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.
November 28, 2011
This is our "Life with Autism" Christmas Mantle decoration for the holidays. Well, the picture represents our "Christ-Giving" decorations. For all of November, I have Fall/Harvest/Thanksgiving decorations out. Then the week of Thanksgiving, we put up the Christmas decorations. Thus, our "Christ-Giving" week of family & fellowship at Thanksgiving. Then after Thanksgiving, all the "Give Thanks" and Fall/Harvest/Thanksgiving Turkey decorations go back in the attic.
I have to chuckle when I look at our mantle and that Nativity scene. When typical people look at their decorations, most likely the first sentiment they think of is the memory behind the object. A family heirloom, the child's first ornament, etc. But as an autism warrior-mom, when I look at a Christmas decoration in my house, I think of how many before have perished before I learned the fine art of velcro and super-glue. Now, all of our Nativity things are cemented to a board by super-glue and velcro, then triple velcroed to the actual mantle. No more Brandon helping the wise men reach their destination quicker by launching them through the air. No more migranes for Mary after she was thrown against the wall by a caught-red-handed Brandon as he ran off after ditching the evidence of messing with things he knows he's not to mess with. No more finding the little drummer boy swimming in the toilet. Gotta love decorating "Autism" style!
But back to the Nativity scene in the picture...
Today was the "back to reality" day after a wonderful week with family here for Thanksgiving. All the cooking done, all the leftovers eaten. All of the quiet after all of the laughter from game after game that was played. The teenagers upstairs on play-station, the children in our playroom/fort under the stairs that Todd built to resemble what a treehouse would be outside; and us "old folk" at the tables playing cards...
So yeah, that back to reality brought a tedious day of picking up where I left off before last week, - in trying to answer parent e-mails, trying to find a doctor to help Brandon, trying to track down some lab results, while faxing others to yet another doctor clear across the country.
In trying to determine when my world would start spinning again. As the mom of a Navy-man about to go off to Boot Camp, I feel like I'm in a time-warp. A black hole where while everything else goes on, my everything is in a stand-still. Wondering if Matt will leave next week as planned, next month, or the one after, etc. As a mom of course I want any extra moment with my son. As a mom I know that the sooner he goes, the sooner he comes back.
This trusting in God's timing thing has always quite frankly frustrated me. I believe in it. I know it to be true, but it's still hard. I haven't mastered patience.
God knows that. And that is why when Brandon's cup went missing yet again today, --- I was inadvertently blessed yet again by yet another dose of his perfectly balanced blessings.
(see link below for original writing on "Perfectly Balanced Blessings")
Brandon has this unbreakable habit of leaving his cup wherever he walked off to when he drank it. Always seeming to perfectly balance it in the oddest places. We've found it on a pillow on his bed. Perched on the edge of the couch. In a remote corner of the garage atop a tool. In the middle of the floor. On the banister. On the TV. On a chair.
Most often when we find it in such a precarious place, it's because we need a laugh.
But today, I found it in my Nativity scene.
Because I needed a lesson.
God knew that all I was thinking about and doing today, were things that are not in my control, but in His. So he directed Brandon to put that dadblasted cup in the only place in my house that so fully represents that.. Under the cross, in the Nativity scene, with Baby Jesus. By the Angel that was right next to the big "Give Thanks" Thanksgiving decoration.
As with each time, in each place I have found his cup, I could only smile and shake my head in total humbled amazement about how God uses such a boy as Brandon, to be such a Blessing to me. God doesn't need a perfect person to make his point. All he needs is a person willing to deliver a perfect message. Today God used the sweetest, simplest boy to direct me to the simplest answer to the most complex, perplexing thoughts I was having.
The answer to any problem, stumbling block, challenge, loss, need, -- anything that threatens to steal anyone's Christmas Joy this season, can be found where I found Brandon's cup today. Right there by Jesus. Right at the cross.
I don't know if I'll get any help with Brandon's medical needs. I don't know if his seizures will ever stop. I don't know if Matt will be here this Christmas or not...
But what I do know, what memory I will cherish this Christmas and every Christmas to come, is the finding of Brandon's cup. Having all the questions that haunted me, answered in finding a green cup. I found peace in finding that cup today. And that green cup will remain right where it is. Super-glued alongside the figurines.
Reminding me to...
Leave my burdens at the cross.
Give my worries to Jesus.
Know that Angels are watching over him.
When things don't go as planned, when people threaten to steal my Christmas joy, I will only have to look at my mantle, see Brandon's cup, and be reminded of how this child of mine, this boy who society treats as the least of these, who bullies laugh at and call stupid, this boy who doesn't even know what Christmas is, --- lead me to God's Perfectly Balanced Christmas Blessings.
Thank you Brandon....
Read the original "Perfectly Balanced Blessings" by clicking here
~ ~ ~
November 21, 2011
I think it's the Asperger's in me that dictates how sometimes I relate better to animals than people. So it's no wonder that my 40-something years of life on this earth have always been filled with animals.
I remember when we were looking for a family dog a few years ago after our previous dog had been hit by a car and needed to be put to sleep. Being an autism-family, you can't just go "pick a dog." It has to be right for Brandon. Good breed, good temperment, etc. I was searching online and found a website of a local breeder. Champion Labradors and other breeds. Right here in the same city where I live. I looked at the prices and quickly surmised that we could never afford that. But, something made me e-mail the owner, Kelli. I don't remember our conversation, but it centered around looking for a dog that would be a good fit for Brandon, our son with Autism. She invited me out there, she had a puppy needing a home and we might be able to work something out. The moment I saw that little Chocolate Labrador that had a cut on his head from unfortunately having his head in the line of fire of his brother's sharp little teeth -- I fell in love. He was exceptionally sweet and cuddly because Kelli had been holding him in her lap for a great portion of the day, with a warm compress on the cut. There was just one problem. When you have a child with autism, you have no extra money. I guess she shared that with the co-owner of the dog - and long story short, Brandon had a new puppy that was given to him out of the kindness of a stranger's heart who lived several states away.
Matt, my other son, named him Chevy. After his truck, a Chevy Silverado. (gawd I feel sorry for Matt's baby one day!)
Though Chevy comes from Champion lines -- a Champion mother and father -- he was never formally trained by us to do great things. Yet it will never escape me how great things have been done through him regardless.
I remember the time, in a moment of human normalcy (Autism parents can't have "human" moments, we must always be in Super-hero mode. Nor can we have "normal" lapses of memory like normal people do, like forgetting to lock one of the dozens of things we must keep locked in our house at all times, lest we want a flood, fire, or a flight risk) one of us left the yard gate unlocked. We each thought the other one had eagle-eyes on Brandon, so we weren't alarmed by the knock at the front door. We opened it to a neighbor we didn't know, but who apparently knew Brandon from seeing him out front with us on occasion. And knew enough about him that she shouldn't have seen him two blocks down the street on her way home. Todd was the first one to fly out the door in the direction she pointed. When I got there, I saw Todd coming up to Brandon. And there was Chevy. I guess Chevy thought Brandon was taking him for a walk, but knew enough about Brandon by instinct I suppose, that he should stay between him and anyone else. And that he did. When Todd got there some man was coming out of his house to see why a kid was hand-flapping in his front yard. Todd said by Chevy's stance between Brandon and the guy -- that the guy would never have gotten close enough to Brandon to ask him why he was hand flapping in his front yard.
And in yet another moment of human-normalcy that we aren't supposed to ever have in being parents of a child, youth, and now young-adult with autism -- Brandon escaped our radar again. I swear, Brandon can smell an unlocked gate or door from a mile away. I must find a way to cash in on this extraordinary skill of his! So we found ourselves frantically looking in all Brandon's hiding spots in the house, to no avail. I went in the back yard, only thing there was Chevy barking at the kids in the park. If I wasn't so busy looking for Brandon, I would have told Chevy to shut-up! Then it hit me. Chevy never barks with that pitch of bark. Chevy never frantically sniffs the air like he was doing. Chevy never barks like that, sniffs the air like that, nor shuffles nervously while looking over the fence like that. In the split-second I put all that together, I yelled in the house for Todd to go to the park. Brandon was there. Chevy knew he was over there and shouldn't be and he wasn't going to stop barking like that until we figured it out too.
Chevy, our sometimes psychopathic, annoying, loving, sweet, silly, hyperactive, smart dog. The dog who lays under my desk the entire time I'm at my desk working. The dog who can smell when Todd pulls in the drive way and is at the door waiting for him before I even know he's home yet. The dog who jumps on the trampoline with Brandon, puts up with his pinching and pulling. The dog who somehow understands that when Brandon does the sign for "more" that he must do "more" of whatever it was he was doing that amused Brandon. The dog who knows that when Brandon shoves him off the couch, it doesn't mean he's being mean, it means Brandon wants him to chase him. The dog who loves Brandon not for the affection he shows, but because of the food trail he leaves in his wake....that somehow makes it all worth it.
So imagine how I felt when I had to give up this dog. This dog who had become my therapy dog more than Brandon's.
The reason for that being as complicated as "Life with Autism" is itself. One that could never be fully fleshed out in one writing. One that has never been truthfully or accurately portrayed in any autism awareness campaign by anyone. Autism is merely sensationalized. Not even close to being accurately scrutinized in all the agonizing aspects of autism and just how far in a family the ripples of it extend.
Before August 2010 all our family had to deal with was autism, leaky gut, occasional cycles of seizures. Then after that date, it was all of that and the most relentless seizure cycle to date. Hundreds of myoclonic seizures a day (we didn't ever really count those, but they were there) as well as 3-4 Grand Mal seizures a day, every other day, every week. Not one break from any of it for over two weeks time since then.
It took a toll. A heavy toll. When my son wasn't having or recovering from a seizure, being picked up from school from a seizure or missing school from seizures, he was incessantly humming in some attempt to re-start his body systems no doubt. My husband and I were on constant alert that truly necessitated those super-hero powers all parents of autism must have. Again, no room for "normal human" behavior. No. Not with autism. Not for a second, not ever. Hence the toll autism takes. Add anything extra, and you have the very reason the stress of autism parents has been compared to the stress of combat soldiers. On the battlefield, combat soldiers can never be off guard. Nor can autism parents. The war for a combat soldier once home, never ends. Nor does it for an autism parent who must look in their child's eyes every single day and see the battlefield where they must continue their fight to reclaim what is still being taken by the enemy. No, normalcy has no place in "Life with Autism". When "normal" human behavior happens, their child wanders and most often drowns. When that happens their child has a seizure and falls down the stairs where they could potentially be killed. When normal happens, our kids get abused, neglected, or murdered.
While I have great Hopeism, choose Happy, and live Joyfully through all this, it still takes a toll. The few "me" moments I found myself with, all I wanted to do was go to the Nature Trails by myself. Not take a dog, not have to be responsible for anyone but me. The constant guilt became too much. My dog deserved better. He was still a puppy, he needed a lot of exercise. I could tell he was lonely, wanted to go for a walk too, but I had no time for multiple walks in a day. So I tried to find another dog to be a friend with him that he could romp with when autism got too busy and I wanted to just take myself for a walk. All that did was create two problems for me, instead of one.
Chevy was too active for the dog acquired to be his friend... So in desperation I contacted the breeder. A complete stranger to me in every sense of the word. Someone who owed me nothing. Someone who gave me everything in that free puppy a few years ago. And here I was essentially begging her to take him back because I just couldn't handle it anymore. If I couldn't save myself, at least I could save the dog that I loved so very much. I'll never forget the gut-wrenching feeling of driving him to her land. How horribly guilty I felt. Yet how wonderfully happy once there at how much he seemed to love running with the other dogs there. Room to run, new friends to run with, wrestle with, swim in a tub of water with. Thankfully a week or so later, Matt's girlfriend & family fell in love with the other dog. She was more a fit for their house than ours. They had just lost a dog, and the timing was perfect. I love how God works those things out.
And then I was alone.
No above and beyond the already above and beyond stress of having to care for one extra someone, albeit only a dog.
While the hole in my heart was trying to heal and I was getting some much needed "recovery" time, it did not ever escape me for one minute that the very reason I had to give up my beloved dog, is the very reason so very many autism parents find themselves in the position of having to give up their even more precious, even more worthy, even more beloved, - child with autism. I couldn't afford doggy-day care. I couldn't afford to pay someone to come run my dog.
Just like parents of children with autism.
All my dog needed was some friends to play with.
All our kids need are friends to play with.
All I needed was a place for my dog to go have fun, to get out of his stressful environment.
All parents want is a place for their children to go for recreation, to hang out, to have their own change of scenery.
All I needed was respite so I could refresh, recharge, renew.
That's all any parent of a child with autism needs as well.
It will never escape me how society doesn't get that. How churches don't get that. How autism organizations with millions of dollars to spend on respite that is desperately needed, don't get that.
But yet this stranger, this dog-breeder who knows nothing about autism, -- got that. She "got" that my dog just needed some time to run and play. She "got" that I just needed a guilt-free break. She "got" what my own autism community still doesn't "get".
Help. Real help. Tangible help. Free help. No waiting list help. Not ten-years-in-the-future-but-not-a-thing-now genetic kind of help. But rather someone being the right-here-right-now "hands" and "feet" of Jesus kind of help.
Something in her told her how desperate I was. Something in her told her to do that for me. Something in her told her I couldn't pay for the respite she was providing that I, and my dog, were so needing.
When I dropped off my dog, I had all his papers, to totally surrender him to her. I told her to find him a home with room to run and with kids to play with. She e-mailed me some time later. She asked if I was sure I wanted her to find another home for Chevy. But I just couldn't. I couldn't bear someone other than her, caring for him. She was Chevy's first mother. She cared for him when he had that cut on his head. Holding him in her lap, loving on him. But I knew she was too busy. So I told her I would come get him. My situation at home was still the same, but I'd had time to just care for me any spare moment I had. I felt I could better handle it all again. My super-hero powers were recharged.
I'll never forget the joy of having Chevy in my arms again. Of having above and beyond the already above and beyond chaos in our home again. Of my husband coming in our bedroom at night with the dog on his side of the bed looking at him like, "Where do you think you're going? This is my bed again!" (smile)
Kelli said that anytime I felt overwhelmed and needed a break, that I could bring Chevy back to her for some respite. For me, and for him. And that she wouldn't charge me.
I still can't comprehend that.
How autism organizations who have millions of dollars to spend just a portion of on funding respite programs that churches who have room to hold those events in -- don't. But yet how this woman, this stranger, who has no extra money, offered to help anyway.
And while we are all settled back into the crazy chaos that is our life with autism and my Chevy is back to standing guard beside me as I weed my garden, ready to pounce on any lizards, snakes, or bugs that may come out to attack me, I'll forever be grateful to that stranger, to Kelli, who saved this mom and her dog.
And I'll always wonder...
Who will be that person for Brandon one day?
When I can no longer care for him, who will offer to help?
Who will treat him like he was their own?
Who will be his Kelli?
Click below link to learn more about Kelli...