Same Same

 

At the top of a Buddhist Temple in Thailand, my friend Lybby and I were trying to
take a picture together and this lady wanted to join us... I LOVED it!

 What’s that saying? “When in Rome do as the Romans?” So…. when in Cambodia, do as the Cambodians? Well, I don’t think I saw any Cambodians indulging in $5 massages, skewers of charred cockroaches yes, but I think that treat is reserved for special occasions, like birthdays or when celebrating little Rahke surviving her first trip on top of daddy’s shoulders while he drove the family motorcycle through traffic!  But of course, being an American in Cambodia (pretending to be a Roman?) where else would I find myself but laying on a mattress next to three other friends, wearing a pair of massive (in case a sumo wrestler stops by?) cotton pants and a t-shirt that said “I love Cambodia.” I had two massages while in Cambodia (I know…I am a bit of a diva) and the second one was AMAZING, but on my first massage, I think I got the poor girl who must have opened the shop at six am or something, and was understandably suffering from carpel tunnel by the time we laid down at 8:00 pm; she seemed wiped out before she even began. And whenever I would crack my eyes to look to my right or to my left my friends were getting the rub down of their lives; their eyes shut luxuriously as occasional low moans slipped out like a sigh as days of traveling were smoothed out of their tense muscles.



Lybby and I wondering if the pants are big enough, maybe the next size up?

 

Meanwhile the only muscles my masseur had vigorously worked happened to be the only muscles I didn’t want her to work. I had gotten a fairly nasty sunburn on my shoulders while snorkeling and explained while pulling down my shirt and pointing to the blistered red skin, “Painful!” Well, I can only assume she thought I meant painful as in “Tight! Work it baby!!” And since my shrieks of duress seemed to be taken as compliments, and also because I am wildly non-confrontational,  the massage progressed predictably from the torture phase to the laying catatonic while she straddled  my thighs and administered random karate chops to my head phase, which naturally led to the press on what I can only assume were strategic pressure points on the insides of my hips phase, (probably something to aid with my digestion or make me more fertile…surprise Russ!) this phase made me nostalgic for home; reminding me of the time I volunteered at the scout expo to be a first aid patient and the scouts practiced applying pressure to stop the “bleeding” of a “bullet wound” and after all twelve of them tried and I was still “bleeding out,” they wisely moved on to practicing tourniquet merit badge tying on me with Sam, the runt of the scout litter being called on to rip his t-shirt into strips for the cause, “Stop being selfish Sam, Do you want her to die right in front of you?!!”  

These beauties loved having their picture taken, Angkor Wat, Cambodia October 2014

 

But at some point the tourniquet merit badge phase ended, (I’m not sure how long it lasted… I may have temporarily passed out when she found my neck pressure points) and as I regained consciousness I noticed all movement had stopped, the room seemed fuzzy around the edges as air filled my lungs again and I noticed my t-shirt had ridden up a bit, and in the humidity laced dark my masseur was quietly and intensely studying my stomach. She slowing began tracing the silvery length of a stretch mark, I was a little embarrassed at first, but then I looked up into her beautiful mocha face, her wide unblinking doe eyes starred back at me as a smiled spread like a sunrise across her lips and she said in stilted English, (while patting her size -0 stomach) “We are the same!” Then she bent and fascinated, traced another stretch mark, I resisted the urge to say, ‘Honey, we could be here all night!” and pausing she asked shyly, ”How many children you have?” “Three boys” I said holding up three fingers. “How many children you have?” I asked pointing at her.  She smiled and scooted up a bit onto my lap into a more comfortable conversational pelvic straddling position, “I…. 3” she said, holding up three fingers. “How old” I wondered, “One girl 9 year, one boy 5 year” and then she paused and once again begin tracing another stretch mark --- “and one baby boy one year,” she said slowly,  “baby boy killed, husband killed one year in car accident.” “They died one year ago?” I restated, shocked. “Yes,” she continued as she starred earnestly into my eyes, “Now every day I alone.”  Well, what else could I do but sit up (no small task when she was straddling my lap) and even though I didn’t know the customs of Cambodians, I hugged her anyway, and looking into her melty chocolate eyes said the first thing that popped into my head, “Yes. We are the same.”



At the morning market, waiting for a sale, Cambodia October 2014

In Cambodia all the markets are made up of a string of rickety shacks, where people sell their goods. They sit on their stalls a pile of rice noodles resting next to their bare feet, they refold scarves and stack raw meat, they smooth t-shirts and call as you walk by, “What you want lady? You like this scarf lady? Pure Cambodian silk lady. You try? What color you like?”  While browsing I kept seeing shirts that said, “Same Same” on the front, and “But Different” on the back.  Apparently the phrase is used a lot in Thailand and has spread to most areas in Asia, and can mean just about anything depending on what the user is trying to achieve, for example, Question: “Is this a real Rolex?” Answer: “Yes sir, same same but different.”  Meaning, it looks exactly like the same thing, and in so many ways is the same thing…but it’s not actually the same. “Same same…but different.”

I literally am the most computer savvy person I know...obviously,
because for the life of me I can't figure out how to get this photo to flip..
.and I wanted one of me wearing the "Same Same" shirt I bought...
but take it as a metaphor; it's sideways because everything doesn't have to be the same!

 

What struck me in that dimly lit, sweaty massage room (besides the kung-foo hands of Mae as she proved her affection through a series of karate chops between my eyes) was how we are all the same, at our cores the same.  The common thread of humanity weaves us all together in tight binding stiches. I knew nothing about the struggles Mae endured, I didn’t know how it felt to lose a child; but I confess, in my midnight moments, I’ve known how it felt to loose part of a child. I understand how it feels to struggle, and that life sometimes swings without gloves; that grief can box your ears; sit on your chest while you cry uncle. I felt a connection to Mae, because we had both been stretched by life; Same same.

Royalty at the Temples at Angkor Wat, these girls were so sighably beautiful, Cambodia 2014

 

For me, my life has been a reconciliation in learning to be compassionate. Sometimes being kind is the easiest thing in the world; it’s natural to want to comfort a toddler whose just tripped, or hug a friend whose been diagnosed with cancer. But there are other times when showing compassion has felt like choking on bile. For example, there was the time Alex shoved Logan in the pool (fully dressed) because (naturally) Logan was a better swimmer than him, and it made him mad. Or when Alex knocked a kid’s birthday cake (yes, the one my friend had slaved over, and stayed up all night to remake it THREE times until it finally resembled Buzz Light Year) to the ground because he had wanted to blow out the candles, and it wasn’t fair that only the birthday boy got to! (Bet you were glad you invited us to the party!) Or a favorite of mine includes the time he threw a mango smoothie from the back of the van to explode against the windshield and cover me from head to toe with vitamin C … (like a forced hydration mask really). And yes, of course we were on our way to get family pictures. And yes our color scheme was white and gray….and shades of orange?

And that was just last week! (I’m kidding :) )

Alex indulging me in a rare selfie shot. He's even smiling! It's a Miracle! October 2014

 I have learned true compassion for another soul can never be approached on unequal footing; where one person plays the doctor and one the patient, because the tendency to be-little the sick while you wax philosophically about the genius of your medicinal skills is too great, and it doesn’t ring true to the afflicted.  But rather, as we approach each other from a perspective of common ground; patient to patient, healer to healer;  vulnerable as we pad towards each other, our shirts cautiously raised,  revealing our fragile underbellies, the silvery scales of our scars; can true connection take place. Implementing this practice reminds me of something I learned during my first yoga class, because you’ve never been truly vulnerable until you’ve been asked by the instructor to demonstrate the pose “Down Dog Bow” (google it) or tried to stretch your unstretchable body into poses like the “Please don’t trip over me” pose. At the end of the class the instructor bowed to us and said, ”Namaste,” and the class then in turn bowed back and repeated, “Namaste” to the instructor.  In Cambodia this gesture is also how you thank someone; hands clasped in front of your heart as if you are praying, eyes closed as you bow your head to the individual you wish to thank. The gesture Namaste represents the belief that there is a divine spark within each of us; an acknowledgment of the soul in one, by the soul in another. A literal translation means, “bow me you” or “I bow to you.”  The spirit within me salutes the spirit in you.

 

My friend Adam demonstrating Namaste, Cambodia 2014

 

The trick is, that at least for me, real life is distracting and I am hopelessly flawed. I get sidetracked by worrying if someone is going to slip in the trail of sweat I’ve left while attempting to do the bended cat pose, and I react too fast, anger jumping in my veins when I’m worried if we can get the deposit back from the photographer since Mango is NOT on my color of wheel of approved colors for my skin tone. But mostly I get scared (and fear casts a long shadow) because It’s hard to reveal my scars when I’m certain that when I raise my shirt I will be the only one with stretch marks (*I never once have been). Or because like every other person I know, someone has at some juncture pointed and laughed at our weaknesses, which makes us want to curl around our fragile underbellies like a porcupine and shoot anyone who comes close enough to see that we’re not just a ball of stone but a living creature (Please note that my son Spencer –the writer, thinks this is a poor metaphor, hedgehogs curl into a ball not porcupines, and porcupines don’t shoot quills but rather fling them, never-the-less indulge me will you?) It’s easier to take a defensive stance and not let anyone close or justify our mistreatment of others as valid because it’s a protective measure; we swing first, thinking “If I wound you, then you can’t wound me.” But in the end, nobody wants to be a boulder of quills, nobody wants to be disconnected. For me, I’ve learned it’s only when I act with pure, undiluted love towards another that true connection takes place and hearts are healed. Therefore, if we are same same and if the spark of difference is to be recognized and honored then we must all put down our stones of judgment so we can lift up the arms that hang down, and in turn be lifted as well.

Noodles? Chicken? Pad Thai? This lady is your go to girl! Cambodia 2014

 

 We are all on the same team so lets stop lining up against each other. We are all duplicates, synonymous, tantamount, equals; that’s what I learned as Mae explored my most vulnerable spot in a sticky room in Cambodia; we are all the same, and our differences must be respected and learned from.  I’m glad I traveled half way around the world because those random Karate chops to my glabella cleared the clutter from my memory so I could remember my shared humanity, because in remembering I found strength.  Now if I can just remember to bring a towel to yoga and to keep  smoothies out of the car I will be golden.

 

 

 

On Snakes and Sticks



Spencer found a snake, at String Lake, after eating cake, it isn't fake, he's super great and my best mate!

At the start of 2014 I did something SO STUPID! I realized I was turning 39 in February, which meant the big 4-0 (GASP) was hovering just a short year away, this thought caused a momentary midlife meltdown (which in the future will be referred to as MMM, which is similar to M&M's just minus the hard candy shell, meaning it melts in your mouth AND in your hands). It is, I confess, a luxurious thing, my melting down instead of my boys; so I was selfish, I decided I needed some pampering, and allowed myself five minutes to bask in my MMM.  BUT during that five minutes I decided that before I turned forty I wanted to do something “life affirming??!!” (Good Grief!!) Top of my list of course was to eat an entire house-made hot fudge Sundae from the Ghirardelli Chocolate Factory in San Francisco. So, I figured in order to balance it out, I’d better take up running again, something I hadn’t done since college. As you can clearly see, the boys’ melting down doesn’t have nearly such catastrophic effects on my life as MY melting down.

Another shot (this one taken right before Spencer FLUNG the snake at me).
String Lake, Grand Teton National Park 2009

I have been running since late January. I am up to 45 continuous cough filled minutes. It would not be an exaggeration to say that usually while running I am experiencing hallucinations from sheer dehydration as I stagger incoherent along the park trail, a Hansel and Gretel pattern of sweat marking my progress in the 98 percent wretched Texas humidity. The sweat makes my eyes sting, (keeps me alert) my fair complexion burning with heat until I am red enough in the face that Louis, a sweet senior citizen who runs 8 miles a day (without even breaking a sweat) and also a volunteer fire fighter, felt it was his civic duty to stop me in my tracks and make sure I wasn’t experiencing chest pains (we’ve become very close over the last few months). Yes I am that runner. The one someone should blog about…(well if SHE can do it…ANYONE can!)  Needless to say, it was during one of these hallucinating-sweat-blurred-vision-states  that I came around the bend and noticed in the foliage up ahead a python; his diamond head raised and hissing, just waiting to strike. OR it could have been a stick. I continued forward, counting every ragged breath, knowing I was on mile two of four but comforted that Louis promised to start chest compressions if needed when he found my catatonic form on mile three. As I raced towards the snake, the rational dime size part of my brain said, “Joanie it’s just a stick. It’s not a snake. Simmer down!” But, then the part of my brain (the right side?) that likes drama said, “NOPE this is freaking TEXAS! Everything’s bigger in Texas! And probably someone’s viper or anaconda or boa constrictor;  the family pet, has escaped and been living on squirrels, feral cats and the bodies of reluctant turning forty runners who have passed out on the side of the trail from Texas induced humidity dehydration.”


We are fans of fishing....the guy next to Spencer caught this shark. My boys are DRAWN
to anything dangerous, which means that Spencer tried to help him get the hook out
and almost lost a hand. Oceanside California, October 2010

 

As I continued my approach, my mind ran wild with possibilities; "would it strike fast? Does the hospital have an anti venom regimen? What if I can’t identify the snake? And died a painful if not IRONIC death because how many stupid episodes of something like “Man Verses Wild” or “Weird True and Freaky” on snakes have I suffered through with my boys? Would Louis see the puncture wounds and know to suck the venom from my leg? (Why don’t I ever shave??? Poor Louis!) Dang! My phone is in the car, how can I call 911?  I guess I could draw 911 in the dirt or I could start a signal fire by rubbing two sticks together and do SOS puffs of smoke? (I moaned out loud at this plan because then I’d have to take off my shirt to make the puffs and then everyone would know I was still working to lose my “I’ve had three babies belly” and yes I know my baby is twelve! Stop judging me! I’m about to die from a snake bite! Have a little compassion already!) Then I started wondering about the cost of anti venom care… And do they charge you for an ambulance someone called when they saw your SOS fire, but by the time it arrived you realized you had just been scraped by a stick? How much does it cost to be life-flighted? Where would the helicopter land?  And what if they have to fly in the anti venom from India on a plane and it’s diverted because of thunderstorms and that twelve hour window is blown? Wait! Doesn’t Timmy down the street have a python we could milk?”All these thoughts were racing through my head as I ran alone on the asphalt trail; heartbeats pounding in my ears, getting closer and closer to the snake stick. And in the overcast haze, in the shade of the trees in the moist dirt with roots reaching up like arms from the grave I couldn’t tell what it really was.

I opened up the bathroom door...and found this reptile relieving himself
Love that Logan @ Jackson Wyoming 2009

Well you will be happy to know it wasn’t a rare horned viper, and that Louis didn’t have to risk razor burn to his face from my stubbly leg hair. But, on mile three of four I started thinking about my tendency to see snakes when there are only sticks.  Now, to be fair, I have had to suck a lot of metaphorical puncture wounds free of venom in my life. I’ve had snakes strike out nowhere and had the carpet pulled out from under me so many times that my rug burned knee jerk reaction now is to expect the worse. It’s an act of self preservation. If you are expecting a snake but it’s really just a stick then think how relieved you will be when you’re not life-flighted? AND, conversely, think how mentally prepared you will be (always always always protect that vulnerable heart) when it IS a snake and you ARE life-flighted.

But here’s the trick. It’s exhausting thinking there are snakes everywhere, even if in reality there are. It’s exhausting living your life with your boxer gloves held in a protective stance up to your face. It’s exhausting to operate in fight or flight mode all the time. (NOT to mention the whole cortisol hormone reaction which packs pounds around the middle when the catalyst for activation, i.e. stress is added to the mix… which I don’t think I have to point out that the side effect of unfair weight gain CAUSES stress, especially when put in a potential SOS fire building situation). I am tired of my sympathetic nervous system being SO sympathetic and just automatically triggering physiological changes; racing heart, rapid breathing, adrenaline secretion, so on mile three of four I decided that before I turned forty the real life affirming thing I needed was to figure out a way to have a life I WANTED to affirm (i.e. one filled with joy instead of anxiety), to start to see sticks again instead of snakes. OR to see stick AND snakes but be ok anyway.  

Alex posing behind a shark egg sack...this is what his embryo would look like.
Lego Land Sea Life Aquarium, 2010

Especially because Alex, (bless his heart) often struggles with making out the true shape of things. Only he takes it one step further than my dementia (seeing snakes where there are sticks) he takes a half truth, twists it, makes it into an undisputable fact, infuses it with a cocktail of highly explosive emotion and a catalyst of anxiety and mistrust and BAM! You not only have a snake instead of stick, but you are suddenly wading through something that looks like a scene from and Indiana Jones movie, knee deep in reptiles instead of walking through a forest. For example, Alex broke his arm, and when the Dr. went to take off the cast, his arm still hurt. She assured him that while it still hurt, the bone had healed. She showed Alex his X-ray as proof, however, Alex saw the space in his wrist between bones where the growth plate was and deduced that his arm was STILL broken AND that Drs. (obviously) were liars. This argument continued AT LEAST three years. ***As a side note, when you have a child who sees doctors regularly, this can be problematic and or potentially embarrassing when for example your son finds out his scout leader (and I should mention family friend) is also a doctor and refuses to go to scouts and when finally prodded enough to attend, yells during a pack meeting at his leader “YOU ARE NOTHING BUT A LIAR!! ANYBODY WHO LISTENS TO YOU IS AN IDIOT!!!”

Alex loves to go rafting at String Lake, the glacial water doesn't stop him from paddling around. Wyoming 2009

I often thought about Alex while reading The Hunger Games. In the story, one of the heroes, Peeta is injected with something called Tracker Jacker Venom. The venom, specifically engineered to target the part of the brain that generates fear and creates terrifying hallucinations, is used to hijack memories as a form of torture. A memory is called up by some sort of stimulus then venom is injected and the memory becomes subconsciously associated with fear and pain as well as being perceptibly warped. Afterwards, the brain records the memory in the altered form creating an effect which can never fully be healed, but treatment includes recalling the memory and attempting to associate it with positive emotions. The venom of autism –or at least how it manifests itself in Alex’s world- has altered my son’s memories, caused him at times to live in a state of terrifying grief, and the complication of perseverating causes him to replay those memories -digitally re-mastered in 3D- time and time again.

The boys climbing the jumping rock, right before taking the plunge! Wyoming 2009

 

Snakes instead of sticks. It’s the forest we live in. BUT, now that I’m almost forty, and with the clarity of thought that comes from being a runner (insert maniacal laughter) I’ve accepted that part of being an advocate for my child (which aren’t we all advocates for our children) means that I cannot afford to be so caught up in my own painful memories, my fight or flight response, so distracted in fleeing that I miss an opportunity to help my children fight the good fight, reclaim their happy memories and find peace.    
  

I am absolutely lousy at selfies, but took this shot right before going running 
because I was trying to see if my friend thought I should keep the jacket.
(Then I realized who wears a jacket when running in Texas?) March 2014

 

 So I’m working on it, one sweaty baby step at a time. I can't say that I have all the answers, or really any answers: diaphragmatic breathing, positive self talk? I'm not entirely sure how I'm going to get there, but I have a direction, and I'm moving forward. Plus, I’m thinking the next time Louis checks my heart rate I’m going to ask him to help me come up with a detailed plan of action; I’m pretty sure that in volunteer fire fighter classes they have a segment of time dedicated to mental health; or maybe I can just ask him to carry a stun gun to deliver a jolt to my heart to revive me during the times when life and not just dehydration renders me catatonic

But I Wanted Donuts!!

Beloved cousins Sam, Grace & Issac Ellis sporting their Krispy Kreme hats with Spencer
Notice all the donuts are long gone. June 2010

On a lazy summer afternoon several years ago, I watched as my two year old son Spencer raced from the kitchen to where I sat nursing his brother Logan on the couch. He barely paused in front of me before tossing a can of Spahettios into my lap (narrowly missing Logan’s head…sorry in advance third child) while crying triumphantly, “I want donuts!” After reminding Spencer once again that it was a family rule not to give our brothers concussions, I picked up the can, registered the Chef Boy R. Dee symbol and laughing said, “Oh Spencey, these aren’t donuts, these are noodles.” “NO!” He replied stubbornly, shaking his red head from side to side for emphasis, then, pointing to the picture of the yellow bloated circles on the front of the can, said, “DO-NUTS!”  I traced the same picture with my finger and with the air of authority borne from my reign as a parent said, “NOO-DLES.” Spencer sighed heavily (as if to imply I was the most taxing person he’d ever been forced to reason with) then he scrambled into my lap, (sorry once again third child) put his hands on either side of my cheeks, pressed his forehead to my forehead and said slowly -one dimple winking while he talked- “Help you me get the donuts mom?” I smiled, said, “Ok,” stood and laid Logan on a blanket, then scooped that little boy into my arms and carried him to the kitchen. I sat him on the counter top; his little legs dangled over the edge banging against the cupboards like a metronome while I foraged through the drawers for the can opener.  Spencer clapped his hands when I found one and watched fascinated as I slowly opened the can; but when I pried back the lid and little Spence peered inside, anticipation wetting his perfect lips, Instead of exuberance, betrayal register on his face as he starred at the watery red sauce; then he looked at me, his mournful eyes filling with tears, his bottom lip quivering as he reached his arms out for me to pick him up and kiss it all better, to magically restore order from chaos. I gathered him into my arms, he burrowed his head into the crook of my neck and after a moment of silent heaving cried out on a broken sob, “But I wanted donuts!”

Logan eating celebratory "I just graduated from elementary school" noodles. June 2013

And this was the exact phrase I uttered (BUT I WANTED DONUTS) as I pushed my way into the Costco bathroom in Henderson Nevada to try to wash the orange vomit out of my hair; it was orange of course because all Spencer had eaten that morning were items from the orange food group; goldfish crackers, cheddar cheese chunks, (no pun intended) orange juice, cheetos, orange crayons…the usual. So when on mile 357 of 853 he’d projectile vomited from the backseat of the van like something out of the Poltergeist, and since there was no Priest handy to perform an exorcism (he having willingly jumped from the car at mile 103 of 853) I got the brunt of the vomit force (which is similar to the Star Wars force, minus the light sabers).  In case you were confused on the timeline, the vomiting happened before Logan had gotten loose from his car seat and tried to open the van door while we hurled along the freeway at 69 mph, but after Alex had -in a fit of rage- thrown his hamburger patty at the windshield because it had pickles on it, then cried out in frustration and threw his drink cup too because he was mad he didn’t have anything to eat.

Is that a full glass of aspertame filled Diet Dr. Pepper at 6:40 am for no special reason???
 Oh Spencer...you are a boy after my own heart! October 2013

 

In Costco, (the closest building to the freeway exit) I cursed the day I ever thought taking a road trip alone with three boys ages 2-5 would be a good idea. Keeping my boys in the cart while I raced towards the bathroom was like trying to keep water in a colander, they all but poured from the metal squares like shape shifters. They wanted to sit on the riding lawn mowers I said “NO!!!” They wanted me to buy them ice cream, I said, “NO!!” They wanted a stuffed dog the size of their father; I said “NO!” They wanted spaghetti samples I said, “FINE” and handed them little plastic cups of pasta, then Alex threw his spaghetti sample at Spencer and Spencer threw his back at Alex and I said, “ENOUGH!!” Which made everybody (including their mother) start to cry as we made our way into the bathroom. Starring at my haggard, orange dye #40 stained form in the Costco bathroom mirror, I wondered who this woman looking back at me was, certainly no one I recognized. Spencer climbed out of the cart and slid under a bathroom stall, I didn’t even try to stop him, I wordlessly grabbed wads and wads of paper towels and wetting them started rubbing at my shirt, my hair, the side of my neck while Logan continued to cry. “Cheer up little boy” I said over-cheerfully (and by over cheerfully I mean maniacally), “We only have 488 miles left to go!” Then I may have burst into tears. Again.

Mother's Day Ego waffels from a bear cub? Yes please! May 2013

Amidst my crying and Alex’s ranting about how hungry he still was, a bathroom stall door opened and a sweet white haired lady emerged. She stepped over Spencer’s jerking legs, walking calmly to the sink and while turning on the water said, “You have the most beautiful children. They are exquisite!” I confess at that moment I may have looked at her like she was speaking Cantonese and I couldn’t quite process the words in my simple mind. Or certainly she must have been being sarcastic, but she spoke with a tender sincerity that split me apart. “You must be such a talented mother to be able to raise such fine sons” (And cue stage left; Logan climbing into the sink and stepping directly into her stream of water). “Would you mind” she continued, patting Logan on the head, “if I gave them each a dollar to buy a treat?” She opened her purse and continued to talk to me in low soothing tones, like one would talk to a skittish animal, or a person standing on a ledge, “Energetic boys take so much work. I had energetic boys when I was your age.” She pulled some dum dums, from her purse and asked, “I just got these from the bank…could I give them to your beautiful boys?”  Upon spying the candy, Spencer scrambled from the germ infested floor and climbed back in the cart she was pointing to. Logan (now soaking wet) climbed back into the cart and sat down too. “You are doing a fantastic job. Don’t you think mommy is doing a good job boys?” She asked.  The boys, who were busily unwrapping their suckers, paused, looked up at her with wide, unblinking eyes and nodded silently.”  She finished drying her hands, handed me the three dollars and said, “Don’t give up. This is the most important thing you will ever do, and you’re doing it.”

Logan eyeballing a "succulent chocolate -no sprinkles mom-" donut. October 2013

Her words, balm to my soul, stayed with me the rest of the day, and even still I can close my eyes and remember the way I was buoyed up, re-inflated, soothed by a papery skin pat on the back; a catalyst of kindness that enabled me to move forward. But I think even more than I needed her soothing words on that long ago day in Costco (and I did) I needed the lesson of how to respond to others in their moment’s of crisis even more. To contrast the reaction of the Costco grandma, I offer the reaction of another mother, during another moment of crisis (lets be honest I am in a state of constant crisis. I have a lot of examples to draw from).  Fast forward six years into the future to a Sunday afternoon in church; it was Mother’s Day in fact. Nothing dramatic about the setting and honestly not even a crisis moment, we were just sitting in a pew -and by sitting I mean flopping spinelessly, my boys flung like boneless chicken cutlets against me- like any Sunday. Alex, A.K.A. Captain Autism, continued to find the semantics of church -the crush of people, crying babies, the prodding to sit up, be reverent, be still, whisper- to be overwhelming. He has a hard time adjusting the volume of his voice (meaning he doesn’t) and was upset and was expressing his frustration to Russ, who consequently had taken him out of the chapel.  I was sitting with Spencer and Logan slumped against either side of me. Logan, also autistic, spilled out even further onto the bench, crying, “I don’t know if you’ve noticed mother, but I am dying of starvation here. Unless you want to carry a corpse out of the church will you please find it in your heart to give me some morsel of nourishment?” I was smiling at Logan, about to tassel his blond hair, tell him I was proud of the way he had made it through the first two hours of church without incident, tell him I had a string cheese in my purse, and a Hershey kiss in my pocket and could he just try to be quite a few minutes longer? I was thinking what a great Sunday it was turning out to be when I overheard the clucking of the woman behind me. She was hissing into her husband’s ear “What kind of mother lets her children behave this way in the House of the Lord? Hasn’t she taught them anything? She is ruining them! I would be ashamed if I was her!”

Sam Ellis about the same age as Spencer when Spencer had his Aha moment.... Love this boy! June 2010

 

There’s a line from the Apocraypha that reads, “The stroke of the whip maketh marks in the flesh; but the stroke of the tongue breaketh the bones.” And in that moment my bones felt ground into a fine powder like an aphrodisiac you would find at a Chinese herb shop –ground bone of guilt bound failure mother- it’s very potent and in large supply. In this scenario I remember feeling like all the air was let out of me. All the fight. All resolve to do better, to try harder, to keep moving forward. I remember gathering up the scattered books, the paper and pens, the boneless boys and leaving church before I could get my Mother’s Day flower.
It has been said the greatest need of the human soul is the need for kindness, and with Mother’s Day, now come and gone, I was thinking about kindness, and the way we treat our fellow mothers and the way we treat ourselves.

I love Grace's face in this pose... been there Grace (WHAT?!! THE DONUTS ARE ALL GONE!!) June 2010

Russ used to come home from football practice and he would tell me about lining up against opposing players, he would paint a dismal picture declaring, “The guy across from me had me by fifty pound and three inches at least! I mean he was a monster!”  “Were you scared?” I would wonder. “Nah,” Russ would answer like a typical man, “I knew I could take him.” Men think differently then woman, they compare strengths to strengths.  If a woman was to line up toe to toe against another woman they would immediately compare their perceived weakness against another woman’s strengths and feel at once defeated; “Oh my gosh. Look at her arms. Does she go to the gym every day? Her teeth are so white! She must not drink Diet Dr. Pepper like its water? Her skin has such a healthy glow…I guess she doesn’t have aspartame poisoning (curse you delicious Diet Dr. Pepper!!) Is she wearing heels on the grass? I would break my ankle…” And sometimes I confess, the person I am most critical of, the person who gives me the most angst, the most guilt, the greatest pause for regret, remorse, sadness (shall I continue?)  is when I line up against my reflection in the mirror. What the visitor behind me in church didn’t know is that there wasn’t anything she could think of or say that I hadn’t already thought of or said to myself.  
But here’s the deal, this destructive pattern of thinking -especially when extended to the lives of others- is never productive, it never ends well and is not a club I want a membership in. To coin a phrase from Oprah, here is what I know for sure: We are all on the same team so there’s no need to line up against each other. Everyone has moments when they are drowning in puddles of red sauce (which is especially hard to get out of white jerseys) even (gasp!) those people perceived as being flawless and leading perfect pinterist worthy lives.  The truth is, you never know what’s going on in someone else’s life, and you never will know unless you ask. I believe the only way we will make it through this life with any degree of joy is if we drop our stones so our hands can be free to lift up those hands that hang down.

Like Spencer, I was shocked to learn the contents of my can of motherhood were not the contents I was anticipating (and in truth NOBODYS ever is). But this life jammed packed and vacuum sealed with noodles (when all that I ever wanted was donuts) has taught me that when all else fails, love never does. Love makes everything taste like it’s covered in glaze. Even Spaghettios.






MMMMMMMMMMMMMMMMMMMMMMM Nothing says LOVE like SUGAR! Feburary 2012

 

 

Throwback Tuesday via Diplomatic Immunity

Madison and McKenzie Archibald, (our two beloved cousins) Alex, Logan and Spencer hanging at the park. Utah 2004

Throw back Tuesday??? Well, when you have a son…nay TWO sons with autism, they give you a card (similar to a diplomatic immunity card) that allows you to say, “I’m doing throw back Tuesday INSTEAD of throwback Thursday" because today was a hard day and Alex may have slammed a few doors at Costco (which is impressive since there aren’t any doors to speak of at Costco) and yelled at the shocked bystanders to “Stop looking at him like he was a circus freak!!!!”  (and even in my shame I wanted to soften the blow by saying, “The proper term in performer!! He’s an artist for heaven sakes! Give him some breathing room! No autographs please. Sir! Control yourself!”)  So, I’m using the card today, using it because I stumbled onto this piece of writing last night (in between circus act rehearsals) and I tripped across the words; I wrote it when Alex was ten and was shocked to realize we were equal parts pre-autism diagnosis and post. Now, we are almost 2/3 post diagnosis to 1/3 pre (and still, somehow, breathing…from a fetal ball of course but the air is moist down here…it’s like being in Florida). We are still circus freaks (except I never get to wear a sweet tutu or fly on the trapeze) but my lion taming act is NOT to be missed!!

Alex is EXCITED for his last day of kindergarten, that smile is even genuine! Yuma, Arizona 2004

 

2009

It's amazing to me how seamlessly your life becomes your life. How one day it will seem absolutely ordinary to have a son with autism, and how because of that one, tiny fissure, your life has shifted, platonic plates realigned and the way you are; the way you do things, is irrevocably changed. For instance, when I go shopping for clothes for Alex, I don't buy striped shirts because he finds them visually over stimulating. That's right, I just pass right by them at the GAP even though they are 60%off, because I know they will just sit in the bottom of his drawer until I try to bribe him to wear one for the Fourth of July and I even think I've got him going along with it (red and white stripes to match his brothers?!! Wahoo!) until he shows up in the van without a shirt on. So, now, almost without sighing, I just walk right past and go to the solid Polo's instead, the ones that are 30% off, but when I feel the texture, I know I need to move on to the soft cotton T-shirts, which aren't on sale at all.

Alex, Logan and Spencer at the Dolphin Habitat in Las Vegas, 2004

 

How seamlessly I seem to go about my day now. How effortlessly I soothe him in the morning. I've learned not to get him riled up in conversation over some important issue, like whether a killer whale's dorsal fin always goes limp in captivity and I'm quick to redirect his brothers when they start discussing a risky topic, like the hours the Grand Canyon is opened, because I know if he's in a bad mood at home, it will follow him all through the day, because who wouldn't be in a bad mood if someone said the Grand Canyon was open from 9:00 to 5:00 and you knew it was 8:00 to 6:00, that is enough to throw anyone into a tizzy! And see, the thing with Alex and autism is the anger, the frustration, the anxiety seems to follow him like a dark shadow and by noon the phone will be ringing, and of course it will be the psychologist from school saying Alex is having a rough time. And I'll entertain the idea again of having a secret code, a sign of some sort to flash to the teacher in the morning so she'll know his mental status, thumbs up is too easy, it has to be more intricate (shoulder shoulder, nose ear?) but how can a quick sign convey the wealth of information you need to help others understand your boy? How can you let them know about every trigger he possesses, every possible land mine with hand gestures? No, that will never work. It's best if I just keep him calm. So I've altered the way I do things in the morning, I give him cereal in the lazy boy chair, (even though I swore I never would) I don't turn on the overhead light when I wake him up, because it's too bright and makes him squint. I lay his clothes next to him, let him ride shotgun, never make him wear a striped shirt or black shoes, or make him put his back pack on before he is standing in front of the school.

 

Alex at Chuck E. Cheese (nice shoes on the table) which is the only "park" where the slides
don't burn you in the hot Arizona heat. Summer 2004

Today, five years into autism, it would never even enter my mind to make him sit on a different stool for dinner. And I always remember to warn him at least twenty minutes before bedtime, only, of course, I say it's ten minutes (no matter how long it actually is)  because that's how old he is, and he knows his number of minutes correlates to the number of years he is. (This was all his idea)  He'll be eleven in March. I know when it's time to sleep he'll wrap his Star Wars blanket around himself like a cocoon, like he is waiting for transformation, waiting to emerge. He'll sleep two nights in a row with his pillowcases turned to the Darth Vader side, then two nights with Yoda. He likes his fan turned on high, even in the winter; he needs the white noise, it helps him forget the colors. And before he goes upstairs to continue his metamorphism, I make him hug me good night, even though it's awkward, and I say, “I love you” and I mean it. Then I say, “Now you say, 'I love you too'” and he does, rushing through the words in one tone.

 And somehow, this everyday living, with things being spun around my son carefully; to avoid ever touching him, has become second nature. I'm careful in my weaving, because confrontation is difficult for Alex, because change in routine is difficult, because fire alarms are difficult, because using a different swing at recess is difficult, because webs are sticky and intricate and spinning seems to become all I know. It's easier, you see, to create distracting designs around the issues, then it is to catch him in the web, to threaten him with punchers, and I think about how patient Charlotte was, and how it took all her strength to work, “Humble” into the design, and save Wilbur's life. You see, in being seamless, you learn to avoid things that might be overwhelming. You make sure, day after day that you give him down time and a moment to process. You make sure you are explaining things clearly, that you are keeping his routine in check. In the end, all these things just become a sum of the whole. A sum of what you have become: Just another part of the equation when you learned it wasn't just ADHD, anxiety or OCD. It was something more, something that took it all in, something like a black hole, something that swallowed the galaxy.

 

Alex and his best buddy Michael, Yuma, Arizona June 2004

Most the time, I almost forget other families aren't like this. I only remember in random moments, like when my friend comes by with her two kid's my boy's age, and they are going to a party, and I realize I've forgot what it was like to go to a party with my son, because for years now he hasn't been invited, and even when he was, I had to hover over him like a moth, with frantic wings flapping so hard the papery edges grew tattered, hover just to make sure he didn't push someone, or yell at the birthday boy, or try to open his presents and blow out the candles before the five year old whose name was on the cake even had time to make a wish. “He's jealous,” I'd tell the birthday boy’s mother, “he's jealous because he wishes he was him.”

 In truth, I don't know how everything became so ordinary, because when all of this started, I thought my life could never be ordinary again. I knew I would be trying to reinvent the wheel every time the sun rose. I thought my family would always be stuck. But time somehow greases the wheels; it moves the gummed up gears, has helped me realize I am wound a little tight,  hyper in my efforts to prevent disaster. My husband likes to say, “Joanie, let the boy be a boy” when we go places like the park or a museum and I am fidgeting, anxious, afraid to stand back and watch. The truth is, I'm afraid if I let go of control a little, I might just lose my grip.

 

Alex hanging with the polar bears at his BELOVED Sea World San Diego. July 2004
 

We've almost known Alex's has autism for as long as we didn't know he had it. We are almost split apart like two halves. Pre-autism and post. And, while it's hazy, I can still remember all those days of wondering what was wrong, of second guessing myself, of thinking the nursery teacher at church just didn't get Alex, of course he wouldn't look at her, he didn't even know her, he was just that smart. And the new teacher at preschool when she'd pulled me aside and said Alex didn't know his shapes, rendered me incensed, I knew he knew every shape, right down to the rhombus. He'd pointed them out one by one without mistake in the Sesame Street book. Who was this lady anyway?

 I thought maybe he was just distracted, like my brothers were. My pediatrician said he had ADHD. I thought we'd figured it out. But then, later, halfway through his first year in school, the kindergarten teacher became cautious when she approached me to talk. She was worried because we were friends, because I volunteered in her classroom, and made gingerbread houses for all eighteen of the kids. She was soothing in her tone; talked to me like I was a frightened animal. “I asked someone to observe Alex. I don't think he has ADHD, I don't know if its autism because he can talk, but I think something is wrong.” I went home and cried. Then took him to another therapist. She thought he had obsessive compulsive disorder and an anxiety disorder. I liked that better than autism. OCD was workable. I spent lots of time reassuring him. I read books and articles. I told my friends at playgroup he was fine, just a little anxious and rigid because he worried and I pushed away the fact that he didn't seem to play with the other kids, just near them, with the excuse that I'd taken child development and knew all about parallel play, and all the kid's did that at this age, right?

 

The boys at the dolphin observation site...Nevada 2004 (looks like a giant TV screen)

When I think of his life like two halves, I think of an orange cut in two, and how different it looks with the juice glistening from the split open cells. How, if left exposed, it grows dry; old before it's time and seems to to curve into itself, the peel trying to grow around the flesh again Then I think about how I like to peel an orange, pull it apart in segments, the pieces protected by the yellow skin so they stay softer longer; broken apart gently, slice by slice. But we, we are two halves, and even though my life before autism is much longer than Alex's, somehow, the halves seem equal, we are both split open, both exposed to the elements, both sucking in air.

But this is how it is. And most days, I guess, you just go about it, and it doesn't seem like such a big deal, it's only when I slow down and talk to him that I remember this was not the life I thought we'd have. Especially when he says something like, “The recess monitor says I can’t play with the balls anymore.” And of course I say, “Why not?”  and he says, “Because I always kick the balls, but nobody kicks them back” and I picture Alex like he's a soccer player kicking ball after ball into the empty field, hoping one will reach the goal.

 

Hangin by the flamingos...wait! is that a (gasp) striped shirt? Alex and Spencer San Diego 2004

Seamlessly means you don't feel the ridges. Seamlessly means everything merges together, like water mixing; one wave merging into another. Seamless means you can't tell where something begins and something’s ends, it just keeps going on forever without peaks to give it texture. And so, I guess, that's how it is, endless. But I confess even while I am trying to convince you that life is just as ordinary as ever, I am not truthful, because in our merging there are still seams; points of connection, unvarnished ridges, something to trip on.

 Yes, I know how it is, we've been doing this for while, so when I stumble a bit, I just think, “Stand up Joanie, try again. It's just like riding a bike. See how easy it is to brush the gravel off your knees? Climb back on, pedal, one foot chasing the other.”  And I guess as time goes on, as the time since diagnoses stretches to tower over the time before diagnosis, things will continue to get even more seamless and maybe with time, I won’t feel the rough edges, the gaps, the drops. Maybe, we will just become. I have hope that I won't wish for the before and despise the after. I have hope that autism will not bully us. I have hope we will live our lives the way we want to live our lives, that we will have a choice.

 


"CHEEEEEESE" "Okay! I said CHEEESE!" "Are you DONE?" "This shirt is itchy!" Alex at the petting zoo, Utah 2004

In truth I know we are making progress towards that goal. Already, at night when it's time for bed, Alex knows after I say I love him, what he has to do next: he wraps his arms around me, squeezes (because that’s the proper way to give a hug) and says without prompting, “I love you too.”

 

What I learned from Yoda

One Sunday afternoon I came out to find Logan had taken Boo for a walk in his Darth Vader mask,
and breathing heavy through the voice changing mask he said, "BOO!!! I am your father...." Jackson 2010
 

Last year, at the start of 2013, Logan said to me, “So I think I finally understand why they call it –you know- (he does parentheses in the air) “News Years Revolution” because you are at war with yourself; you feel this pressure to start the new year off with a bang and all that, you know, eat right, not fight with your brothers, feed the dog every day, but of course all you really want to do is watch Monster Quest on the ipad…so the part of you that is saying, “Do you want your dog to die of starvation? Come on! Step it up brother!” is at war with the part of you that is like, “Didn’t I spill some cereal on the floor this morning, and couldn’t he just eat that? New Year’s revolutions are so conflicting, aren’t they mom?”

Alex as an army dude, Spencer a Jedi knight (I believe Aniken Skywalker) and Loggy bear...his favorite Bat-a-man. 2009

It doesn’t surprise me that war was the metaphor Logan chose to illustrate his angst. It does not surprise me because I live in a world dominated by men (I don’t mean to brag…) and because it is a world dominated by men we currently own 33 nerf guns (Spencer has a collection) 11 light sabers (down from the 42 I’ve purchased) 8 air soft guns (thanks Russ…..) two small machetes, (something for the boys to cut their teeth on; a training machete of sorts, like a sippy cup only instead of a rubber valve, there’s a blade) a samurai sword, and one LARGE machete from Guatemala (thank you Shawn Tidwell).  Additionally, having three sons and four brothers means I have never watched an episode of “My Little Pony,” but can still sing the “Thundercats” theme song verbatim. The only girl show I indulged in, “Anne of Green Gables” my brother’s used to refer to as, “Anne of Green Gay Balls” “Mom!!!! Will you tell Joanie to turn off her stupid “GAY BALLS” because the game is on and the guys wanna watch it!!!” Because I live in a world of boys I have had to replace not one but three ceiling fans (if you are missing the connection here you obviously live in a magical land of talking ponies and fairy dust, a world I sometimes drool over) two light saber incidents, and one Spencer-tying-himself-to-the-ceiling-fan-with-his-belt-so-he-could-fly-like-buzz-lightyear-incident. Yes, I have watched Star Wars in it’s entirety 898 times (often with a young Jedi warrior snuggle up against me…sigh…) therefore I know intimately the scene where Luke is trying to get his X-wing unstuck from the Dagobah swamp as Yoda looks on. Luke tries to use his mad jedi mind skills to raise the stuck vessel, but frustrated at his lack of progress, he gives up. Yoda, ever the wise teacher admonishes him, saying,

“Always with you it cannot be done. Hear you nothing that I say? You must unlearn what you have learned”

“All right I will give it a try” Luke says half heartedly.

“No! Try not! Do or do not, there is no try.”

The Internet is filled with motivational speakers on the subject of “Trying and Doing’ Michael Hyatt says we should:

 

Spencer after playing the entire football game in pounding freezing rain said,
"My fingers are frozen, I can't bend them enough to catch the ball." Jackson 2010

“Eliminate the word try from your vocabulary. It is a worthless word that accomplishes nothing. It only makes you feel better when you fail. Decide either to do or not to do. If you don’t want to do something fine. Don’t do it. But don’t pretend that trying is the same as doing. They are two completely different postures. Commit 100 percent to the outcome you want like the project manager in Apollo 13 said “Failure is not an option” play full out. Go for the win. Don’t settle for merely trying.”

Or another favorite from the play ground of life, “Winners do, while losers try.”

I’ve got to be honest, I struggle with this concept; that the word “try” should be eliminated from our vocabulary. I struggle because unlike my boys with their black and white thinking (or maybe because of my boys and their black and white thinking) I see life tinted in hues of color. I see the world in smoky possibilities, hazy with wafting layers of gray; a 1950’s television sunrise. I don’t see life linearly, measured in absolutes, I see the soft pink of yearning for more, the blue of try again, and the hot lemon yellow of so close. To me life sliced by a mandolin, diced into bite size chunks of achievement or failure, just splits apart the cake before all the ingredients are added, the cake baked, and the frosting spread. If you only took a bite of flour, baking soda and cocoa, you would choke on the pasty concoction and deem it unfit for consumption. Similarly, achievement most be taken horizontally, big picture, as a whole. Michael Hyatt, would say, “You make the basket or you don’t: black or white.” But what did Michael Jordan say? “I’ve missed more than 9000 shots in my career. I’ve lost almost 300 games. 26 times I’ve been trusted to take the game winning shot and missed. I’ve failed over and over and over again in my life. And that is why I succeed.”  

Logan at the Special Olympics, rocking it like a rock star! 5 gold metals! January 2010

Try is a verb. It shows action. Trying to me, is a gap filler, it’s the link that bridges the chasm of space between the desire to do something and the actual fulfillment of that goal.  Now, to be clear, I’m not talking about when you are hit up to sale Amway, and you tell your enthusiastic friend, “I will try to look at the pamphlet” knowing full well you’re going to throw it out in the first trash can you see. Or, saying to yourself between bites, “I will try not to eat the entire chocolate cake,” on day 26 of your cycle,  your nose growing like Pinocchio even while you voice the thought, because you know you aren’t going to try… you fully plan on pressing the last precious crumbs to the bottom of your fork, and licking the frosting off the corners of the pan.

I’m talking about the times when you make sincere and intense effort. When you take Tony Robbins message to heart, when you channel Yoda, when you paint yourself in camo and tatoo “be all you can be” on your soul and fail anyway; the khaki smudges wiped off in wide swaths on the Kleenexes crumpled wet with your tears.



So clean and neat before the game...Spencer...I may swoon! Jackson 2010

Life is filled with unfulfilled dreams, broken promises and disappointments. For me parenting, especially parenting autistic children, is filled with moment after moment of “playing full out” only to look at the score board and realize I haven’t even made it to the first down and that the game was called a long time ago. In a world of quantitative feedback, in a world of A + B = C, parenting a child where I know A + B = X (and can’t remember enough 8^th grade algebra to even come up with a good enough mathematical equation to find X) means I am a LOUSY jedi master. I’m not even a padawon. There is no midi-chlorain in my blood. I can say all that I want that there is no try,  announce, “Ok Alex, we are going to sit through this fire alarm and conquer this fear!” I can put on my game face, wrap my wrists in white tape, heavily grease the undersides of my eyes, I can be ready to play but despite my desire for achievement; the red hot thirst to do, the only thing that will happen is do not. I can say each morning, “You will tie your shoes by yourself today. We are doing this.” But I know his fine motor skills are as rusty as the tin man stuck in a garden of self imposed paralysis when Dorothy first finds him in Oz.

Do or Do not! There is no try.

The first "Golden" metal awarded to Loggy Bear! Jackson 2010

 

To me, the danger with this thinking pattern (and believe me, I know) is that defeat has a way of tripping you up. It has a way of whispering, ‘Why are you putting on your jersey? Don’t you know the odds are 5,000,000 to one against you winning? Don’t you know the other players don’t want you on their team? Not to mention you washed your football pants with a red sock and now they are pink, the color of shame?” Being at war with yourself, as Logan put it, is the predictable fall out when the “Do not” outcome is (ding ding ding!!!) a consistent winner.  It is my New Years revolution to be kinder to myself for the times that despite my best efforts to do, I do not. I have resolved to wave a white flag more often, to surrender to defeat, to recognize there are some things I cannot change; and be okay anyway. I am hoping to make peace with the part of me that yearns to obliterate obstacles, that wants to tackle life and hold it thrashing until it cries uncle, but to accept patience instead, to learn to breath out; to recognize some things are worth waiting for, to understand the spirit endures.

Loggy Bear accepting the gold! He said, "the podium is a little wobbly, and how do you think
they would they feel if their gold medalist athlete broke his foot when he fell?"

 To me, trying when all you want to do is quit is the bravest thing there is. When I watch Alex awkwardly fumble with his laces, loop the rabbit ears with arthritic effort, bend those rigid fingers and try to push the noodles laces through the noose; and fail to execute the task, time and time again. When I watch him instead tuck the strings into the sides of his shoes so he doesn’t have to ask an adult for help; a coping mechanism he developed all on his own to keep him from tripping. When I watch him go out the door to face another day of do not anyway, I want to cheer, I want to pound my feet on the bleachers, I want to stand up and start the wave, I want to feel the vibration of the stadium echo in my soul, and remember how it feels to see someone both accept and ignore defeat; to leave it whimpering in the corner.

To me trying is equated with faith, it’s intertwined with hope, it’s recognizing that excellence must be pursued, must not be given up on. Faith is what propelled Peter out of the boat, to stand on the broken waves, unscathed, while fear, faiths evil twin, is what pushed Peter down, left him sputtering and crying out, “Lord save me.”

Alex waiting in line for the ski lift with his instructor, Jackson 2009

Being at war with yourself, as Logan put it, (indulging in fear, is how I would put it) is the worst thing you can do. I prefer to think battles are won incrementally. The great coach Vince Lombardi said, “Truth is knowing your character is shaped by your everyday choices.” And “Winning is not everything, but making the effort to win is.”  I’ve learned the good you do persists and carries on, is heard in the echos. I know effort is seen, remembered and recovered. Incremental progress is still progress and all setbacks (despite everything and everyone who tells you otherwise) are temporary.

I equate trying with bravery. To me, trying (especially after you’ve experienced a carpet pull, especially after you’ve looked heartache in the eye and loved again anyway) means you are willing to expose your fragile heart, be vulnerable again, risk another carpet pull.

Some time ago, Alex was selected to compete in the Special Olympics. There was some discussion as to if he qualified because his IQ was so high. But then they saw his awkward attempts at balancing and decided to let him compete after all. I remember driving to his first race, the desire to speed because I was late was tempered with the need to be cautious since the roads were covered in a thick sheet of ice. Life felt heavy; the weight of duress clung like sluggish iron in my veins. Winter mornings of scrounging for missing gloves and haphazardly throwing wet boots into the dryer to predictably clunk like a metronome while I urged the boys to eat their cereal faster, had worn me out. Doctor appointments, IEP meetings, redirection, occupational therapy, speech therapy, juggling work schedules, car repairs, the to do list seemed like the never done list and ran at a break neck speed through my brain while I carefully navigated my way to Pinedale.

Alex on the way up the mountain Jackson Hole Ski Resort, February 2009

I had never been to a Special Olympics before, and I confess, a part of me was processing what exactly it felt like to have a child in the Special Olympics. I trudged through the snow, wishing I’d brought better boots, wishing I’d worn my snow pants, wishing I was ever prepared for the elements. The first event I came upon, was for beginning skiers. Parents and volunteers lined up to form a human barricade on either side of the ten yard, leveled run. Slowly, hesitantly, I watched the first skier slide into place. The coach pushed the stop watch, “Go!” He shouted. I couldn’t tell if she even moved. Awkwardly, after a few moments of looking around, she pushed one ski forward, then teetered and fell down, snow caught in the crevice of her neck. Someone helped her stand back up, steadied her, then she pushed the other foot forward, and fell down again. She got up, wiped the snow from her cheek, and pushed the other foot forward, and so it went, an agonizing pattern, her moving one foot, falling down, getting up, moving the other foot… the whole time she worked, fell to her knees, shook the powder from her goggles, tried to regain balance, refocused on the finish line… the stop watch kept ticking, the spectators cheered wildly, until finally, finally! With a smile that split me wide open, she crossed the finish line and I burst into tears. I cried and not the sweet, dab at the sides of your eyes cry, I bawled. I swiped at my face with the back of my sleeves, wiped my nose on my glove, and was still heaving with emotion when Alex gingerly approached from a ski run he’d just finished. “What’s the matter mom?’ He asked, “She didn’t give up.” I said, swiping at my eyes again. “Oh.” Alex responded, “Can you help me take my boots off? The buckles are kind of tricky.”

Alex at the clinic...toboggan ride down the mountain...torn MCL. Try again in 6 months.... 2009

 Yoda, you are our favorite Jedi master. We have more green light sabers than any other color, but…

Try, there is.

Jedi's like sugar cookies...duh! Spencer, Colter Elementary, October 2009