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…

 

 

 

 

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Something Old, Something New…A Lesson in Redefining Beauty

simply-imperfect-flowers.jpgAs a designer, I tend to be very particular about the things that I see as beautiful.  In my own home, I confess I love things to look contemporary and fresh and just-so.  I love rotating new items into my existing decor.  I quickly get rid of things that look dated or worn.  However, I have recently had the pleasure of reading two wonderful, albeit very different books, that have greatly challenged and broadened my view of aesthetics. 

The first book, called “The Wabi-Sabi House,” addresses what the author (Robyn Griggs Lawrence) refers to as “the Japanese art of imperfect beauty.”  She states, “The subtle messages that live within wabi-sabi are the things we all seem to long for today: Slow down.  Take the time to find beauty in what seems ordinary – and to turn the “ordinary” into something beautiful.  Make things yourself instead of buying those spit out by a machine, and smile when your work is flawed.  Wash your dishes by hand, and most important: learn to think of others before yourself.”  Wabi-sabi finds beauty in things that are old, natural, broken, simple and earthy.  I must say, it is a challenge for me to find beauty in old things.  I love new trends and styles and experimenting in my home. I am not sentimental or much of a collector.  I have five children and often value efficiency over, well…basically everything!  However, I am stretching myself by attempting to slow down and find beauty in unexpected places, while incorporating small touches of imperfect and meaningful beauty at the same time.

The second book by Nate Berkus, “The Things That Matter,” thoughtfully covers the idea of filling your home with items that carry personal history and significance.  He opens the first page by sharing, “I’ve always believed your home should tell your story…Those cuff links?  They belonged to somebody I loved: we picked them out on one of the most perfect days we ever spent together.  That tortoise shell on the wall?  There was one exactly like it in my mother’s house and I can’t see it without thinking about a thousand inedible family dinners.  Each object tells a story and each story connects us to one another and to the world.  The truth is, things matter.  They have to.  They’re what we live with and touch each and every day.  They represent what we’ve seen, who we’ve loved, and where we hope to go next.  They remind us of the good times and the rough patches, and everything in between that’s made us who we are.”  I love this!  And while this may come quite naturally to some people, this concept has given me quite a bit to think on.  My family has never valued THINGS very much, which is both positive and negative.  While we are not tied to our possessions, we also don’t have any family heirlooms that exchange hands or generations.  I have purchased every single thing in my home…no gramma’s rocking chair, mother’s cookbooks, dad’s tools, nothing!  This honestly makes me a bit sad, but also determined to do things differently for my children.  I have started purchasing (or keeping) something special for our home every time we travel: horse hair pottery from South Dakota, my husband’s first emptied out clam shell from Maine, a wooden manatee to remind us of the one that chose to swim with us in Florida.  When my gramma passed away, I carefully elected to save a jade letter opener that reminded me of her (I never knew anyone who actually used a letter opener to open letters)! 

While I still openly profess my love for all things new, I am also committed to expanding upon what I have traditionally viewed as beautiful, and to looking through an object into its past.  I am looking forward to owning THINGS that matter, things that will one day cause my children to re-tell my stories to their children. And I eagerly anticipate the lessons that I know will come…as I learn to find perfection in imperfections.

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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)

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.

Speaking the Unspoken Truth

**Spoiler alert – contains spoilers regarding the movie “A Monster Calls.” **

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Over Christmas break, I took my kids to the movie, “A Monster Calls,” based on the New York Times Bestselling book.  I had no expectations or understanding of what it was even about.  That being said, I managed to cry my way through the last half of the movie.  It is very rare that a movie grips my mind and thoughts long after the credits are through rolling.  But this movie was so poignant and in my opinion, touched on the very struggle of what it means to be human.

The story is told of a young boy whose mother is facing cancer.  He has a recurring nightmare in which he is holding onto his mother who is about to slip into an abyss and he cannot hold her any longer.  The boy repetitively wakes up just as he loses grip and she begins to plummet.  The long and short of the plot is that an ancient tree awakens and shares three stories and tells young Conor that after the third story, he will tell his story (nightmare) and will tell the truth of it.  The following is an excerpt from the book.  Forgive me for a lengthy quote but I cannot summarize in any way that would do it justice…

From A Monster Calls by Patrick Ness

“Because, yes, Conor knew.  He had always known. The truth. The real truth from the nightmare…  ‘Please don’t make me,’ Conor said.  ‘Please don’t make me say it.’  You let her go, the monster said.  Conor closed his eyes tightly but then he nodded.  You must speak the truth and you must speak it now, Conor O’Malley.  Say it.  You must.  ‘It’ll kill me if I do,’ he gasped.  It will kill you if you do not, the monster said.  You must say it.  You let her go.  Why?  And then he spoke the words.  He spoke the truth.  He told the rest of the fourth tale.  ‘I can’t stand it anymore!’ he cried out as the fire raged around him.  ‘I can’t stand knowing that she’ll go!  I just wanted it to be over! I wanted it to be finished!’  And then the fire ate the world, wiping away everything, wiping him away with it.  He welcomed it with relief, because it was at last the punishment he deserved.

‘It’s my fault,’ Conor said.  ‘I let her go.’  It’s not your fault, the monster said, its voice floating in the air around him like a breeze.  You were merely wishing for the end of pain, your own pain, and how it isolated you.  It is the most human wish of all.  ‘I didn’t mean it’ said Conor.  You did, the monster said, but you also did not.  Conor sniffed and looked up to its face which was as big as a wall in front of him.  ‘How can both be true?’  Because humans are complicated beasts, the monster said.  How can a queen be both a good witch and a bad witch?  How can a prince be a murderer and a saviour?  How can an apothecary be evil-tempered but right-thinking?  How can a person be wrong-thinking but good-hearted?  How can invisible men make themselves more lonely by being seen?   ‘I don’t know,’ Conor shrugged, ‘Your stories never made any sense to me.’  The answer is that it does not matter what you think, the monster said, because your mind will contradict itself a hundred times each day.  You wanted her to go at the same time you wanted me to save her.  Your mind will believe comforting lies while also knowing the painful truths that make those lies necessary.  And your mind will punish you for believing both.  ‘But how do you fight it?’ Conor asked, his voice rough.  ‘How do you fight all the different stuff inside?   By speaking the truth, the monster said.   As you spoke it just now.  Conor thought again of his mother’s hands, of the grip as he let go ~ Stop this, Conor O’Malley, the monster said, gently.  This is why I came walking, to tell you this so that you may heal.  You must listen.  You do not write your life with words, you write it with actions.”

The bare naked truth of the matter is that we all have secrets.  Perhaps we have never actively done anything horrifically wicked, but we have all had thoughts that would mortify us if spoken out loud.  I will be embarrassingly transparent regarding a personal example.  One day, my son threw a fit and ran away and was threatening to run into a busy road.  His fits are not uncommon, as a child with special needs, and it had been a particularly bad week.  As he ran toward the street, the thought flashed through my mind that if I let him run and there was a fatal accident, my life would be so much easier.  Of course I stopped him from running, yet I felt crushed under the weight of my hideous thought and punished myself internally for days.  This is one of many reasons why the above scene absolutely pierced my heart.  Anyone who has suffered or experienced grief also understands the desire for an end to pain, for an end to the isolation of it, for an end to the weariness of it.  After that incident, I did some intense soul searching and demanded of myself to know how any decent mother could ever even allow the faintest of such thoughts to be entertained.  I felt like a blasphemous cartoon character deserving of the proverbial lightning strike from the sky.

And so, many of us carry this needless guilt and shame.  We begin to identify with these fleeting thoughts.  We even may hate ourselves at times for thoughts we have, ways we have hurt others, and the supposed truth over who we are.  But herein lies the problem.  We are not the summation of our thoughts.  We are complicated beasts, as the monster so aptly points out.  It is possible to be wrong-thinking but good-hearted.  Life does not seem to have the same problem with dualistic truths as we humans do.  But we must learn to speak the truth.  We must own our morbid thoughts.  We must open up our dark, cobwebbed closets and let even the smallest aperture of light in.

Ultimately we must understand that the majority of our terrible thoughts do not stem from some deep-rooted wickedness within, but rather a wound that needs to be healed (“This is why I came walking, to tell you this so that you may heal.”).  Our ugly thoughts, our rage, our embarrassing failures all serve as an indicator to show us where we are broken, where we are suffering, where we need mending.  What good would it do to suture up an infected laceration?  It would only fester and rot and cause further damage.  This being the case, we still hide in shame rather than risk being exposed.   And so, we suffer while smiling and silently endure our infected wounds.  We would rather die than expose the truth.

However,  if we will be brave enough to speak that which is unspoken, we will find peace and freedom.  We will find that our thoughts, once uttered, become powerless over us.  The shackles of guilt and self-chastisement will fall away and we will realize that our thoughts are simply…thoughts.  They do not define us.  They cannot control us.  And then, we will reclaim the power to write our lives with our actions, instead of being tormented by our thoughts.

“Conor let out a long, long breath, still thick.  But he wasn’t choking.  The nightmare wasn’t filling him up, squeezing his chest, dragging him down.  In fact, he no longer felt the nightmare at all…” 

Why Write?

quotes_creator_20161228_225929I have had some unanswered questions rambling around in my head for a while.  Every time I sit down to write, they bother me.  Sometimes they’re almost enough to make me give up.  They are like a persistent child, knocking on the bathroom door and driving me crazy.  This redundant mental interrogation asks of me, “What is the point of writing a blog?  Why are you even doing this?”

It’s taken me a while, but I think I finally have the answer.  This afternoon, I sat outside Target, seething, trying to wait out my son’s raging fit over absolutely nothing.  I was pretending to not notice everyone’s curious stares, trying to look like a nice, patient mother, while wrestling with my not-nice and not-patient thoughts.  I couldn’t go into the store, I couldn’t get him to the car, so I just sat on the wall outside of Target and tried to make friends with my anger and embarrassment.

Upon reflection, I realize how many “outsides” I’ve frequented over the course of his lifetime…outsides of churches, schools, restaurants, grocery stores…always at the end of the football field, closest to the exit door at basketball games.  I have not made friends with parents or other adults because I knew I would never be able to sustain conversation.  I don’t talk on the phone unless he’s in bed and I try to go to the fewest places possible when he is in tow.  Please understand, I do not say this to complain or out of self-pity.  Rather, this revelation has helped me to answer my own question…

I write because for the first time in literally ten years, I feel connected with the outside world.  It makes me feel human and normal and not trapped in my own house.  I feel like I can share protracted ideas with other adults and have the space to listen to responses.  I write because like a man coming out of Plato’s allegorical cave into daylight, it is easier for me to write than to speak.  I write because it is something that I can genuinely, albeit meagerly offer of myself.  I write to leave a paper trail, so that if anything should ever happen to me, my children will know my heart and thoughts.  Finally, I write for myself.  When I write, time stops and my world gets small.  It’s like reconnecting with a long lost friend…I have forgotten how much I love it.

So to anyone who has taken the time to read, and especially to comment, thank you.  Thank you for helping me to not feel so isolated.  Thank you for allowing me the privilege of hearing your thoughts and ideas.  You will never know the gift you have given to me.   With gratitude…