I had never seen a lavandar bush before and yet there i stood in a field full of lavander. I sat in silence and just listened to the crickets and the silence. My mind sat in a state of shock over what I have been experiencing over the last eight years. I took in a deep breath and just looked at the open expanse and let the shock rush over me. Finally, finally a moment to breakaway and process all that I had been dealt. As i stood there with my arms crossed I closed my eyes and watched the daily replay in my mind. For just this one moment there were no Dishes to do, therapists to see, door alarms to test, special needs buses to catch, insurance companies to call, laundry to do, beds to clean, restraint chairs to figure out, restraint harnesses to adjust, emotions to regulate and dreams to forget. For just this one moment i could breathe, I could think.
I have held it together for so long. I have lost all sense of pride and humility sits at the forefront of every interaction or relationship. I realized as i slowly lowered myself on that jagged rock at the corner of the field just how tired i really am. Im tired of trying so hard to fit in a world i cant understand. Im tired of trying so hard to save a boy that quite possibly cant be saved. My mind wandered to all of the pain i have seen in my life. My heart found those patients on the psychiatric unit, they didnt ask to live from unit to unit. My heart found my kids, they didnt ask to live in a house with screwed shut windows and a freaked out mom. Lastly, and maybe more importantly, my heart found myself.
For just a moment I didnt feel guilty for leaving him home. For a moment i allowed my selfishness and let the anger take center stage in my soul. I let myself be angry at him for biting me, I let myself be angry that because of his illness my marriage is strained, I let myself be angry at him and i didnt feel guilty. For one moment, I let myself blame him. I didnt make excuses, i didnt protect him from my natural instincts I let myself think what i needed to think. (stay with me here before you get angry there is evolution) I pictured all the family meals we could not have because he was kicking us or hitting us or not staying in his seat. I pictured him on my friends living room floor ready to kick me and i didnt hold down the anger. I let it be. I accepted the fact that i was angry. I accepted my exhaustion. I accepted my morose demeaner i adorn every moment of everyday and its the best thing i could have done. It was honest. It was liberating. It was required. It was real.
I thought about that stop we made on our drive in and how anxious I felt in that Wendy’s because it was so full. I thought about how David was shocked that I didn’t know how to work the coke machine because it was touch screen and had so many choices. I stood there staring at that machine and thought “have I been out of the world that long that I don’t even know how to get my own coke?” and just hit the regular coke button because people were growing inpatient behind me. and right there in that Wendy’s line i felt that jab of loss. What else was i missing? We later stopped at a McDonalds and they had these screens where you could order your own meals and I looked at it crookedly and thought, “but there is a worker right there. I don’t understand this” as I walked up to the counter I wondered how much longer i would be able to navigate a world I rarely get to interact with.
This weekend away was amazing. It was a good reset. It was a good time to reconnect not only with my husband but with myself and the world. I was able to stand in the place where i said “yes” at the age of 23. I was able to walk down the street and blend in. I was able to laugh, and learn and take in the sights without fear. And as i stood at that window staring out over the bay and the big outdoor pool where people were relaxing and playing I couldn’t help but smile and know this was my chance to breakaway and that’s exactly what I did.
I promised myself that I would not think about autism. I would not think about therapists, insurance companies or worry. I turned off my phone, my mind, any judgment i had of myself and allowed myself to feel whatever my soul wanted to feel. I allowed myself the chance to work through it without distraction. I allowed myself to exist. But i knew that soon, I would have to return home so i took it all in while i could.
what i thought in that lavander field as i worked through that anger was why… why was I angry? and after about 45 minutes of watching people pick strawberries with their little girl it occured to me that i was angry because there was a boy in there that I loved. There is a soul trapped that i used to be able to reach that i cant reach any longer. Im angry that this “disorder” has stolen so much from us. I am angry that there is a whole world out there that we cannot touch because of this thing called Autism. I’m angry that everyday as i listen to therapy in session i cant help but wonder when he will reach that wall that everyone talks about. What then? What about those neighbors across the street who after just three weeks of living in our home came barging in our house because Aiden was hanging out his second story window in his underwear or that police officer that found him three streets over walking around aimlessly with no shoes on? How do I silence the words of that news article that those with autism have a shorter life expectancy (mid 50s) which means that one day i may need to bury my child. I just let it all go. Let it all sink in. For the first time. And then i realized that it wasn’t the “what if” question or the “what then?” or even the “How” the real question in my mind became “why?” and it all boiled down to one word “Love”.
I make it through every day because of my intense love for him. I do all this because i Love him I gave up everything even my pride for him because I Love him. I don’t run away from him when every part of me wants to because of Love. Because i know that every part of me lives for him. but that’s not enough…. I need to starting living for everyone else too…. i need to give myself permission to feel the reality. I need to give myself permission to fail and not beat myself up for it. I need to take those moments and let the anger out. I need to take that slap shot and miss the net on purpose just to hear the sound echo in the arena. Its okay to not understand or ask “why”. Its okay to cancel a therapy session just because I’m not up to it that day. Its okay to drink some wine at noon when the day has already gotten away from me and my to-do list is three pages long and growing. Its okay to stand in a field of lavander and feel completely defeated and lost. Its okay to leave him home if even for just one moment of normal. Its more than okay….. its required