.
December 6, 2012
I've thought about it quite often - just about every day of the year really. From last Fall until this Fall, all I wanted for Christmas was my son's two front teeth. Literally. Seizures took them, twice. One all but a sliver, the other fared much better. Just a chunk missing. It was really sad that if my son were a typical boy, I wouldn't have had to wait that long. I wouldn't have had to place him on a year-long waiting list because too few dentist's choose to specialize in a population of children, youth, and adults who have unique needs and require general anesthesia.
So needless to say, my "Grown Up Christmas List" centers around him. My sweet son who is now an adult who is non-verbal, significantly affected by autism, gastrointestinal disease, and seizures.
I want for him a medical doctor in a typical medical center who will leave me speechless by how much they know about the biomedical treatment of vaccine induced autism; not by what they won't even consider in how vaccine injury caused all the biomedical disorders I came to seeking treatment for.
I want for him to not be in pain, and when he is, to be able to tell me where.
I want to know how to fix that pain.
I want Physicians to go back to where they practice medicine, and don't prescribe it.
I want Pharma to stop poisoning our children. Drugging them. Making them customers for life.
I want the Government to stop mandating vaccinations, and instead mandate GMO-labeling. Heck - what I really want is no more GMO's.
I want Politicians to remember that they work for us peasants, not the Kings. That they should be speaking for those who can't speak for themselves -- by listening to those who know them best --- the ones who love them, care for them. Fight for them. Would die for them.
I want for him all the Christmases past that he missed because he would rather be alone in his room banging his head against the wall. All the untouched presents opened & played with that he could care less about because it was only the ribbon that he wanted to flap over and over. All the classroom parties that he could not be a part of because it was just too much of a sensory overload. All the friendships he never had because he didn't know how to play what they wanted to play.
All the Santa pictures we missed because his imagination was taken away along with his health and he could not understand who Santa was or why I was trying unsuccessfully to make him sit on his lap.
All the letters to Santa he could not write.
I want for him Christmas present where he can for once take part. Seizure-free. Leaky-gut free. Pain-free. I want him to have the vision of sugar plums. I want him to not be able to sleep in anticipation of Christmas Day. I want him to watch The Nativity Story with me and make fun of me when I cry. I want him to take part in telling stories at dinner and playing games after dessert.
I want to see him fight his big brother for the last roll.
I want for him a Christmas future that doesn't scare the hell out of me. One where I can die peacefully knowing that someone will be there to make his GFCFSF Gravy. Buy him Christmas Candy he can eat. Include him in their celebration no matter the chaos. Who will check him many times a night to make sure he's dry, clean, breathing.
For my Grown Up Christmas List, if I can't have for him a Driver's License, Prom, College, Marriage, or Children of his own, then I want for him to be treated with dignity, respect. To be loved as a person and not just cared for as a client. To feel safe. To not be abused, neglected, maimed, or murdered in some dark corner of an institution. To have a home in his community with his friends. To not be alone. To be valued. Seen as worthy. To live, laugh, continue to learn. To be free. Have choices. He likes long baths, not quick showers. He loves to be outside on a trampoline, not inside drugged up and made to sit in front of a television.
I fight for these things on my Grown Up Christmas List each and every day, so I suppose the last thing on my list would be to not have to fight for them anymore...
For it to just be.
Among all these things I wish for - there are two things I'm most thankful I don't have to wish for...
This season, more than any other, is about love. The unconditional love Christ has for us. And for those who see that as something far too distant, there are people like my son who are unconditional love on earth. They don't see race, color, gender, religion. Democrat or Republican. They don't do deceit, lies, hate, or bullying. They simply do love. Unconditional love. The one thing people in this world crave, is possessed by those they turn away or don't take the time to know.
Christmas Spirit from within.
Brandon has taught me that no matter what age you are, you can still have that childlike innocence of not being embarrassed to admit that you love to read "Twas the Night before Christmas." I won't ever think I'm too old to believe in Santa or too smart or prideful to not believe it possible that at Christmas so very long ago in a stable, a Virgin gave Birth to a Savior who would be called "Emmanuel -- God is with us."
Thanks to Brandon I'll always hear the Christmas Bell ringing, where if there were a word to put with that sound, for me it would be -
Long ring the bells of Hopeism.........
November 14, 2012
For those who have ever prayed for a family like ours and wondered what you could do for them ---
I received a beautiful card from a facebook friend who had been reading about our difficult times with our son's seizures. In the card that person shared that they knew we most likely had needs not being met and asked how could they help.
First of all - don't anyone ever think it's not worth the time and effort to send someone a card or handwritten note. I don't know about anyone else - but for me it is such a blessing to open a card or letter. Pure, simple, joy. In my mailbox I get nothing but junk ads and junk mail and bills. On my desk is paperwork -- forms to fill out to get nothing in return, printed out research abstracts for my leisurely reading, EOB's to sort through and when need be, appeal letters to begin writing.
Oh, the simple joy of a simple card addressed to me, not "occupant", not "guardian of", to open once in a while to break the monotony.
In the card was a very heartfelt sharing of how much that person cares for us and our struggles.
Then there it was, that question.....
The very genuine question asking how they could possibly help us.
Unfortunately at times I'm a very impulsive person. I knew what my answer would be the minute I read the question. But I tried to wait for a while. Put the question down and walk away... See if my answer would change after thought and reflection. Seek the Lord's grace to overtake my lack of gracefulness.
I'm not sure what that says about my Christian walk, but after seeking heavenly grace I found the same human graceless answer a week later as I had the moment I read the question. I guess why the truth is so absent in our world today, is because it's not glamorous. It's not the popular answer. It's often more blunt than graceful.
My answer is that prayer is always appreciated. Receiving a card that someone is praying for you, even better.
Many families like mine are on such restricted diets, that cooking a meal for them isn't really that helpful. There are too many things we can't have.
We love to do our own yard work, repair work, etc. It's sometimes our only diversion in our life with autism -- to get to do something normal people do. When we can.
What we really need, and I think I speak for many, is respite. So often the people asking us how they can help, are those who belong to a church. Perhaps even our own church. They have a way to help.
They have a building that's mostly empty on a Saturday. They have members of all ages and gifts and abilities. They have the perfect answer to that question of "Do you have a need not being met? Do you need help? How can we help?"
They have a congregation of servants who when the Lord asks "Whom shall I send?"
Should all be answering "Here we are, send us!"
Not if it's convenient.
Not if we're not scared to.
Not if we don't know how.
Not if we're afraid we'll be sued.
But rather "if there's a will, we'll find a way." "If God calls, he will equip."
For families like mine, the help we need isn't in the time of crisis, it's in those times of reprieve. For our son when he's well, to have a place to go for a few hours just for fun. To have an energetic youth peer play catch with him. Pull him in a wagon. Chase him on the playground.
For some less mobile children or youth, the senior ladies and gentlemen can perhaps read Bible stories to them for a few hours.
Deacons can stand guard at doors for sly escapee's. Women's Ministry can greet the Mom's and take their name and commit to praying for that family. The Men's Ministry can be buddies to some big-ol' boys!
The possibilities of how a church can and should answer that question are limitless.
If it weren't for fear from those who God calls to be fearless.
All I've heard lately is fear. Things like, "We can't continue offering our perfectly suited ministry building that God provided for "outside" groups to use for respite because of liability." "If we were to be sued, we could lose everything."
That might be true, but if the church that preaches faith to everyone else can't save a morsel for itself, then we're all in trouble.
If you were walking down the street and saw a child hit by a car, you would not just walk on by. You would go to that person, do what you could, and then call 911.
If you were in the grocery store and someone dropped in front of you with a heart attack, you wouldn't not help because if they died you might be sued. No, you would hopefully attempt CPR and call 911 and trust in the Good Samaritan law.
Parents of children with autism and other disabilities are asking no more than that.
That you do what you can and trust God to do what you can't.
We are supposed to belong to a church that preaches faith, that there must be purpose in your child having autism, a disability, seizures. That even though it may be hard, even though your finances will be wiped out, God will provide.
But what I've heard lately from those same churches, is that they can't open their doors to respite programs because they might get sued and lose everything.
Can churches built by God really lose everything?
Is God's faith different for people than it is for churches?
If God can provide for the church, don't you think it can protect it?
And even if something were to happen, could it maybe be part of God's purpose or plan? Like parents are told to believe regarding having a child with a disability?
Yes, those things are hard. It takes courage. It takes money. It takes collaboration. It takes trust.
It is difficult to step out of that boat, to cross that river.
But maybe, just maybe in doing that - you can see just what a blessing it is to families like mine whose lives are nothing but hard, nothing but difficult. Yet we have no choice but to plunge head first in the Jordan. Jump out of that boat with no life vest.
Or liability insurance.
I've also heard things like, "Well not many who we serve attend our church..." How many villages from the mission trips you sent your members on have come back to attend your church? How many people on your own membership list attend your church regularly?
What if the parents dropping their child off for respite on a Saturday never ever occupy a pew on Sunday? Is it not worth it that the child, youth, or adult who has a disability and who is made fun of by their peers, bullied on the bus, abused in the classroom -- has a place to go for a few hours once a month to learn about Jesus through the volunteer who read to them? The servant who was the kind, loving, accepting hands and feet of Jesus in caring for them?
Are we serving because there is a need we are equipped to meet, or serving so we can get?
God calls us to plant. Not harvest.
We are to sow. God's Kingdom, not the church, is to reap.
Don't ask how you can serve someone, if you're not prepared to serve in the way they need. We've been abandoned by too many people and it's just too crushing to be abandoned by those whose very faith says to serve, trust. Not flee, fear.
Parents of children, youth, and adults who have autism for the most part don't need help in crisis. There's not much you can do during those times anyway. What they need is opportunity when all is well. A Saturday afternoon respite to just enjoy their house or go out to dinner or see a movie. Their child or children with disabilities who are nothing but stuck in their house, don't need a babysitter to come over, they need a place to go play and be around people who have fresh wind, fresh fire, -- perhaps little experience, but great faith. By doing that, you are serving in multiple ways. Respite for the parents, time for marriage for the husband/wife, a change of scenery and recreation opportunity for the child, youth, or adult with the disability.
What we need is for you to be Good Samaritans who serve with cell phones. If something happens, call 911.
I guess if that's simply too big for God to make happen through your church, there are local disability organizations who serve families who can always use your donation.
Most of them non-Christian based.
Think about that.
November 11, 2012
For a family like ours, it's hard to answer that.
We deal in "needs" - not "wants".
We have a son who is severely affected by autism and seizures. Whose vaccine-induced immune and mitochondrial dysfunctions spare no body system.
We live in Houston. It's hot in Houston.
Our son doesn't sweat to help his body regulate temperature. He has seizures instead.
So for summer after summer we could only be outside for 15 minutes at a time. We had a tiny porch slab, but it wasn't covered. We have no trees in our yard for shade because for years we had an above ground pool. When the seizures became really bad, we had to get rid of it and just never got around to planting trees. Not that they would have provided any shade anytime soon!
If it wasn't the relentless heat that trapped Brandon inside, it was the seizures.
Finally - the day came when we felt we were in a position to spend the money to have the porch expanded --- and covered.
Obviously our "Life with Autism" wasn't going away any time soon, and with respite hopes non-existent for the most part -- for our own sanity and stress-relief, we had to create our own escape.
A refuge in our refuge.
For all of us!
Looking through Matt's Custom Decks website was a wonderful dream. So many different ways we could do our porch. How do people who do have such luxuries of time to contemplate such projects ever narrow it down among all the possibilities? Where do they get the money to do all that?
I guess they don't have lifetime care for their adult son to worry about.
I guess they don't spend $500.00 or more a month on supplements and special food orders, and about an extra $200.00 on the grocery bill for organic, non-toxic, and special diet food.
I guess they don't order raw camel milk at $9.00 a pint from an Amish Camel Dairy clear across the country and have to pay for expedited shipping so it doesn't arrive in Houston as hot chocolate.
I guess they're not having to pay for private school, out-of-pocket for autism treatments insurance doesn't pay, or out-of-network for alternative doctors who do far more than any in-network doctor has ever done for us.
Like knowing a "want" from a "need".
The picture shows that for us.
Brandon had a seizure that morning. Because of this covered porch and the outdoor couch that my husband custom built for Brandon to be able to lay flat on when he has a seizure -- we were able to all still enjoy a slice of normalcy. We could all be outside.
A need met.
The porch didn't cure my son of the seizures, it just made getting through them a bit easier for all of us. Our lives didn't have to come to a screeching halt to constantly check on Brandon in his bedroom and we didn't have to be inside on a beautiful outside day
I don't think I could ever convey that in a customer satisfaction survey. What their project was to us was so much more than just another job. It was building freedom for us. Respite for us.
It was the best money we ever spent, and not just for something we wanted for the purpose of wanting or something that would impress or add value to our house ---
But in how it gave back to our son just a little of what autism has taken from him ---
Yes Matt's Custom Decks -- we are pleased with the work you did for us.
It was worth every penny.
It's absolutely priceless.
We've certainly hit some low points in our "Life with Autism." In fact, we really can't remember anything but brief periods of calm while the chaos reloads. Seizures seem to have a relentless grip on our son, on our lives, -- so much so that I find myself thinking of the "Footprints in the Sand" poem quite often.
This picture from our life today is our "Footprints in the Sand" photo. Todd has carried Brandon like this many times. I just happened to have my phone with me to snap this one.
Brandon had yet another seizure this morning. On yet another Sunday. The Lord's Day. At least though he was awake. He couldn't walk, but he was awake.
The little things.
I guess no better day than a Sunday to be reminded of how when Todd or I must carry Brandon, that it is God who is carrying us.
Oh if we could all live with the faith Brandon has. That his Daddy might drop him never, ever enters his mind.
That God would ever forsake us --
Should never ever, enter ours.
Michelle M. Guppy
Footprints in the Sand
One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.
This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.
So I said to the Lord,
"You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only been one
set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"
The Lord replied,
"The times when you have
seen only one set of footprints,
is when I carried you."
October 18, 2012
Yet because of that same inability to regulate temperature, while he doesn't mind the heat, his body does. It doesn't tell him he's too hot, until he's -- too hot.
And then he has a seizure.
It's been challenging to say the least for this outdoor family to enjoy the outdoors. We just can't be out there for long periods at all because of the heat and the fact that there is no shade. We have a porch, but it's scorching hot concrete with no cover. Which creates another issue in that our son doesn't like shoes much. He tolerates them, but he'd rather be barefoot. And he'd rather walk on scorching hot concrete than grass -- er -- weeds.
So -- over the years I've kinda sorta let our yard go. There was really no sense spending time or money on pretty bushes and flowers when we could only spend 15 minute spurts of time out there.
Autism had other things it needed us to spend money on other than a covering for a porch. Let alone the total indulgence of being able to extend it as well! So that we could be outside. Call it our "summer home" out there. Tend to the pretty bushes. Plant pretty flowers. Dig another garden!
Unless you have autism in your life, it will be hard to imagine what the home of someone living with autism must be. To us, it's our refuge. The one safe place in the world where no one stares at us or our son. Our son isn't bullied in his home because he's different. His home is his safe place. Familiar place. Unchanging place. Where no one makes him try to fit in their world. Where he can be him in his world. It's where we can safely vacation with autism. It's our summer home, and our home away from home.
Over the years we've made the inside as "autism-friendly" as we possibly could.
Now -- now we've finally come to the place where we could focus on the outside of our home.
We found a contractor we liked, who was local, and seemed pretty darn good at what he does by the pictures on his website. And his name is Matt. Can't go wrong with a name like that, though I could be biased as my Navy-son's name is Matt.
We signed the contract and the work began.
The first day was spent digging post holes and setting behemoth posts that would bear the weight of the roof of the covered patio. My son Brandon, who this project was for, was upstairs in bed after 6 Grand Mal seizures early early that morning and into the day. As I would pass back and forth by the window I could see those men digging and picking their way through the concrete patio to set those behemoth posts.
Finally they were set.
When I saw where one of them was, I was worried about it being too close to the door, not for us, but for Brandon. When he gets excited, he runs and giggles and stumbles... I could just see him running for the door as his usual routine is, and not being used to a post being there, and run right into it.
So I asked one of the men why that beam had to be there and he explained it. It made sense and I said ok -- that is fine. I was just curious. Definitely not upset - there are bigger things in our life to be upset about! A post that I could make work by putting things around it to divert his path was definitely not one of them!
So - I didn't think about it again.
The next morning they came and worked.
Around noon I went out there to see the progress - and I noticed it.
The post was gone.
He moved the post for me.
All that work they did the previous day in chipping away at the concrete just to dig that hole to set that behemoth post in more concrete...
I asked the man about it - I wanted to reassure him that if that post needed to be there that was fine - I would rather worry about my son running into it than the ceiling falling on him! (smile) He said no, he talked to his boss about it and there was another way they could do it. They could change plans a bit and make it just as strong doing it another way.
I guess most won't realize what a big "wow" that really is.
In my world - people don't go out of their way to help us, our son. Not when I ask them to, and most certainly not on their own when I haven't even asked them to!
In my world I hear, "We can't provide the education he needs..." "We can't afford to educate his teachers in the way your son learns..." "We don't have any respite funding..." "We don't have any respite providers...." "We don't have a recreational program for your son's needs...." "We don't know why your son is having seizures..." "We can't cover this treatment that helps your son...."
In my world -- people don't move behemoth posts that they spent hours painstakingly picking through concrete to set.
In my world -- people don't go to bat for my son and contact their bosses to see if they can make an exception to the "norm" of how covered patios are built.
In my world -- my son's daily achievements over his daily challenges provide my "wow" moments more than people do.
But not that day.
On that day -- someone did go out of their way.
Someone other than my son did "wow" me.
You simply cannot imagine what it was like to see that post gone.
The total shock as I stared at where that post was and thought how he moved it for me.
The total amazement as I was reminded of another behemoth post and how HE died nailed to it for me.
August 28, 2012
The above is a picture of a bush at the end of the sidewalk leading up to my front door. Brandon and I pass this bush each morning as we head into the tan minivan to be off to school.
It was odd how I came to focus on that bird yesterday morning. When I opened the front door I heard it fly off quickly, as if it had been sitting on the chair by the front door waiting for us to come out. When we stepped on the porch I saw it head down the sidewalk, stop briefly on my tan minivan, then continue on to that bush. That bush that it seemed to know we would pass by.
What a crazy week it was already -- three doctor's appointments for Brandon regarding two upcoming procedures he'll have to have in two different hospitals under general anesthesia. (Far be it for anyone to get a clue about autism and actually work together, coordinate, to do everything all at once!) One at Memorial Herman for Dental Surgery under sedation to fix a broken tooth from a fall from a seizure, the other at Texas Children's Hospital for an Endoscopy and Colonoscopy with Biopsies to rule out any new issues other than the ones we already know of, that would be causing weight loss and increased bowel issues.
Ahhhh -- the life of "Life with Autism....."
Constant threat of sadness.
So needless to say, as we were off for our first pre-op visit of that day, I didn't have the time nor desire to be bird watching.
Yet that bird's presence drew me in. Even with Brandon and his humming and running around close to it in his typical "evade and escape" pattern of avoiding getting in the van, the bird remained still in that bush.
I allowed myself a moment to stop and look at it. It was a beautiful scene with it being almost camouflaged by the bush. And I do love anything camouflage. I wondered if it would allow me to get close enough to take a picture. I took out my phone and dared to step closer and closer and much to my surprise the bird dared to let me. One more step closer and I could have touched it.
Only God would send me a bird to wait outside my door to remind me, in all my worry with all I had to do this week and the coming weeks and with all that could go wrong in all of that --- to not worry.
"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life?"
Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows.
Right before I snapped the picture of the bird, I noticed that where his eye should have been was a scab.
Only God could put an exclamation point on the end of that message by not only sending me a bird, but one who has a disability.
A bird much like my Brandon.
Good one God --
I won't worry.
I'll Choose Happy.
August 2, 2012
To me all yesterday did, was make a well off man even more well off. He is a strong Christian who has strong morals. The strongest kind - the kind that puts his Christianity before money. No one does that these days. The owner of Chic-Fil-A gives up millions more in profit just to abide by the Bible's principle of honoring the Sabbath and not being open for business on Sunday's. All through my son Matthew's NWAL and USA competitive swimming swim meets when we as non-Sabbath-honoring sinners would be driving to a swim meet on a Sunday morning and would go through Chic-Fil-A drive thru forgetting it was Sunday and they were closed, -- we were starkly reminded of his beliefs. We would have to turn around and go to Whataburger - a sinful business that is open on Sunday mornings. Chick-Fil-A would have continued to thrive with or without yesterday. The owner would have continued to expand his businesses without yesterday's showing because denying him a permit based on what those mayor's were basing their threatened denials on, would have been overturned in any court.
To me yesterday was about the already full feeding themselves more, while at the same time so many in America were hungry or starving. It made a wealthy business, wealthier, - the hungry, hungrier, - and all people who sin remained all people who sin.
But there are two mayors who have been shamed.
I don't know --- seems we could have fed the hungry and sent those mayor's some e-mails instead.
Was yesterday about freedom of speech per-say, or was it about freedom of speech as a Christian to even more emphatically say that a certain lifestyle is wrong? Which did Christians put the exclamation point on yesterday? I see it as the latter. And all that came from that is a further divide and a bigger hypocrisy. Seeing is how no Christian who ate at Chic-Fil-A yesterday was without sin in their own lives.
I'm writing this from the side of someone knowing how it feels to be pointed at. Society has put their exclamation point of what they view as "normal" and "not-normal" on me and my son hundreds upon hundreds of times. It was put on him at school in the form of being banquished to "Special Education." It's put on me when I try to get insurance to cover treatments for his socially unacceptable "autism" rather than his socially acceptable "asthma". It's put on us each time we go to a store and we're stared at, whispered about, or silently scorned because he drools, has an accident or meltdown, or hums too loudly. It's already bad enough that the church in many cases is the worse about discrimination when they are to be the best at breaking down the barriers that divide us. The church was not created to showcase the perfect. It was created to house the homeless, heal the hurting, help those who need to be helped. Welcome the unwelcomed, accept the unaccepted, and to do it in love as the hands and feet of Jesus in drawing the unbelieving world in and not as the voice of condemnation that drives them further away.
I guess I must not be a real Christian.
While I do believe in Jesus Christ as my Lord and Savior, and I do believe what the Bible says about any and all sin - I do not believe that believing that means that I hate all who do or believe other than what I do or believe. I'm not sure when as a society that thinking happened, but it has definitely happened. Where if you are a man who happens to own a Christian business and you publicly profess your views -- that it's turned into a hate-war. Where if you don't believe that man's views, you must boycott and ban that man's business from your city just because of his beliefs.
We are to love people.
We are to have our own beliefs and moral code of conduct and uphold those beliefs by voting at the polls and by raising our families and running our non-profits, our clubs, or our corporations by those beliefs and moral codes. We are to live those beliefs and values, but not by condemning those who God told us to love. And certainly not in a way that pits "us" against "them" - when God loves both "us" and "them". And I don't think God meant that we have to boycott anyone who doesn't believe as we do. Otherwise, what would the point of Jesus' birth and life on earth as a common (though perfect) man walking among common (imperfect) sinners have been? All were sinners compared to him. Yet he walked among them. Was friends with them. Broke bread with them. Served them. Slept in their homes. Touched them. Healed them. Did he become influenced by them? No. Did he try to influence them by his example of love? Yes. He even washed the feet of the very person who would betray him - that betrayal that was the beginning of his journey to death on the cross.
Even when all who he came to save rejected him, he still loved them and died for them.
He commanded us to disciple.
We have instead distanced.
As for me, I'm thankful for autism at times like this.
In fact, I'm claiming today as "Autism Appreciation Day."
My son cannot read, write, or even talk. He doesn't understand religion. He doesn't know about hate, intolerance, homosexuality, heterosexuality. Thanks to autism he will most likely never, ever have the opportunity to even be married. To anyone. He doesn't understand about Freedoms or even who the heroes are who fought for and died to protect those rights he has no knowledge of. He doesn't understand why you should eat somewhere for some reason, or why you shouldn't because of another reason. He just knows that if they don't serve GFCFSF food, he can't eat there regardless.
He doesn't care what color the hand is that holds his. What language they speak or what gender they are. He doesn't care what the religion is of someone who chases and tickles him. He doesn't care if the person who helps him learn how to communicate has had premarital sex or extramarital sex. He doesn't care if the person who wants to go for a walk with him has blue hair, piercings, and tattoo's - or not. He doesn't care if they're smarter, faster, thinner, fatter, or prettier than him. He just cares if they would be a real friend to him.
He doesn't care about Republicans, Democrats, Liberals, or Conservatives. He just cares if the people attached to those labels are nice to him. If they respect him. If they protect him from harm. If they will serve him as their constituent too.
He doesn't distinguish between Baptists, Buddhist's, Muslim's, Methodist's, Christians, or Catholics. He just cares whichever one will welcome and make a place for him at their church.
That's what keeps me sane in the insanity called "Life with Autism". Being constantly challenged to see the world and God through my son's eyes, not mine.
Today is the day after the Chic-Fil-A appreciation day. Children are still hungry. Every other basic human right in America is still being threatened without outrage. We are being genetically modified by vaccinations and food. We are being doped and drugged by the Pharmaceutical industry. Politicians and policies are being bought by their profits. We have skyrocketing debt, no money to give to organizations who help those who no one else will help, yet we collectively spent a small fortune supporting a business that was never, ever in danger of losing not one expansion possibility or ounce of profit.
And there are still 1 in 88 children, youth, and adults with autism.
And as far as Christians and the church?
I know that I will remember yesterday as the day satan collected winnings on a bet made with someone about how on a Wednesday he can get more Christians standing room only at a fast-food restaurant than at a revival or prayer meeting at church.
July 27, 2012
I'm strangely drawn to listening to the Carrie Underwood song, "Blown Away."
I guess because this has been a season where there have been many things I've wanted blown away. Autism, seizures, gastrointestinal disorders, unexplained health regression....
On top of that, when the dry lightening of disappointment cracked across our sky not once, but twice in a row (lightening isn't supposed to strike the same place twice) it was enough to send storm clouds gathering in my eyes for sure. I found my staunch faith slowing simmering into snarky fuming at the God who would allow such unfairness. Life with Autism was enough to deal with in causing my Angel-of-a-son's health to be buried in the ground so to speak. I didn't need the added burden of life itself being a mean old mister.
Seemed a twister of unanswered prayer had come for a season and was attempting to blow my faith away.
I think we're dishonest when as Christians we portray that those things don't happen to us. That we don't have those un-Christian-like conversations with God. Yes, we remain as positive as we can, but sometimes we can't hide the disappointment we feel inside. It does my witness no good to portray that through this season I've had no doubts about God's ability to answer prayer. His willingness to answer prayer I guess I should say. Ok fine, his ability and willingness to answer prayer in the way I wanted it answered. It does my witness no good to hide that I haven't at one time or another called God a "mean old mister". I guess my only redemption is that I knew while saying it, that I really didn't mean it. And I've told God as much. We are to revere God as the Holiness he is, and not joke or take that lightly. I have, and do, ask him for forgiveness when my flesh gets the best of my faith in doing that.
Which is why I'm thankful for songs that come out at just the right time to get me back on track. Children with autism aren't the only ones drawn to music as an escape! Some of my most heartfelt prayers and God-moments have come from listening to Christian music, and even non-Christian music that has touched me in a moving way, such as the country song Blown Away has. It's caused me to put back into perspective things that I've allowed to be blown way out of perspective.
To put back into perspective who blows them way out of perspective.
It is satan who would cause those storm clouds in my eyes. Who took all those little things in my life that happened lately and twisted them into a very powerful tornado that blew away all rational reasoning. Reminding me of each prayer that wasn't answered in the way I wanted it to be. Causing not one disappointing blow, but two. Persuading me to see all those things through my eyes, not His. In what I wanted, not what He had planned. In what would best serve us, not Him.
The problem with allowing satan to permeate your thinking is that not only is he a powerful tornado who only gets more powerful with each bad thing you attribute to him, but he becomes even more powerful than that when you allow him to blow away all the good things you know to be true. So much so that all you can then see is the bad, thinking there was never any good!
It is satan who would want me to shatter every window of hope until it's all blown away.
Every brick of love, every board of purpose, every slamming door of prayer blown away until there's not a shred of my faith left standing. Until there's nothing left of yesterday's blessings. Until all that I know of Christ (or life) that is pure and good and holy, is blown away.
I'm glad twisters come with a warning siren.
This song was certainly that for me.
There are going to be many disappointments in life, many things we cannot fix or figure out. Life is at times a mean old mister that often doesn't make sense.
But here's the thing.....
While there may not be enough rain in Oklahoma to wash the hardships out of our house, there is enough compassion through God's mercy to.
While there may not be enough wind in Oklahoma to rip the nails out of the disappointments or sins of the past, there is enough power in God's grace and forgiveness to.
No matter how many tear-soaked whiskey memories or hardships are passed out on the proverbial couch of your house, running away and locking yourself in a shelter praying for a twister to blow it down may do just that, but it will never blow the bad of life completely away.
There's only one twister big and powerful enough to do that.
It is satan who calls us to run to him for sweet revenge.
It is God who pursues us to take shelter in his sweet redemption.
The crucifixion of Christ on the cross reminds me of that. That "twister" that caused darkness to come over the land that day where at the moment Christ was crucified on that cross, the curtain of the temple was torn in two from top to bottom causing the earth to shake and the rocks to split. That twister that wasn't a people's revenge against the carpenter who claimed to be Christ as they had hoped it would be; but rather the Master's sweet redemption of a people through the man who was, is, and always will be, -- the Messiah.
That twister was not only to blow away the sins of our yesterday, but to give us hope for the future.
"For I know the plans I have for you," says the LORD. "They are plans for good and not for disaster, to give you a future and a hope."
I'm blown away by that.
I'm thankful for those sirens that go off in my life at just the right time to cause me to seek shelter in God's word. And I hope that next time a Texas-sized twister of life's unfairness crosses my path for a season, I don't run and lock myself away from God, but rather stand even firmer, embracing whatever comes my way with the promises of God and not the lies of satan -- knowing that when I stand firm with God, satan's twisters (or life's) can never blow me away.
I guess the reason I'm so drawn to that song is because in my mind I sing it for what I've shared here and not for what the lyrics are actually about...
Only God can shatter every sin until they're all blown away.
Every doubt, every disappointment, every disillusionment blown away.
'Til only light's left standing
Not the darkness of yesterday
Every tear-soaked temporary defeat blown away...
Click here to watch video "Blown Away" by Carrie Underwood.
To being "Blown Away" by God's Grace, Mercy, & Love!
June 28, 2012
Anyway, in that journey, I've just finished the book of Job. Seems lately I haven't just read about his trials, I've lived them. "Team Guppy" as I call our family -- has lived them. If you read this blog's posts - you know that over the last 18-20 months we have not only lived with autism, but horrendously uncontrolled seizures in our son who has autism. There should be a limit on the amount of trials a person must go through, but as we see through Job's life, that isn't always the case.
For us it certainly hasn't been.
Which brings me to these musings about disappointment. More specifically, how the heck you handle them. I'd like to sit here and think that with all my experience in having faced so many of them, I would have a 30-minute power-point all ready to insert here for you to watch and be duly enlightened and amazed by. But I don't. And I don't want anyone to think for a split-second that I have the arrogance of thinking my disappointments are the worse ever. They aren't. I guess I could have one slide in that power-point presentation after all.... I do know this about disappointments: There are others whose disappointments are greater than yours. And that's something that always balances the scale for me. It doesn't take away the pain of my disappointments, but it certainly helps to keep them in perspective.
While I can't answer why disappointments happen or how to best handle them, I can share what I've learned about them. Mainly, that it seems like people today have the attitude that they don't deserve disappointments. That they somehow take for granted having so many blessings, that how dare the universe send the plaque of a disappointment or bad-day upon them. The slightest hiccup in a day ruins the entire day for them. I guess that comes from raising kids by giving them a reward for every good thing they do. No, not every good thing you do earns a reward, but you do good anyway. When we grow up expecting good for doing good -- we can't handle bad when it blind-sides us. I credit my childhood for preparing me for my "Life with Autism." It wasn't perfect. We didn't win the lottery and have a life of ease because we were good. Bad things happened despite us being good. And I was made stronger for it. When a bad thing happened, it didn't mean we were exempt from more bad things happening.
Others think that if you just ignore disappointments they'll go away. They won't. Pretending satan isn't lurking doesn't mean he isn't. Pretending you weren't just sucker-punched and had your breath taken away by a disappointment isn't going to take that pain away or make the next breath any easier. I prefer to see my enemy face-to-face. I prefer to go ahead and face my disappointments, not duck from them. Actually, I'd prefer to blow them up with a canon, but since there isn't a concealed hand-gun license for that -- I have no other choice.
I guess my saving grace in disappointments is humor, albeit sarcastic at times. Not by choice, but by necessity. I've heard many times by many people when going through a disappointment: "When life gives you lemons, make lemonade." While I know they have the best intentions with that statement, I wonder if they would have wanted someone to say to them if their spouse/relative/best friend died prematurely, "Well, they dropped dead suddenly, but you know, you just have to be thankful and make lemonade!" That topped only by, "Here, would you like some ice cubes to go in that glass of lemonade you're presently choking on?"
It is true that after life throws you lemons you have lemonade. I could use a wine cellar in my house to store the barrels of lemonade I have! But not because I purposefully made it. It's merely what has oozed out of the lemons that have been pulverized as life threw them at me and they were somehow caught between my head and the wall I was banging against in hurt, confusion, disbelief, or anger. Sometimes the lemons were thrown so hard at me they were instantly liquefied into lemonade.
Lame cliches' no matter how well-meaning, have no place in helping someone through disappointments. That's why I love our dearest long-time friends. The husband is the most laid back person I know, and upon sharing our most recent disappointment with them, his wife texted me his reply of simply "Dang-it". I can't tell you how hard I laughed at that. I could picture his calm self sitting on the couch and upon hearing our news, say simply, "Dang-it!" And I know that when I get a moment to share with my BFF, she'll have an equally humorous to me "buck-up buttercup" response. Or she'll come over with a bat and burlap bag and ask me for the address of the person who dared cause our disappointment.
You can't avoid or change disappointments, and there are many times you can't even make the best of them.
Sometimes disappointments are just that --- a "Dang-it!" bleep in an otherwise blessed life.
They are as unfair as life itself. But I suppose the most merciful thing I have learned about them is that God is still God even though he allows them.
That was the hardest thing to learn about disappointments as a Christian.
Twice in my life I have prayed with everything in me, for something to not happen. I mean deep-down-to-my-soul praying. Laying-on-the-floor-with-arms-and-legs-outstretched-crying praying. All-night-and-all-day praying. God-will-answer-my-prayer-miracle-believing praying.
And twice those things happened anyway.
Like I said, I have no advice on how to handle that depth of disappointment. My first reaction was, "Really, God?" From there my whining only got more pathetic. Then I got angry. Then hurt. I'm still a bit bewildered and in shock.
But even in all that -- I do know that no matter how deep the depth of your disappointment, God is deeper. Though God may allow disappointments to happen, God is not disappointment. They don't happen because you are bad. You're not exempt from them because you're good. They just happen. God is still God. Life is still good. I think to further illustrate that to my fractured-faith on that particular day -- at the very moment that second thing in my life I prayed for the most to not happen, happened - God sent in the middle of a perfectly hot, humid, Houston day -- a hail storm. Those who know me, know that my most perfect of days, is a dark, stormy, thunderous day. Hail would just be icing on that type of day for me. And it hailed on top of that dark, stormy, thunderous, 104 degree moment that day. Big chunks of icy hail in the middle of a hot, humid, Houston day. It was God reassuring me that he was still God, and that if he could send quarter-sized chunks of hail in a 104 degree day, then he could surely be in control of what we were going through.
God is there in our disappointments whether he shows himself or not. Just because the thing we prayed for most to not happen, happened, doesn't mean prayer doesn't work. Although admittedly I asked our friends to pray for my husband through a difficult time at work because I was afraid that if I prayed for him I would jinx him! I didn't want to go three-for-three just quite yet!
Like I said, I should be a pro at handling disappointment. But I'm not. I sometimes kick, scream, cry, and curse. I get angry, I get sad. At times I even laugh. What I don't do, is run from disappointment. I stand firm and embrace it in all its suckiness. I don't not dream because of a dream that was shattered. I don't not pray because a prayer wasn't answered how I wanted.
I've dreamed many wildest dreams for both of my boys, and especially as they pertain to Brandon's healing those dreams have been disappointingly crushed more often than not. For Matt, disappointingly delayed. But I still dream them. And I still believe in prayer and in the miracle that dreams can and do come true.
I guess that's the thing I do know about disappointment...
That it's not so much in how you handle it, it's whether you will choose to defeat it or allow it to defeat you.
And I choose to defeat it.
Each and every ding-danged, blasted, gosh-darned time I must.
That's what I appreciate most about "Team Guppy" --- no matter how many times life trips us, kicks us, or knocks us down, -- as long as we have air flowing through our gills, we will rise to the surface and swim on.
Against the tide no less.
There are too many people in this world so defeated by disappointment that they quit daring to dream or do.
June 5, 2012
I guess what brings me to sharing these thoughts today, is an "Experiencing God" Discipleship Class I attended years ago. The most significant words to me, came back to me today as I read an e-mail I received about an event cancellation.
The e-mail was from the non-profit organization Desperate for Respite. Each month that organization has been meeting the needs of parents who are DESPERATE for Respite. But due to a scheduling conflict that should not have ever been one in the first place, they had to cancel the event.
The parents receiving that notice will be crushed.
I am crushed because I know that if my son were not attending camp that weekend, I would very much have been counting down the SECONDS until I could take my son there for him to have a fun evening with fellow friends while my husband and I had some much needed "us" time.
I just can't help but remember these words from that "Experiencing God" class:
“Watch to see where God is working and join Him.”
God is working through Desperate for Respite. That is an undeniable fact. The people who run that organization have seen a need, felt a calling, and answered it. Though at times it has been nothing but struggle.
As Christians sometimes the hardest thing to figure out in serving, is how, when, where. How do I know I'm doing what I am to be doing? How do I know where to serve?
"Watching to see where God is working" is the answer to those questions.
"and Joining Him!" is the exclamation point at the end of the sentence.
God is working mightily through Desperate for Respite -- and our community as well as the churches within that community would do very well to join in that. Not cancel that, not ignore that, not work against that and not try to recreate that on their own. But to simply partner with that and join in that.
God is using that organization to increase his Kingdom! Families who perhaps never stepped foot in a church are stepping foot in a church. They are "Experiencing God" through the hands and feet of the faithful volunteers.
In a day and age that could use all the light it can get, why on earth anyone would work against those who are shining a light or just turn the switch off completely - for any reason -- is beyond me.
Please join me in sharing this June Newsletter for Desperate for Respite -- if you would like to join in where God has been doing a mighty work, please contact them!
~ ~ ~
The opinions and views expressed here are those of Michelle M. Guppy and Michelle M. Guppy only!
May 15, 2012
Got the concept from one of my favorite Christian authors of all time -- Barbara Johnson. I suppose my motto is from her life --- Choosing Happy, Living Joyfully, Following Christ, and for me, -- Wearing Camo.
She's been through some STUFF in life, but like one of my new motto's -- she "Made her Mess her Ministry". As part of that ministry, she kept a "Joy box" of things that when life got her down, she would go to that and look through each sentimental picture, thing, or saying, to cheer her up. I have a "Joy file" as well as a "Joy box" -- I've saved e-mails of thanks from folks about my writings, quotes from people, etc. Things to encourage me or make me laugh when I need to.
I guess this evening I found myself dreading taking Brandon to the doctor tomorrow because of his shoulder. It just keeps popping and crackling and my stomach churns each time I hear it. I hate being a "the glass is half empty" person in situations like that, but I've got a good record going, in how the glass is indeed half empty when it comes to our track record in such doctor visit matters.
And of course, misery loves company, so I thought about how I was missing my son Matt as well. How we are back to "Boot Camp" days of little to no communication. (Anything less than a Skype a day, a call a day, and a dozen texts a day, in this mamma's book translates to "little to no communication.)
So I found myself digging through my "Joy box" and I came across Brandon's t-shirt I had put in there long ago...
Not only has he grown since that toddler-sized t-shirt -- but he's changed. I've changed. Our family has changed. And yes, because of all those changes in us, the world of autism we live in has not only been unlocked, but changed. We may always have some difficulties, but in just looking back at that t-shirt and how autism affected the newly diagnosed boy who wore it at that time, compared to the young man of now, -- oh my --- how.he.has.changed.
Some things however, ahem Matthew, - don't change! Ha ha ha....
I actually had to resort to my "Joy file" of humorous quotes to get me over missing my Matt. I came across this one:
“Cheer Up the worst is yet to come!”
― Barbara Johnson
I think I put that in there during a particularly "high volume call period" from the AP at his High School to me at home. I think that might have been the time the track coach asked if he could have free reign to discipline Matt for driving to Sonic during practice, and when Matt felt he could just leave school to drive to Wal-Mart to get a poster board for his next class and have no one notice. (Which, the way he drives, I'm sure he indeed felt he could get there and back between classes!)
But much like that t-shirt of Brandon's -- that quote I put in there for Matt has proven true too! The worst kind of worrying for a parent is yet to come for us! Matt is now in a training program that will test him, and us, in every way possible. Oh, for those AP phone calls instead of dreading a phone call that he's injured or something!
Which is why a parent shouldn't worry in the first place. There's always going to be something worse to worry about, than the trivial thing you're worrying about right now! Ha ha ha....
I even have a quote in there for that situation:
“Hope is not the conviction that something will turn out well, but the certainty that something makes sense regardless of how it turns out. ”
― Barbara Johnson
That puts a lot of my worrying into perspective.
Assures me that there is purpose in all things.
My Joy box reminds me that sometimes when I think I'm not getting anywhere, I need to go back and be reminded of where I've been. But most of all, my Joy box reminds me to laugh, and to laugh deeply. Something Barbara Johnson's writings were all about. Using humor to cope.
She laughed deeply, as do I each time I read this very last note my beloved Grandpa ever left under my pillow. It was a tradition of his to when they left from a visit, leave a note to me under my pillow that I would find that night.
Ha ha ha, - sorry Grandpop, but as many things in my life that have changed for the better ---- "cutting down on my sassing" hasn't been one of them!
But then again that's probably what has allowed me to bring about the most change in the autism world we live in..........
To each of us having a Joy box full of joy, love, and laughter!
To changing the world we live in!
May 13, 2012
It's no secret that I have a high regard and respect for the U.S. Navy SEALs. My son's hero is a Navy SEAL, and because of that I have read all there was to read about them.
As a Warrior Mom of Autism, those books have inspired me. Those books share about the mental strength one has to have to be a SEAL. The same mental strength a Warrior Mom of Autism must have as well!
SEALs for the most part fight enemies they can see using a battle-tested strategy they have studied and prepared for. Warrior Mom's have no such intel and must fight an enemy we can't even see --- autism. Oh, we know it's there and has captured our child - what we can't see is exactly where it is. What we don't know most of the time is what to do. Mainly for me because my son can't tell me where it hurts. What is bothering him. How I can help him. SEALs must fight the enemy using rules of engagement that aren't fair. Mom's like me are engaged by an enemy whose rules constantly change and whose tactics aren't ever fair.
SEALs become SEALs because that is what they want to be. They fight because they chose a path that would necessitate they do that. Warrior Mom's are not Warrior Mom's because that's what they wanted to be. They were made to be. They fight not because they wanted to, but simply because they have to.
Navy SEALs enlisted.
Warrior Mom's didn't.
SEALS are the best of the best, that one percent of the nation whose character, willpower, strength and stamina cannot be beat.
The Warrior Mom's I know are the same.
To become a Navy SEAL, that BUD/S Candidate must go through a grueling testing. One of the "highlights" in that hell, is Hell Week. Those candidates must endure every form of physical training and "surf torture" a person could endure, all while not sleeping for more than four hours that entire week. Some Warrior Mom's I know have gone weeks on four hours of sleep. That Hell Week pushes those candidates to the ultimate extreme of what a person can handle both physically and mentally. As does Autism. They must be able to endure and survive Hell Week if they ever hope to survive a deployment to a war zone once a Navy SEAL. We must survive a diagnosis of autism if we ever hope to rescue our child from it. It's an unforgiving training, and one that is necessary if they are to become what they want to become and are -- the Nation's best of the best.
As much as "Hell Week" is the highlight of a Navy SEALs training, "The Bell" is the highlight of Hell Week. The bell as pictured above, is located at the "Drop Area" on the base in Coronado where they train. When a candidate can endure no more, for reasons only they know, they take that solemn walk to where the bell is and they ring it. They place their helmet under that bell on the concrete in a row where others before them have done the same. To the candidates who see that bell each and every day, it is either a friend or a foe. It is a motivator encouraging and challenging candidates to Never Quit as much as it is a tease that begs them, taunts them, and assures them they will give up and quit.
The test for a SEAL wanna-be -- is which voice will win.
I guess for me on this Mother's Day, as a Warrior Mom of Autism, -- I find that bell and all it represents more inspiring than any gift or Hallmark Card. I know that as a mom whose son is severely affected by autism and in all the ways that diagnosis has affected our lives - that bell represents all the extremes I have endured. All that all Warrior Mom's of Autism endure. In what we have to go through each and every day from the moment our child is taken by autism. In trying to reclaim them from that autism we sometimes daily go through our own Hell Week. For the SEALs, "The Only Easy Day was Yesterday". For us, "There Ain't No Easy Day."
Heck, there ain't even no bell for us to ring even if we wanted to!
Let that sink in...
In their training, the elite of the elite have a bell to ring for their pain to stop when they've had enough. They can choose to ring it and be free of the pain, or go on enduring the pain for the triumph over it that their earned Trident pin, the symbol of a Navy SEAL, will bring.
I know no Warrior Mom of Autism who has given up.
What I do know, is that there is a row of helmets of those who have tried to defeat us or our child, but failed.
The reward for those of us who never give up isn't a trident to wear, but our child that we've healed.
Or died trying to...
And that's what I want to share with my autism-mom friends on this day. Especially for those like me whose child cannot even make them a card for Mother's Day or tell them that they love them.
That you are the top one percent of Mother's in this Nation, in this World.
You have endured what no typical Mother could ever endure.
You have made it through each Hell Week autism has thrown at you.
You were not given a bell to ring when you've had enough and wanted to quit - and even if there were one for you to ring ---
From reading about Navy SEALs to keep my own mental strength where it needs to be to survive autism, I came across Richard "Mack" Machowicz and his "NDCQ" (Not Dead Can't Quit) philosophy.
I'll leave you with his encouraging words on this Mother's Day---
Dream! Dare! Do! N D C Q!!
Keep DREAMING the wildest dreams for your child...
Keep DARING to defy those who say those dreams can't come true...
Keep DOING all that is in your power to change attitudes, policies, discrimination....
May 1, 2012
Click here to join the movement in demanding Congressional Hearings on Autism.
Click here for the Autism Awareness Month Blog - Thirty Steps in our Shoes
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.