I guess the reason I so want to describe our time in Maui with poetry, is because everything we saw in Maui was poetry. The sights, the sounds, the experiences. I saw poetry way below where people live in the coral reefs that were teaming with life in some of the most brilliant colors, sizes, shapes, and forms. I saw it on the summit of a freezing cold mountain looking down through the clouds at the view below. I saw it under the bridges where we climbed down steep cliffs because we wanted to witness God's beauty up close and not from afar. I heard it in the sound of nature's wind chimes in the peaceful clanging of bamboo stalks in the bamboo forest as the wind would get tangled in the tops of the stalks far above us.
For me, in Maui, so very often poetry in pictures was the reward of patience in waiting for the perfect wave to break and clicking the button at just the right instant. So very often in my day I find myself hurrying. Hurrying to finish chores before Brandon gets home. Hurrying to cook dinner. Hurrying, hurrying, hurrying. It was so nice to let nature be in charge and demand that I learn once again how to slow down, stand still, and savor.
I've seen beautiful flowers before, but there, in the absence of autism, seizures, stress, demands, I was free to just focus on the beauty of God's creations. Appreciate it. An ordinary flower became extraordinary. That's what poetry does. It brings out extraordinary emotions from simple ordinary words.
I think I let my "Life with Autism...and Seizures" take a bit too much from me these last few years. I can look back and feel good about how I have done my best to stay focused, be positive, choose happy... Keep the faith. But those are things I did for my son, for my family, for my sanity. Not necessarily for me. I needed something radical to do as the quote says, in allowing me to once again truly marvel at something. I needed to feel a sort of healing like that which I was praying and working so hard for, for Brandon. I needed to once again feel the downpour of the bigness of God washing over the smallness of me!
I guess we all at once time or another need to go on our own journey of renewal. Fight a battle for ourselves, not anyone else. Accomplish something for us. Not always just for autism. For me, the preparation for our trip and the conquering of fears has been long overdue. These were fears I could overcome, which I'm thankful for. In my "Life with Autism...and Seizures" there are so very many fears that I can do nothing about. Have little control over. No matter how much faith I try to have, I still fear for Brandon's future once I'm gone. No matter how many positive thoughts I think, I still think that Brandon will have a seizure and fall if he's out of my sight or reach for even a moment. I can feel proud of all I've accomplished in autism advocacy, but in the process I seemed to have forgotten about accomplishing anything for me! This trip was a chance for me to change that. To go, do, and be. To overcome and reclaim. To renew me, and not just our marriage vows. Getting in cardio-shape the first order of business! Spurts of seizure panic do get the heart rate up, but it doesn't prepare you for five mile hikes up or down 800 feet inclines, no matter how gradual they may be, that some of the trails would be. Learning how to lap swim, properly, so that I could swim laps for aerobic endurance. With back issues and no ACL in my knee, running was out. Swimming the best exercise for my situation. I had to learn to swim properly to get Scuba certified or even to just snorkel and swim confidently in the middle of the ocean in the middle of nowhere! I am very comfortable with being at sea level, but for this trip I would have to deal with the fear of heights in driving up a mountain that was 10,023 feet above sea level. And walking around up there! My dear son did little to alleviate that fear when he would purposely stand on the edge of cliffs that had signs reading: "DANGER: FATAL CLIFF." To be able to get Scuba certified or go snorkeling along the reef of that underwater volcano crater, I would have to overcome an uncontrollable gag reflex. Avoiding the things that trigger that in the dentist office is one thing, but to prepare yourself for not letting it stop you from putting a snorkel in your mouth to explore life below sea level was a whole other preparation. One where I found myself throughout the day staring down that blasted snorkel sitting on the table mocking me as I would pick it up and force myself to tolerate it for 5 seconds, 10 seconds, 15 seconds, before gagging it out. It did stop me from becoming Scuba certified, you can't be 100 feet underwater and suddenly gag out your regulator and hope to make it to the top slow enough to not burst your lungs yet fast enough to not drown! But even in defeat, I can count myself victorious in that I was able to snorkel. I swam with sea turtles and felt like a Mermaid. I perfected having the biggest smile in the world while still being able to keep the snorkel in place and water tight! It was one of the most exhilarating experiences ever.
In the panoramic picture below, it still amazes me that I hiked down, and back up, that trail that you see. When you are standing at the lookout point from where this picture was taken, all you see are specks of people below. I was one of those specks. I truly marvel at that.
I think for some things, there simply are no words. Just feelings as when watching a sunset. Or sounds when listening to the lullaby of crashing waves. Clattering bamboo. The silence of a rainforest interrupted only by the sounds of the exotic creatures it shelters. Poetry is seeing the beauty of a volcano, yet appreciating its power and potential destruction. It's standing on the top of the world one day while knowing that just the other day you were swimming below sea level, in another world.
I think why I love poetry so much is that it seems to be the only place where acknowledging defeat, despair, or doubt can be made into a beautiful thing. Everyone seems to only want to hear about the "Don't worry, be happy" mentality of life. We don't want to acknowledge that we sometimes hurt. That life isn't always fair no matter how good you are, how much good you do, and how many biomedical interventions you've done. Sometimes things still suck. Sometimes your child still isn't recovered. I was so reminded of that after we got home from our trip of a lifetime. We were thrown right back smack-dab in the middle of autism and seizures. Thankfully we had a few days grace period, then seizures began again, nearly daily, and we were once again reminded of why we so needed that vacation in the first place. But even in that, there was beauty. Strange, bittersweet, beauty in the poetry of heartache and hardship. I'd like to think that I've been most moved by the good times, but I wasn't. That my most precious pictures were the perfect ones. They weren't. This picture of the Pipiwai Trail is a poem that illustrates my "Life with Autism" in how it has been difficult to navigate, yet not impossible. The tangled mess of autism and seizures making the journey hard, but not impossible. That's how you know you've written a really good poem. When it's about darkness, yet the reader goes away with light. I want to be that kind of poet in life.
I've been so blessed to have been given the opportunity to see and experience such poetry. Perhaps that was God's answer to the question I have always asked in why I can't seem to write the poetry I try so hard to. He used this trip to show me that it's ok. I can just enjoy the poetry around me that he wrote. That he created. The poetry of life that each of us are a part of. That humbles me. How each one of us in the good, bad, or ugly of our lives, are part of God's poem of life.
I think of myself sometimes as Winnie the Pooh, I guess. A fierce warrior when it comes to fighting for someone else, yet too quick to short change myself when it comes to challenging myself. This trip was the quote Christopher Robin said to Winnie:
"You're braver than you believe, and stronger than you seem, and smarter than you think.”
We all are. All of us who buckle up on this crazy, mad, wonderful poetic journey of life and who are thrown into living it as my friend says, "A hundred miles an hour with my hair on fire." I'm so thankful to Bill, his family our dear friends who we met up with while in Maui... At the largest waterfall on the island at the end of a very long day of climbing and driving, I was content to sit on the boulder and watch everyone go under the waterfall. Bill said to me, "You aren't going to have come all this way and not go stand in that waterfall!" So I got up and climbed over yet another set of big slippery boulders, and stood in that waterfall. It was one of my most memorable moments of that trip!
As much as this trip was my opportunity to go, do, be, - it was for both Todd and I to go, do, and be as husband and wife and not caregivers giving shift reports.
I can still hardly believe that I went to Maui. That I was fearless. That I did what I thought might be impossible for me to do. Most importantly, that I had the opportunity to truly marvel at something again. I saw the most beautiful poetry and the only way I could respond to it then, and now, is like this:
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Dedicated to each of my autism friends who have endured reading this. You are some of the most beautiful and most favorite pages in my life's book of poetry. Your support. Your prayers. Your encouragement. Your smiles. Your faith. Your help. Your humor. Your wisdom. Your caring. Your sharing.
To each of you ---
And to Happy Someday... Mahalo for giving me an opportunity to marvel again.