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.
June 7, 2013
Buying our "Redneck Beach House" - what we call our Camo-tent for Brandon that we take to the beach, was a first step. Open beach, open water, wandering Brandon. Yeah, we live on the edge of stupid and have lost all sense of smart. When people wonder why they may not see too many families with autism out in the open, that's why. It's "open." It's exhausting enough to try and supervise your child, youth, or in my case adult with autism in the locked down confines of your house and yard -- but to try and do that in the outside world -- as Todd would say -- it's often "non-recoverable." Too exhausting. And in my case, when your child reaches the age and speed where they can outrun you, it's down right dangerous. One of the things I miss most about my older son not living at home, is my most used phrase to him, "Matt, go catch your brother!" One of Matt's most used phrases to us, was "Nakaby Alert!" Oh, the memories.... And come to think of it, between our swimmer-son Matt not ever wearing anything but a Speedo all those years, and Brandon not even wearing that at times -- maybe the NIH or Autism Speaks should fund a study on the discovery of the naked gene. "How being allowed to play naked in the back yard pool as a toddler can influence having a child of your own with autism and the propensity to strip off their clothes."
Another one of our challenges was to get an Open Water Diver Certification. Todd went first, so that I could cheat off him if necessary! (smile) He came back from one class and shared with me something I hadn't planned on. As part of the certification, you had to swim so many laps. While I can swim and stay afloat, I have never learned how to "swim" proper swim-strokes. With goggles on, face in the water, etc.
(I wrote a separate blog about that challenge.)
I am so proud of myself for overcoming so many things to be able to be a real lap swimmer. The only challenge that remained, was one which relates to my "Life with Autism" as well.
The marathon vs sprint analogy.
I would be in that pool several times per week, and see all these graceful swimmers swimming steadily back and forth. Over and over. Not stopping. And there I would be, gasping for breath at the end of each lap, not being able to swim non-stop. It frustrated me to no end. Why couldn't I swim like them? Then it hit me one day... I'm swimming just like I'm living my life with autism. I've heard over and over and over about how "Autism is a marathon, not a sprint" and I really wanted to punch those who said that in the face. I have even said that a time or two in mentoring new parents, and I regret it. Maybe to some, autism is a slow, steady, controlled marathon run. But my life with autism is a series of sprints that leave me breathless and gasping for air by the finish line of each day. It is high intensity interval training where at times there is not even the benefit of a recovery phase. Those months where the yeast-beast had a grip on Brandon was one such period of time of no recovery. Not even in the wee hours of the morning. It was simply one long non-stop spring. It really always has been.
In my life with autism, no matter how much I would like to pace myself, it's nearly impossible. When school is out, you pick him up, come home and must do his routines, his meals, while at the same time trying to cook your meal in between 30 minute toilet times. There is no marathon in that. It is a constant series of non-stop sprints.
And that's exactly how I was swimming.
My life so conditioned to autism's demands, that even the cells in my muscles had forgotten how to pace themselves when given the chance. My husband had said this to me over and over at church, "Slow down! It's not a race!" He would want to casually walk to the sanctuary, stop to say "hi" to folks, etc. But no, there's Shell -- sprinting to the sanctuary. Afraid some autism disaster will happen so I must get there and get settled before it does. Life with Autism had all but obliterated my ability to switch gears. They were hopelessly stuck in overdrive! Same with swimming. No matter how I started out from the wall, by the time I got to the other wall I was out of breath. Too afraid that somehow I would hear my phone ring from my bag on the side of the pool indicating Brandon had a seizure and I would need to go get him. My body so conditioned to those calls the past three years, the past decade, that without even thinking it, my body was swimming as fast as it could in case that lap would be the last and I would have to yet again leave an activity or cancel a meeting or appointment to go get Brandon.
I think that's what had kept us from doing things. We never got to finish anything we started since autism, so eventually we quit trying. Realizing that was liberating. For me at least. I dropped once again the stress of trying to be like or live like, typical people. I may want to live my life with autism like a marathon, but my son's autism dictates that I must sprint. And hope that there might be a few recovery times between the intervals where I can catch my breath!
Once I realized why I was doing that, swimming so darn fast because I was afraid the phone would ring and I would have to leave, - I finally allowed myself the luxury of trying to swim a marathon instead of a sprint. I forced myself to go slow motion, to swim long easy strokes where I could breathe fully between each stroke so that I could swim a 25. Then a 50. Then a 100. Within two weeks, I was swimming a mile non-stop.
And you know, that phone never rang once.
I'm still working on being at peace with what I can do -- not what I wish I could do. When I walk the Nature Trails, I see the runners going non-stop. Sometimes I wish I could do that, but with a torn ACL and stress fractures in my back, it will not be worth it to try that. I will never be them. I don't want to be them. I need to be me. I need to keep the focus on challenging me to be the best me. Not the best them. They can run their 5K's and their Boston Marathon's. I'll swim or walk my 5K and my marathon and be just as proud of myself.
For me, life with autism might always be lived more like interval training sprints than a marathon. Typical parenting may indeed be a marathon, but for me, autism parenting is certainly anything but.
My goal is to quit trying to change that. You can't slow down and pace that which by its very definition cannot slow down or pace itself. That's where all my unnecessary stress came from.
All I can do is find other things in my life to balance out that sprint.
For me, swimming is my marathon.
I am so thankful I challenged myself to do that. Each day I look at that pool, look down my lane, I can't wait to get in and begin.
Who knows, maybe someday I'll even learn how to do a flip-turn...