Tag Archives: weary

Hope at 3am

Dear friend,

I started to write you a charming little story and was halfway through…when Tuesday night hit.

Let me just say that most of our days and nights are good. Not easy, but good.

For the past two months, however, Tuesday nights have been different. It’s as if autism grabs hold of our lives like a 1950’s sci-fi flick, the one with the pretty little plant that suddenly starts eating unsuspecting by-passers. But there are no cheesy special effects here. No curtain to peel back to see what’s behind. It is 2am, and life is loud and messy, all of our tried and true strategies failing.

I breathe in and force prayer into my mind and mouth, to drown out the noise and my ugly thoughts.

I ask God for strength for the next second.

I blow it.

And then I ask Him again.

Finally the raging battle, which is too big to be fought on earth alone, subsides. It is quiet. My son is asleep.

I stand in the bathroom with my toothbrush in hand. I have no energy to fall on my knees, or close my eyes. “This is really difficult,” I tell God as if He were standing in the bathroom beside me, helping me to hold the weight of my toothbrush. “I know you are here with us. I know, even when it is this hard.”

I turn on the television to clear my mind. I watch an ad for a body lotion that will shimmer in the light and make your arms “look thinner and more toned in your holiday dress” the voice claims. And then I hear about a door buster sale, with record-breaking low prices, on toys. More and more toys.

So let me clear through all the clutter and noise – in the midst of the Christmas season, in the midst of your Tuesday nights, or Wednesday mornings, or Saturday afternoons. There is one truth. Jesus.

God sent his one and only Son, Jesus, into this world as a tiny baby. He sent His Son into this world of Tuesday nights, to be our hope. God planned this before He ever created you or me, knowing that this world, and our hearts, would be filled with brokenness and struggle. He knows it’s difficult. He has not forgotten us. He tells us, “In this world you will have trouble, but take heart, for I have overcome the world.” He tells us, “Never will I leave you. Never will I forsake you.” He tells us, He knows the plans he has for us, plans to prosper us and not to harm us, plans to give us a hope and a future. God sent His Son Jesus into this world so that whoever believes in him shall not perish but have eternal life. Jesus is all that is true and noble and right and pure. Jesus is the One Truth left standing when all else has crumbled.

So I will save that charming story for another time. Because right now someone else might be standing in a bathroom at 3am with a toothbrush that is too heavy to hold alone. And if that someone is you, take comfort.

There is One Truth we can hold onto.

It is the same Truth that holds the whole world together.

Jesus.

Sincerely,

Emily

Max’s Two Words about Autism

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“Max!” I said with the kind of enthusiasm I hoped would be contagious, “We are going to like this new doctor. He has a daughter with autism!”

I tried to mask my own nerves, wondering how we would get through the next-day’s appointment in the city. I watched Max for a reaction as he bounced in his seat and started eating his dinner in a style reminiscent of a wood-chipper. Sometimes dinner in our house is so active that I think our dining room chairs should be equipped with seat belts.

“Max,” I cried excitedly drawing his attention away from the — gluten-free — grain-free — dairy-free — creation that only resembles food by the fact that it is on a plate.

“Who else has autism?”

Max’s eyes brightened. “Max has autism!” he answered, sitting up a little taller in his chair.

“Yeah! That’s right!” I cheered. “So we like this doctor already!”

Our over-zealous dinner conversation hung in the air as I took my first bite of dinner. The word autism has been a part of the conversation in our home since Max was very young. But on this night, when I gave that word a purely positive spin with Max, I felt like a fraud. I’m not telling him the whole story. And in truth, I don’t know the whole story Max would tell me. What would he say about autism?

Thoughts of this journey and the bittersweet sound of the word swirled in my mind. None of this has been easy, yet God has made it beautiful. Autism has been the fertile ground in which God has grown my faith. And it is the ground from which God has brought love and joy and goodness to us, and to others. There have been victories so sweet that I can almost feel myself climbing the stairs of the Philadelphia Museum of Art, hands thrown up in the air like Rocky Balboa, shouting that we are more than conquerors in Christ Jesus.

And then there are the other times…the not so pretty times…when autism collides with life and I fall face down in exhaustion, in weakness, breathing out one-word prayers that lift above me like a feather in the wind.

“Help.” “Father.” “Help.”

And God hears.

God sees.

But…Max. What would he say about autism?

“Max,” I said, placing my fork down on my plate and gently turning toward him. “Can you tell me something about autism?” The question lumped in my throat.

Max took another bite of food, as if he hadn’t heard me. I silently reprimanded myself for such an open-ended question. Max struggles with conversation, and especially with questions as big as this one.

I turned back to my dinner and pushed my food around knowing I could let that question float away unanswered. Maybe I didn’t really want to know the truth. What if he told me it was painful, or that he feels frustrated by the challenges, or even that he is simply tired of it all? Because I’m sure, at times, that is true. But God loves me enough to hear my words of pain and struggle when I turn to him. So Max deserves the same, for me to love him enough to hear his truth as well.

I leaned toward him and slid my hand along the table to gently, bravely, ask for his attention. Max is so handsome, almost 25 years old now, and a Christian; he belongs to God. He has touched more lives with is sweet spirit, and his uncontainable enthusiasm, than most anyone I know. I smiled as I caught a glimpse of his missing sideburn, the result of his overly efficient shaving experience the night before.

“Max,” I breathed, “Can you tell me two things you want someone to know about autism?”

He looked down and, without hesitation, spoke two simple words that left me speechless…

“Love. Peace.”

By Emily Colson

Photo credit: Kacey O’Gara

Darkness in a Theater

Update: Emily wrote this post in January of 2014 and has a follow-up piece she wrote in April of 2014. You’ll want to be sure to read “Love to the Max” to see how Emily’s church and community reached out to Max!

We came to see a movie. But I never imagined that we would become the entertainment.

Patty and I found our pre-assigned seats and sunk into the plush leather, with Max sandwiched between us. Despite the exorbitant ticket price, this posh new cinema was completely full. I studied those around us searching for a smile, which is the gold star sticker of acceptance. But no one seemed to notice Max. As we sat waiting for the film I marveled that we could be part of this audience, sitting like everyone else enjoying Christmas with their families. We became something bigger than just us; we were a school of fish moving together in unity, gliding through the deep blue. Max’s eyes darted around the room, his pupils like black pools as the lights dimmed.

“Don’t worry if Max gets anxious in the beginning of the movie,” I whispered to my step-mom Patty. “He needs a few minutes to adjust, and then he loves it.” I felt a little rush of pride come over me, with a desperate hope that it would actually work. Sitting at the movies is one of our hard-earned victories. But after 23 years, I know that life with autism is predictably unpredictable. I clutched my bag under my arm, with Max’s teddy bear peeking out of the top just like the Hollywood starlets carry their Chihuahuas.

The first preview started with eardrum-breaking volume. “I want to go home!” Max shrieked as he folded over his ears. I leaned in quickly, knowing the drill. “It’s ok Max. Our movie will start in a minute. This will stop.” Just as Max was about to completely unravel, our great green friend appeared like an angel on the screen, but with the potential for warts. It was Kermit, as big as a house. Max’s face relaxed, “The Muppet movie!” Max cried out in a jubilant voice that carried unfortunately well with the fine acoustics of the theater. “And Fozzy Bear!” Max laughed nearly slapping his knee. It was apparent that, despite their best efforts, these felt puppets were not bringing joy to the rest of the audience. I leaned into Max and pointed to our movie theater rules. “Whisper voice,” I reminded him.

Finally our feature started, and once again the change startled Max. “I want to go home!” His voice cracked across the silent theater.

But he was quickly drowned out.

“Are you going to make him be quiet?” The older woman next to Patty exploded with aggravation.

Patty leaned toward her and explained, “He is autistic and…”

“I know he is,” the woman shot back as she lunged forward and pounded on her chest. “But why should the rest of us have to suffer.”

“If you don’t make him be quiet,” her husband shouted, “I’m calling the manager!”

I desperately needed an oxygen mask to drop from the ceiling. I couldn’t breath. There in 3D surround sound, my own horror movie began to play.

I threw my hand up toward them in a stop motion. It works for policemen. And I desperately, achingly, wanted it to stop. “Ok. Ok,” I said. “Just give us a minute.” It takes both great finesse and a forklift for Max to leave quickly. My heart leapt into my throat as if it were trying to make an escape before the rest of us. At another time I might have defended our right to be there, but I could hear a strange rumbling of underground thunder. After a minute of dust-flinging commotion, Max stood up beside me, with Patty soon to follow.

And the thunder grew louder.

It was applause for our exit. It was the sound of an angry mob chasing us away with their jeers and taunts.

“And don’t come back,” I heard as we slowly made our way down the stairs in the dark.

I tried to block Max from the view of the crowd, my every step labored, detached, brittle. I wanted to throw my arms around Max to remind him, and everyone else, of just how deeply he is loved. But I couldn’t make my arms work. As we neared the exit, passing center stage, I heard a voice from the back of the theater. It was a man shouting over the thunder of the crowd like a crack of lightening.

“He’s retarded.”

I lost all bearings. I even lost track of watching Max. I stopped and turned toward the sea of faces lit up by the screen behind me. They were colorless, floating, with their little fish eyes watching our every move. The movie must have been showing on top of my silhouette. I don’t know if they could see my hand clutching my heart, my chest heaving for a breath. I tried to squeak something out, but a Boa constrictor had wrapped itself around my throat. I had to find some kind of answer to such cruelty, some memorable response to wash this away.

“There is a lesson here,” I began as I forced my tiny voice forward fearing the movie sound track would suddenly drown me out. “A lesson that is so much more important than anything you will learn from this movie.”

I turned back toward the exit, my arms and legs stiff like metal rods. But just as we were about to walk out, the voice from the back of the room struck again.

“Merry Christmas!” he called to us sarcastically. It was a kick in the back on our way out the door, a final deathblow meant for purely perverse entertainment.

I looked back up at the crowd once more. The little girl in me wanted to storm up those stairs and throw over the monopoly board. Fortunately the grown-up part of me was numb. Plus, I knew I was outnumbered. Just minutes ago, I was a card-carrying member of this audience. And sadly, despite everything that would speak to the contrary, despite my desperate desire for it to be untrue, I knew I still was. I shuddered at the truth of it, at the vile potential of every human heart. Including my own. And then came the strangest sense of clarity, the tiniest bit of perfect peace.

Christmas.

It was a nudge of truth from the Holy Spirit. Even as I share this story with you days later, I feel it. Christmas…when God sent his only Son into the angry lynch mob of the world that groans with self-serving demands and cruelty and hate, to bring us light in our darkness. To bring us healing for our utterly disabled souls. To save us from ourselves – something we cannot do. I couldn’t wait to get my son out of there. But Christmas…Christmas is when God, in his lavish love for us, chose to send His only Son right into this carnage. Christmas is God’s answer to the evil in every human heart.

We stood just a step from the theater exit, my chance for the last word. With my hand still clutching my chest, I scraped up every shred of kindness I could pull together in my fragile splintered self, and breathed words of hope back to the audience, and to myself.

“Merry Christmas,” I whispered.

And the words spilled around us like a little pool of light.

“In Him was life, and that life was the light of all mankind.

The light shines in the darkness,

and the darkness has not overcome it.”

John 1:4-5

Written by Emily Colson