Extra Ordinary?

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I had a dream last night. I guess it was more of a nightmare, really. I was auditioning to be an actor in my own book, which of course, makes zero sense whatsoever. But such is the way our brains seam together the jumbled pieces of our lives while we lay sleeping. My old college volleyball coach was running the audition, and although I had written the book, she kept telling me I was reading it wrong – my expressions weren’t quite right, the intonations slightly off. She would work with me and do her best to help me but at the end of the day, I wasn’t exactly right. I just didn’t have “it.”

I woke up with tears pooling in the corners of my eyes and still don’t think I have fully woken, although it is now late in the afternoon. The feeling has lingered and dampened my day. Most of the time, I feel healthy, strong, proud of who I have worked so hard to be. But sometimes, a simple nonsensical dream invokes my broken parts, my hurting parts, the parts that tell me hard as I may try, I will never be enough. I am destined for a life of average-ness, these parts remind me. And they speak with such authority that I am meekly tempted to agree.

My sweet husband tries to reassure me and informs me that I am above average in everything I do. That in all of our years together, the only average thing he has ever witnessed has been my feeble attempts to cook fried chicken. I laugh through my tears and counter his comment. Regarding fried chicken, I am highly deficient. The damn obstinate breading just won’t stick! He wants me to see myself in the way he sees me, but his viewpoint is biased, so I disregard him as a flawed character witness.

I go on a walk to shake off my dream. The sun is abnormally warm for this time of year, and I know I should savor it. But my haze follows me and dulls the sun’s rays.

A phrase emerges to the forefront of my mind, one that I saw in bold letters on a recent advertisement – BE EXTRAORDINARY! Extraordinary? Extra – ordinary? What does this strange word mean? Is that the same thing as being more average? Is extraordinary better than normal or just a double-dose?

I wonder what I am striving for in wanting to be better than average? To whom am I comparing myself? If I consider myself to be “average,” would being extraordinary simply mean being more of myself, more fully me? If I don’t step up to fill my own shoes, who else is remotely capable?

More questions than answers today, but suddenly, I notice the sensation of sun on my face. My muddled haze is gone, and my insides feel settled and not quite so angry. Maybe it wouldn’t be such a bad thing to be extra of my ordinary self, to let go of the striving desperation and fall headlong into faith and trust.

I become aware of birds calling one to the other, and their uniquely “ordinary” calls lift my spirit from my own depths. They are only doing what they have been created to do, yet it is, of course…extraordinary.

On The Need to Feel Normal When Nothing is Normal

An excerpt from I Know Why the Caged Bird Sings by Maya Angelou and an essay on special needs parenting:

“In our society, where two-legged, two-armed strong Black men were able at best to eke out only the necessities of life, Uncle Willie, with his starched shirts, shined shoes and shelves full of food, was the whipping boy and butt of jokes of the underemployed and underpaid. Fate not only disabled him but laid a double-tiered barrier in his path. He was also proud and sensitive. Therefore he couldn’t pretend that he wasn’t crippled, nor could he deceive himself that people were not repelled by his defect. Only once in all the years of trying not to watch him, I saw him pretend to himself and others that he wasn’t lame.
Coming home from school one day, I saw a dark car in our front yard. I rushed in to find a strange man and woman (Uncle Willie said later they were schoolteachers from Little Rock) drinking Dr Pepper in the cool of the Store. I sensed a wrongness around me, like an alarm clock that had gone off without being set.
I knew it couldn’t be the strangers. Not frequently, but often enough, travelers pulled off the main road to buy tobacco or soft drinks in the only Negro store in Stamps. When I looked at Uncle Willie, I knew what was pulling my mind’s coattails. He was standing erect behind the counter, not leaning forward or resting on the small shelf that had been built for him. Erect. His eyes seemed to hold me with a mixture of threats and appeal.
I dutifully greeted the strangers and roamed my eyes around for his walking stick. It was nowhere to be seen. He said, “Uh…this this…this…uh, my niece. She’s…uh…just come from school.” The to the couple – “You know…how, uh, children are…th-th-these days…they play all d-d-day at school and c-c-can’t wait to get home and pl-play some more.”
The people smiled, very friendly.
He added, “Go on out and pl-play, Sister.”
The lady laughed in a soft Arkansas voice and said, “Well, you know, Mr. Johnson, they say, you’re only a child once. Have you any children of your own?”
Uncle Willie looked at me with an impatience I hadn’t seen in his face even when he took thirty minutes to loop the laces over his high-topped shoes. “I thought I told you to go…go outside and play.”
Before I left I saw him lean back on the shelves of Garret Snuff, Prince Albert and Spark Plug chewing tobacco.
“No, ma-am…no ch-children and no wife.” He tried a laugh. “I have an old m-m-mother and my brother’s t-two children to l-look after.”
I didn’t mind his using us to make himself look good. In fact, I would have pretended to be his daughter if he wanted me to. Not only did I not feel any loyalty to my own father, I figured that if I had been Uncle Willie’s child, I would have received much better treatment.
The couple left after a few minutes, and from the back of the house I watched the red car scare chickens, raise dust and disappear toward Magnolia.
Uncle Willie was making his way down the long shadowed aisle between the shelves and the counter – hand over hand, like a man climbing out of a dream. I stayed quiet and watched him lurch from one side, bumping to the other, until he headed the coal-oil tank. He put his hand behind that dark recess and took his cane in the strong fist and shifted his weight on the wooden support. He thought he had pulled it off.
I’ll never know why it was important to him that the couple (he said later that he’d never seen them before) would take a picture of a whole Mr. Johnson back to Little Rock.
     He must have tired of being crippled, as prisoners tire of penitentiary bars and the guilty tire of blame. The high-topped shoes and the cane, his uncontrollable muscles and thick tongue, and the looks he suffered of either contempt or pity had simply worn him out, and for one afternoon, one part of an afternoon, he wanted no part of them.
     I understood and felt closer to him at that moment than ever before or since.”

****************************************************************

     Tears, in glasslike sheets, now soak the lower half of my face, pouring down my neck, filling the concave spot at the base of my throat, running down my chest as if I were a human downspout directing a flood. This…now this I understand. Only one who has experienced judgment and rejection could write in such a way that captures this specific and underrated need…the intense need to feel normal, if only for a moment. Only one who has known the shameful embarrassment of standing out the wrong way in a crowd could appreciate the total joy of disappearing in blissful anonymity.

As the mother of an autistic child prone to violence, elopement, and very demonstrative public fits, I know all too well this craving to blend in, to feel normal – even if only briefly. During painfully public displays, I too have frequently caught the eyes of others, reflecting like mirrors, either contempt or pity. After years and years of such reflections, I can no longer remember what I actually look like. Somewhere along the line, these gazes have become my truth. I have, at times, come to believe that I am the despised beast or the pitied creature… this, and nothing more.

And so I’ve manufactured ways to convince others of my normalcy, that in turn, normalcy might be reflected back to me; and so that I might believe, albeit momentarily, that I lead a normal life. Like Uncle Willie, I stand erect, hide the cane, disguise my limp, shoot daggers at anyone who might threaten to give away my secret. Normalcy has become both my shield and my crutch. If I look put together, no one will know that I am a mess. If my house is well-decorated, no one will know that I am crumbling inside.

But somewhere along the line, “normal” began to lose its appeal. It became common and dull. I looked with fresh eyes upon my “high-topped shoes and cane, my uncontrollable muscles and thick tongue,” and I held them with the tender love and compassion of a new mother. I allowed myself the freedom to cry the tears long dammed, and in reverential silence, bore witness to the shame and embarrassment so deeply buried. I gave myself permission to grieve the looks of contempt and pity and the years of feeling anything but normal. I looked closely at the “me” who was hiding behind the protection and shelter of attempted normalcy and extended a soft hand to ease her transition into the light.

And as this timid part of “me” stepped forth in high-topped shoes, leaning heavily on a cane, thick-tongued and muscles yet uncontrolled, I grabbed her and pulled her close in an understanding embrace and softly whispered in her ear, “I love your cane. I love your high-topped shoes. I love your thick tongue. I love your uncontrollable muscles. Look no longer into the eyes of others for feedback; from now on, look only within. Enter the world, not as you wish to be, living the life you wish to be living, but enter as you are, living proudly the life you actually lead, back into the world as it actually is. Limp as you will, but limp with your head held high. For within that limp is contained all suffering, sorrow, madness, and despair. Within that limp is contained all things wild and uncontrollable, and within that limp is contained all love, joy, beauty, and depth of soul. Our humanity is held within each fragile and broken step we take, and so, do not hang your head in shame for that which is shared between all humans. Re-enter the world, still broken, still healing, and reclaim your rightful place within.”

Huge Small Victories

IMG_5358This weekend we went away for Grayson’s 13th birthday.  I definitely wasn’t in a celebratory mindset going into the weekend, as we had gone through multiple mind changes and so much deliberating about where to go, who should be included, where we would eat at, what we would eat, what the hotel would be like, etc…etc…etc…

The small farm-to-table restaurant was delicious, but did not have “normal food.” There were multiple breaks where Grayson left the restaurant to calm down, and several episodes of concealed (but silent) tears beneath his tightly drawn hoodie while hiding his head underneath the table. Although he tried bites of everything I asked him to, his dinner basically ended up being the “normal” gluten, dairy, egg-free cake that I made for him and brought from home.

The next morning at breakfast, he walked up to our server to ask for his drink by himself and she patted him on the shoulder as he turned to walk away. It was this small, but monumental event that changed my dutiful weekend into a celebratory one, filled with gratitude, amazement and a quiet but firmly substantial joy. 

Any parent that has a kiddo with sensory issues, knows that a touch from a stranger has the potential to turn into a full blown meltdown. But on October 27, 2018, Grayson’s 13th birthday, he didn’t flinch. He didn’t even seem to notice that a stranger had touched his shoulder. 

I was reminded of being in a similar hotel in Missouri approximately 11 years ago. Grayson was sick and on prednisone and a complete mess. He was red-faced, screaming, and asking for juice in the hotel restaurant. He then proceeded to hurl the full cup of juice all over the floor once he received it. This was the same weekend that he bit his new baby sister’s toes and made her bleed for no apparent reason at all.

I also remembered the first time I tried to take him swimming with his siblings at the community rec center. After his screaming and crying calmed down, he proceeded to sit on my lap and repetitively buckle and unbuckle this life jacket for the duration of our time there. 

But on his 13th birthday, we went to a hotel and a new restaurant, and a monstrous skatepark with huge ramps. He didn’t have a melt down.  He asked for help from strangers when he needed it.  He navigated his way through the skatepark while we sat and watched and he tried new things and worked through his fears with the skills and coping mechanisms that have been taught to him by angel-teachers through the years. 

On the morning of his birthday, he wrote me this note, using the voice-to-text skill that was again given to him by teachers as a gentle accommodation when writing by hand was hard for him…IMG_5346

For any parents struggling through a brutal introduction to life with a special needs kiddo…it can get better. The progress is slow and often imperceptible, but the payoffs are immeasurable. I have learned more from him than he could ever learn from me, and although I have questioned over and over if I am the right mom for him, I know beyond a shadow of a doubt that he is the right child for me.

“Love…bears all things, believes all things, hopes all things, endures all things.                     Love never fails.”                                                                                                                                    I Cor. 13:7