Sensitive Boy, My Gift

What does it feel like to be inside of your body, my little 9-year-old man? Have these last three thousand and sum days of your life smothered your brightness already, making you older than you ought to be? Another morning is here where I try to help you rise, but you are heavy as a great cracked turtle, head aching, pulling inward and away from the pancakes and plans for the day where your sister dances with joy.

This morning I can see the chaos and confusion under your soft brow, scrunched up and tight. Offended by people moving this way and that, too fast, out of sync, making demands. Bright light everywhere, invading, complicated sounds, places to be. Fingers pointing. Hook faced frowns. Hurry up. Wait. Stop. Say your sorry. Get yourself together now. Get dressed. You feel it all, your little body overflows. Kaleidoscopes of sounds are screaming in your head, while most of us hear nothing but our own dull voices. Birds singing, brother and sister chattering downstairs, Daddy booming words, dogs barking in the echoing field, cars rumbling by, my distant voice. So often you live in the unseen and unheard, but are misunderstood as stealing the present. Sometimes they say your are distracting, annoying, inconvenient.

The cold air and open space outside of your nest of down are your enemies this morning.  But you are pulled up and out anyway, up to a life that blinds you, to face another day. You stumble across the icy surface of the floor, feet stinging from the touch of a hardness not made for your gentle body. Stiff bristles of the toothbrush invade your mouth. You turn away. No more Mama. I don't want to GO.  The icy tile surface under your heels sends steel through your veins. You stiffen. Squeal. Jump around waiting for someone to say, “Calm down!” so you can go back and hide.

I feel your body, doubling over, sagging to get back to safety. Under warmth and darkness you creep. But there is another pull. Someone (is that me?) is begging you to get dressed now, eat, gather backpack, coat, get outside, go to a place where hundreds of children cross paths, balls bounce, papers shuffle, faces make little sense, words hurt. I am here with you now, and I feel it all-- I understand.

My sensitive boy, come inside my arms for this moment to a calmer place. You are good as you are. My embrace will shield you from the thunder. Names will bounce from my hardened chest-- ADHD, Sensory Processing Disorder, Aspergers, Challenging Child, Distraction, Anxious, Annoying. They are flying like birds into the morning sky, raining back down to feed us with forgiveness. Your light is reflecting a rainbow of a gorgeous child, in everything around you. You are my Gift, My Treat, My Lesson of Life, My Love. I feel the world so much more truly, Little Boy, because of you. 

Daddies Who Climb Mountains

The damned ding ding dingaling on my phone is waking me again. Shit, not another crisis beaming here like Count Tinkerbell all the way from the office, chomping down her frigging gold-knifed teeth through the ceiling to devour my morning. I grasp the phone and press its glow to my face. Panic over. That noise was just that God damn phone alarm. She orders me around, telling me to get my aching ass out of bed, beating my stiff swollen knees with her reminders and calendar events.  I keep setting her annoying beeping voice earlier. Early enough to get on my superpower bike with a screen that tricks my 45-year-old achy bod into believing it’s in the French Countryside spinning free. Maybe I’ll stop at a vineyard before breakfast. Get in a glass of vino before all hell breaks loose.

I ought to be a bear. They get to sleep all winter, don’t they? Or a frog.  My kids would like that better. They could carry me around and pat my lumpy slimy back, and they’d still think I’m cute. But I’m just a grown-up, bald 45-year-old boy called Husband, Daddy, Director. Sounds important, but it’s never enough.

At work, I’ve got a cascade of jobs the size of Everest to climb, and its blinding edges block my way with silvery jagged problems. Feels like I’m always reaching for the next crevice to clutch. I’m panting, and my sweaty Brooks Brothers shirt is flapping in the wind as my shiny black Farragamo leather shoes slip. And then, the laces get caught on the details and I look down. Careful, those distractions below can cause you vertigo…the egos, red tape, senseless errors, antiquated systems… if you stare at them too long, you forget where you’re going, and the mountain just gets higher. Sometimes I dangle there from my bitten, bleeding nails wondering if someone could just hand me a promotion, a beer, and retirement package all on the same day. I’ll open an organic dairy farm and sell milk. Or maybe become a college professor who spends all day talking about ideas over his reading glasses, in an old colonial schoolroom while sipping a hot latte.

Can’t be with the kids enough. They say, “Daddy where ARE you? Daddy you missed my parade, missed my story last night, missed cuddles.”  They have no idea how much I miss THEM. Knowing everything about them. But I've been out climbing mountains that nobody sees. I've got no pictures to show or breathtaking stories to tell, no harrowing adventures to brag about. My dream of home cooked, nightly meals by a crackling red brick hearth, listening to stories from the kids’ days as my wife rubs my shoulders…Hah. Young fellas, don’t even bother with that figment. I’m lucky if I get home for dinner twice a week, after it’s already been served. And if I do get there, my kids are so strung out and surprised to see me that they act like fang-toothed nymphs that you see in old story books. You know, banging the table with their forks, shrieking over each other, demanding to sit by me or refusing to look at me. Their emotions have run amuck. I can’t hear my thoughts, much less make a sound to share them. Sometimes I yell just to be heard, and then I realize that they hear so little from me… Let it not be my angry loud bellow their little heads hear when they think, “Daddy.”   

After they have pounded my wife and me to pieces with their zesty energy, for a short time, I get to feel what has been missing. Feel what keeps me climbing upward. They wrestle with me, lead me by the hand to their quiet bedrooms where they sound out stories from their favorite books or listen to mine. I lay back and work to keep my tired eyeballs open and focused, sinking into their joy, their magic, their being in the world. We are finally in a place free of all the beeps, buzzes, calls, trades, lists, charts, dollars, demands. They chatter on about a world of other things-- friends, disappointments, dreams, mistakes. They have no sense of time. Finally I am home. Home for my family. Home for love. 

--------------------------------------------------

I’ve been writing fiction lately, sharing new perspectives on some of the challenges I observe facing so many families, including mine. I hope this narrative does at least a bit of justice to the struggle fathers experience as they are pulled, like moms, in far too many directions.  The love of my life has taught me that being a wonderful dad is possible, but it is painful, and it is hard work.

I Was Born Sick

I was born sick. My mom didn't know just how sick. I heard her voice for all those months talking talking talking, thinking she could control me before I entered the other side where people suck in air. Sometimes she would sing to me, trying to practice her lullabies, not knowing that she could make up any sounds and I would feel her intentions, her longing to fill me with something good, not sick like I feel.

I grow, and she does too. She sighs at pictures of me in sterile hospital offices as the gooey pushy stick rubs and squishes my warm home. I wish they would stop that. She needs to feel hope, to know who I am. She thinks I'm OK because everyone tells her so, but I'm sick. She sings again on the way home, something about "hushabye, don't you cry," and I wonder if she knows how much crying is coming.

A rounded lump of warm flesh pushes my elbow. I feel a jolt. She wants something from me. To believe I'm beautiful and whole like the pictures of all the others who have come before me. To know that the signs of trouble she saw four months ago were insignificant. To believe that I'll eat, sleep, smile, breath, crawl, walk on time. To know that my miniscule heart won't require the silicone covered hand of a giant to hold it and change its entire design while the rest of me lies in the frigid silver room, just above the cold temperature of death.

When I arrive, will she pour out loving, nourishing motherhood that supports the beautiful, ugly, smelly, soft, pain, and pleasure of who I am? When my screams penetrate her head, and I can't stop them, will she cover the sound with her own needs, running back to her dream, or will she embrace my heart with her warmth, make me know I'm not alone. Sickness hurts.  When I grow and show her the truth about me, that my design is not like her dream, will she still have that touch, that voice that rains enough love to make me want to swim in this womb forever?

She wants to see beauty everywhere, even in the broken places where most of us are afraid to ever look. Soon she will see me. She'll find out that I'm sick. I'll break her heart, and then she will heal along side of me. We will be together in this journey-- she will never look away.

This entry a fictional perspective from a child, like my child, who was born with a congenital heart defect and then went on to discover, as he grew, that he is "different" in many more ways... He blesses me every day with lessons about honoring and loving the individual. I am so thankful for him.

"You Do Not Have To Be Good"

"Mama, can I ask you something?”

“Yes… what?” I answered my oldest son. His question begged for a spot in my mind that was unraveling the complex schedule of the day as I drove down the winding country road to school, late again.

 “Why did that orchid have to break on my birthday? Why did it have to happen and make me feel so sad…on my birthday?” repeated my now nine-year-old boy.

The question felt like a valuable nugget, just tossed to me, about how my child perceives life. Little things that break, like orchids—they matter a lot. ‘And how is it that he cares so much?’ I wondered.

On his birthday, he cried quietly, but hard, sinking down into a little ball in his room because a tiny piece of his orchid broke off. He said it was his fault. He said he had been careless.

If he feels this bad, all on his own, over the fracture of an orchid stem, then imagine how he feels when an adult tells him that he IS careless. ‘Must remember this, and must remember to share this with husband,’ I thought.

So often it seems like it doesn’t bother him one bit that he leaves messes everywhere he goes.  Breaks, loses, or forgets things. Spills food in the car, crushes books, homework, video cases under his feet. Leaves paths of chaos and dirt in every room he travels across. We remind him to be more careful over and over and over again. The messes keep coming. It dawns on me that he really is trying hard and that he knows he is careless. He doesn’t want to be that way.

After all, he was crying over an orchid breaking.

“I don’t know why the orchid had to break.” I answered.

“But Mama, God is in charge of everything, right? So then he wanted it to break?” He stretched his voice for a truth, an answer.

“I don’t know for sure if God wanted it to break, but I know everything good comes from God.” I replied, thinking it through myself…” maybe he wants you to learn something,” I wondered out loud.

“He wants me to learn that things I love die? It is awful that things have to hurt and then die,” he sighs.

We are traveling over a bridge now and I see a golden glow over the water on the pond with two elegant swans cuddling in their wings. Life appears to be overflowing at this moment.

“Maybe God wants you to think about life, just the way you are doing. He wants you to care…” I pause.

I recall the first line of a Mary Oliver poem called Dream Work that I am writing about for my class…
”You do not have to be good,” I say out loud. I feel relief.

Then I finished the idea for him and for me, and maybe Mary would agree with me…

“You (and that orchid and every living thing) have all that you need inside of you. You have God. Even when you break, you have Him. You do not have to be good...God is good for you.”

I pulled in to the school parking lot and turned around to catch his smile, to love him even more than ever, as he ran off, backpack crooked, hair rumpled, ready for another day of life.

May Our Stories Bear Fruit

Copyright Amy Aves Challenger 2012

Silence. I have left my three kids at school, and for the first time (I'm actually on day 10) in almost nine years they are without me for seven hours a day. Air…it strikes me as a great gift that I have been missing, as it eases into my chest. I slow down my pace enough to smile and chat with another mom. I’ve got nowhere important to be, and no one hollering for my attention. No one is asking for help, for a hug or showing me a new kind of acorn. I feel an eerie draft from imaginary doors swinging closed behind me, as though an extremely long chapter of my story just ended.  Am I mourning or celebrating?  And this next chapter is the beginning of—what?

If I peek back through that door slowly swinging shut, I heavily admit to myself that I cannot go back a chapter. But I can still catch a picture of the miracles... babies held up high in delivery rooms while I wept, and later their warm little bodies folded across mine as I slept. I can make out images of the doctors consulted, the special diets prepared, the hours of therapy, the millions of techniques tried, the miles of tears, the stacks of parenting books, the diapers changed, the sleepless nights, the tantrums soothed, the loneliness endured, the teacher meetings, the accomplishments celebrated, the amazing people who helped plow the path to where my family is today. I see the guilt accepted, the mistakes admitted, I see the hearts embraced, and the love that grew to enormous watermelon-sized fruit… huge love, delicious, but often pressing me down flat beneath it. With every tear and kiss and kind word the fruit grew. Oh, how bountiful this life, this earth.

So now back to what?

If I’m in an optimistic mood, I think God is opening the doors for me-- again. In this chapter, I might get to take all the dirty, painful, beautiful stuff of parenthood (so far) and put it to work. I might get to write a book, create new products, paint, illustrate— serve the homeless…but who knows? One thing I’ve learned from parenthood is that I do not get to write the next chapter! If I lean in, God gently nudges me to where I need to go. If I turn away, then God just picks me up and tosses me there. My family and I end up where we're supposed to be, anyway, despite our strong wills.

I know three parents who have passed on in the past two months from cancer. They all left behind fairly young children… When did they realize that their chapter in this world was coming to a close? What was their final chapter like? During their last moments here, did they get a glimpse of their whole story from beginning to end? Did it all make sense and could they taste the fruit of their stories? I keep thinking of them. And probably because of them, I am stretching a little farther to hear God, squinting a bit harder to see Him, asking him more often, more firmly than ever…What now, God?

Today I’m praying for the open heart and quiet mind to allow the uncertain chapters of my days to be shaped and transformed by the will of my creator, to bear fruit sweet enough to share with millions, and strong enough to endure all the challenges that I know still lie ahead.

The Joy Found in "Combat"

Today I am sitting in a bunker, piling up the bags, putting on my protective gear. My oldest son’s class was cancelled, the other kids are home (we were planning on having a relaxed summer “normal” day) and he is in a very, very bad and sensitive mood. Screeching, angry words, pushing, more angry words, demands, yelling. And so I prepare:  Strenuous sensory activities planned? Check.  Soft music playing? Check. Low expectations? Check.  Video games (educational non-adversarial ones so I can sit down to write this and get my head together)? Check. Warned other kids of the possibility of warfare? Check. Thrown away all plans for the day? Check. Prepared to feel like a failure? Check.

Combat. Recently another mom of a special needs child shared something she read (http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/) about research demonstrating how moms of children with autism have similar stress levels and health effects of stress to those who are fighting in combat. It was weird—her words felt like they were embracing me with a big hug. “So this is the way I’m supposed to feel!” I thought with relief, as I tried to recall the fog, the persistent heightened anxiety that I felt often made me look like I was on speed…the lack of sleep, weight loss, the fear—the sadness. Thank God it is supposed to be this way!

But the part of combat that the research didn’t mention or measure is the deep, God strong joy that roots itself in those who are struggling. It comes from suffering, pain, exclusion, and yes, even from fighting. This joy blossoms only after the pain. Because when you are in “combat”, you seek winning moments to sustain you, you see the substance and the growth-- you recognize the new life in every single day or moment your child and family have where things go right.

To clarify, my oldest son has not been diagnosed with autism, although specialists who treat him think that he has many autistic characteristics (along with many other labels that are scary and not worth writing here)…he is still somewhat of a challenging case to diagnose.  Sometimes, almost shamefully, I wish for the diagnosis that would help him and me find more commonality with other families. He has the mood swings, the obsessive nature, the tantrums, the high intelligence, the hyper-sensitivity, the unpredictability, and most difficult of all- the unsafe behavior. Each day I wake up with very little idea of how the day will go. So little control. So much of my family’s peace and stability hinges on his state of mind.

Though I’m prepared for combat today, I am also aiming and praying for a clear vision-- a glimpse of new life. Tiny growth is enough to sustain me (I just concluded). Maybe one of my kids will help the other learn something new. Perhaps I’ll have a conversation with one of my children that will touch them enough so they will remember it after I’m long gone. Possibly I’ll spend enough time honestly listening to my son’s obsessive talk about reptiles that I will ease some of his anxiety and he will feel a little better.

At the end of the day, no matter how “combat-like” it was, I’ll find that God joy that is rooted so deeply and strongly in love that it will never bend, never be buried, never break…I’ll let you know what it looks like when I find it (because the beauty and magic of this kind of joy is-- it looks different every day!)

Living Like I Am Dying

Moments ago, the life we lived in Marin County changed into an elegant pattern on the horizon, eventually a dreamy spec, disappearing into a silent, white mist filled with light. Marin is a rich memory now, living in my soul. A memory that has transformed me, like the horizon, and filled me with light.

These past weeks as I packed our lives away to move our family to Fairfield County, Connecticut, the layers of loss have been whispering to me-- loss of a quiet, light-filled home surrounded by open space, of curvy, mountainous backdrops, a perfect climate, laid-back clothing, healthy fresh food, a lush vegetable garden, bobcats, hawks and quail, slow-moving cars, dramatic beaches, and endless trails for me to run, bike and hike on.

But thank you God for showing me that saying goodbye to the people I love is deeper, richer, and much much more painful than the loss of the rest of it. Those Marin people have forever transformed me. 

In the past few weeks, I felt surprisingly free. I started living more passionately, less guarded. Leaving felt a little like part of me was dying, and so I craved one last chance to hike with a friend, hug the person I had been too afraid to hug, have that big party I never made time to organize, and lunch with the moms whom I admired. I needed to tell the truth-- Tell people why I loved them. And what a miraculous experience this telling became! I lightened. And the deep pain of leaving had a surprising joy in it. I could see how blessed I have been, and how much goodness, how much God there is in people. 

There is God in the nanny who lovingly helped me bathe my children, brainstormed with me weekly about their challenges, patiently followed my insane schedule, courageously endured the echoing noise, the fights, messes, moods, tantrums, my forgetfulness; and still she responded with kindness every single time I needed her. 

There is God in the homeschool teacher who came to my house for three years to teach my boy just exactly the way that worked for him. The woman who created lessons to meet his needs, stepped over cats and dogs to get to her "classroom," who cut apples, endured bugs and reptiles, hugged me and reassured me on the days when his challenges were eroding me.

There is God in the friends, particularly in my diverse faith group, who shared their doubts and fears, who trusted me enough to ask for help, who offered me theirs, who encouraged me to grow, who accepted me despite all of my inadequacies.

There is God in many more teachers who loved my children, supported me, drove across bridges, went beyond the extra mile. God in the naturalist who nurtured an awesome love and understanding of nature in my children. God in the grocery store check-out clerk who aways grinned though her hands shook from disease, in our therapists, and in the moms at the soup kitchen who graciously shared their lives, teaching me about suffering.

I pray that the Marin in my soul helps me to continue to aim to live as though I am dying-- that every day I can see and share how God flows through the special people He places in my life. And I pray for a free heart for you and me, a heart that sees the God in people, glorifies all that is good, shining the light for all to see.