My journey through life with autism, seizures, - and a side of crazy, mad, wonderful.
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
Of Planes, Prayers, & Perfect Smiles
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."
Of Planes....
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.
Of Prayers...
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....
Christmas Eve Brandon had a seizure... We had plans to go to my brothers Christmas Day and thought all would be lost because of that seizure. But Christmas Day came and while wobbly, Brandon could still walk and so off to his house we went for our traditional Christmas breakfast and opening of Santa gifts there. Brandon laid down on the couch most of the time and then in the sweetest of moments in the middle of gifts being opened, wrapping paper thrown about, -- the biggest smile erupted from Brandon's solemn, expressionless face. One of the biggest smiles I've seen in such a long time.
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 what money can buy.
December 6, 2012
My Grown Up Christmas Wish...
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...
Unconditional love.
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 -
HOPEISM.
Long ring the bells of Hopeism.........