Extra Ordinary?

Photo by Nigam Machchhar on Pexels.com

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.

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 Many Faces of Autism

I have wanted to publish a book for a long time… not a book with words or even illustrations.  Just a book of photographs.  I would call it, “The Many Faces of Autism.”  In this book, I would chronicle what autism in our house looks like on a day to day basis – the good, the bad and the ugly.

Most likely, I will never get around to a book of any sort.  But as it is Autism Awareness month, I’ve felt the need to do something to honor Autism, honor Grayson, and honor our journey that we’ve been on together.  I have put together a mini sampling of photographs (click on photos for descriptions).  Maybe this is something that only a mother can appreciate.  I really don’t know.

What I do know, is that sorting through these pictures has resurfaced so many emotions – sheer joy and pride, and grieving all over again at the hard reminders.  I remember the early fits and craziness, countless doctor appointments, and the constant helplessness that never left my side.  I remember peeking through the preschool window to see him pulling his hair and rocking, all of his frantic fears…plastic bags and umbrellas in the wind, the fear that someone would eat his food, touch his bellybutton, etc…etc…etc…  I remember crying the day that he ate his last Krispy Creme doughnut, knowing that a super restrictive diet was to start the next day, as we tried to heal his bleeding ulcers and bacterial gut infection.  This “diet” would kept me up until 3 a.m. trying to figure out what in the world to feed him and learning 1,000,000 new terms for allergens.  I remember never being more than 5 minutes from his school and the way my heart would race every time my phone rang.  I remember the screaming, sometimes hours on end, and feeling like death would be a welcome relief.

However, in spite of all of the heartache, what I mainly see when I take a bird’s eye view of these photographs is…GROWTH!  In the midst of the day to day fits and agitations and 50 TRILLION QUESTIONS, I can easily forget just how far he has come from the little boy that he once was.  These pictures serve as a sharp probe to remind me to count my blessings.  Sadly, I have gotten lost in my own agitation and impatience.  I have started seeing failures instead of successes, and I have forgotten how to laugh with Grayson and find compassion for him in his struggles.  I have forgotten that he is funny and sweet and smart and creative!  And in all of this forgetting, I have forgotten that although I may be tired, I am not a mean and angry, old and haggard witch (how I feel at the end of so many days).  I have forgotten that it’s ok to laugh and smile.  I have forgotten so, so much.  I have a lot of remembering to do, and quite honestly, this overwhelms me.  What if I cannot remember how to get back from where I came?  Perhaps I have never even been “there” and need to forge a new path??  But then I think of Grayson and all that he has overcome and become, what we have become together.  And I know that I can, and that I will, get where I need to go.

 Maybe this is the beauty of photographs.  They capture moments that trigger memories.  And though not immediately apparent, when viewed from afar, we are able to see that which was missed standing close up.  So, without further ado, I am happy to share, “The Many Faces of Autism…”

(Grouped into the following categories…Obsessions, Firsts, Sad Times,  Progressive Photograph-ability, Sleeping Anywhere, Crazy Moments, Precious Moments and my Favorite Notes from Grayson)

Unless a Grain of Wheat…

“My dad told me this once.  For a wheat seed to come fully into its own, it must become wholly undone.  The shell must break open, its insides must come out, and everything must change.  If you didn’t understand what life looks like, you might mistake it for complete destruction.”

-The Broken Way by Ann Voskamp-

 

I haven’t written lately because I haven’t had much to say.  And because some thoughts take longer to gestate than others.  Sometimes life has a way of washing over you like the ocean wave you didn’t see coming and suddenly,  you’re not thinking in words, you’re just trying to figure out which way is up and how to find your breath again.  Maybe it’s just me, but I feel like the older I get, the more I have to fight to hang on to hope and not give in to cynicism.  I have to work harder to see the glass half full instead of half empty.  I worry more than I ever have.  With the way the world is and a house full of present and upcoming teenagers, I recognize how much I stand to lose and how little control I possess.  And I just don’t have enough…enough patience, enough energy, enough love.  Many days feel like a battle, a monotonous drudgery at best.  And I become frustrated with myself that I can’t be more upbeat, less of a Debbie Downer, more like someone else, anyone else…

However, what I am being reminded of, is that there is no one who escapes life without struggle.  It is a part of the cycle of life.  Even if we lived in a utopian world, we would war within ourselves. But like a forgotten memory I am starting to recall a time when I knew better…a time when I was able to hold suffering in greater esteem.  Like birth pain, the struggle is more intense when you fight it, when you try to eradicate it.  I have forgotten that the best way to deal with pain is to breathe and lean into it, remembering that pain can give birth to breathtaking beauty.

I guess the last few months have left me feeling a bit like a wheat seed…like my outer layer has been has been smashed open, my insides spewed carelessly about.  And it kind of feels like complete destruction.  But perhaps, if I can learn to accept all of life with grace, humility and gratitude, this “destruction” can be the springboard into new life.  The Orthodox church has a saying, “Out of death springs life.”  They serve boiled wheat at funerals and memorial services to physically remind people that death is not the end.  It is a good reminder that sometimes we need to be “undone” before we can become “done.”  And like the smallest sprout, I feel hope start to grow again.  Although pain is not something I feel the need to seek out, I also can feel the frantic need to escape it seeping away.  As wind and water can erode granite, so can pain shape and wear away my rough edges.  Sometimes it feels like life cracks us wide open to pain.  But perhaps, it is cracking us open to healing, breaking us so that we can live life fully.  I hope and pray that my soul will settle in, lean in, and learn to graciously accept all that comes to me with peace of soul and the firm conviction that all is sent to me for my benefit.

“Unless a grain of wheat falls to the earth and dies…”

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Photo credit to my youngest daughter, Reagan

Intentional Silence

undulations“Individuals, like nations, must have suitable broad and natural boundaries, even a considerable neutral ground, between them. I have found it a singular luxury to talk across the pond to a companion on the opposite side. In my house we were so near that we could not begin to hear, we could not speak low enough to be heard; as when you throw two stones into calm water so near that they break each other’s undulations. If we are merely loquacious and loud talkers, then we can afford to stand very near together, cheek by jowl, and feel each other’s breath; but if we speak reservedly and thoughtfully, we want to be farther apart, that all animal heat and moisture may have a chance to evaporate. If we would enjoy the most intimate society with that in each of us which is without, or above, being spoken to, we must not only be silent, but commonly so far apart bodily that we cannot possibly hear each other’s voice in any case.”

~An Excerpt from Walden by Henry David Thoreau~

 

It has been said that words are the most base form of communication.  In a time when everyone is concerned with finding their voice in the world, we forget the impact and importance of silence.  When we speak constantly, people stop listening.  Words that might be valuable, get lost in the sheer projectile volume.  Life gets big and chaotic and turbulent and if we rise to challenge it, we immediately begin to get lost in the noise.  This does not necessitate a passive, apathetic approach to life.  Practically, we must rise to meet to whatever stands before us.  But we cannot forget the value of first withdrawing into ourselves to subdue our inner turmoil.  When life gets big, we must get small.  If we mindlessly rush headfirst into pandemonium, we will only add to the cacophony and delirium.  We feel the need to say the right thing, do the right thing, and forget that silence is also a viable course of action.  How many problems in life could potentially be solved by just stopping, and waiting in silence?  The Tao Te Ching states that, “No one can make muddy water clear, but if one is patient, and it is allowed to remain still, it may gradually become clear of itself.”  If we are able to resist the urge to constantly fill time and space with empty and urgent words, silence becomes not only an ideal choice but also a familiar and comforting companion as well.

 

We can make our minds so like still water

That beings gather about us that they may see, 

It may be, their own images, 

And so live for a moment with a clearer,

Perhaps even with a fiercer life

Because of our quiet.

~The Celtic Twilight by William Butler Yeats~

                                                                                                               

 

 

 

 

 

Common But Not Normal

A study was conducted in 1967 by a man named Martin Seligman.  In Part 1 of this study, three groups of dogs were placed in harnesses.  Group 1 dogs were briefly put in a harnesses and then released.  Groups 2 and 3 consisted of “yoked pairs”.  Dogs in Group 2 were given electric shocks at random times, which the dog could end by pressing a lever. The dogs in Group 3 were connected to a Group 2 dog and received a shock whenever Dog 2 received its shock.  However, the lever did not stop the shock for Dog 3.  Thus, for Group 3 dogs, the shock was “inescapable”.

All dogs were later placed in a small box in which they would receive the same shock.  Dogs from both groups 1 and 2 quickly jumped over a low partition to escape the shock.  However, the group 3 dogs simply laid down because they had learned that they could neither control nor end the shocks.

Our culture has become like the dogs of Group 3.  We are being shocked over and over and we too, have learned that the shocks are inescapable.  School shootings, bombings, acts of terror and suicides no longer shock us.  They have become common.  Social media and the internet have taken over our children’s lives and “nudes,” and pornography have become not only common, but acceptable and even praised.  Nothing is sacred.  Sex has become more prevalent than a deep conversation and any sense of modesty has long been vanquished by oversexed bodies splashed across any possible avenue.

However, what we seem to have forgotten is that there is a difference between common and normal.  Just because something happens with frequency does not mean that it is normal.  Prostitution is common but it is certainly not normal behavior.  We have forgotten that humans are created good, in the image of a Creator, and that it is the good that should be considered normative.  We, like Group 3 dogs, have laid down in the midst of the pain.  We have accepted the shocks as routine and no longer even look for a way out.  I must admit that I do not see any readily apparent escape route from that which is “common” in our world.  But I certainly refuse to look at any of the aforementioned issues as normal.

8cc0f5ce9f52d4c095ff419c2d25f05fThis age of tolerance which is good in many ways, has also caused us to turn a blind eye and accept much of what is unacceptable.   I realize that there is no way to stop the “shocks,” but we can at least jump over the partition of resignation and try to live a life that seeks to regains true normalcy and right thinking.   Although painful, I truly believe that it is better and more fully human to grieve and suffer through the shocks that to become desensitized and lay down in defeat.

“Ugly” Beauty

When my daughter was young we visited a women’s monastery.  There was a young nun tending to the chickens.  By all cultural standards, she was not pretty.  Her face was broken out and scarred, she had thick glasses and braces.  Her dark eyebrows formed a solid line, giving the appearance of a heavy, furrowed brow.  However, she warmly invited my daughter to help feed the chickens.  They chatted and laughed like old friends and when they were finished, my daughter casually remarked to me, “I hope I can be as pretty as she is some day.”  Her statement stopped me dead in my tracks and pointed out my embarrassing and blaring inability to see true beauty.

I’ve been thinking a lot about beauty lately: not the Victoria’s Secret/Hollywood kind of beauty, or even the glowing sun setting over the mountains kind of beauty.  I’ve been mulling over the idea of true beauty…soul beauty.  This kind of beauty might outwardly appear revolting or undesirable at the very least.  But for those that have the eyes to see, it is the purest form of beauty, ignorant of age, race, gender or religion.

I have a lifelong friend who is a cancer survivor.  After she lost her hair and struggled and fought her way through chemo and radiation, her hair began to grow back.  Naturally, she was self-conscious, but as she was bathing one night, her little girl petted her head and offhandedly commented how much she loved her mom’s cute, tiny baby hairs.  Those little stubbles of hair growing out of a bald head were beautiful.  My dear friend in a weakened state of vulnerability was beautiful.  It just took someone with the eyes to see.

I have another friend who while walking toward an elevator got stuck behind a slow moving mother and her child with special needs.  The child walked abnormally, shuffle-shuffle-clap, shuffle-shuffle-clap.  The mother was trying to move her child along to allow people through and apologetically glanced back at my friend.  Before the mother had time to offer an apology, my friend enthusiastically exclaimed, “Look at your beautiful child! He’s clapping to the rhythm of his steps perfectly!”  The shocked mother admitted that this was indeed what he was doing.  A child finding his own rhythm was beautiful.  A mother trying to be sensitive not only to her child, but to those around her was beautiful.  It just took someone with the eyes to see.

In each of these cases, our well-intentioned society might try to “fix” that which is “ugly”…make-up and a wax job for the sweet nun, a wig for my friend with cancer, therapy for the child walking irregularly…thus allegedly beautifying each scenario.  But in doing so, we dictate what we think beauty SHOULD look like and lose sight of what true beauty actually is.  True beauty functions like a magnet.  Those who are unable to perceive it will be repelled and perhaps even repulsed.  But for those that have eyes to see, true beauty will attract, draw in, and connect people on a soul level.

I realize that I severely lack the eyes to see.  I feel sorrowful when I recognize how much of my own soul is uncultivated, wild, ugly even.  But in order to avoid hypocrisy, I must practice seeing the beauty in my own soul.  I must nourish what is good within me instead of dwelling on that which is lacking.  And like a novice photographer sharpening his eye for what will make a good photograph, perhaps my vision will become clearer, less muddled by the confines of society, more free to see what is true and pure, more grounded in that which is real.  May we all have the clarity of soul to see the true beauty that is found in the “ugly”.

 

Christmas Humility Comes Early

An “amusing” half-day in the life of a mom and a kid with Christmas anxiety

imagesWednesday December 21, 2016                                                                                                              

3:00 p.m.     Grayson gets in the car with an amazing bag of Christmas goodies from his teacher.

3:01 p.m.     He immediately gives everything away to his sister because “it’s stupid.”

3:02 p.m.     …and quickly takes half of it back because “it’s actually pretty cool.”

5:30-5:45 p.m.  A flurry of questions concerning what time we will have to leave to get to church, how long church will last, how long the drive will last to get to Christmas dinner destination, will we eat or open presents first, if we will open presents all at once or one at a time, if he can open Christmas presents alone in a room instead of with everyone, how we will get all the Christmas presents back to our house, etc…etc…etc…etc…etc…

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The Loathsome Hover Ball

8:30 p.m.       Grayson is allowed to open one early present after asking a mere 50 kajillion times.  He looks at the half-spherical soccer ball that lights up and gives the appearance of floating  (that I THOUGHT he would enjoy), somehow manages to clench his entire face almost completely shut, throws the ball on the ground 3 times all while jumping up and down and raging about how stupid it is and crying hysterically.  I’m simultaneously trying to hush the muffled laughter of four other children so things don’t entirely explode.

8:31 – 9:00  p.m.     A series of going down to his room to cool off and coming back several times eventually ends in him agreeing to practice the CORRECT way of graciously opening a present that you don’t like and keeping unkind thoughts “in your brain,” to which he adds upon the conclusion of our practice session, that next time, he will wait until he’s calm to tell them that they didn’t pick out a good present.  Sigh… I give him an “A” for effort (as I’m trying to keep the simultaneous exasperation and laughter “in my brain”).

9:02 p.m.          …aaaannnddd he  is fighting with his sister over who gets to play with the AWESOME soccer ball and trying to think of a good place to hide it where no one will be able to find it while he sleeps.

9:15 p.m.         Grayson decides to move all of his presents down to his room so that he can open them alone in the dark in peace and quiet.

9:16 p.m.         He decides that upstairs is actually better and returns them all to their spot under the tree.

9:45 p.m.        He is sleeping!!!  Husband and I giggle and plan next year’s holiday game – everyone has to act like Grayson when they open their worst present.  Grayson opening “bad” presents is rapidly becoming an annual tradition that we have learned to find a certain amount of humor and endearment in.

9:50 p.m.        Mom labels presents from #1-7, worst to best, so that he will know what to expect and wraps a jar of pickles to practice on in the morning.

Thursday

5:33 a.m.          I am awakened to thunderous footsteps tearing through the house and a breathless child excitedly telling me that he opened another present but don’t worry it was an electric toothbrush that clearly wasn’t for him because it was dumb (it was for him).  I tell him I don’t care if he opens all of his presents.  I want to sleep.  Leave me alone.

5:34 a.m.       He is back to tell me that he won’t open any more presents and maybe I should hide them…just in case.  I tell him in the most patient words I can muster to get out and never come back.

5:35 a.m.       He’s back again.  He wants to know what he should do with the toothbrush.  I’m getting up as I can see that this sleeping thing is clearly not going to work for me.

5:36 a.m.       I’m stumbling (literally) to get coffee and explain my disappointment… “I like to watch you open presents…Daddy isn’t even here…I’m going to have to keep all your presents in my room so you don’t do this again.”  Grayson looks at me with his eyes filling up with tears, his chin starting to quiver and explains to me in a cracking voice, “I just wanted to practice so I could do a better job at opening my presents.”

5:37 a.m.        All of my irritability and sleepiness drain through a single tear trailing down my cheek.  I shut my mouth and stop explaining and start listening.  As hard as it is for me, it’s harder for him.  I hug him and tell him, “Good job.  I’m proud of you.”   Thank God for my early Christmas gift  – a dose of humility and a reminder to slow down and sit with him in his world.