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.”

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.”

 

 

 

 

Why I Need to Remember This…

FullSizeRenderbecause i get constantly get phone calls from school telling me he tried to stab a teacher with a pencil or that he tried to cut himself with a pencil sharpener blade or that he’s mad and can i calm him down.  because he asks me so many questions and has so many issues and arguments that by 7:00 p.m. i can’t even remember what i did earlier on in the day.  because he goes to school every day and his best friend is his teacher. because his remorse and sadness is sometimes too much for my weary heart. because every day i’m pretty sure God could have chosen someone better. because i spend all day frustrated and all night feeling guilty. because i’m at a loss for how to help my child. because in this captured moment, my heart melts, and i can set aside my fears and frustrations and simply see a human being…loving his cousin…needing desparately to be loved. and i’m pretty sure God gave him to me more for my sake than vice versa.

The Making of a Man

Sack-LunchI packed a lunch for my oldest son today.  I literally can’t even remember the last lunch I packed for him.  But today was his first day of work…a real job…manual labor.  Packing that lunch and sending him off on his own made me realize that even though on one hand, I’m counting down the number of days until I can send him on his way, I’m still holding onto him tightly with the other.  Even though he daily makes me want to scream, I don’t relish the thought of anyone in the “real world” doing the same.  I’m not a hoverer or a very tender mom.  I even feel a little calloused at time compared to other moms I know.  But today was hard.  It was hard to bite my tongue and not give advice.  It was hard to not worry.  It was hard turning him over to someone else who I know will (thankfully) make his life very physically challenging.  Ultimately it was hard to let him go and recognize that this is how men like his father are made…through hard work and hard knocks, through trial and error, falling down and getting up.  And none of that involves me holding his hand any more.  Just like that, my time with him has shifted and it is time for me to step back and lead from behind instead of in front, to teach through listening and silence instead of repetition of words.  Dropping him off, I felt the urge to reach out and grab his hand for old times’ sake, but refrained as common sense warned against it.  So I just watched him walk away without looking back, swallowed a little lump in my throat and drove away, alone with my thoughts and empty handed.  Who knew what a little sack lunch could do…

You Are Enough.

13323703_1046851035408719_7118944347292993062_oTo my new friend…and for anyone else who is struggling to feel that they are “enough…”

I can see you have a hard time recognizing the beautiful person you are and all of the wonderful things that you do.  I shared that until you are able to see for yourself how amazing you are, you would have to learn to trust those who best know you.  I realize that I just met you and don’t yet qualify for that role.  But I have been where you are and my heart hurts because I understand how you feel.

You approached me because of our shared struggle in raising special needs kids.  My impression of you right off was that you live with gratitude (you didn’t have to come up to me to say thank you), and you are courageous (for being vulnerable with someone you just met).  I quickly realized that you are exceptionally amazing because you willingly chose to bring two struggling children (that are not yours by birth) into your practically empty-nest home.  I don’t know if you recognize the magnitude of this choice.  It doesn’t matter if you have been scared or have second guessed yourself…you willingly exchanged your life for theirs and there is no greater love than this.

And forgive me, but I Facebook stalked you tonight.  I looked at your pictures and I didn’t see irritability or failure or anything else that you mentioned.  What I did see was a strong woman fighting to give two children a normal life; children that would have otherwise been lost to the proverbial system.  I saw two children living in a house surrounded with beautifully tended flowers and attending church in a loving community.  I saw birthday parties, extravagant school projects, Halloween costumes…all things that these children would never know without you.  I saw your beautiful smile in many pictures.  How many forgotten children never receive a genuine smile?  Do you realize what normalcy, consistency and safety you are giving to these kids?

Of course I know that there is more to meet the eye than what is portrayed on social media.  I know that you rage and cry and scream and want to drive off in your car and never look back.  But I also know WHY you feel this way.  It is NOT because of who YOU are.  It is because of the situation you are in and the ways you are being stretched and pushed beyond your capacity.  You are strong day in and day out.  You can’t even truly rest while you sleep because of the dreams and nightmares.  You are trying to love two children as your own, even though you missed out on the essential bonding years of infancy.  Not only that, but you work full time!!  In my book, this certainly qualifies you for some kind of major award! 

I can see that you truly want the best for these kids.  You really love them.  But I can also see that you’re tired, you’re depleted and you’re running on fumes.  You are human and you have a limited amount of time and energy.  So you have to, for everyone’s sake, eliminate all the needless junk in your life.  By this, I mean get rid of the self-imposed guilt.  Expel the hovering, vicious thoughts telling you that you’re failing.  And especially, eliminate (as you are able) all of the self-doubt that pushes you to believe that you’re not good enough, patient enough, loving enough, whatever enough.  You are you and that is enough.  At the end of every day you are empty.  This is because you have given everything so that they might want for nothing .  It will never feel like enough because they are bottomless pits at this point (regarding their neediness).  But with time, maybe their special needs will be less because of the backbreaking work you are putting forth now. 

Above all, try to look at yourself and everything around you with soft eyes.  Pursue beauty and that which feeds your soul.  Your face lit up when you talked about books…maybe you could make yourself a cozy reading niche?  Perhaps gardening or photography are undiscovered talents?  Regardless, figure out how to love, cherish, and respect yourself.  It is not selfish…it is survival.  Celebrate the small things, turn your morning coffee into a  sacred ritual.  Give yourself permission to sit and do nothing without judgment.  Fight for joy and pray for the eyes to see light and beauty. 

quotes_creator_20161219_090518And though I don’t know you well, know that I love you.  We are connected through our struggles and sufferings and I understand.  I understand that you sometimes feel trapped in your own life.  I recognize that you constantly feel as if you are on the verge of a mental breakdown and I am all too acutely aware of the guilt that has become your constant unwanted companion.  But I also see that you are strong enough.  You will have to work hard at resting, strive to surround yourself with love, and be a continual advocate for yourself and your family.  But I know that you can do it.  Hang in there and believe me when I say that you are amazing.  Good strength!

The New Man in My Life

There is a strange new man living in my house.  He is tall, dark and handsome.  Apparently, he is also extremely smart.  He’s always brandishing this alleged intelligence and for some odd reason, constantly feels the need to remind me of his self-proclaimed autonomy.  But it’s ironic…although he can drive a car, he can’t make a sandwich.  And even though he’s able to decode insane chemistry equations, he looks at me like I’m speaking in Charlie Brown’s teacher’s voice if I ask him to clean his room.  This same “man,” who I am barely allowed to touch, also crawls into my room at 4 a.m. asking me if I have any medicine for his “tummy-ache.”

This paradoxical way of living is making me a little insane.  If I relied on his feedback at all, I might be a bit schizophrenic and (only) slightly insulted.  I have been told I’m a dictator, a crazy woman, completely irrational, and even a crack-addict!  The unfortunate thing is, I’m not even sure that I completely disagree.  Sometimes I feel like the wicked queen, wanting to wave my wand and banish him from my kingdom forever.  Other days I feel psychotic, like I could literally strangle the life out of him that I imparted 16 years ago.  At times, I cry, mourning the loss of childhood and sweet innocence.  And on rare occasions, my sanity returns to me (if only briefly) and I am able to look into his eyes and see my child.  I see his fears and struggles, his pain and insecurities, his dreams and failures.  In an instant, he becomes a mirror to me and I am laid bare before my fears and struggles, my pain and insecurities, my dreams and failures.  I am amazed and humbled as I realize that even though it seems that he is fighting against me, in reality, we are fighting together…fighting for his personhood, his character, his soul.

This stage of his life can only be likened to a second birth.  Many days, I feel as though it is one big, fat, long contraction…sweating and toiling, but painful and very seemingly unproductive. But this time, I am not laboring to bring forth a child, I am laboring with my whole heart and soul to bring forth a fully grown man: a man who is loving and appreciative, respectful and kind, hard working and moral. This is not an easy task in today’s world.  So to get through the labor pains, I keep before me the hopeful glimpses into his heart…images of him on the river, hunting with his dad and brother, the amazing photographs he takes, his hidden self-reflective side…and I find my hope that one day, the hard work will be over and standing before me will be an exceptional human being.  Lord willing, we will be able to look back and laugh together at these days and what he has put us through.

43810047-young-woman-eating-popcorn-while-watching-tv-isolated-on-white-backgroundAnd then…when time has passed and he’s grown and married and fathers my first sweet grand-baby, I will pull up my chair and popcorn and eagerly await for the arrival of my dear friend Karma!

 

Mundane Motherhood

I remember I broke down in tears after I gave birth naturally to my first child.  I had worked so hard and had been so strong that the tears of relief literally came rolling down my face.  Today, I look at my boys. We are well into teenage years and even though the hardest years might yet remain, I could almost cry in relief because those early years were just. so. much.  To all of you moms with young kids and babies… now that I’m on the other side and have regained (some) sense of sanity, know that you are amazing. You pick up the same toys day in and day out. You hold the hand of a new walker and let them go up and down the stairs fifty billion times. You listen to the same incessant chatter and even though you feel like you might lose your mind, you smile and encourage the novice talker.  You sit and endlessly keep a drawer from shutting on their little fingers just so they can learn how to open and close.  You have the strength to get through the mundane, the love and loyalty of a mother bear, and the patience of a saint. The bad thing is, you don’t feel like it. You end so many days feeling like a failure, like you did nothing worthwhile, like nothing got accomplished.  All I can say after being a stay at home mom for fifteen years so far, is that everything will one day be worth it. You’ll see a picture of your teenage boys sleeping in a truck after a long hunting weekend and every little mundane task, and every never ending day will be so, so worth it.  Give yourself room to acknowledge that you have a very. hard. job.  Respect yourself enough to take the time you need to regather, and love yourself enough to be kind.  The world can be cruel enough without your own self-condemnation.  I know that everyone says this, but you will blink and they will literally be grown.  But contrary to what others may say, I don’t find it sad or remorseful.  I find it beautiful.  I love seeing my kids grow into their own person.  I love having real, tough conversations with them.  I love seeing their passions and even their pains.  It all reminds me that as a mom, I have been allowed to co-create another life, another real, live, struggling person.  It is humbling beyond belief.  I know that I still have a very long way to go.  But for tonight, I can fall asleep believing in my heart that every seemingly pointless moment was all beyond worth it.