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 (forgive the long excerpt, it’s worth the read)…

“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.”

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     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 who is 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.”

My Final Remarks

tombs001Facebook…If you are reading this, I have already made my decision to say goodbye. I have lost my desire to be in a relationship with you. In fact, somewhere along the way, I think our relationship has taken a turn for the worse and gotten a little bizarre. It started off good…a few friends that were “real” friends in “real” life. You helped me to keep in touch with people, share photos and silly kid stories with friends and loved ones out of state, strengthen bonds within already existing friendships.

But then, things started to get weird. Friends of friends started friending me, people from so long ago they were a distant memory, people I didn’t really know and never talked to!  And I didn’t want to be “mean”, so I accepted.  And I started noticing how other people lived, at least how they projected or I perceived that they lived…how many times they worked out, went on vacation, what they ate for breakfast, their thoughts on parenting, how their marriage was going…even public Facebook accusations of infidelity (?!) and without knowing it, I started to spread myself a little thinner.  I subconsciously started comparing myself, my life, my kids, my house and then for some reason, I didn’t feel quite as good about my life, or at times, perhaps went the other way and became shamefully prideful. But I brushed it off and vowed to compare less.

Then I started thinking about how odd it is that I know who’s loved one had died, or who was going through a painful divorce or issues with their kids…really intimate and hard life stages. Yet, if I ran into them in a store, I would NEVER have brought these issues up. It just wouldn’t be appropriate based on the lack of a shared, “real” relationship. I might even change directions to avoid seeing and greeting them. But yet, I knew such intimate details about their lives. Very strange and so unnatural…

And I realized that these same people that I don’t really know, know so much about my life (and I even consider myself a guarded fb user!)…my kids, their names, our struggles with autism.  Again things that might feel forward or intrusive if half of my Facebook “friends” were to ask.

None of these thoughts are new…they have all been stated much more eloquently by critics of social media.  I’m not sure what officially brought on this decision.  Maybe it’s the fact that I turn 40 this month and have far less tolerance for BS.  Maybe it’s because I’m so introverted and am perhaps becoming more so with age.  And maybe it’s being sickened by seeing it carried out ad nauseam in my teenagers and sincerely fearing the relational and communicative deficiencies of future generations.

I think all of the above is true. But I think I’m also coming to grips with the fact that I am an “old soul” trapped in a young-ish body.  My husband and I have boxes of letters from when we were dating. I prefer a hardback to a kindle, driving to flying, and walking to driving. I cherish being home with my kids and being available to help my husband. I don’t have a bucket list, nowhere I want to visit before I die. I just want to live a long and happy life with my husband and watch our kids and grandkids grow. Perhaps some would say this is settling or a lack of ambition. I think that has been my fear. But I have realized how inverted and backward we have become…how fearful we are of simplicity, of a life “merely” lived well.  It seems we are losing the ability to solely cherish things in our heart without having to broadcast.  Perhaps we are afraid to just BE, without feeling like we have to be something great.  As I jokingly (but also very seriously) say to my kids, “If it’s not on snap chat, did it even happen?!”

I recognize that what I’m saying is not for everyone, that social media can, in fact, be a great way to connect people. There is no judgment or condemnation in my decision. It’s just that for me, I feel the need to part ways for my sake and as an example to my children; that maybe, just maybe this whole social media thing is a little strange.  Perhaps it’s time to step back from technological advancements and connections, slow our lives, recalibrate, have real conversations and let go of ones that aren’t.  It’s a decision for me that has given a tremendous amount of peace and freedom and space to breathe that I didn’t realize was even missing.

Sometimes I wonder why I didn’t do this sooner, why I’ve drug this departure out for so long.  I think the biggest reason is fear.  I worry that if I’m not present on social media, people will think I’m weird, snobbish, or that I’m trying to make a trendy statement.  But mostly, I worry that if I’m not on social media I might truly just disappear and be forgotten about.  Perhaps that is true.  My circle is quite small and might get even smaller.  But the people that are in my life will be there by choice, not out of guilt or compulsion. I don’t want my life to be measured by the number of “friends,” the number of likes, the number of shares.

To my fb friends…there are a great many of you that I have enjoyed getting to know better and reconnecting with through Facebook…your humor, your insights, your hearts. Please understand that this is not a desire to become a hermit or escape from relationships, but rather a desire to deepen existing friendships in a real and authentic way.  I believe you all have my phone number, or at least know how to get it. You can also follow my blog…I don’t write often but if I do have something to say, it will be found here.

Goodbye Facebook…it’s been “real”.

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

Sail On

imagesIt is said around the time that Christopher Columbus set sail, that the English pirate Drake was raking Spanish holdings up the west side of the Americas.  As Columbus had sailed into the unknown, his fearful crew was allegedly on the brink of mutiny – mutiny, rather than come to the edge of…whatever.  Columbus, in this perilous atmosphere, made a stark entry each day in his logbook: “Sailed on.”

More often than not, were I to keep a logbook, I think that my entries might be quite the same, as are my days.  Wake up…work, kids, clean, errands, food…sleep.  Repeat. “Sailed on.”  When I am honest, there are often times that I find myself questioning, “Is this all there is to life?”  I’m convinced that monotony must be the cause of many mid-life crises.  We get stuck in the rhythm of our days, realize that life could realistically be half over, and feel a desperate need to break free from our own restraints, explore beyond the boundaries of our own boredom.

However, we all too often live our lives looking off into the horizon for the next great thing…marriage, a baby, a promotion, vacation, retirement…we are looking to “arrive” and missing the journey.  The thing is, we don’t know what lies on the horizon.  We don’t know if tomorrow will even arrive, and if it does, we don’t know if it will carry promise or catastrophe. We might quickly find ourselves longing for the boredom and monotony of yesterday.  Obviously, the key is to live with gratitude, finding value and joy in the day-to-day.  But I would also propose, as I struggle to live this reality myself, that we should not only strive to find joyful moments in the tedium, but also learn to lean in, settle in, relax and embrace the restlessness of simply sailing.

Just as it is often impossible for a ship to perceive forward movement on a vast sea without any landmarks, we too are often unable to sense any inner growth or progress in life.  But if we can accept and trust the process, the journey, the Captain, we will at some point be able to look back and see that it was all for our good…the sun, the storms, and the endless stream of days upon days.  So for now, I prepare myself for whatever the day will hold.  I’m sure the range will be vast.  And tonight, I’ll settle in and close out the day with another mental entry, “Sailed on.”

 

 

 

 

A Summer Tornado

downloadThe end of summer feels a bit like wandering through the aftermath of a natural disaster.  I mentally move from room to room, assessing all the damage that has been done after several months at home with five kids, mainly my autistic son.  A broken window in the basement…door jamb plates that have been sneakily unscrewed at some point to avoid “room time…” a broken lamp and glass candlestick in the storage that I’ve known about, but somehow, just can’t conjure up the energy to clean…broken glass tabletops from angry, slamming spoons as well as from the time he was “pretending” to throw a chair and slipped…broken doors and doorknobs (oh Lord, so many broken doors)…a garage door that won’t shut, a front door that won’t open…railings that have been ripped out of place…the list goes on and on…

And then there’s the internal inventory…everything I set out to do this summer, everything I hoped to be and do and just ran out of steam. Everywhere I look seems to be a reminder of my failures and shortcomings.  And it feels a bit overwhelming…a lot overwhelming, actually.  I basically want to pack it all up (or just leave it all behind) and move to Montana (or anywhere).

And tomorrow, he starts middle school.  My stomach hasn’t stopped churning since I realized how close the start of school was (a combination of sheer dread and simultaneous elation)!  I remember leaving him at preschool…I guess it was more like peeling him off of me and sprinting out the door…and this kind of feels like that.  I am always afraid of him feeling afraid, of him feeling lonely, of someone being unkind, of me not being there for him.

But in the daily midst of struggling to just breathe and not suffocate, a bright thought sneaks into my darkness.  My 16 year old son, who was standing on a teetering precipice, spent the summer fishing instead of partying, all day every day.  He came home happy at night and actually talked to us and laughed with us!  My daughter spent 5 weeks in Florida helping family take care of a household with 4 small children.  Last night, I sat up until midnight with my 13 year old son and 3 of his precious, giggling, hilarious friends as they tried to learn how to use chopsticks (and or course broke more glass in the process)!  My youngest daughter is still asleep with a friend in a fort they worked until midnight…and not a single electronic device was involved!!

I woke up this morning reminded (yet again) of the messiness and complexity of life.  I constantly feel like my life is either on the brink of a tragic catastrophe or sheer paradise.  They are both true, I think.  Every breath holds within it the potential for suffering and misfortune, as well as peace and prosperity.  But sometimes it is not so obvious which is which. Most days, I am incapable of discerning what events will lead to my downfall or my salvation. It all blends together in one chaotic, jumbled mess.  Perhaps it is all one in the same.  At times, I can’t see through my tears.  But on any given day, they might be tears of heartache or tears of laughter.  Life seems to be one huge contradiction.  It is concurrently chaotic and monotonous, sorrowful and joyful, dreadful and wonderful.

It’s pretty hard to hide and yet at the same time, hard to admit…I’m a mess, my kids are a mess, my home is a mess.  But I guess it’s the mess that makes us human, that makes us vulnerable and that humbles and refines us.  I can’t say that I always appreciate it, that I don’t at times try to close my eyes and make it all disappear.  But on better days, I can at least accept this beautiful mess called life…

 

 

 

 

Reading Color

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Today I met the most amazing man.  He is an older gentleman from Greece and he writes (draws) icons for Orthodox churches. He was sweet and funny but what I found fascinating was his ability to see color.  Now anyone who knows me knows that I am a bit obsessed with color. I love the undertones, the way they change from wall to wall, from day to night. I love colors that look blue and gray and green all at once, to where you almost don’t know what color you’re looking at.  I would get a Ph.D. in color if there was such a thing!  This is very different than my husband, who when asked which paint swatch he likes best, responds with a shrug and says that they all look the same (bless his heart, as they say in the South).  But I digress…back to the iconographer. What amazed me about this man is that he not only can read color, he  knows how to MAKE it!  He can look at a color and know how much black and white and red and yellow and blue would be required to CREATE any color!  He knows what to add if it’s too dark or how much to add if it’s too light and what colors enhance the richness of others.  This might be silly but it honestly mesmerized me.  I’ve been thinking about it all day.  What talent and skill!

soulAnd so I have come to this thought tonight…what if we could look at people the way that this artist looks at color?  What if we could have insight into the creation of their personhood, how they became who they are…their ups and downs, sorrows and joys, the moments that have either broken or resurrected them, what they currently long for?  What if we could discern exactly what “color” to add to enhance other’s lives and beautify their existence?  How much more patient and compassionate would we all become?  What if we could learn to look at OURSELVES this way?!  What if today, instead of seeing my irritability and the dishes and the messes and everything that feels like a failure, what if I could look at myself like a color, complex with constantly changing undertones, drastically different in the morning light, but beautiful nonetheless.

But alas, my eye is not quite as developed as this skilled artisan.  I still see only in tones and shadows.  I do not look deep enough or close enough.  The late author Jonathan Swift writes that, “Vision is the art of seeing what is invisible to others.”  Oh, that I might have the eyes to see that which remains hidden in every person, and the knowledge of what to add so that fullness of color might be achieved.   Perhaps over the course of my life, I will hone my skill and attain proficiency.  In the meantime, I will remain restlessly content to aspire to those who have inspired.