because 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 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…
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)
“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…”
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.
This 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.
**Spoiler alert – contains spoilers regarding the movie “A Monster Calls.” **
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…”
Our little town prematurely lost a teenager to suicide yesterday. Everyone is feeling the weight of something like this happening so close to home. And the fact of the matter is that there are no words to offer, nothing to be said that can alleviate or comfort anyone who is truly suffering. Suffering is pure blackness. It is a deep, dark pit with room for only one. Meals can be made, words of consolation spoken, but at the end of the day, no one can help carry the pain. No one can make time pass more quickly. The only way through suffering is right down the middle…there is no bypass.
However for those standing on the outside looking in, tragedy and suffering act like a flash forest fire. In an instant, everything superfluous gets burned away like dross. We are stripped of all pretenses and become aware of our mortality, the shortness of life and what we are living for that truly matters. We become painstakingly aware of how our priorities have gotten off-kilter, how busyness is running our life, and how unappreciative we have become. We see with clarity (if only temporarily) what is important in life.
In other countries where monasteries still play a major part in daily life, the first thing that a monk often does is to dig the grave that he will one day be buried in. This is not due to a morbid fascination with death, but rather as a reminder to live well so as to be prepared for death. What would life look like if we could preserve the somberness, the softness and the vulnerability of suffering? What if we could more consistently expose our weaknesses, our pain and our naked self without fear of condemnation? What if we all dared to live a more authentic life?
There is nothing that will lighten the load of the tragedy that has taken place. Nothing will comfort a grieving mother struggling to survive her first day without her son. But perhaps through our response, we can redeem what has been lost and live longer in this gift that suffering has to offer. Love and prayers for anyone who is suffering today…