Life Without Mountains



Spencer & Logan Mighty Explorers: Colter Bay Summer 2013

When I was a little girl I used to climb to the top of our tan couch and stand like a mountain goat on the sagging cushions while I pressed my face against the cool glass of the living room window. From the safety of my perch, I would stare wide eyed at the snow capped mountains surrounding me from every direction; a fortress of safety circled like wagons. I can still close my eyes and see those ethereal peaks; stark against the fluttering dark of my eyelids, still experience the wash of warmth I encounter every time I remember the tangible comfort I experienced living in their shadows.

The summer before my senior year in high school, I had grown decidedly restless. My older brother was in college; many of my friends had already graduated and were moving on with their lives. I felt stagnant. I felt trapped. I wanted movement. I wanted to drive without stopping, (I wanted land lots of land under starry skies above….stop freaking fencing me in!!!!!) I wanted to feel the brush of tumbleweeds scrape against my legs. The mountains to me became symbols of my incarceration, stumbling blocks in the path of escape.  I think I even wrote some -obviously pathetic - poetry about being a bird with clipped wings, longing to rise up on a beautiful (certainly cologne scented –duh I was 17- ) current and be carried away to where finally I could see beyond (dramatic pause) my gilded cage. (No, I couldn’t be considered a true poet because I didn’t wear black mock turtlenecks, or style my hair in stringy, dyed black dread locks or keep my lips lined in a thick layer of black cherry lipstick….isn’t that a requirement?).

I turned 18. I moved away. I got married. I had kids and suddenly I found myself in the desert without a brown sagging couch to climb, or mountains to write bad poetry over. The great sea of sand and rocks did not provide balm for my soul the way I supposed space would. I spent my days cowering from the exposure, slathering my boys with sun block, hating the emptiness of heat. I would watch the sun rise from the dirt, and return to the dirt (I’m sure a pathetic poem rising up in my soul, that if I could have located a crayon that wasn’t broken or melted, I would have titled, “My life in a Tomb.” And probably the first line would have read, “The heat has turned my dreams into cremated ashes…”) 

Grand Teton National Park June 2013

And so, some eight years ago, when we were able to return to pine trees, seasons, and the carved out (by God Himself?) mountain valley of Jackson Hole, Wyoming, I felt at once swaddled, contained and safe. The boundaries I had once resented eased my mind.  The world didn’t feel so imposing. Life felt like it had been sectioned like an orange and fallen open into perfectly encased bite size pieces, something I could swallow without choking.

Boundaries play an important role in my life; but I confess I frequently forget this hard earned knowledge because of the short term memory loss I’ve suffered  from all the times I’ve hit my head against my limits, willing my boundaries to budge by sheer force.  My boys, on the other hand, are often wiser than me, and while they are sometimes as rigid and unyielding as granite in their desire for routine, predictability, hard lines, rules and order, boundaries have kept their lives consistently cut up into bit size chunks.   (The dramatic poem I would write today would probably be called, “Hard Lines; Life in a Gilded Cage” but if I wrote it, then I might really give in to my desire to wear black turtle necks and embrace the poet lifestyle and I don’t know anyone who braids dreadlocks so that doesn’t really work for me.)

Jenny Lake, Grand Teton National Park June 2013

My boys know they have to take one step at a time, they don’t try to skip ahead; C follows B which follows A, which is the beginning of the alphabet. Duh! Was there ever a question as to the order of things?  Whereas my impulse is to skip from b to q to x and back to c because there was traffic at A.  Because of years of intensive therapy and coaching, my boys have learned to come to me when they are feeling overwhelmed and say things like, “I’m feeling a little overwhelmed, and I think I need a break.” Or Logan will say, “Stop rushing me like a race horse you devil woman!  And will you please communicate what your plans are before you drag me out the door?” They often know their limits. They want to finish one section of the orange before they move on to the next piece, and perhaps if they are satisfied they may be content to NOT move on to the next piece. Meanwhile, I am the one who is thinking, “Oranges again??!  -As I shove piece after piece into my mouth-.

For Alex especially, having order in the universe is the ONLY way he can function; the sun always sets at night, the moon rises predictably like clockwork. It waxes, it wanes. The stars appear and fill the night sky with pin pricks of light.  There is order to the universe; in his preferred world he has breakfast within a half hour of waking, (takes a break) walks the dog (takes a break) asks to go somewhere (sighs when I say no, asks how long until we can go somewhere) goes somewhere (says he’s done and wants to go home within 45 minutes of going somewhere) drives home, lunch, (takes a break) walks the dog (takes a break) waits for dad to come home. Calls dad and ask why he isn’t there yet. Sits by the window and waits. Flops with dad, makes dinner (takes a break) asks to go somewhere (asks to come home) gets tired, melts down, fights with his brothers, argues with his mom and dad, refuses to brush his teeth because we didn’t remind him early enough and besides he isn’t going to go to the dentist anyways anymore because dentists are liars… takes his melatonin, climbs in bed with an IPad to unwind, watches a documentary on Hawaii, lights out, fan on, wrapped like a mummy, four pillows, two underneath his head, two on top. Sleeps. And. Repeat. Deviation from the charted course like staying fifty minutes when we “go somewhere” instead of the pre-arranged 45, is cause for mayhem, renting of clothing, stopping of clocks.

Leeks Marina: Spencer & Logan Walking Off Some Pizza, June 2013

Order in the universe equals a happy boy. But sadly, the laws of motion don’t always work out the way Newton intended. The moon rises, the stars come out, and sometimes a storm wakes you up. The sun rises and sometimes the dog’s leash breaks. Winter comes, but it doesn’t always snow. Sometimes there is homework, sometimes there is not. Dinner may not be what you expected. Clothes may be scratchy. Brothers get loud. Fire alarms go off. Mom’s say no. Dad’s come home late. But as long as those main parts of the routine stay consistent, there is a place to go for order (his room, the family room, his house) but when he leaves his Island and order in the universe is displaced by chaos in the universe, then the resulting fall out is as predictable as the sun setting in the west.

The ramifications of living with autism…oh, who am I kidding? The ramification of living with life –especially a life where I jump from letter to letter, choking on orange slices with one child chasing me across the alphabet yelling they need a break while another child is lost somewhere by the letter S and I’ve already tripped twice over the child catatonic next to the letter B, has left me feeling like a wide eyed deer standing- ears perked - in a meadow; (Bambi be careful! Man is in the forest…. And then that creepy violin music starts and all that’s left to do is wait for the crack of the gun to go off).  Meadows -my life without boundaries- (as much as I seem to crave it) never seems to work for me. I get so distracted by the seemingly open, soothing, non-uphill grassy nature that I miss the sniper hiding in the brush.  Mountains and their unyielding foundation, creates order in my universe. I’ve learned I need to know my starting and stopping points; my limits. I need something to bump up against and  I need to be smart enough to know when I reach my wall of rock; to stop (especially because I’m still paying off those cat scan bills for my past head banging against the wall incidents). I’ve learned mountains are not always beautiful… some mountains are scorched like the tortured scarred hills of Arizona in July, some mountains carry heart ache; their knocked down charred trees spilled like matches in the crevices of the rocky terrain. And some mountains are still covered in ice when they were supposed to be covered in wildflowers, but they create valleys to tuck me into, mapped roads, pharmacies, and fenced yards.

My Favorite Drive; Even A Picture From My Phone Is Sighable; June 2013

My boys and the way they courageously navigate their lives has taught me so many important lessons, and the one I’m working on implementing now is finding my north, creating order in my universe, implementing boundaries that help me to function at a higher –non concussion- level. I am also working on remembering that wherever life takes me –even to the mountain less terrain of Texas, that I don’t need to deprive myself of swaddling, I don’t have to be exposed like an infant who has perfected the startle reflex.  I can draw my line in the sand wherever I am, I can carve it on the rocks or write it in the snow.  I can be unyielding when it comes to my sanity. My boys have taught me the importance of knowing your limits, of setting perimeters.   And so, I am closing my eyes more often, closing them so I can see those ghost like peaks rise up again sentinels against the dark of my fluttering lids. I’m closing my eyes so when I open them I remember all I have to deal with today is a valley and that I can worry about the conditions of the road leading over the mountains tomorrow.

And the best part of metaphorical mountains is they only give metaphorical concussions and metaphorical medical bills, which I can metaphorically shred without an ounce of metaphorical guilt. (And the dramatic poem rising up in my soul to commemorate this lesson learned will be written just as soon as I can pick up a black turtle neck from the GAP and some hair dye from Target).



Loggy Bear @ Colter Bay June 2013, Love that cub!

 

Silly Putty & Equal Packets

Lewis Lake; Alex, Russ, Spencer (notice the white backs of his shoes...on the actual photo
I colored them with a black sharpie, you can't even see it) and Logan. October 2011

 

 

There are certain unarguable facts in life; like for example if someone (Russ) puts silly putty in your (my) hair, you will need to get a haircut (pixie style from someone named Denisha) and it actually won’t be romantic (“I just wanted to make an impression of your hair to remember you by”) at all. And PS Russ: The makers of silly putty never considered that along with the “do not ingest” warning, they should also put, “Do not make impressions of your wife’s hair, no matter how romantic you think it might be.” Another unarguable fact is that if you make a promise to an autistic child, you better keep your promise or suffer (and suffer and suffer and suffer) the consequences. I am not a fan of suffering; I learned my lesson during the tedious hair removal process in what has now been classified as, “The Putty Crisis of 1997.”

So since I avoid suffering like I avoid tofu, we naturally ended up going to Yellowstone during the last twenty four hours the park was opened during the fall of 2011. Our forced death-march “vacation” was taken entirely out of obligation to Alex; whom we’d promised we’d take (as per our tradition) during the summer (October in Wyoming may be stretching the definition of summer).  Sheer duty rather than any innate desire we had to spend 14 hours in the car with our three fascinating, brilliant and psychotic children dictated our course; in no time at all we were stuck behind five billion retired couples who were “savoring the moment” driving at a snail’s pace on a winding canyon road, while Logan cried from the back seat, “I need one of those barf bags like they have on the airplanes as soon as it’s humanly possible to locate one, otherwise I will settle for unzipping Spencer’s backpack and relieving the contents of my stomach in there!”  

Lewis Lake at Sunset, 2011
 

Now, as a disclaimer, we loved living in Jackson Hole. We loved the mountains and wildlife, we felt blessed to live in a place that utterly fed our souls. We knew that people from all over the world traveled great lengths to visit Yellowstone, but we had been up until 2 am the night before retrieving Russ from the airport (he had flown in from Texas; where he’d been teaching all summer) and were thoroughly thrashed. Bright and wretchedly early the next morning, we’d set out for our mandatory trip.  I confess, from behind the dog slobbered windows of our mini-van, the beauty was lost on me. I was exhausted, the boys were fighting, Spencer kept telling us he didn’t want to visit stupid Yellowstone, and doesn’t anybody care about what he wants to do? Logan was too engrossed in a DVD to notice the elk by the side of the road and I was too busy being happy that he’d stop fighting with everyone to make him turn off the DVD and look at the elk on the side of the road.  I was impatient with the other travelers who were leisurely driving about soaking up the scenery. Hello!!! Didn’t they know we still had Fishing Bridge and Yellowstone Lake to cross off before we could go home???

The restaurants in the park had closed early so we had to scrounge for something to eat at the gas station. We fought off the other tourists for our dinner of ice-cream sandwiches, a bag of cheetos and some packets of ketchup and Equal. Finally depleted, we finished the Grand Loop and were making our way home, when somehow, something shifted. The tired sun had finally surrendered to the night. Our boys were sitting peacefully in the backseat in a ketchup packet/Equal induced coma. Outside the long, empty charred trees from the Yellowstone fire were sticking up like chopsticks among the lush new growth. Great throngs of buffalo stood grazing against a spectacular backdrop. Elk bugled all around. I breathed out. I took it all in. I reached for Russ’s hand, looked over my shoulder at my little boys who were getting so big and loved them with a fierceness so intense it surprised me. We stopped at Lewis Lake to stretch out legs, and as Russ and the boys walked towards the shore, I raced back to the van to grab my camera so I could snap a shot of the sunset. As I shut the car door and turned around, the moment became magical, like something from a Disney movie…Russ called (in the voice of Muffassa) “Joanie! Come on! You’re missing it!”  I turned to see my boys standing at the edge of the water, stood taking in the lake, the trees, the way the sky seemed to melt into the mountains. They had grabbed hands simply because they wanted to be close to each other, I imagine they had succumb to the guttural need to remember they were not alone. They stood, unflinching; reverent, as I snapped this shot from behind them, snapped it while I absorbed the scene catatonic, completely undone by the raw beauty of the earth.

I LOVE this picture of my four boys, because every time I look at it, I feel this deep sense of satisfaction that we bucked up and made the journey, in fact I feel a little panicked when I think we could have missed this magnificent moment if we’d stayed home. This picture reminds me how life seems to sometimes be drudgery and all about racing around like mad checking things off our endless list, telling our kids to stop choking each other and finish licking their Equal...wishing we were anywhere but where we are, and then suddenly we are gifted with these moments of genuine wonder, of sighable peace, of something so beautiful it makes your throat ache.

I call this one "Peace" I can't tell if that's a rock, a piece of wood or an animal I have captured on the shore. 2011

This picture has become a symbol of hope and peace to me. I keep it in my room and taped to my fridge. It reminds me while I reach for the milk of the times I have been stuck in self imposed drudgery without enough faith to anticipate the glorious sunset, it has come to represent a pinnacle moment of knowing why I do what I do…of remembering this journey is worth taking, and despite the chaos… chaos… chaos… that is my life, that there are still moments to wait hopefully for, beautiful sparks in the dark, interspersed pin points of peace that shine like stars in the night. These breath snatching instances of shattering beauty have fundamentally changed the way I approach my life.

As mothers and fathers; as human beings, I’ve come to believe we must all have pinnacle moments of knowing why we do what we do, a center of peace (the tootsie roll middle?) anchored into our souls (I picture it like the eye of the storm…all around us flying cars and whipping branches, but closing our eyes we can breathe out and know all is well). We must find moments of solitude to cling to when the storms of life threaten to send us crashing into the depths of despair…we must keep ourselves tethered to something tangible so we don’t get lost at sea.  For me, my moment of calm is a picture on the fridge; something to stare at when someone has just thrown their bowl of lucky charms at their brother and the glass is lying in shattered fragments at my feet. I look at the picture. Close my eyes. Remember this is a journey worth taking…and that there are many more beautiful moments to come. This anchor of hope allows me to open my eyes, refocus, and while I pick up the jagged pieces of my life off the floor…tell my son, “It’s too bad you threw your breakfast at your brother…we are all out of Lucky Charms, but if you're still hungry, there are some left over packets of ketchup and Equal in the cupboard...so eat up!”      

When I was a kid and the lake looked like this my dad would always say, "The water was like glass." October 2011

 

The Yearectomy

    

This memory made the cut! Alex, Spencer & Logan Yellowstone 2009

 

     A few weeks ago I was talking to our psychiatrist about the results of some testing we had done on Logan. She'd enthusiastically explained he had shown consistent improvement, "He is," she said beaming, "the poster child for how we want autistic children to assimilate, adapt and progress. He accesses the tools he needs to function happily, fully and beautifully." (And yes, I thought it was ridiculous that finally my child was called THE perfect poster child -but did I get a bumper sticker?!! NO!) "He's continued to make steady progress since the last time we tested him two years ago." Her complete, unabashed love for Logan made me smile affectionately too because I utterly ADORE that Loggy Bear; he feeds my soul with his wacky humor and sweet unfettered affection. But still, it has been a long journey we have traveled together, with some rocky up hill - forgot the water bottle and accidentally started the climb in pajama pants without my bra on- terrain. And, it would be more doable if I was just climbing bra less on my own...but I have been dragging my boys along this path too, promising them something to quench their thirst just past the summit. But, the problem is, the summit never comes, we never even out, never tip the scale, start the downward journey, so we just keep trudging along, setting our sights on milestones five steps ahead (I will make it to that tree and then collaps) because what else is there to do, but keep moving? In thinking about  the start of this journey with Logan, (a start that certainly didn't just begin with diagnosis) I was thinking about this period of time in our lives and remembering something I wrote right after we found out he had autism. I stumbled onto it in the depths of my computer the other night.... This is a throw back, a look at one part of our stumbling, bra less-dry mouthed journey:

Hanging at home with friends! Theo & Joshua Dawson, Alex, Colter Dawson, Spencer & Logan 2008

     It's been seven years since my oldest son Alex was diagnosed with autism and one week since my youngest son Logan was. One life changing, breath snatching week. Before we left for Logan’s appointment, I was telling a friend we were going to the University of Utah autism clinic to get Logan evaluated. She'd said by means of encouragement, “Good luck.” And I'd thought, “I wish there was some measure of luck involved in this, something simple and seemingly innocuous as a roll of the dice in Las Vegas. (It could go good, it could go bad, either way it's all just for fun, so kiss the dice and let 'em fly!)  I've even wished autism was like some illness, that might be cancer of the stomach lining, but more likely was just food poisoning, and the doctor would promise that while “you might not feel good for a few days, you'll be tip top come Saturday.” On the way home I could stop for Sprite, and saltine crackers. But there is no luck with autism. No luck because it's pervasive. No luck because genetics are genetics and environmental triggers are elusive and misunderstood. No luck because once the brain is wired it's wired. And no luck in the hard work it takes to try to rewire hard wiring. During Logan's evaluation, I had joked with the psychiatrist and psychologist until they were comfortable, until they were unguarded as they talked about Logan's autism. “They already have a son with autism,” I imagine they'd thought, “they're joking about the way it affects their lives. They must be okay with this....” and so they had haphazardly discussed his autism, as if it was as innocent and as common as a cold. I had thought then, maybe it isn't Logan who needed the luck, but me. Maybe the good luck should be in reference to, “Good luck not bursting into tears! Good luck not doubling over and barfing all over the sterile tile floor. Good luck not feeling like your heart is being rendered useless because someone has pulled it from your chest cavity still beating as it struggles to stay attached to the tiny, intricate vessels while being twisted and squeezed like a sponge used for cleaning.”

Loggy bear hanging onto saftey (that's a long ways down!!) Yellowstone Falls,  2009

            On the way out of the building we'd stopped by the vending machines to get Logan a kit kat bar. Russ and I mused how he'd used to call the candy bar a “mere cat” “I want a mere cat” he would cry and I would say, “Logan, we already have a dog, besides, mere cats are wild animals” and he would burst into tears and say, “No, I want a mere cat!” It wasn't until some months later when he handed me the kit kat bar, and said, “Can I have a mere cat?” that I put two and two together. And now, even though Logan says, “Kit Kat” we still affectionately call the candy bar, “Mere Cat bars.” His differences in communication were endearing and innocent. In the car I'd called a friend and told her we were done with our appointment and she'd responded,“I'm glad it went well.” And I'd thought, “How can you possible think things went well? My son just got diagnosed with autism!”
            And so, with the heaviness of yet another diagnosis, the brick that's currently breaking this camels concave back, I've decided I would like a year-ectomy. I would like this year surgically removed from my life. I would like to forget how the other day at the park, I had watched Alex and thought his motor awkwardness made him seem like Pinocchio, stiff and wooden. I'd imagined there was something invisible, like fishing line, attached to his limbs that kept him bound to a rigid pattern of movement, like a puppet. I had surmised if this boy was Pinocchio, then I must be Gepetto, because hadn't I, in some awkward way, made this boy? Made these boys? Held them in the rawest of forms? I'd watched Alex watch the way the other children played a game. He seemed to puzzle over the way they went about their lives with such fluid gracefulness. I saw him trying to figure out how to merge, how to become a part of the team. And I'd wondered then, if in his frustration in knowing how to proceed, his little wooden heart had wanted to cry out his greatest hope, “I want to be a real boy! I want to be real.”


Ride your bike to school day/ aka try to avoid hypothermia day. Spencer, Logan and Josh Dawson 2009

 

 

            If I had a yearectomy, I could forget the pain when I'd thought that like Gepeto, I loved this child fiercely! I would search for my boy if he was lost. Search and search and search, even if only a part of him was lost. And like the story, I know I would wait for him in the belly of a whale, wait like Jonah. Wait, while I asked forgiveness for not wanting to do what God asked me to do. Ask forgiveness for thinking I knew better than Him. A yearectomy would certainly relieve my pain. Erase the memory of the massive battles we've had concerning Alex's school this year, and his subsequent forced placement in a new school Alex loathed. During this rough season, there were many times when I had wished  I had the wooden heart, an organ to sit heavy and stagnant in my chest, instead of the heart I had that beat so ferociously every time I pushed my boy on the bus while he cried, “I'm not a menace to society! I'm a good boy!”



Loosing Spencer's glasses over the falls I could forget...but these cute boys, I'd like them seared in my memory forever!

            If this year was obliterated, I would never have visited the University of Utah Autism Clinic. Never met the amazing doctors and nurses there. Missed out entirely on getting Logan diagnosed, and our family could have stayed whole a bit longer, instead of once again being fragmented by this pervasive developmental disorder that robs mother's of their children.  Oh, how I wish there was a pill to let me slip into amnesia, slip in luxuriously, like I was slipping into a hot bath. No luck in that either. The reality of our circumstances never allows me to forget, it even invades my sleep. But, truthfully, it's good to remember. Good to sometimes have the hot, sweaty anger in the pit of my stomach, and the raw grief thumping in my chest so regularly it might be mistaken for a heart beat, because the anger and the hurt is what gives me power and motivation as a parent to fight for my child. To fight for my children.
           “How do you feel about Logan getting diagnosed with autism?” My friends have asked, my family, and I've asked myself. How do I feel? Well, devastated of course. By now I know what autism is. I know how it affects our lives. I understand the work that goes into loving a child with autism, and  the effort it takes to help them succeed.  But his diagnosis isn't met with the same confusion and anxiety that Alex's was. Maybe it's like having a first child, and having a second. With the first child you don't know what to expect. You read endless books, and talk to friends and ask doctors silly questions. But, after the baptism by fire, after you've held that squirmy wet child in your arms for the first time, looked into those beautiful pools of blue that are their eyes, after you've connected, and cared for, and loved, and despaired over the first born, you have experience to serve as a baseline, and an expectation of what comes next, to serve as a memory to help you move forward with confidence. With your second child, you know what you're getting into. You've learned the highs are higher than you ever could have anticipated. You know you will love your child with a fierceness you couldn't have foreseen before becoming a parent, conversely, you understand the lows of parenting aren't something you can just brush off as you did in those early, pre-pregnancy days where you would see a child throwing a fit in a grocery store and tell yourself, “not my child!” By now you've learned sleepless nights and tantrums, will be balanced by first smiles and little arms reaching out for you. Only for you. As a parent of a second child, you appreciate it all, which gives you both a feeling of ecstasy at the impending birth, and dually, a sense of resigned anxiety.


Love that Lizard! (without glasses you can see his eyes better! Silver lining?)

           
I think that's how it is for me. I know what to expect with autism. I won't be shocked by the reality. I've learned the loving doesn't stop, if anything it intensifies. I appreciate the difficulties that originate as a complication of autism are more significant than I ever could have imaged when we'd left the autism clinic in Scottsdale Arizona, clutching the hand of our sweet little six year old Alex. This is why if you were to ask me how I felt when Logan was diagnosed, I would have said devastated, because I hate to see another child of mine robbed of normalcy. Hate to see his one neuro-typical brother in the middle take on the role of caretaker. Again. Hate to let go (and let go, and let go, and let go) of that dream of what I thought our family would be like, a dream that now seems as evasive and mysterious as dissipating smoke. With diagnosis comes mourning. And I don't want to mourn. Don't want to slip into that black, empty place of letting go. I am afraid.
            And so, I want a yearectomy. I'd like to skip over all the readjustment. All the shifting and realigning and weaving of new dreams. I'd like, rather, to just walk into my life at some future point when all is right with the world, and resume my role as mother. I'd like to just be strong enough to deal with all of this, then to have to find out if I really am.
            In retrospect, I wouldn't like a complete yearectomy. I wouldn't want to have missed out on sloppy kisses, awkward hugs, school plays, Christmas morning, or camping out with my boys, and in the cold, tree fringed night, counting as many stars as we could until our voices gave out. I wouldn't want to miss the magic of watching my beautiful children grow up. I would just like to remove the hard parts. Because honestly, I hate the conflict in the story, loath the part where you find out the character's flaws. Despise lessons learned from loss. I Hate Old Yeller. Hate Where The Red Fern Grows. And I hate that professor from college who said, “It's the conflict that makes a story interesting. What fun would a story be if Little Red Riding hood just took a basket of goodies to her grandmother and her grandmother just ate them? How would we learn anything if there wasn't the big bad wolf?”   

A keeper! Spencer and his friend Josh Dawson and dog Bear walking the path from our backyard to Flat Creek to raft 2009

 

            “I would have learned something.” I would tell the professor if I was in class with him today. “I would have learned the world isn't always made up of shadows and deep dark woods, but rather, it could be soft, full of wildflowers, and an abundance of sunshine. I would have thought how nice, simple and completely normal it was for one person to take care of another, to hover over them lovingly, just because they wanted to, not because it was something borne out of necessity. I would have learned people do go about their days without the agony of suspicion hovering over their red cloaked heads. I'd have thought how lovely it would be, to live in a world where you didn't have to wonder if hiding beneath everything you loved, was a sharp toothed monster, just waiting to snap your basket right out of your hands.”

The Question Mark Heart

The Swan Habitat. September 2010

When Alex started middle school in 6th grade; his social anxiety (among other things) caught up with him. Middle school started much earlier than elementary school, and in case you forgot, mornings are not our friend. In the still dark frigid moments before the tardy bell rang, Alex and I would lean into the heater vents of our van, wishing the warmth would reach us faster, while we made our traditional pass through the student drop off lane before I could finally pull over and try to convince him to get out of the car (again, I apologize for idling in a non idling zone. Yes, I still have guilt over your children's lungs inhaling my exhaust. And yes, I truly am sorry that Zoe flunked her science quiz because the carbon monoxide poisoned her brain.) In my life as a mom, I have done a lot of driving, but  possibly, even more waiting. The other day while driving Logan, now 11 to school, I was waiting at the light by our neighborhood exit when two geese haphazardly wandered across the four lane road. Their unexpected presence sparked a memory of all the mornings Alex and I spent at the swan habitat before school, a routine that became our sunrise ritual:

 Most mornings Alex refused to get out at school; he was at once an 11 year old toddler throwing a fit, so we’d drive away, try to merge with the other parents but usually it seemed in the chaos of starting a new day, no one would let us in. I’d wait, signaling, until the crush of traffic had past and we could leave unnoticed; Alex sighing heavily as we pulled away from the school grounds. I’d turn left, to do what Alex always wanted, "Take a little drive, so I can get prepared to go inside." We'd drive the few miles in silence, move like zombies towards our traditional pre-dawn destination. We'd pass the bugling elk, pass the startled deer to stop by the side of the road and watch the swans. On this morning our spinning wheels had separated the fog hovering above the road and in the rear view mirror it looked like ghosts being pulled apart from each other, (like torn cotton candy). I watched as the broken mist rose up and seemed to reach across the gaping distance, hoping to reconnect, stretching with long, mournful arms.

Alex was quiet as we drove. I knew he was dreading school, dreading bells, pencils, and the emptiness of recess. And as we drove further away from the place we were suppose to be, I was left wondering how I could ever have said autism wouldn't affect us, wouldn't change our relationship. But I had said it, yelled it in fact across a whole parking lot at the doctor’s office, hollered to Russ, “This doesn’t change anything!” while I’d crossed the road, sweating in the suffocating Arizona heat.

At the sanctuary, there was a faded wooden sign explaining the refuge was built as a class project.

-And no matter how many times, I read the sign, I always envisioned the way the students would have told their parents their plans, and that image of bursting excitement, always fed into a vision of parents writing about their child in their Christmas letters, “Our little Timmy, 9,  has added one more feather to his already full cap (bless his soul) in between rescuing abandoned puppies, heading up the student counsel, participating in a focus group supporting overweight tweens and trying out for the Olympic skiing team, he's been building a refugee to protect our earth's waterfowl. He’s really an environmental professor in the making! Look out Jane Goodall!” I would sigh over how easily I imagined they could lace their words with layers of intricate, drooping pride.

 

But on this day, the reality of upkeep had surpassed all those sparkling classroom dreams. The water was stagnant, the grass overgrown, newspaper bunched in a branch of a tree. Alex rolled down his window, the cold air rushed in like death, when I pulled over so he could get out, his words were white smoke against the chalkboard sky.

We stood together, not touching, but close. Watched the ripples seep unaccounted into the sandy shore, watched the perfect silhouettes of the swans gliding on the silvery water unscathed, their beauty startling, their eyes shined like black pearls the unexpected trumpeting calls became the sound of rejoicing. I was distracted by a swan taking off from the pond, I watched her rise up, perplexed as it seemed her wings beat furiously against nothing.

Along the fringes of water, a group of awkward cygnets had gathered together; their down the color of soft gray rabbits. Their necks were short, movements rigid and calls harsh; the notes knocked against each other when they open their mouths to protest being pushed to the edge. Alex left me to walk some distance up the shore; he was almost far enough away to be lost. Near the edge of the fence, he’d found the broken remains of the shell of a hatched egg, he held up a handful of pieces, calling, “Come see what I found.” I moved slowly towards him, rubbing the sting of cold out of my arms while I walked. The fragments of new life were scattered like puzzle pieces along the trail and I was left suddenly wondering why the story of “The Ugly Duckling” starts with the life of the cygnet? Why did Hans Christen Andersen ignore the story before the story; a story where the mother swan had noticed her egg was missing. I wondered how many times she'd circled the sky, her ebony eyes scouring the ground, frantically searching for some clue as to what went wrong.

When I reached Alex, I touched his arm; he turned, bright eyed, hopeful, until I said a little too cheerfully, “We've stayed long enough. We need to go back. School will be okay.” Alex sagged under the weight of my words, he looked at me skeptically, knew I was lying, but turned to follow me back to the car anyway. We walked along the worn path silently, the frozen grass crunching under our feet. The sun hadn’t risen yet, but the clouds had gathered in the spot it would grow from, gauzy and pink they stretched across the horizon, layers of orange weaved throughout, bloated like unraveled yarn, the clouds waited protectively, cupped like two hands, soft like a nest. At the car we stopped, resigned to our fate, but still, I hesitated, stalled along with him. I'd paused, holding my breath while I took in the beginning moments, reached for Alex’s hand and when he didn’t jerk away, it made me linger longer, savor the moment of hopeful suspense. 

What I remember from that long ago morning isn’t how I had to drag Alex into the school, wait at the counselors office, bribe him with extra rewards, distract him with funny stories, beg him with low, frantic pleas, or how I'd finally had to leave him; distraught, hurt and alone. What I remember….what I choose to remember, is how I stood with my son and watched the way the first light of day had touched the tired mountains, the quiet pond, the dewy grass and made everything sparkle. I remember we stood together in the unblemished calm of new light and Alex had pointed out two swans about to pass each other. I thought at first they’d collide, then, was sure instead they’d hurry along, intent to get to where they needed to be, but no. They’d paused, lingered (their webbed feet still paddling beneath the surface, still churning water, still keeping them afloat) unhurried, they seemed to absorbed each other’s presence, then almost like a greeting, each swan bent their neck into a graceful question mark, reverently dipped their soft heads and together their two curved halves made a perfect heart.

The same pond, the same day, a different view; the clouds rolling in.
 

Letter Therapy = PS: You Made the List!

 

Russ, (repentent after sleeping-in on a camping trip & leaving me alone to deal with monkeys)
This is his best attempt at, "Love me! I'm an angel" Yellowstone July 2009

 

Years ago I sat in a human psychology class listening to a teacher explain the different ways relationships functioned. He used a letter “H” to illustrate a couple who weren't in a healthy relationship; they essentially lived parallel lives –each individual one side of the H- with very little connection in the middle. But an “A” couple was ideal; they had their own “lines” but still leaned on each other. He explained that in marriage you need to have your own life and interests while still being connected. The trick was not to lean on your partner so much that you became enmeshed-which was apparently a bad thing- at the time I was single and longing for love and being enmeshed sounded divine.   

I did meet someone wonderful. He was kind, handsome, totally into me and he could single handedly lift a washing machine from a moving van; thus fulfilling all of the requirements on my “What I want in a spouse list.”  I could think of nothing better than spending every waking second with him.  I wanted our “letter” to be an “O” because that way you couldn't even tell where one person's needs and wants ended and another person’s needs and wants began. I was head over heels in love. We were apart during our engagement; Russ played football at one school, while I went to another. He was off tackling someone on the weekends, while I was sitting on the sidelines wishing he was tackling me. We couldn't get enough of each other, and when we finally got married, I remember thinking everything was going to be perfect.

 (Insert. Dramatic. Sigh.)

 

Strawberry Shortcake + Happy celebrating boys + Fire = Russ turns 36! Jackson 2008
 

By the time we’d been married six years, we had a three year old, an eighteen month old and a two week old. Times had changed; I smelled like milk. I was no longer considering forming any letters of the alphabet with Russ. I wondered why anybody even invented the alphabet and in the pre-dawn dark, I may have periodically ranted in the general direction of my husband’s sleeping form, shouting: “THERE WILL BE NO MORE ENMESHMENT EVER!!”  In those early days of mothering, I was clawed, clutched, sucked, wet on, fought over, hit, thrown up on, cuddled, and loved twenty-two hours a day. Note: there was a two hour block of time when I was free to myself. I tried to sleep during that block of time.  My husband, however, thought this was a good time for enmeshment. He missed our “O days.” He would even settle for two dysfunctional L's lined up by each other, he said he wasn’t asking for much, maybe just a little cuddling? I used to love to cuddle! I responded by saying he could touch his big toe to my big toe, but as we laid in bed together, I realized he needed to cut his toenails, so all bets were off.

 I think the initial hope Russ had that we’d get through the early stages of parenting and resume our O letter lifestyle was obliterated years ago. We’ve grudgingly accepted that our haphazard pace has only increased with time. Like everyone, we are swamped juggling work schedules and boy schedules and life schedules. Russ may have given up his dreams of enmeshment, (which I’ve assured him the professor said was for the best). But sometimes at night, before we succumb to the weight of exhaustion, we lay in bed, our hands touching, and that contact sparks some long ago memory, I close my eyes and remember the hopeful kids we once were. I trace my finger in his palm, draw the letter A the way I imagine Anne Sullivan would trace it into Helen Keller’s palm. The need we have for communication is still there, so we stutter through the words at first, try to sound out the letters, work to string the vowels and constantans together to form sentences.

 

Russ & his "Mini Me" Alex: If you want to see Alex smile a real smile, just put him with his dad! 2008
 

We try to be gentle with each other in our awkward attempts at articulation, but a few years back, we broke the cardinal rule of our letter therapy sessions. We tried to form words after midnight (which means the words that were formed might need to be edited for content). It was a rough day that flowed seamlessly into a rough night. Everyone had the flu, we were moving in a week and I was in charge of a school fair the next day. We were both so exhausted from packing, cleaning, and administering Tylenol to even see straight. Russ and I collapsed into bed, practically delirious. Before I’d even pulled the covers over us, I felt at once crowded. “Scoot over” I said, elbowing him, “You’re hogging the bed!”  “I'm hogging the bed? You're on 2/3 of the bed!” Russ countered, pulling my hair.  Now, this was a queen size bed and Russ is an ex-college linebacker. The very idea that Russ could insinuate I was taking up the majority of the bed was infuriating, and I told him as much. Russ claimed he was falling off the bed and if he scooted over any more he'd be sleeping on the floor, so naturally I’d cried, “And that would be a bad thing because...?” Instead of answering my question, Russ declared, “You always hog the bed and I never complain!” So I said, (with perfect diction I might add) “Don’t you have a minor in psychology? Shouldn’t you know that using the words “always” and “never” when discussing behavior is not a good choice?” “Well if you didn’t always hog the bed, I wouldn’t have to say it.”  Russ laughed smugly. I love my husband for his sense of humor, but this was NOT a joking matter. Clearly he took up more space on the bed and I was the sacrificing wife who always scooted over to the other side so he would be more comfortable. I climbed out of bed, pulling the blanket along with me. “Where are you going?” Russ asked, confused, “I'm going to sleep on the couch, so I don't crowd you so much.” I ground out, throwing a pillow at his head. “Oh, come on Joanie” Russ cajoled as he wearily climbed out of bed to chase me down the stairs, realizing as he raced, that I was not in a teasing mood, or even a rational mood for that matter.

 I flopped on the couch and turned on the TV. “I hog the bed? I hog it?” I yelled into the dark. Russ caught up with me and stood uneasily at my feet, blinking like a deer in the headlights, not sure which direction to sprint for cover. Finally, decisive, Russ threw his hands in the air and said, “All right, let’s settle this. I'm going to get the tape measure from the garage and we can measure to see who is actually taking up more space.” “You are not!” I cried leaping from the couch and following him to the garage. After he went outside I locked the door and turned out the lights. It was twenty degrees and I laughed maliciously as I watched him make his way barefoot through the snow to the front door. He came inside shivering, held up the tape measure and grabbing my hand in his cold one said, “Come on wife, let’s settle this.” I followed him up the stairs. We lay down on the bed. Russ got up and tried to measure the distance of our positions, but I complained that when he got off the bed, he changed the point where his arm was resting.” After some discussion, we agreed to lie side by side while I used my mascara wand to make a tiny dot on the sheet where our arms rested.  We got off the bed and I stood at the foot of the mattress while Russ fumbled with the tape measure.  Looking at the sheet I was shocked when I realized my side was significantly bigger than his. BLAST! So, naturally, at the last minute before he could measure, I pulled the sheet to the side, so it made my side smaller. Russ hollered “You cheated!” “I did not!” I cried, laughing. “This was a stupid idea!”  I continued, falling back into bed. It was one AM. Russ climbed into bed as well; I curled into him like the letter C. I cried a little from the sheer force of fatigue I felt crushed by. Russ held me, tried not to fall asleep while he listened to me rattle off my complaints. He kissed the top of my head and before I finally succumbed to sleep, I wondered why I thought enmeshment was such a bad idea.

Hangin Out at Spencer's Football Game: Thus the big smile! Russ & Logan. October 2010

In reality, our moments of connection; our much needed letter therapy session are sporadic at best. In the past I have easily justified this drop in adult conversation as a necessary part of the cause and effect of living with autism. The whole way we navigate our world, from opposite work schedules, to dividing and concurring tasks, to deciding whose dealing with the child whose having a meltdown and whose staying behind to pick the pieces…is designed around our boys. It’s a zone defense. We have it perfectly worked out so one of us is always helping our children, but by default, rarely helping each other.

 But here’s the deal; Yes! Life does pull the carpet out from under your feet sometimes; it slams you to the ground so fast all you can do is wait for your pupils to redialate so you can locate the car keys that fell out of your pocket midair, (because of course, the boys are late for scouts). It’s easy to justify the way you behave in a crisis situation. I don’t blame either of us for getting so caught up in our roles as adult care takers putting out fires every five seconds,  that when you  finally have a moment to regroup, to shake off the soot, that you naturally (oddly) think of yourself.
 

Spencer giving Russ a little sugar: OR Spencer asking Russ what kind of face
to make when he starts shaving? April 2010

 Years ago, a good friend of mine with a very busy life told me she’d checked her calendar and realized with traveling for work, and her kid’s schedules that if her husband was going to get any enmeshment, it would need to be that night. So, when the kids were finally asleep, she climbed in bed, lit a candle and said (possibly in the same tone of voice you would tell your child, “I want this room picked up, now!”) “Ok. I’m here…”  Her husband responded, “I just feel like I’m one more thing on your to do list.” I asked my friend what she did then, and she said that she blew out the candle and resumed reading her book. I told her the difference between her husband’s response and mine, was that Russ would have looked dumbfounded and cried out gleefully, “I made your list?!!”

 I confess I have been so overwhelmed with keeping my wits about me, with trying to protect the fragile remains of my crumbling sanity, that at times, I have brushed away Russ’ needs like I was brushing toast crumbs off the counter. His need for connection has in the past become one more thing on my to do list, and possibly even the last thing on my to do list. I’ve lost track of how many times I’ve thought, “You’re on your own Russ. You’re the adult, and while I know you’d like to share your –good day, bad day, ordinary day- with me, Alex just melted down on Isle 5, so, let’s catch up…another time….next month? Wednesday the 4^th? I can pencil you in at 5 pm between therapy appointments.”   

Logan, Spencer & Russ with their beloved dog Boo Bear. Jackson 2009

 I’ve realized in the last year that the mounting stress of raising three boys, two with autism, coupled with the pressure of daily life has at times caused me so much anxiety that I’ve turned inward as a means of self preservation, However, in turning to self so much, I’ve denied my husband his place as protector, I denied him my vulnerable heart. I thought of him less often, and our points of connection grew farther and farther apart. I was wrong. (It KILLS me to admit this! Picture me dead on the floor, and you, grappling with an unfinished post and no closure). I know now, we need the hold we have on each other like we need air. It must be protected with bubble wrap. It’s fragile and tenuous. We need to consistently sound out the words that give us joy, we need to laugh often, we need to connect more than just our big toe touching each other. We need to hold each other closely so we can remember there are still good things in the world and moments of happiness yet to be discovered. There is strength in the Quaker Proverb, “Thee lift me, and I’ll lift thee, and we’ll ascend together.”

 So, apparently you can teach an old dog new tricks, because, SURPRISE! I put Russ on my list,  which means I sometimes say no to other things, I let Alex writhe about on the floor of Isle 5 a few extra minutes, and I have washed the same load of laundry three times because I keep forgetting to put it in the dryer. We’ve shifted our priorities a bit, made a little wiggle room, reevaluated what is really important, and it turns out, fighting over who takes up the most room on the bed = not so important. Besides, we got a king size a few years back, and most mornings it would seem Russ and I are hovering on either side of the mattress anyway, because Logan has come up sometime during the night to sprawl between us, forming the perfect letter H.

A Bear & His Cubs. Salt Lake City, Utah, April 2010

 

Hope Sometimes Smells Like Burnt Popcorn

 

 

Fire & Boys....always an intoxicatingly frightening combination. Alex & Spencer Jackson 2009

Several years back, I scraped my toe (the piggy that eats roast beef) on a screw in my living room. I thought nothing of it—a surface wound at most. I wrapped a Batman band aid around it and went about my life. A few weeks later, I noticed the wound was infected. I diligently poured hydrogen peroxide on it, applied Neosporin, and wrapped the toe, once again; this time in a camo bandage.

The next day I felt lousy. By evening I was running a fever, aching all over and shaking with the chills.  Russ was teaching a night class at the time, and had left me alone to pop Motrin and climb into a tub of hot water. Later, I’d hastily dried myself and pulled on a robe before collapsing into bed besides Spencer and Logan who (ignoring my moans) cuddled close as they watched a show on TV.

As I lay there, somewhat comatose, wafting smoke started to fill the space between the ceiling and floor in our room. I turned to the boys, demanding, “Are you guys cooking something?” “No” they said in unison while the smoke continued filling the room. I DRAGGED myself out of bed, unsteady on my feet, and staggered down the stairs. Coughing, I waved my hand in front of my face so I could see, the smoke alarm shrieked insolently. Before I even reached the living room, Alex met me at the bottom of the stairs, choking on his own laughter. I stumbled to the microwave where I could see something was on fire, yanked the door open and with a hot pad grabbed the “cup of noodles” out of the microwave and hurried to throw it into the yard, grabbed the hose and sprayed it down.

“WHAT WAS THAT?” I demanded when I came back inside, throwing doors and windows wide to clear out the smoke. I pulled a stool over so I could turn off the blaring fire alarm. “It was the ultimate stink bomb! Remember?” he asked, erupting into laughter again, “I told you about it---I got the idea at school when a kid put a cup of noodles in the microwave without adding water. It filled the whole cafeteria with smoke, and Tyson called it the ultimate stink bomb. I thought I’d try it out.” (Alex had been talking about the ultimate stink bomb ever since he started fifth grade, but I couldn’t believe he picked this moment –with me, possibly seconds away from certain death- to implement his plan.) The smoke smelled worse than burnt popcorn and had a cloying quality to it—it permeated my hair, my clothes, and I think the very pores of my skin. I remember lightly smacking the back of Alex’s head (something I never did) and demanding, “What were you thinking?” “That’d it be funny” he said, giggling, while I heaved myself up the stairs. I collapsed once again on the bed next to the boys, the layers of smoke settling like early morning fog in the bedroom.

Fire....so....pretty...Loggy Bear feeling the effects of the flames... Jackson 2009

 

When Russ got home, I knew I needed to go the emergency room, (my fever had spiked to 105) but I was avoiding it like the plague. I felt stupid going to the ER with a “scraped toe.” But, in the end, my conscience won out. I pulled on the same jeans and sweater I’d been wearing earlier, (that had sat in a pile on the bathroom floor…just down the hall from where the microwave had given birth to that which should not be named) and staggered to the van. It was 9:00 pm, Russ stayed behind to get the kids to bed.

As soon as I walked in the ER, the secretary started sniffing the air, “I’m sorry “she said as I sat down, “I think somebody is burning popcorn. What was your name?” she asked, (turning her head to grimace at the offending odor) “The burnt popcorn smell is me. I didn’t have time to shower.” I mumbled, apologetically. “Oh.” The secretary said, her eyes watering. “Uh, what are you here for today?” She continued, her fingers flying across the key board. “I have a cut on my toe.” I said. “Does it need stitches?” She asked, pinching the bridge of her nose. “No.” “Oh.” She concluded (probably adding a side note to my chart that said, “Crazy lady probably seeking drugs for superficial wound. Alert psych ward. Offer her dinner, a shower and a lollypop, I think she’s subsisting on burnt popcorn.”) “Take a seat over there, dear, by the bookcase.” She directed. I stood up, wobbly, and walked to my designated spot…. the farthest place in the entire empty waiting room.

A nurse came out to retrieve me, stopped short as she opened the door to the ER, and cried to the secretary, “Did you burn popcorn?” The secretary, rolling her eyes, pointed her hitch hiking thumb towards me. “Oh no!” The nurse exclaimed. “Was there a fire?” She asked as she ushered me into an empty room. “Are you burned?” (I quickly relayed the ultimate stink bomb story to her) “Well, I think you ought to make your son sleep in the snow.” She concluded, appropriately. “I know,” I sighed, “and of course I have company coming tomorrow.”

The doctor pulled the curtain aside and came into the room, “Uh! What’s that smell?” He asked, eyeing the nurse, “It’s against hospital policy to make popcorn in the ER! I apologize, Mrs.…..ah….Tidwell. ” The nurse covering her face with my file whispered I’m sure a shortened version of the ultimate stink bomb story. Nodding, the doctor, breathing through his mouth, said, “Let’s take a look at your toe, shall we?” Bending over my offending foot, he peered at the swollen, red toe, and much to my complete shock, instead of telling me, “You came to the ER for a scraped toe???” called to the nurse, “I need two IV lines started STAT! (He actually said STAT, I thought that was just for the movies). Suddenly my bed was laid flat, I had two nurses (their eyes watering from the stench) starting IV’s on both of my arms, and bags of fluid were being attached and steadily squeezed as cold fluid entered my veins. An Intern popped his head in the doorway, “Staff infection” The doctor said, “Man, I can smell that from here!” The Intern commented, his brow creased. “The smell is not from the staff infection, but the ultimate stink bomb” the doctor and nurse said in unison.

“You have a staff infection, and the line of infection is rapidly climbing up your veins.” The doctor told me (from a safe distance in the corner of the room). The intern walked to the edge of my bed with a sharpie marker in his hand, and wincing, uncovered my foot (I was given a warm blanket to help me stop shaking from the fever…I’m sure they planned to burn it as soon as I left.) He drew a line from the source of the wound, up my leg, and circled the infection at its ending point. “We need to make sure the infection stops, and the medication does its work. I don’t mean to scare you, but this is a fast moving infection, when the nurse saw you, there was no red streak coming from the wound. Now, even with the IV’s attached, the line of infection is past your ankle and half way up your calf.” “What happens if it moves up my body?” I asked, (honestly still in shock that my scraped toe was causing so much duress, and the utterance of words like STAT) “That would be very, very bad.” The doctor said, The Intern added, “If it gets to your heart, it can be fatal” “Fatal?” I cried, “We have the science fair tomorrow, I don’t have time for fatal!” The doctor shot The Intern a harsh look and assured me everything would be okay. He thought we had caught it early enough.

I spent the night in the ER, went through a few bags of antibiotics, but when the first light of dawn started touching the mountains, the doctor came into my room for the last time. “You know, you kind of get use to the smell,” he said. “Thanks. I’m planning on bathing in tomato juice when I get home,” I assured him, sleepily. He laughed, but then growing serious said, “You know Joanie; people die from these infections.” “Really?” I asked, stupefied. “From a scraped toe?” “Yes." He said, handing me five prescriptions to fill,  "You did the right thing coming in.”

Smoke gets in your eyes.... Sticks AND fire....that is a heady combination! Spencer 2009

 

I have been thinking about the tendency I  have to battle it out with grief, whose presence to me, sometimes feels like a sudden, intense infection, something that certainly needs the words “STAT’ attached to it. And I confess, having two of my three sons diagnosed with autism means that I have spent many lonely nights in a metaphorical ER room, wondering over the beeping monitors and oxygen masks.  Mostly, I stumble about my days, clumsily happy. I go through the motions of living. I love my boys, we do homework, make revolutionary war costumes, do the dishes, walk the dog. We cycle through our days; but I think, as a coping mechanism, I attempt to keep the heaviness of life at a safe distance. Until, often unexpectedly, I stumble into pockets of grief, a potential infection as thick as molasses, and I can’t seem to wade through it fast enough. I am stilled by the heaviness. Rendered catatonic by the cache of emotion. And I confess, sometimes, when I am pliable, when all resolve to fight has slipped from my soul, drained like dish water, I have thought, “Move sluggish limbs! This is terminal!”

Grief, no matter its source, cannot be ignored: Heartache over our missteps as parents, anguish over setbacks, remorse that you’re not the mother you always thought you’d be and guilt over not loving every moment of your life as a parent. But here’s the deal with grief, if allowed to, it can spread to all the vital organs, spread with a tail of pink as vivid as a comet. In thinking about how I deal with the disappointments of life, the vicissitudes of loving, I’ve learned I need to address my anguish, before it gets to my heart.

So what do I do? I allow myself on occasion, to curl around the hurt, to keep it still and throbbing in my center. I feel what I don’t want to feel, what I avoid at every turn. BUT…then, I know, I must wean myself off the heartache before I become addicted, and wrap myself forever in the velvety cloak of fear. The first step in recovery, at least for me, is to get up from that fetal position and put my bra on. It’s to go for a walk. Talk to a friend. Do an activity I enjoy (and face the things that gives me the most fear, in a space where fear is not allowed to exist. If my boys are giving me anxiety, I try to take them somewhere I know they won’t get into too much trouble, like an empty park, or a padded room.) I laugh. I laugh often and heartily. I don’t read disturbing websites (like the ones about adults with autism) at night, when I am tired and vulnerable. I avoid negativity. I am working on asking for help when I need it (key word working). I avoid self pity. I trace grief with a sharpie, and say, “You are not allowed to cross this black line” I remember what my mother always said, (and her mother before her said, and her mother before her….) “this too shall pass.” Or “today is the day you worried about yesterday, and all is well.” 

Camping in the backyard: (that flash is brutal!!!) Jackson, 2009

 

Grief. We all have it. But I know now the purpose of grief is to shape the person we are becoming; the ragged infection of angst has broken me apart- but in the breaking, it has crashed into the place that holds all the compassion I am allowed in this lifetime, (I picture it in a glass capsule – sparkling like pixie dust) and set it free. And now, because of grief, compassion has consumed me, floats about in my veins as thick as blood cells. It fights off the infection of anxiety. It keeps company with love and charity. Yes, grief –in it’s intensity- has burst open the pockets of heartache and fear, but in so doing, has also allowed hope (fear’s nemesis) free to do battle, an antibiotic.

To me, taking control of my world means I don’t just brush the pieces of my life that give me anguish under the rug (at least not ALL the time) but rather, I recognize the disquiet heartache for what it is, and I move forward anyway. I accept that even in my resolve to push onward with hope, there will still be moments when I get tangled up in mourning, when grief over the life I have and the life I thought I wanted, will make me double over. But, with time I’ve learned, clutching my stomach and crying uncle isn’t what gives me fulfillment. What gives me joy is being a mother. And part of being a mother is being the nurse. I am the doctor for my boys, I am the comforter, and even with all my blaring imperfections, I have even become the antibiotic for the times when grief has seared my boy’s tender organs. I know I don’t want to be so caught up in my own sorrow, that I miss the chance to be the one sitting near my children with chicken soup and an icepack. I don’t want to miss one moment of comforting my boys in their times of mourning, in their times or reconciliation, in their own moments of grief.

Looking back – to that day when I was so sick, to the conception of the ultimate stink bomb, what I remember most is the look of joy on Alex’s face as I tumbled down the stairs; his triumph! His successful mimicking of other fifth grade boys. His dodging of my so very ordinary thundering and complaining about his actions just like any other boy would dodge their mothers when they had done something they knew was wrong. I’d taken off the kid gloves I always handle him with- I was an angry mom and he was just like any other ten year old boy. I remember his unreserved giggling, his mischievous grin.

Hope: it can save your life. It bubbles up like uncontrolled laughter- it cannot be contained.

And sometimes smells like burnt popcorn.