Children's Festival 2009

Some ladies in my support group invited me to join them at the park for a children's festival last weekend. The outing itself was a mixed bag in terms of success. I was in an unusually emotional state, and constantly having to corral my hyperactive child who seemed completely unable to follow instructions at times quickly took a toll on me. While I definitely enjoyed the company of my very understanding friends and the activities we managed to do with the help of the wonderful volunteers, I still burst into a big, ugly cry when I got home. Maybe it was because it was such a big deal to do something like this on my own. Maybe I was simply overheated, sweaty, and tired. Perhaps feeling everything for once in front of God and everyone was just a really intense experience. I was frightened because I could just barely physically handle my child and keep my frustration in check. I had just enough strength to get through it, but in the end, I just had nothing left.

What took me by surprise was that being on an outing in the presence of these particular mothers seemed to substantially thin the layer of numbness I normally protect myself with, so my defenses weren't as effective as they usually are. At times it was like having open heart surgery without the benefit of an anesthetic. While it was wonderful to feel the ups and downs of being out, the thought of feeling so vulnerable frightened me as our little group made our way from booth to booth. One of my new friends seemed to read my mind and reminded me to tell her if there was anything I needed as we made our way through the celebration. Erik and I were invited to share some crepes the size of Nebraska with my other friend. Her daughter, who is largely nonverbal, looked into her eyes and very clearly expressed her feelings about Erik, followed by one of her brightest smiles. And the feeling was obviously mutual. Erik looked thrilled and laughed that hearty, open-mouthed laugh of his. Pure joy. Being in the presence of two very lovely ladies is a dream come true for my son.

Erik discovered that many of the booths were trailers, which meant they had wheels affixed to them. The couple working inside the snowcone booth stared as Erik caressed their tires for an extended period of time while I stood nearby and very unsuccessfully attempted to look casual. The silence was deafening, and I didn't really know what to say, so I cracked jokes about inspecting things to ensure that vehicle met safety standards. They laughed. After their initial skepticism about us seemed to wane, they allowed Erik to walk behind the thing where they were storing supplies to check out the back tires. I concluded that keeping Erik still and out of people's way was a completely lost cause. I shrugged, laughed, and made small talk with them until Erik began mumbling about lugnuts and moved on to the next booth with wheels. By now, we were looking more than a little strange. Mr. Snowcone stepped out of his cart during a lull in business and stood next to me, watching Erik press his lips to each wheel. He asked me with complete sincerity how long it took us to cross a parking lot.

From there, I laughed myself sick when we crammed ourselves on a rickshaw-type bicycle contraption for a ride around the park. One of my friends volunteered to run along the side of the thing and snap photos, and my face soon ached from smiling. She sprinted after us, waving and cheering, fueled by her wonderful enthusiasm, which was enhanced by the consumption of a little cotton candy. We eventually gained speed and left her behind, but she popped out from behind a tree like a paparazzo on our way back towards the festival.

Erik began to exhibit signs of an impending meltdown soon after our ride, as he was oversaturated with stimulation, and I carried him a short distance out of the crowd as he began throwing a fit. He quickly shook his head from side to side and began to cry. My arms were full of promotional items and prizes, including a rather large stuffed rabbit, but I made it back to the Jeep without losing much. Erik was furious at me but calmed down during our ride home and admitted he had a great time.

In the end, being included in something like this is pretty awesome. Feeling unsure about yourself as a parent and being scrutinized by the outside world, not knowing how to react to the queries of strangers, is so much more bearable when friends who know what you are going through are at your side. I suppose that holds true no matter who your kid is or how many genes he happens to have.

Saltwater

Most of the trips we take these days are definitely not a result of our spontaneous desire to get in the car and go. We would probably never leave the house if we didn't receive invitations from our friends and family members to travel with them. I am coming to realize how important it is to say yes to these opportunities, even though we don't know how Erik will eat/sleep/cope with a change in scenery. What parent knows for sure how their kid will react to something new, anyway?

Friday we headed to the beach to meet my friend and her family. On the way, we stopped at Brian's parents' house for a quick visit. We had a beautiful lunch by their manmade waterfall and pond. Erik was encouraged to feed the koi, some of which have grown to the size of salmon in their roomy habitat. Their white, gold, and orange scales glistened in the sun but failed to really capture Erik's attention. Instead, he wanted to kick at the neat layer of pea gravel or run unfettered under the trees. Brian and I traded off the sweaty duty of chasing after him to prevent him from tripping and falling head first into the pond with the fish or destroying flowerbeds. Erik did stop moving long enough to devour an alarming amount of fruit and homemade muffins.

After lunch we said goodbye and drove across one more mountain range to the coast. We wouldn't see the sun for the rest of the weekend, but the air was fairly warm and pleasant. We located the beach house my friend had rented in a housing development striped with wide, soft drifts of sand. Rows of ranch-style houses surrounded by more sand and beach grass lined the streets, most of which were empty and/or for sale, but a few families milled about in driveways around vehicles bulging with suitcases and beach accessories.

Our two-bedroom, two-bath house was relatively new and full of soft light with an open kitchen. The guys set up two small barbecues in front of the open garage door, and oysters and slabs of steak were grilled for dinner. Shaena and I baked chicken breasts in the oven and fed the kids hot dogs and pasta. By the end of the day, Erik had briefly cried himself to sleep in his bunk in our room, and his friend Samantha had retired to her toddler mattress on the floor of her parents' room. We all poured ourselves cocktails and relaxed. The guys retired to the family room in front of the television/stereo, and Shaena and I found ourselves in chairs on the front deck underneath a relatively rare coastal lightning storm playing across the sky. We talked and drank until we were exhausted and could no longer keep our eyes open.

We tackled touring the aquarium up the highway the next morning. Erik seemed only slightly interested in the exhibits. He did enjoy the creatures that were available to touch. The place was crowded with strollers and noisy children, however, and it was soon apparent he was completely overstimulated, a phenomenon I assumed was history at his age. Brian finally resorted to carrying all 38 pounds of boy on his shoulders, something we do when Erik refuses to walk any further and begins completely melting down. We hastily found the exhibits we wanted to see, briefly separating from our friends and texting each other our locations, finally meeting up in large, plastic tubes surrounded by saltwater and marine life, including sharks. By now, Brian and I were both on edge, as Erik was in a full, defiant meltdown. He whined and whimpered. He refused to walk on his own. His limbs flailed spasmodically. He yanked on our arms and refused to hold our hands.

Against my better judgment, we drove on to lunch on the waterfront. Tourists crammed themselves in shops full of gifts and candy. One of the oldest, most popular restaurants we love had a long line snaking along the front. We decided to attempt waiting for a seat, which would take approximately 20 minutes. We stood on the sidewalk in front of the tiny restaurant with strangers for nearly half an hour. Erik found one woman with spiky, bright blond hair and an easy smile unusually irresistible, and she allowed him to hold her hand. Finally, we were led into the tiny, bustling dining room and seated at a long table in the middle of the crowd. I ordered a bay shrimp sandwich with an ice-cold beer for myself and a grilled cheese with apple juice for Erik. He devoured nearly the entire sandwich with gusto. We ended up having a really nice lunch before heading back to the house. As Erik had reached his limit long before lunch, we decided the brewery we thought about visiting was a no-go.

Erik's friend Sammy invited him to watch videos with her from time to time on the leather couch in the family room of our beach house. He really took a liking to the Pixar feature called Cars. He did very well inside the house or playing with sand on the deck without the extra stimulation of strangers and unexpected noise. He interacted with Sammy in new ways and was able to converse with her a little more than he had in the past. Brian took him to the beach, which apparently went well until it was time to go. When I met up with them on my way to the ocean after a trip to the grocery store, Erik was walking down the street with Brian. His toes were bleeding very characteristically from the beating of being exposed, and he was blubbering. He told me very dramatically that he loved me, and I had to giggle. His clothing and coat were soaked with seawater and covered in a thin layer of wet sand. Through his exhausted fit, I could tell he had loved every second of what he had just done. He had apparently splashed in the chilly water thigh deep and fallen at times, explaining his condition. He absolutely loved it. I spent a little time on the beach myself, feeling the sand erode under my soles as the waves rushed back into the ocean and felt my toes begin to lose feeling in the frigid water. I stood still, feeling the power of the ocean vibrate every cell in my body. I guess I had a little word or two with God while I was standing there, too.

Sunday we packed our things and vacated the house, which seemed to be hard for all of us to do. We drove to the valley and met at Wendy's for lunch, where Erik began the familiar signs of nuclear meltdown yet again when a family with noisy children seated themselves directly behind us. He put his head in my lap and covered his ears. His feet kicked. Finally, I asked him if he wanted to go for a walk. He said yes, and we amused ourselves in the parking lot next door in front of a Chinese restaurant, a Mexican bakery, and a dark barbershop. Erik walked atop the parking curbs, sometimes requiring my help to maintain his balance but becoming annoyed when I tried to help him. When everyone else exited the restaurant and it was time to go, he had another major malfunction. He stopped short of sitting down, but his legs became heavy and extra clumsy. He burst into tears. He yanked roughly on my hand when I tried to move him along. Losing my temper, I snapped at him with a raised, impatient voice. He cried even harder.

I got us both into the Jeep and felt my emotions seep through the exhaustion that comes with packing and traveling. Tears rolled down my face silently for a minute or two, and Brian patted my knee. I was tempted to give up and go home without our scheduled trip to the amusement park at this point, but we finally decided to press on.

Up the interstate we went.

I finally spotted the large sign in front of the familiar theme park, a place I have not been to since I was small. We parked in front of a castle wall and joined our friends. Erik seemed excited and held Sammy's hand. The guys paid our admission and tickets for the rides inside the park, our optimism bleeding through once again. My sense of humor spurred me on as I read the rules that were posted on a Medieval-looking sign at the start of the trail and added my own. No outside food or drink. No toplessness. No pooping in the moat. Shaena and I giggled ourselves silly.

We followed the trail into the darkness of the park under a gorgeous, green canopy of foliage. Brightly painted concrete buildings illustrated assorted fairy tales. I entered the ones that would accommodate my adult body, peeking through windows at ancient exhibits that sparked memories I thought were lost. The audio portions of many of the featured tales were garbled beyond recognition, even for my transcriptionist's ears, but the tales were easily recognizable. Erik reluctantly entered a large rabbit hole with his father, who was on all fours, and Shaena and I ran ahead, looking for the place where they would emerge.

By the time we had come to the portion of the park featuring rides, Erik was melting down yet again. He entered a wooden door labeled "saloon" in the Wild West section. Inside was a straight, dark hall, and the floor was soft and unstable, designed to make you feel like you were intoxicated. He ran back and forth, almost frantic. He began making the incessant engine noises he makes when he is in full freakout mode. Sammy was across the narrow street, patiently allowing a man who looked like Abe Lincoln to put period clothing over her own outfit for a photo opportunity. Brian wondered aloud if Erik would hold still long enough to do the same. We quickly came to the conclusion that he would not. Instead, we watched and let our kid run back and forth.

All six of us stood in line on wooden stairs for the little roller coaster in the trees, which would be Erik's first. It had been constructed in the late 1980s and was intended to look and feel as if its riders are in bobsleds. Shaena and I decided to ride together. We crammed ourselves in one capsule with Shaena sitting between my outstretched legs and me with my chin resting on her shoulder. An opaque plastic cover with large holes in it was snapped down over our heads. I couldn't help but think of Jim Carrey and Jeff Daniels on that moped in a scene from the movie Dumb and Dumber. She began discussing the sign she had happened to read about getting splashed with water on this ride and how interesting it was that I had chosen the seat in the back. I began giggling, wondering if I could possibly survive this experience without wetting my pants. The ride jerked to a start and we began screaming immediately, despite the fact our car had just begun to move. I was thankful Erik's car was in front, away from our gleeful hollering. We gained speed and rocketed through the forest for two and a half minutes, our screaming gaining new volume with every violent turn. When we all escaped at the end and made our way down another flight of wooden stairs, my knees were actually a little shaky. Brian reported that Erik emitted a "YEE HAW" or two but that he quieted down as the ride progressed. However, he protested and thew a fit as we walked away from the attraction. His defiance would only intensify. We came across a tiny Ferris wheel and debated on whether or not to trap Sammy in a cage with Erik on the thing. Brian wondered aloud regarding the worst thing that could happen, and we all laughed. Erik refused to ride, however, still upset about leaving the roller coaster and mumbling about the promise we had made about him seeing a train. We kept going until we saw the psychedelic-looking kiddie train, its lights merrily flashing in the rain. Erik agreed to ride with Sammy. Shaena and I took shelter from the weather by the bumper cars, where we could watch and snap photos. Erik and Sammy were seated in the first car shaped like the train's engine and patiently waited as other children found their way to their seats. Brian yelled over the fence to the kids to push the illuminated button in the dash, and when they did, various animal and train noises blared from speakers. Erik covered his ears but was interested. The ride finally began. Lights flashed, and the cars rocked gently as the train went a few times around an area decorated with giant toadstools and tiny village scenes.

When this was over, we gave our remaining tickets to our friends, and Brian carried a now hysterical Erik out of the park through the rain. I used Ye Olde Restroom on the way to the parking lot one more time and we found our Jeep. I was kicking myself for forgetting the cord to Erik's DVD player, a device we never seem to really need until the trip home. We listened to music for a while, but Erik finally snapped at me to turn it off. Erik never really falls asleep in the car, but he finally lost consciousness, surprising us, and the ride over the mountains was fairly pleasant. We feasted on coastal fudge and salt water taffy until I felt happy and more than a little sick.

In the end, the trip was enjoyable, but I wouldn't say we had time to completely relax. I was on edge a lot of the time. I told my friend that trying things with Erik is scary but always rewarding in some sense. Even a day afterwards the memory of the disastrous diaper blowout in the driveway and the tantrums are fading. After all, we will never know what will work and what won't if we don't make an attempt. Would I do it again? Of course.

There is, however, always a price to pay.

Life As We Know It

Today Erik accompanied me to the store. I shop without him during the school year, but now that preschool has concluded, he rode with me today. I forgot how much more interesting a public outing can be with one Mr. Erik Quinn.

When we arrived at the store's parking lot during lunch hour (I was already kicking myself), it was packed with impatient people trying to accomplish their errands in an hour or less. I took a deep breath and muttered to myself as I crammed Erik into the shopping cart. I threaded his rapidly expanding feet (now a size 10) through the holes designed for chubby baby appendages, and, miraculously, he settled down in the seat without upending the thing like a monster truck attacking a row of sedans. I exhaled a sigh of relief. Usually, if I run into anybody I know, Erik gets wide, scrutinous stares, as people perceive him as gigantic now, huge for his age. I suspect that at least half of this stems from the fact that he is crammed in shopping carts such as this and appears freakishly large, like an grotesquely swollen, middle-aged man dressed in an adult-sized diaper and sitting in a crib the size of a Buick at a carnival side show. The truth is, he is of average height on the typical growth chart. Also contributing to the effect is the fact he has inherited my long, clumsy legs, making him appear even taller. There is also not a lot of extra fat on my kid, despite the fact it seems he consumes his weight in peanut butter each and every day.

Erik is a big fan of the Sesame Street DVDs I purchased to keep him entertained while I work. He adores the characters I grew up knowing as a kid. His Mr. Hooper impression is dead on. As we rolled into the store today, he was channeling the deceased storekeeper, yelling, "David! David! I can't find my glasses! David! I can't see a thing without my glasses!" For a moment it seemed there was an irritated, elderly gentleman in my cart threatening to spurt phrases in Yiddish.

Like many children, Erik has yet to hone his skills of appropriately engaging strangers socially. However, his attempts seem different than those of most kids his age. While many children are shy, Erik shakes hands like a politician. He greets even the infantile ("Hello there, baby!") He smiles widely. And he sometimes shouts to get a passerby's attention. He has learned that his window of opportunity sometimes closes quickly as his shopping cart rolls by, so he shouts whatever comes to mind at that very moment to attract attention. This usually emerges in the form of engine sounds, "Yee haw!" or animal noises, especially the ones cats and dogs make. It makes for awkward moments sometimes, but I mostly flash a smile and move on, as I am used to this phenonmenon now. Four years ago, my formerly shy self would have been horrified.

Today was slightly different. He craned his neck to glimpse a couple of boys his age walking quietly beside their mother and yelled, "Hello girls!" The mother looked more than annoyed, and I kept rolling along, wincing slightly as we passed out of sight. From there, he transformed into a hot dog vendor, something he also likely picked up from Sesame Street, screaming, "Hot dogs! Get your hot dogs herrrrre! How 'bout a little saurkraut? Catsup?" The New York accent was perfect. It was as if I were listening to a recording of someone entirely different. He sounded like a 35-year-old man working a job in Yankee Stadium.

We spent an hour in the store filling our cart to the brim with groceries. Erik spotted things on the shelves of interest, like chocolate ("Oh, I looooooove chocolate!"), and giggling with delight at the photos of fluffy kittens on cans of cat food ("They're looking at me! I loooooooove little kittens!").

It was a real adventure, just as I had promised him.

After we had annoyed everyone behind us in the checkout line, as the man checking made a big, slow show of things especially for Erik's benefit, we headed home. To the west, the clouds formed gnarled, pearlescent columns lit by the sun that were so incredibly massive and bright you could hardly look at them. I asked Erik if he thought they were as beautiful as I did, and he said yes. To the east, the sky was as black as night. The clouds seemed to churn slowly, as if something was working behind them, and I told Erik the thunder would begin soon.

When we got home, I unpacked our things and made myself comfortable in the kitchen, my favorite place to be in the middle of the day. Erik devoured two waffles with strawberries and half of a peanut butter sandwich. The sky above our house began to emit deep rumbles, and I took a glass of wine, a candle, and Erik's toy semi truck out to the front porch. I stretched out on the chaise lounge while Erik rode his truck back and forth, laughing out loud he was so happy. A bolt of lightning snaked down from the sky over the desert, and Erik stopped in his tracks as the sound of thunder that followed seemed to spread behind the clouds above us. Slightly alarmed, he came to me quickly and put his hand on my knee. I put my palm over it and assured him that we were perfectly safe. I asked him if he thought the lightning was beautiful, and he said that it was. I heard the sound of hail pellets beginning to slam into the ground, and soon the yard was being peppered by dense balls of ice. I looked back at the open kitchen window and saw Gracie-Cat's round, furry face materialize, seeming to float behind the screen in the darkness. Her eyes were dilated to maximum diameter, infused with primitive fright. A thunder clap sounded, and she disappeared.

When the cold wind picked up and chilled the air, I collected our things and took Erik's hand to lead him back inside. He cried in protest, but I assured him we would do it all over again tomorrow.

Down

I'm feeling discouraged today. Parks and rec called today and informed me that the art class I wanted was full but that there was one available at the same time as Erik's vacation Bible school. I am on a waiting list for another class but do not expect to get in. If I do, I won't have the support of my fellow special needs mother, which scares me more than a little bit. I don't think I'm ready for braving our first tiny attempt at mainstreaming on my own. Yeah, it's just a stupid art class. But it's our first stupid art class with typical children outside the comfort of our special education bubble, and I know myself well enough to know how I will feel afterwards. It's a really big deal.

I should be thankful I had the guts to do something new and leave it at that. Tomorrow I plan on being thankful. Today I just feel discouraged.

Summer Firsts

The church called today to personally invite Erik to participate in vacation Bible school in July. They have apparently already made arrangements for Marla, Erik's aide during church services, to be by his side throughout each session. I didn't know what to say to this, really, and the conversation was riddled with awkward, silent holes. I almost cried after I hung up the phone but held it together. I am just so incredibly thankful.

I also was invited to join a friend and her son (also with a disability) to participate in a parks and recreation art class for 2 to 4-year-olds. I was previously thinking about trying the music exploration class, but the more I read the description, the more I think art might be a better (quieter) way to go this year. Erik's hearing is still very sensitive and terms like "family music jam" seem a bit off-putting. We'll do it next year.

It's settled, then -- Jesus and art.

I have butterflies in my stomach, as this will be the first time we have done anything like this. I remember participating in classes like these as a child, and I wouldn't trade the memories for anything. Now it's Erik's turn.

I'm so scared. But I'm so ready.

Dream Date

Everything's gonna be all right!
So, woman, no cry;
No - no, woman - woman, no cry.
Woman, little sister, don't shed no tears;
No, woman, no cry.

-- "No Woman No Cry" (Bob Marley)

I had a great day with Erik.

He has been feeling better now since a trip over the mountain to see my grandmother Saturday. When I went in to greet him this morning, he was so distracted by the ominous presence of Gracie-Cat just outside his door that forgot to refuse to let me take him into the bathroom and place him on the commode, which he then used as if he had been completely potty trained for years. Usually, his borderline violent protests make any sort of potty-related activity completely impossible. He asked for waffles and ate two of them before allowing me to work out on the treadmill and shower while he watched his favorite shows (Super Why and Sesame Street). After that, he asked if we could go to the playground. It was a perfect morning for that kind of thing, and I decided we had better get out while it was still a little cooler. The filthy house could wait.

We went across town to a park we don't usually visit. It's near the trendy shopping district and a group of expensive homes and condos perched on a rocky bluff overlooking the river. A couple mothers stood in the shade next to double strollers, bottles of sunscreen sprays, and an array of interesting snacks in clear plastic bags. They smiled at me, and I smiled back.

Erik wore his AFOs today. I have been pretty bad about employing them lately, but his rapid growth has made his Achilles so tight that I have been forcing myself to strap them on him, even in the heat. However, I regretted putting them on as soon as we got out of the Jeep at the park and he began moving as if he had segments of stovepipe over each leg. He didn't seem to mind, though. We passed the fence and entered the play area, which was only being used by a handful of children. Erik walked stiffly up the ramps to a surface riddled with small holes and then held onto the railing for dear life with both hands, shuffling his feet forward until he could adapt to his new surroundings and determine the stability of the surfaces he seemed to have trouble visualizing. I walked before him over a little bridge and stomped my feet to show him how to feel things out. I could feel the other mothers' eyes on me. I suddenly felt a little like a mother bird teaching her hatchling how to fly. He stomped along behind me, and we made our way to the top with only one little fall temporarily shaking his confidence. We stopped to watch the traffic glide by, and he greeted each vehicle with a hoarse, hearty, "Hello, motorcycle!" or "Hello, car!" He was most thrilled by the deafening equipment two men in orange vests operated nearby on the grass, including a weed trimmer, a riding lawn mower, and a leaf blower. I sat to let the sun bake my nearly bare feet and shins and enjoyed the look of the dark green tops of the pines in the distance against a postcard blue sky. The birds sang, the lawn maintenance equipment farted in the distance, and everything seemed to hum in unison, making air feel almost electric. After Erik was finished observing the world from our lofty perch, he sat down on his bottom and took the slide to the blond-colored wood chips below. He found a steep set of metal stairs and informed me he wanted to climb them. After my encouragement and a slightly shaky start, he mastered them. He even seemed to listen to me when I suggested holding on differently. We were completely in sync. He continued to explore everything, and, amazingly, I was able to sit close by, relax, and watch him play fairly independently for the very first time. Once the sun rose high in the sky, dark, linear shadows of metal railings cast themselves over the surface of the ramp we previously took. Erik froze in his tracks, seemingly unable to see where to step. I asked him if the shadows were freaking him out, and he answered that they were. I offered my hand to him, which he gripped tightly, and we stomped together back to the top through the shadows. We passed one of the put-together mothers, who was now holding a chubby, drooling infant wearing a frilly sun hat in her arms, and she said, "Boy, the ramps and things here seem to be really good for him."

I didn't really know what to say.

For once, I wasn't thinking about physical therapy, really. We were just in our normal, perfect little world, set apart from everything and everyone else. I prefer it that way at the playground, which is a difficult place for me to be. This woman's voice snapped me out of my trance, and everything around us seemed to crash into me. I can't remember if anything came out of my mouth in return or not. This was a first. I have never had a stranger comment on anything except perhaps about how cute Erik is. I felt defensive and slightly confused. She certainly didn't seem to mean anything negative, but I felt slightly off balance. I smiled, nodded, and continued up the ramp.

And then I saw her son running in front of us in the sunshine.

Hooked over each ear were bulky pieces of grayish plastic with wires snaking from them to spots on the back of his skull. They looked to me like they could be cochlear implants for deafness, but I couldn't be certain, as I know next to nothing about this kind of thing. Suddenly, Erik's plastic leg braces didn't seem so obvious or strange after all. I took a deep breath and exhaled the last of my defensiveness into the humming atmosphere, attempting to absorb the energy around us even more for the reservoir of strength that I need to dip into from time to time.

When we left the park, we were covered in a light sheen of perspiration. Erik's cheeks were covered in a happy, exhausted blush. I assigned him the job of holding my water jug while I drove, and he seemed delighted with this job. As we made our way back across town, we sang "No Woman No Cry" at the top of our lungs. I felt wonderful and didn't feel like going home quite yet. I decided to run through the drive through at Taco Time. We returned with our little paper bags and enjoyed our bean burritos together at the kitchen table. I even poured Erik some sparkling orange pop, which I something I rarely let him have.

It just seemed like a special occasion somehow.

Crappy Visit

In every life we have some trouble
When you worry you make it double
Don't worry, be happy

-- "Don't Worry, Be Happy" (Bobby McFerrin)

Yesterday I had a message on my cell phone reminding me about Erik's "Happy Visit" (apparently we have graduated from the "Fun Visit") to the dentist scheduled for this morning. I could feel my face fall as I listened to the cheerful voice and felt my mood turn stormy. After our last appointment, I was ready to demand a copy of our records and make an angry exit today. I tried to keep an open mind, but I found myself a little more than tired of trips to that place. I have lost count of how many times I have been there just in this calendar year.

I made sure not to tell Erik where we were going until this morning at breakfast, and he seemed to take the news well. When we arrived, we were led into the private room with the big, orange chair once again, although the wide door was left ajar. Erik was already creating a lake of hot tears, telling us all, "I don't want to!" The hygienist gave Stinky Dog a ride in the chair, acting as if we were in the middle of the most magical place on earth, and pulled out the usual tricks that seem like a complete waste of time to me. The only thing Erik seemed thrilled about was the suction tube, which I previously told him was a little vacuum. He expertly used it on Stinky Dog's face and shook the stuffed animal, indicating that Stinky was quite ticklish.

The dentist made his entrance, upsetting Erik even more. He placed his large hand on my shoulder and greeted me warmly. He seemed more connected with Erik and less distracted than he did at our last visit. He talked to me through his conversation with Erik, telling him he would only do what I approved of doing, and this made me feel better. We ended up abandoning the large exam chair. Instead, the hygienist lowered a small chair on wheels, and I sat in it, holding Erik firmly on my lap. Erik was now hysterical. I put one hand on Erik's forehead and pressed the back of his head against my shoulder. His screams intensified. I smiled at the dentist to signal him it was okay to proceed, and he rolled his own chair closer to me. My knee pressed into the crotch of his expensive slacks, and I tried not to notice. We locked together like this, sandwiching one angry patient, and I held Erik's strong hands down. I decided it was just best to get this unplesantness over with.

It wasn't necessary to use the metal device to lock Erik's jaw open after all. It remained a silent, threatening presence atop the paper-covered tray. Instead, Erik cried so hard that his mouth automatically opened, allowing the dentist to paint the back teeth with the cream-colored fluoride varnish and wipe off the excess with gauze pads. The dentist soothed Erik and reminded him the world wasn't perfect.

This I know.

After the short but messy procedure, the dentist tenderly wiped the tears and snot running down Erik's face. Erik ceased sobbing and actually thanked the dentist on my cue, obviously not holding a grudge. In fact, when the dentist asked for a hug, Erik quickly gave him one, almost collapsing into his arms. We collected our balloon and toy car from the frog bucket, and I returned to my chair back in the waiting room as promised to let Erik stim on the spinning toys for five minutes. Another mother attempted to make eye contact with me, but I was feeling less than social and looked away. I'm sure Erik's screams were more than audible from any chair in the building, and I couldn't imagine what she was thinking when we emerged and my 4-year-old crawled around on the floor, giggling with delight and spinning everything that wasn't glued down. It's not embarrassment I feel but a sense of disconnect with the world on occasions like these. Erik looked at the other children in the room and brightly spouted, "Hola, amigos!" and "Hello!" The younger girls echoed a pleasant greeting on their way by. The older boy looked annoyed and ignored Erik altogether. Typical. It will be a miracle if I can get through Erik's childhood without slapping a stranger's child. So far, so good. But I'm not making any promises.

Soon I dragged Erik from where he was sprawled on the floor, and I made it to the car with just minor protests. As I buckled him into his car seat and deposited the putrid pile that is Stinky Dog on his lap, I took my palms and placed them on each side of his face. I paused for a moment and looked into his eyes, holding him there almost too firmly, and I kissed him very hard on the forehead before I shut the door and walked around the Jeep.

Our next "Happy Visit" is a whole three months away this time.

Boulyah!

Deep Blue

I am in a blue mood day. That frigid color the last blue layer of ocean is before slipping into the the blackness of outer space deep beneath the surface. I have remnants of dreams fluttering in my head like laundry drying in the breeze. Dreams I cannot remember but which make me feel paranoid and nervous.

I was brave yesterday and called a friend to meet me and Erik at McDonald's with her children. I was tired of being in the house watching the weather become more gloomy, and the outing actually sounded like fun. I risked the hangover that usually comes with activities with other children.

I always put on my happy face and pretend like it feels like we belong in a crowd of other families, but it still doesn't quite feel that way. I hate the way people look at me and Erik when I am in a vulnerable state like this. I find myself looking for reassurance, lamely asking my friends if Erik has improved since our last outing or nervously giggling at his antics when he approaches strangers with his seemingly helium-infused hellos when all I want to is snatch him up and and protect him up in my arms. He's getting too big for that now.

I purchased a small packet of french fries, which ended up being a very generous portion, and Erik ate them with gusto, growling wildly for effect and smiling at me as he did so. I hand fed him three-quarters of a hamburger that I tore into small pieces while the other children expertly consumed their lunches with little assistance. My friend and I spent some time standing outside the play structures supervising the children and catching up. Despite an invitation to play hide and seek by his friend, Erik refused to play inside any of the brightly-colored plastic tubes. By now, his friend is accustomed to this and continues playing without him. Erik did venture just inside the entrance of a couple of play tubes and sprawled out on his stomach on the floor, creating a living speed bump for the other children who entered and disappeared above him. At one point, Erik watched his friends playing inside through a window and joyfully rapped his fists against the plastic. I felt like he did, only much less happy about it.

Forever on the outside looking in.

After lunch, my friend treated all three children to towering vanilla ice cream cones. Erik can't hold an ice cream cone and eat it at the same time without dropping it like other children seem to be able to do. I held it while he scooped bites with a spoon and became slightly angry with me and the whole process. It seems he is beginning to compare himself with his friends for the first time. I'm sure this will speed his remaining developmental milestones, but I am watching the seeds of frustration and the falling away of the ignorance regarding his differences being planted. That frightens me.

I don't want him to know he is different. Ever.

I don't want him to feel the things I do when I walk into a room filled with children. There is nothing I can do, though. It's coming whether I want it to or not. If I'm lucky, I will always be there when he turns around for reassurance and strength. I know in my heart this is what I am supposed to do, and if I don't have the strength to do it, I will borrow, beg, and steal it from somewhere. It's my job, and although it is scary as hell, I am incredibly good at pretending I'm a lot stronger than I actually am. I always have been, even before Erik. I should have been an actress. I just know that sometimes when I pretend I'm okay, I actually begin to believe it after a while.

Over the last couple of years, I have watched the parents of other children with disabilities take their kids to parties and parks and schools. Through the sharing of their feelings, I understand that this sense of not belonging will never completely fade. We will always feel a little bit like we are rapping on a window from the outside. I now have evidence that it becomes more tolerable. This is in the phone call I made to my friend to initiate this outing. That's something I would not have easily done, even in the recent past. It's easier because my friends have proven that they will support me, no matter what. I will continue to paste on pink, lipsticky smiles and take away the precious memories I would not have dared to create for me and my son if I had never left the house. No matter how scary it feels. I am incredibly proud of myself for pretending to be that brave. Amazingly, I'm starting to believe it.

But the ache that resides in the deepest part of me will never completely fade.

And that makes me incredibly blue.

Attempting Courage

I'm feeling nervous. I wrote the following letter to the pastor at our church. Hopefully I will not chicken out before I deposit it in the mailbox. I have enjoyed our anonymity in our congregation, but as time goes on it is clear that soon everyone will know who we are. The article I enclosed on integration in a church setting is no longer available on line, but I would be happy to share it with you upon request.

January 12, 2009

Dear Steven,

I attended a trivia/brainstorming session for parents last year with my husband Brian. Our son Erik was born with a genetic birth defect called Williams syndrome, and although we tried on a few occasions, we were unable to attend church because of his disabilities.

First of all, I would like to express how grateful we are for the help we received. Janet did a fabulous job of matching us up with Marla, and she has been lovingly caring for Erik during church services every other week. Erik’s brain does not process loud noises well, and they seem to cause him physical pain. For this reason, being in the nursery with crying babies was absolute torture to him. In fact, on one previous attempt to attend church, I left during the service sobbing with our agitated little boy, feeling like we did not fit in anywhere. Now that Marla is on our team, she has introduced Erik to the church experience, and he is thriving there. Lately he has been able to sit with his peers during the children’s moment with Marla. It is not often that things feel “normal” to me, but this simple thing has given me so much joy. I had tears running down my cheeks the first time the door opened and Erik was led to the front of the church. Just like the other children.

The purpose of this letter is twofold. First, I would like to make myself available in the event there are parents who are struggling with a disability in their child. I am concerned there may be others in our community who are feeling alone like we did. We were isolated for years until I finally spilled my heart to a deacon who called to ask how things were going. I am also now part of a local support group in town and consider myself an expert at having coffee with others.

Second, I would like to give you this article that beautifully illustrates the challenges we have been experiencing and will likely experience in the future. It even describes the behavior of a young boy with Williams syndrome. If you do not know Erik yet, he will definitely make his presence known to you in the future. Erik’s syndrome gives him what some have labeled a “cocktail party personality.” He knows no strangers and will approach anyone. If I do not intervene, he will approach people on the street, reach up to them, and hold their hands. While this is terrifying as a parent outside our home, I believe a church environment may be a safe, supportive place for our family to just BE without the constant fear. I do not look forward to the day he realizes he is different or hears someone call him a “retard.” That day will be very difficult for Erik, but it is coming, and his belonging to a group will be even more important. Not everyone believes his odd behavior and friendly mannerisms are charming, and that has been a painful realization over the past few months for me.

My hope is that one day Erik will be able to sit with us in the sanctuary and that the people around us will at least attempt to accept who he is, differences and all. I plan on teaching him to be a polite young man who is respectful and keeps disruptions to a minimum, but I know he will struggle. Only time will tell what is possible for our family. However, it is so much easier to dream knowing we have support from our church family.

Finally, that dark day I left the church crying my eyes out, there was a Christmas tree outside the front doors you had invited us to take a label from. The wind was whipping things around, but I managed to free one without letting it go. The word on it was “COURAGE.” I now unpack it from my box of Christmas decorations each year and place it on my own tree to remind myself how far we have come and what is possible if we dare to dream it.

There is nothing left to say but THANK YOU.

Very sincerely,


Nancy (Erik’s Mom)

A La Cart

Erik has become Mr. Question Man. His sentence structure is becoming more sophisticated, and he seems to enjoy expressing himself more easily. One of his favorite things to do is to query others to obtain information. Especially me.

Lately I have heard the following:

"Mama, did you go to Home Depot?"

"Are we going to go see Boppa and Gua?"

"Did you take the cat her medicine?"

"Want to do some laundry?"

When he wants something, he will still use the good old "Want some ______," as it gets his point across and is easiest to blurt out when he is in a hurry. There are exceptions to this, though. For example, he recently told his father to turn off the TV and make him a quesadilla. The other day he asked me probably hundreds of times for a snack. All day long I heard "Want some snack." It didn't matter that I had given him something to eat or what it was. He repeated that same phrase over and over until I was ready to gently set him out on the front porch and shut the door behind him. When his father came home and I headed out to dinner with a friend, I made a call home on my cell phone to remind Brian there was hamburger thawing in the fridge. In the background I heard Erik ask to speak to me. As soon as he got on the phone, he said it again.

"WANT SOME SNACK?"

I had to laugh.

I am allergic to shopping and plan the meals we have here carefully so I don't have to go to the store more than once a week or even longer. Without a steady stream of work this time of year, I don't leave the house more than I have to. These mega trips to town cause my cart to overflow with produce and snacks for Erik. I took him out yesterday and realized it would be the last time he would fit into the seat of the shopping cart at one of our local supermarkets. While the carts at Costco are roomy and even built to accommodate two small children, these are on the smaller side. I left his AFOs (leg braces) off because cramming his lower extremities through the metal bars in the cart when they are encased in plastic is more difficult than it looks. Plus, I have had difficulty extracting him from the thing in the parking lot when our shopping is complete. I end up violently yanking on him, which he tolerates extremely well, and I glance around me to make sure nobody is looking, wondering if this might be the time we need to call the local fire department to come to our aid with their pneumatic cutting tools. This would surely negate any possible nomination for me becoming Mother of the Year.

Yesterday, however, I did manage to feed his limbs into the cart and tried not to step back and take a look at how ridiculous he looked in the thing or how many pounds he exceeded the limit posted on the cart's flip down butt flap. I just made sure not to take both hands off the cart's handle when it was empty for fear it would do an end-over. I wheeled Erik around the large store, first selecting three new pairs of fleece pajamas and avoiding the blanket sleepers with feet in them. Erik seems to be growing so quickly that he no longer fits into the ones designated for his age. The toes in them rip out within a week. He helped me pick pajamas out for the first time and seemed to like the ones with racing cars on them the best.

Erik was obviously uncomfortable and asked to go home several times but hung in there and endured at least an hour of shopping. He greeted everyone, obviously preferring to speak to shoppers in their teens who stammered hello back and tried very unsuccessfully to ignore him as we passed by them repeatedly on each aisle. Erik says hello to everyone in the store thousands of times if he can as if he has never seen them before and seems delighted to spot them over and over. He even assigns them names sometimes, loudly spouting random things such as, "HELLO, ALICIA!" which can be quite confusing for passers by. One woman was greeted so many times that she ended up having a lengthy conversation with Erik and seemed to really enjoy it. I usually let him carry any conversations we have with strangers and go about what I am doing, looking up quietly and smiling to acknowledge them here and there. He is also obsessed with spotting the little scissor lifts and forklifts they use to stock shelves. Remember when I could barely take him to the store because of the horrendous beeping noises these pieces of equipment make?

I sure do.

As we waited in line to have our groceries checked and bagged, a very attractive, fit-appearing woman said hello to Erik and asked if he remembered her. Her daughter, who was probably about 12, smiled very brightly at Erik. When the conversation they were having seemed longer than usual, I looked up and said hello to the woman. She told me how cute she thought he was and then explained that she was with a local Christmas caroling group and that Erik sang with them recently. When I looked confused, she said that the lady who cared for Erik one full day a week was her dear friend and that they had gotten together when Erik was in daycare. They made their way through the line and disappeared. I had to laugh, as I had no idea Erik had gone Christmas caroling this year. I was already losing track of my independent son at his ripe old age of 4.

We stopped at the bank machine on the way out, and Erik tried to chat up the lady with her back to us pulling money and a receipt from the slots. I put my finger over my lips and quietly shushed him, which he found hilarious. He laughed loudly, and the woman doing her banking smiled over her shoulder at him.

We made our way out the door, rolling over a sheet of black ice covering the parking lot. I successfully yanked Erik from the cart and swiveled my body to put him in the car, hoping the muscles in my back would hold and allow this familiar motion.

Until Erik is mature enough to stand by my side and not pull items from the shelves onto the floor, this mega trip was our last at this particular store. He tends to disappear in an instant, and my hands need to be free to hold onto him at all times. Luckily, he is a busy boy and I am able to make these trips during school or his physical therapy appointments at the pool. It won't be the same, though.

It certainly will be quiet.

Haunted

I sat in church next to Brian today and ended up craning my neck to see the small door across the sanctuary that frames three square glass panes. I previously detected movement behind the glass in my peripheral vision and turned my head to look, instantly recognizing bits and pieces of Marla, the woman who cares for Erik during church services. I spotted a neat ponytail. A flash of disembodied, bright smile directed at an invisible somebody in the hall. I then thought I saw a piece of Erik. A long, stiff leg encased in a plastic brace kicking from an awkward, high angle. Perhaps from an invisible somebody's arms. I smiled and lost track of the sermon. When I glanced back at the pastor and then back at the door, he was gone.

During our church services, young children are called to the front of the sanctuary. They are usually given a trinket or encouraged to use props to help illustrate a popular Biblical story or a heartwarming but educational anecdote. From there, they are instructed to follow a woman in a jaunty, brightly colored hat to their age-appropriate Sunday school programs while their parents continue to worship. Erik has never been a part of this group. It is simply not possible at this time because of the sometimes crippling side effects of his syndrome. Instead, I search for glimpses of my child through the windows surrounding the congregation during the service, hoping to see his face as he leads Marla by the hand. He loves going to church, and we have never forced him to do anything that causes him discomfort in a place where he should feel safe and loved throughout his lifetime. Unfortunately, it has been a long road reassuring him that he is safe and loved in this often noisy environment filled with the children he prefers to avoid. As the adults gather after the service, Erik is in his element. He reaches his arms out to each and every person that passes by, almost frantically grabbing at their clothing and smiling up at them. In fact, he is usually so desperate to grab onto strangers that Brian and I are sometimes forced to carry him out the front of the building so he is unable to get his hands on people. It can sometimes be quite awkward. It's beautiful but scary, sad, and frustrating at the same time, too.

Some Sundays I don't think about our odd church arrangement much at all. We attend every other Sunday and dutifully call Marla at home the night before to instruct her to meet us inside the front doors. However, some Sundays I think a lot about it as we sit quietly inside. I wonder why we have to watch other children sit still listening to stories as Erik wanders the rest of the building haunting classrooms and the nursery as much as he can tolerate. He seems to fill the role there as the greeter who never fails to spread smiles before disappearing when things become too loud or frightening.

This Sunday was somewhat difficult for me once again, but I noticed that my eyes don't threaten to fill with tears much anymore. They remained bone dry, but my heart was heavy. The people who watched me grow up in the church patted me sweetly as I passed by and offered friendly hellos, but I honestly don't really know much about them these days. Williams syndrome has isolated us all now for years. I am thankful, though, for some friendly faces in the crowd, and I find myself grinning back.

Erik, however, seems to be another story.

While we sit quietly or sing strange, contemporary songs that seem to punctuate new-fangled church services these days, Erik is behind the walls making his rounds. The choir room. The classrooms. The library. The commons. The offices. Each time we emerge into the hallway with the rest of the coffee-swilling, cookie-munching crowd, Erik is standing at Marla's side with his hand nestled in hers, smiling up at an ever increasing number of fans, most of which obviously know him by name. Marla is always smiling broadly. As we said our goodbyes today, Marla told us both that Erik was truly a joy. Her husband just had colon cancer resected, and she informed us that she really needed some time with Erik.

I still wonder if Erik will ever be able to sit still enough to join us at church. Or anywhere, for that matter. To be comfortable surrounded by children in front of the congregation, laughing at really lame jokes and learning things like other kids do to the amusement of the congregation. Probably not. At least not in the near future. By then, he will be too old for this kind of activity, anyway. We have missed out on a lot of little things parents take for granted, and I have mourned each and every little thing before I learned to move on. I know that accepting reality will make things easier. It always does.

For now, though, I see how amazing this little guy of mine is. He is a cheerful apparition dancing on the fringes of what is considered normal there, holding a strong, reassuring hand and spreading smiles before sometimes dissolving into the shadows again when the other children appear.

In fact, if you look away for a moment, you just might miss him.

Hold the Cheese

The doctor Erik saw recently called me this morning. She sounded two thousand years old on the phone, but she was very encouraging and assured me that his stool studies were completely normal. As for his symptoms, they continue but have improved. Every other morning I have to wash all of Erik's horrendously soiled bedding and pajamas. It may take another week or two to really determine if dairy is indeed the problem, but I was instructed to continue the strict discontinuation of dairy for now. The soy cheese has worked very well, although he tires of the milk. We'll try rice milk next. Erik is now successfully using the toilet sporadically, although it does not amuse him in the slightest and he usually refuses.

As for me, I continue to watch my friend with ALS suffer. He is slowly losing the function in his hand and will begin treatment with a BiPAP machine soon to assist with his breathing. He admitted today that he finds it more and more difficult to get out of bed in the morning. He coughs excessively throughout the day, finds it difficult to swallow food, and endures bouts of pain and spasms that are so intense I witness his skin turn lobster-red and his shirt soak up buckets of hot sweat. He is virtually unable to even talk through these episodes anymore. He puts on a very brave face, but things seem to be worsening every day. Last weekend as I flipped through the channels on television, I found a movie about Jenifer Estess, a woman who helped launch Project ALS with her sisters after being diagnosed with the disease. It was really difficult to watch, but I'm glad I did. She died in 2003 at the age of 40.

I took Erik to see his friend Samantha today. Shaena and I drove to the next town to take the kids to McDonald's for lunch. I ordered Erik a Happy Meal. He loves french fries and let me feed him torn pieces of an entire hamburger, although he had no part in putting any of it in his mouth himself. When we are out, I usually feed him by hand, as he freezes up around strange noises and other children. The french fries, however, were a different story.

After lunch in the play area, we took the kids to the gaping hole that houses the stairs to the Playland slide. Erik had no interest in entering this dark orifice, so after a brief comparison of the tunnel's size and the width of my buttocks, I sighed, took my tennis shoes off, and crawled up inside, encouraging him to follow. He wasn't buying it. I disappeared up the little spiral staircase, and he followed only because he was out of attractive options. We found ourselves at the top near a plastic tube that snaked out of sight down below. Thankfully, there were no other children using the equipment to complicate matters. Erik was anxious enough. I decided that I certainly wasn't going to cram myself back down the stairs and prayed that the grease trap in the restaurant wouldn't burst into flames while we knelt inside this gayly-colored death trap. I gently shoved a protesting Erik down the stairs, feeling like the most horrible mother in the world, and the tennis shoes capping his plastic orthotics made his horrific ride down the tube slower than molasses, prolonging his agony. Weighing several hundred times more than my son, my descent was much more rapid. I tried not to run him over and managed to gently shove him through the length of purple plastic tubing. The static from the friction against the slide raised my hair at the roots, and with everything being bathed in a purple glow, I felt as though I was moving through Grimace's lower intestine. Finally, we emerged. I was crazy enough to try it once again with Erik. He was even less amused this time. He looked at me, and his bottom lip quivered. His face reddened in alarm. He said, "Go home, Mama?" as he burst into tears. We were done. After I forced him to slide down one more time, we gathered our things, said goodbye to our friends, and drove home, enjoying the scenery and even driving through a farm supply store parking lot to admire the shiny, red tractors. I would consider the entire outing successful, although I wish simple things like play didn't feel like such a struggle. Or more therapy. I suppose every experience is therapy, no matter who you are, if you think about it.

I have attempted to utilize play areas and playgrounds with the help of my girlfriends more and more over time and have noticed Erik's general reaction is greatly improving. He still struggles with tripping, falling, and running into things and drops to his hands and knees to crawl over simple, unfamiliar surfaces that his brain doesn't define well while other kids zip past him without a second thought. The last time we loaded into the car after an hour on the playground, he told me he wanted to go back. That's a first for him. Now if only I could muster the same enthusiasm.

Instead, I still fight tears.

Ascension

One morning last week I woke up and simply felt better, as if I were never depressed at all. Upon gazing into the mirror, I saw the skin on my face had broken out in one small cluster of angry, red pimples. I normally never sport a single blemish. I knew it. Stupid hormones. Two weeks of pure hell just ended abruptly without fanfare or any sort of medical intervention whatsoever. I'm having second thoughts about getting older. I think I'll stay in my 30s forever instead if this is any indication of how things will be for the next 10 years. One hysterectomy, please. Perhaps even a partial lobotomy. And, yes, I want fries with that. With several cups of gooey, orange fry sauce.

Brian is gone on a guys' fishing trip this weekend. My folks and their friends came over to the house last night to watch Erik while I went out with three girlfriends. I drove out to the mall to meet them for spa pedicures. The leg massage I received was so violent and wonderful that I was shaking when I left. The man practically beat the crap out of my lower extremities, and I would have gladly paid him for more. My toes are my favorite 1950s shade of glossy crimson again. After that, we wore our flip flops to the Mexican restaurant across the street, where I was served cheese-smothered food on a brightly colored platter the size of the steering wheel in my vehicle and a cold Mexican beer with a wedge of lime. We drank ice water long after our meals were consumed and practically laughed ourselves sick. From there, we went to a large hotel lounge on the river to have a cocktail. We paid three dollars to listen to an enthusiastic little band made of very nice looking, slightly balding men play some now ancient but very danceable pop hits. I commented aloud on how the place used to be full of boring, older people, but that didn't seem to be the case anymore. Wait a minute. Uh oh.

This morning I packed lunches for us both and headed to meet the girls again for a hike. We drove a few miles past newly-sprouted clusters of obnoxious mini mansions into the pine woods of my childhood for a quarter-mile stroll up to a viewpoint over a beautiful waterfall. Erik greeted everyone he saw. A man clearing brush from the trail cautiously turned his head to look at me a couple of times before he straightened up and said my name. I recognized him as a former classmate and neighbor I have known since kindergarten. We had last run into each other 10 years ago at our class reunion. We then continued our walk, but Erik was easily distracted and refused to walk further at one point, so I carried him up the hill, ignoring the fiery sensation building in the muscles of my thighs. At the top, I encountered one of Erik's physical therapists, who seemed genuinely excited to see Erik out and about. Erik seemed to enjoy the roar the water made as it cascaded over a ledge of thick volcanic rock, fell in a generous, white spray of glistening droplets to the ground far below us, and churned violently there before continuing its journey downstream. He appreciates strong, powerful noises. Forceful noises. Industrial noises. I find that awfully strange for a kid who is so sensitive to noise. I am still required to rev up the food processor out on the porch when I get a craving for hummus or guacamole.

Our outing was not enough exercise for any of us by a long shot, so we all headed back into town and parked in a bustling lot at the base of the butte, an old cinder cone that rises nearly 500 feet above town. My friend offered me the use of her baby jogger, and I placed Erik's narrow behind in the seat. He informed me that he wanted to get out immediately, but I bribed him with a cookie and told him to remain still. I then checked to ensure I had another cookie for the return trip. I pushed 35 pounds of boy up the sloping spiral road to the top without much of a problem. In the words of John Cougar Mellencamp, it hurt so good. I was incredibly proud because a mere twelve months ago this would have transformed me into a doughy, wheezing heap and resulted in an emergent call to some sort of rescue helicopter. We all ended up kicking serious butt. At the summit, we sat, chatted, and enjoyed the gorgeous view spanning the mountain ridge in the distance, the busy town, and the dusty desert before heading back down the nature trail with my body straining to prevent 35 pounds of boy from careening down the pebbly slope, through spiky puffs of sagebrush and juniper trees, over the edge, and onto the highway below. We made it to our vehicles and parted ways once again. I imagine I will be a little on the sore side tomorrow.

When we got home I found a box from Amazon in the mailbox containing the new book I ordered about a child with WS written from the mother's perspective. As emotional as I have been lately, I attempted not to crack it open but was overcome by curiosity and have already devoured nearly half of it in one sitting. As disturbing the description of her behavior becomes as the book progresses, it was nice to read parts of my life as a mother reflected back at me in the first segment. It made me feel that much less insane. I smiled when I read about many kids with WS living on a diet of peanut butter and jelly sandwiches, approaching strangers without fear, and manipulating unsuspecting adults. Erik tried to hold many strangers' hands today. He smiled and gently touched people's faces who stooped to talk to him and said hello to nearly everyone, including the tiny insects buzzing by us on the trails. I absolutely hate that he does this but see something incredibly beautiful in it, too. The book also unearthed some really painful memories. Memories of Erik having to sleep in his car seat at night for months because of his horrible reflux, leaving the gorgeous little crib and bedding set I had lovingly put together for him untouched in his nursery. Memories of multiple medical studies, some of which yielded horrible results. Memories of hearing "mentally retarded" for the first time from an uncaring, insensitive asshat in a white lab coat. Overall, though, even the sad memories were comforting because they are a little fuzzier to me now and are largely put away unless something like this book triggers them. I can now stop in my tracks where I'm standing in the middle of this bizarre life of mine and look back at where I have been, feeling a little more like a weathered veteran. Like I said, it hurts so good.

The view is pretty darn impressive from here, too.

Sermons and Serpents

I left our bathroom window open last night to cool the house down as we slept. Well, that was the theory, anyway. I don't sleep well with open windows. In addition, for some reason, the birds sang a sweet, happy song starting at about midnight last night. They sang for hours off and on, making me jolt awake and conclude that it was a decent hour to get out of bed. They were probably wasted on sunbaked berries. Feathery drunkards.

The happy result of my insomnia, though, was the gift of extra time this morning before we left for church. Erik and I dressed up a little. I suggested to Brian that we make an outing out of taking our bottles and cans to the supermarket after the service. We loaded them up, reaching into the box we store them in and putting what was overflowing the top into the depths of a black garbage bag, stashing the whole collection in the back of my vehicle behind Erik's seat. Then we were off.

After a successful morning at church, we strapped our happy son into the Jeep with his Dixie cup of cookies and homemade banana bread from the children's snack table on the way out the door. We then drove the short distance to the store. I went inside with Erik to locate soy ice cream for Gracie-Cat, as the yogurt I have been hiding her thyroid medicine in is apparently making her fur fall out in clumps, leaving behind bloody scabs. On our way out the door, we located Brian feeding aluminum cans into the boxy machines that crush them down and spit out paper receipts. I parked my cart where Erik could watch us work, and I got busy reaching into the basket of the shopping cart where Brian had dumped our bottles and cans. I began to help him stuff the machines, trying to breathe through my mouth as to not inhale the scent of hot, fermented beer. When I finally glanced down to see how many cans were left, I saw a length of what I thought was a bungee cord draped over the pile of metal and glass. After further investigation, I realized that I was not staring at a bungee cord at all.

I hate looking weak, especially in front of my husband. I especially hate screaming like a little girl. Instead, I quickly scanned the stripes on the thing and identified it as the booty of a healthy-looking garter snake. I immediately ceased plunging my forearm into the wire basket and heard my voice go up a few octaves to reach the frequency reserved only for emergencies.

"Honey? What's that?" I pointed to where it rested.

Brian looked surprised and amused, and we both laughed. The creature raised its head up and glided over the cans, looking for a way out of the unwanted madness. It decided not to drop down onto the foreign surface below the cart, at least at first, and retreated to a corner of the cart. Brian suggested sticking to the top layer of cans, and we picked around it. Finally, its head stuck out a hole in the bottom of the cart. It gingerly dropped down onto the concrete and quickly slithered under my can counting machine. We finished the job while I watched my toes. I had a pretty serious case of the freakies.

Brian said, "That's going to scare the crap out of somebody later."

We both laughed again.

We discussed how extremely thankful we were that the snake, who had likely traveled around the corner from the sun-scorched rocks along our walkway into the shaded box by the open garage door, had stayed in place and not escaped during church. However, it was in my Jeep the entire time. I am not deathly afraid of snakes, but I would prefer not to touch them, especially when I am rocketing down the highway in my vehicle. Oh, sure, this one was completely harmless. That is, it would be until the moment it came over my shoulder to rest on my lap or lazily wrapped around my calf, after which I would careen off the side of the road into a power pole, plunging the city into darkness, or, worse yet, through the plate glass windows of a crowded Denny's.

I consider that very dangerous indeed!

Oh God

The church office finally called. The woman on the phone was the exact person I was trying avoid speaking with about my problems, as I am highly uncomfortable with her, but it would have been a teensy bit awkward telling her that, so I put on my big girl pants and let it go. They have found Erik an aide for church services. The woman from the office and the volunteer will be meeting with us tomorrow morning at 9 a.m.

This whole process seems awfully difficult and stressful, and I want to just tell them to forget it, but I finally have results and could assist another family like ours by simply not going away. I'm very good at not going away. A quitter I am not.

It's worth a shot, anyway.

Today did not go especially well in general. Erik officially hates school and tells me he is not going the entire drive there. When we arrived, the street was so slick that at one point Erik was moving without actually moving his feet. He looked up at me, confused. By the time we made it to the front of the school, we had a panel of judges (teachers, aides, and bus drivers) critiquing our skating techniques. Erik apparently soaked his jeans around his diaper somehow at school, as he came home in his spare ones with urine-soaked britches in a plastic baggie in his backpack. I haven't begun toilet training, as he tells me no every time I bring it up, like everything else I suggest. We warred over lunch, naptime, not pounding on my computer keyboard, etc. I was a punching bag once again. He did sleep long enough that I got my work done so I won't have to work this evening. My head is pounding.

It might be a good idea to send me good vibes, say a prayer, or chant something appropriate in my honor tomorrow. I really would like to avoid making a complete ass of myself, smacking someone with the Old Testament, or, heaven forbid, crying in front of these women. I really, really don't want to cry.

Slice of Life

I did my best, it wasn't much
I couldn't feel, so I tried to touch
I've told the truth, I didn't come to fool you
And even though
It all went wrong
I'll stand before the Lord of Song
With nothing on my tongue but Hallelujah

-- "Halleujah" Leonard Cohen (sung by K.D. Lang)

Yesterday went fairly well, although I collapsed at the end of it and was in bed by 7:30 with a headache and apparent exhaustion, as I couldn't keep my eyes open anymore. Does anybody know who was voted off the Biggest Loser last night?

Erik attempted to refuse to go to school yesterday. He yelled, "No school! No backpack! No!" I gave up on brushing his teeth, and he stomped his feet, slammed doors, and followed me around hitting me as hard as he dared. I couldn't help but think this was like spending a morning with Helen Keller at the beginning of her education, except Erik did a much better job of locating me and cursing at me than she probably ever could. After a time out failed to work, I began ignoring him at the point where I thought I was going to snap and stuff him into Gracie's car carrier in order to transport him to school. I took a deep breath and turned on the Today Show. In the middle of his outburst, K.D. Lang began to sing one of the most beautiful songs I have ever heard, an older song by Leonard Cohen called "Hallelujah," and Erik stopped in his tracks. He stared at her performance and was frozen the entire song. He was in a complete trance. I stopped what I was doing and sat on the floor behind him, putting my hand on his back to let him know I was there. He very slowly backed up without breaking his gaze and lowered himself onto my lap. It was a little moment of peace in our house, and it was wonderful.

After school, Erik was dropped off in our snowy driveway, and we made complete dorks of ourselves waving wildly at Jeff, the bus driver. We ate lunch and headed to the orthopedic building at the hospital. I drove there a few minutes early to catch my neighbor Lisa working at her coffee cart in the lobby. She dropped everything she was doing and gave Erik a tour of the lobby, including the impressive but silly manmade stream that begins with a waterfall cascading over a collection of manufactured boulders and travels the length of the registration area in a long, rocklike enclosure. The scent of wet pocket change and struggling algae brought back memories of a fountain in a mall we used to visit in the valley when I was a child.

Erik refused to ride the elevator to the second floor, so the three of us went up the stairs and found the orthotics office. Three men emerged from the back workshop as we entered to make small talk, and Lisa introduced Erik to the ones that don't know us, beaming with pride. She marveled at the wall lined with various orthotics, most of which look as if they are for sports injuries. The bottom shelf housed a collection of braces identical to Erik's with foam pads and straps in cheerful colors.

Lisa left us to tend to her customers, and Erik carjacked a toy monster truck from the waiting room to take into the back room with Jeff, the orthotist. Erik has not been in this room for almost a year and a half but knew exactly what had occurred here with the screaming saw used to remove the materials they used to cast his legs. He began to panic, but we convinced him to join us, and I pulled the legs of his sweats up and took his shoes off so Jeff could see how tiny his braces have become. I'm no expert, I told him, but I do believe Erik has outgrown his orthotics.

If there was any doubt in Jeff's mind that I was telling the truth, one look at Erik's long legs capped with the tiny, toddler-sized orthotics took care of that. He called Erik's PT to see if he still needs them, and she told him she would reevaluate him at our next session. In the meantime, Jeff replaced the Velcro enclosures around Erik's legs so they no longer come undone every 30 seconds, and we were free to go. I made Erik ride the elevator but held him in my arms and soothed him through the rude mechanical buzzes and dings that made him jump and bury his face in my shoulder.

Sweet Talk

Last week Erik and I went to the grocery store for a few things. From his perch atop the shopping cart, he worked the crowd at the store, chatting to the ladies in a very different manner than he did the gentlemen. When a man failed to turn his head our direction, he went through his usual routine of replicating the noises an all-terrain vehicle would make, "vroooming" and practically begging for attention. I went about my business plucking items from the displays and shelves, politely nodding and smiling at the new friends we made, feeling another remnant of my shyness shrivel up and fall away, as it tends to do on any public outing with Erik. Remembering how horrified this used to make me feel makes me smile in itself.

In the baking aisle I bent down to grab a package of walnuts. As I did this, I heard Erik greet someone new who had ventured down the same aisle.

"Hi, sweetheart!"

I straightened up and tossed the bag into the cart, turning my face up to see an attractive woman about my age with a surprised, amused expression on her face.

I grinned at her and said, "You'll have to excuse my son. He's a bit forward sometimes."

She giggled as if she had just met Brad Pitt, and we continued on our way, leaving nothing but new friends in our wake.

Mirror Images

After I had been awake for a couple hours today, I worked out. Hard. I could actually feel my pulse in my eyeballs. I was bound and determined to sweat the blues out of me, at least temporarily. I then took a long, lukewarm shower. One of the two WS families I know in the state rented a house in a resort south of town for the New Year's holiday and had previously invited me to call their cell phone to make arrangements to meet. Because this is such a special opportunity for our family that only rarely makes itself available, I sat down after I could speak in complete sentences again and dialed their number, arranging a visit in the afternoon. Just hearing Heather's voice immediately lifted my spirits. I told Erik we were going to see Sophie, and he seemed unusually excited. I put him down for an early nap, but after he rolled around playing with toys on his floor for an hour, I went in to check on him and he said, "Go see Sophie." I sprung him from his room, told Brian we were itching to go, and loaded the car. We had to drive just 20 minutes, but the pathetic film of wet snow we have been trying to maintain here progressively thickened into a fluffy blanket with each mile and began to encroach on the road. By the time we arrived, the landscape looked like winter did here in the old days, and we located their cabinlike rental nestled in lanky, towering pine trees.

Our visit was truly enjoyable. There were two other couples and their (typical) children staying there for vacation whom we had previously met at Sophie's Run, the yearly 5K race for Sophie and Williams syndrome awareness. Because the race is so incredibly busy for all of us and our extended families, we have not had much of a chance to sit down and talk about whatever we wanted in a quiet setting. Erik was a bit edgy around the two babies present but soon warmed up and was singing and chatting, putting his hand up to feel the texture of Nate's goatee and getting his hands in modeling clay with the two older girls. It was a wonderful, relaxing afternoon. Once Erik began to wilt, we decided to head home, promising to meet again at the run in just four short months.

On the way home, we decided we were hungry and that deep-fried jalapeno wontons from our favorite roadhouse sounded wonderful. We risked a meltdown from our exhausted son, sat down at a table, and ordered our favorite dishes. Erik lasted maybe 10 to 15 minutes before I found myself walking him around the restaurant. A small cup of primary-colored crayons and a children's menu are less than tempting to Erik. When we tried to settle back into our seats, he was absolutely furious and wanted to go home. I sucked what I could of my mixed drink from its giant Mason jar through a straw like a rabid hummingbird and grabbed Erik. We jogged to the car, and I put the Scooby Doo theme song on the stereo. We listened to it approximately 12 times while Brian paid our check and had our dinners boxed up to take home. The waitress, not knowing how exhausted Erik was or exactly why we were leaving, assumed it was their fault and gave us five dollars off our meals. Score.

We are all winding down now. Erik had a short nap while we ravaged our meals like happy animals in front of the television, and I am relaxed once again. I'm looking forward to the New Year and starting anew. The end of any year just isn't my idea of a great time and never has been. I hate looking back at the year, no matter what my situation is, and would like to begin looking forward. However, I'm extremely thankful for this afternoon.

I can't believe it. It ended up being a great day after all.

Sophie and Erik. We neglected to get a photo until we were on our way out the door. Sophie is 5 years old and thriving in every way, and Erik is nearly as tall as she is! This must be due to all of the peanut butter sandwiches I keep feeding him. And the fact Erik is wearing thick-soled shoes and orthotics. Still, he's a tall drink of water.



Erik in the car in the restuarant parking lot listening to the Scooby Doo theme song. That's funny--he wasn't this cheerful inside the restaurant mere minutes before this photo was taken.

Treats

We were invited to attend a harvest festival/Halloween celebration at a nearby local church by Dominick's family. It was a very well-planned, well-staffed party with plenty to do and see. It was great. We tried knocking on the doors of brightly-painted cardboard houses, and children inside would emerge to give Erik candy. Erik was largely uninterested in the candy or activities and didn't say a single word the whole time we were there, but he didn't cry, either. He insisted we hold him while we were there and did seem to enjoy watching the other children from the safety of our arms. After making our rounds there, we went back to our friends' house (through the quiet door), ordered pizza, and made cocktails while trick-or-treaters made their way through the most impressive Halloween display I have ever set eyes on, including a talking head in a ball, a glowing witch half-buried in the ground, and an illuminated skeleton in a tree. I love watching what having children has done to my friends! After Baby Cecilia went down for the night, Erik was instantly more interactive with everyone, including Dominick, and we enjoyed dinner together. When it was time to go, we went out the noisy way to admire the decorations, and Erik did just fine, although we were warned to avoid one witch in particular that was reportedly endowed with a few extra decibels than the rest.

All in all, it was a very good night.

Surf 'n Turf

We took a rare three-day weekend to head to the beach and camp. The concept of sleeping in a tent has always been a romantic idea to me, but when it comes to actually doing it, I can't help but feel like I'm zipping myself up in a water-resistant body bag to save somebody the trouble later. I hate being the creamy filling in a giant bear Twinkie. I never sleep well with the sound of tree limbs deciding to topple down around us when they were perfectly sturdy during the daylight or enormous-sounding creatures rummaging through our campsite. Don't get me wrong -- I'll do it, and I'm definitely not a wimp when it comes to the outdoors by any means, but I simply appreciate being comfortable while I'm having a good time. Add a toddler to the mix, and it's a must. I'm also fairly certain that 10 years ago I wasn't crippled for two days after a night of sleeping on a leaky air mattress atop a layer of lumpy volcanic rock.

Our state has a handful of campgrounds that offer the rental of small structures called "yurts." The original yurt was a type of tent-like, timber-fortified shelter used by Central Asian nomads for hundreds of years. The ones for rent here are roomy, contain sturdy, comfortable furniture, and, most importantly, are heated.

A large group of us headed for the campground this weekend. We were three of approximately 22 old and new friends of all ages from all over who rented a row of yurts and consecutive RV spaces to enjoy the weekend together. My friend Shaena and her family traveled with us. We followed each other over two mountain ranges through progressively gloomy weather until we could finally see the whitecaps of the Pacific Ocean. We moved our belongings into our yurts and walked down the trail with our friends to the beach. Instead of running directly into the sea this time, Erik sprinted up and down the sand in his little yellow raincoat, and my friends were amazed at how quickly the boy could travel. It was readily apparent he was going to enjoy the weekend. He was happy to see so many people together.

The girls cooked dinner the first night. I threw chicken fajitas in my Crock Pot and simmered the mixture all afternoon inside our yurt. I scrapped my original plan of barbecuing when I realized it would probably be pouring down rain while I did this and I opted not to fry meat with rainwater pooling in my brassiere. We gathered at Randy and Leanne's yurt for dinner, and we ate a variety of salads, meats, and desserts with a mostly Mexican theme under portable rain canopies. There was a nice campfire to warm up to and an impressive selection of spirits. The mood was festive, and even Samantha and Erik enjoyed the evening immensely. The rain really magically seemed to stay at bay every time we wanted to be outside. We had more friends joining us later who had to drive over the mountains, and, unfortunately, an impressive storm swept over our heads and went on to create a snowstorm on the pass. They made it safely but reported it was snowing hard. There were reportedly two inches of snow in our yard while we were miles away enjoying sweatshirt weather on the beach.

The first night was a bit rough at first. Erik sobbed when it was time to retire, and we ended up sandwiching him between us in our flannel sleeping bag until his breathing deepened and he slipped into sleep. The storm brought massive rumbles of thunder and flashes of lightning, the likes of which I had never experienced on the coast before, especially in October. The yurt didn't budge one millimeter in the wind, and our heater kept us toasty.

The next day after a wonderful, hot shower at the campground's facilities, we hit the historic waterfront in town. It's a must to get a cup of clam chowder at our favorite ancient restaurant downtown, and a large group of us went there for lunch. I had chowder and fish and chips washed down with an ice-cold beer. Erik enjoyed a grilled cheese and potato chips. We crossed the street to the docks after lunch, and a young couple gave Erik some crackers to feed the pigeons with. He was a little frozen physically but seemed to really enjoy having the chubby, cooing creatures milling around him, their feathers occasionally flashing purple and green in the afternoon light. I spotted a healthy-looking seal cruising the water along the canneries and fish packing plants looking for snacks of slimy chum or anything else that might happen to get lobbed over the railing by tourists. We visited the candy store and filled crisp, white paper bags with every flavor of saltwater taffy imaginable (even butter, which gave the girls a horrible case of the giggles for some reason). We then drove into the more modern, less odoriferous part of town to get supplies, and Shaena and I were able to steal a little time away together like the old days before marriage and children. She bought a saucy, purple hat, and I ended up being sorry I didn't buy one as well. My big purchase was a container of antibacterial wipes.

Back at the campground Brian and Erik left to watch the Oregon game in a luxury RV bus that belonged to part of our group. I found time to light my favorite Yankee candle, chew on an alarming amount of taffy, and read almost an entire book for the first time in months. I occasionally put my book down on my lap to rest my eyes and listened. I could hear the sound of happy birds, the sharp laughter of my friends down the road, and raindrops hitting the plastic skylight in the yurt, but underneath it all was the unyielding, powerful roar of the ocean. I closed my eyes and could almost feel it vibrating through my body and my surroundings. It was strange that I didn't hear this powerful, constant roar unless I stopped to listen.

Saturday night brought more feasting like royalty. We dined on ham, potatoes, steak, chicken, and more salads and desserts. Leanne brought a cake for October birthdays, and when she heard Erik mention his obsession with birthdays and birthday candles, she and a couple of the girls found a long fireplace match that they lit and anchored in the frosting. We sang to Erik, and he blew it out, looking pleased but a bit surprised we made such a fuss over him yet again. I do love my friends. Everybody treated Erik like they would their own child, and he was welcomed by everyone even though he was almost constantly in motion and chattering sometimes incoherently about trucks and heavy construction equipment. After this, many of us hit our bunks early to drift to sleep to the horrible, feral screams of a bloody raccoon death match in the tree above the location of our evening's feast.

Sunday morning after a decent night of rest, we packed our things. Of everyone in our group, Erik was especially fond of Leanne's father, whom he called "Crazy Don." Don was sweet enough to hold him upon request and make an impressive variety of tractor and truck noises. I was happy to learn that Don and his wife Norma had a 30-cup coffee maker in their yurt. If I ever tired of the lonely silence in our yurt, I wandered to over to theirs or to Shaena's parents' camper for more hot coffee and a lively chat.

We said our goodbyes and were back to our original group of two families. We headed down the windy coastal highway to a busy little restaurant for breakfast and consumed plates of omelets, hashbrowns, and fluffy, maple syrup saturated pancakes before heading back over the mountains again. The storm had long passed, and the roads were clear all the way home. Except for two bouts of sobbing that seemed to go on forever and a very awkward, unattractive diaper change on the side of the highway that required me to hold my increasingly lanky child's legs and bare buttocks out of the vehicle while I changed his pants and he screamed bloody murder, we all made it home safely without much drama at all.

The only part of the trip I disliked was attempting to find the outhouse in the dark without my contact lenses in (and the way back to the correct yurt with the correct family inside). Oh, and I gained three pounds in three days.

It was completely worth it!