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.