Erik Quinn: The Heart of a Family: June 2008

Monday, June 30, 2008

I Scream

I am still feeling like death warmed over. I'm on week three now. The antibiotics helped clear Erik's sinuses of the greenish gook bubbling from his nostrils, but he is still not quite right. At the moment, Brian is in bed napping, and I have already passed out on the couch once today in front of the television. I can only do so much around the house before I have to sit or lie down. I explained this to Brian, and he suggested that I am turning into a cat. This weekend I pretended I was not sick. While this was a horrible idea, I had a great time.

Friday I took a friend out for his birthday. We visited an expensive little Hawaiian style bar and grill, where we drank water out of porcelain glasses shaped like angry tikis and my drinks came with bright pink orchids floating on top. Our dinner was wonderful and fabulously seasoned, but the people watching was even better. We sat next to a local physician who dined with a large family and seemed to have a cellular phone permanently glued to his ear. He talked loudly, alternating between English and Spanish, and we rolled our eyes. After this continued for our entire meal, both of us wanted to leap across the table and beat him to death with his phone. We finally paid our bill and left, walking across the street to C*ld St*ne Cr**mery for dessert as the sun set.

I am a low maintenance kind of gal. I drink my coffee black, don't wear much in the way of expensive jewelry, and definitely don't need a lot of attention to thrive. I normally avoid places like C*ld St*ne. Why? The last thing ice cream should be is complicated or trendy. It's a child's dessert, right? Simple. No, this joint is where your ice cream is part of an "experience." It's placed on a frosty granite slab and beaten senseless with two metal spatulas. It's Benihana for ice cream. It's a violent Swedish massage for dairy products. It's...stupid, if you ask me. Heaven forbid you don't order a "mix in," pieces of cookies, candy, or brownies for instance, which are then violently folded into your food with the ridiculous metal implements of death they use. Personally, it makes my stomach turn. The less someone handles my food, the better, if you ask me.

We walked in, and I scanned the walls, which were covered with descriptions of complex specialty concoctions with cutesy names that failed to amuse me whatsoever. I would have had better luck reading Egyptian hieroglyphs by the light of a lantern. My head was already fuzzy with sickness, and I was less than patient to begin with. I finally gave up. The cocky teen with the carefully touseled hair behind the counter then asked what he could make us. I asked for a small butterscotch sundae. If there was a tinkling piano in the corner and we were standing in an old-timey saloon, it would have ceased playing at this point, and the patrons would have whirled around, hands on their holsters.



His eyes widened. He looked at me with slight disgust and parroted what I wanted, only in the form of a sarcastic question, turning his head in the direction of his unfortunate coworker for her reaction. She just smiled. I confirmed that was what I indeed wanted, and he smugly reported that they did not have butterscotch topping, looking quite satisfied with himself.

Touche, my good man. Touche.

He then took a snotty tone and asked me if I had ever visited their restaurant before, insinuating loudly that I was a rookie in this very sophisticated establishment. I explained that I had indeed, that I still wanted a sundae, and that caramel would be just fine. I looked up at my very tall, burly companion, and I saw his lips begin to blanch as they pressed together into a thin line before sinking out of sight into his goatee. The young man behind the counter refused to help me at this point, passing the buck to the girl who was unlucky enough to work at his side. She politely inquired if I wanted French vanilla ice cream, and I gave her my approval. She then sheepishly offered me whipped cream and nuts, and I declined. I told her she could put a cherry on it if she wanted, which she did.

This is why elderly people must feel as if the world has gone mad. I am sure of it. Are we all so bored that we need to be entertained while we order freaking dessert? Really. The sundae was delicious, however, and after my friend made a call the next day to report how I had been treated, I apparently have free ice cream coming. And rightly so. I will be sure to go to that particular restaurant and ask for Mark.

However, I refuse to let him touch what I order with his steely knives.

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Sunday, June 29, 2008

Another Woo Hoo Moment

Meet Jim. He works at Disney World. He also happens to have WS. I have never been brought to tears by the Notre Dame fight song before. There's a first time for everything.

Who needs silly old sheet music, anyway?

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Friday, June 27, 2008

Bring Out Yer Dead

We're still trying to shake whatever infected our household. I feel much more energetic (conscious), even though I sound like a paper bag full of snot. I'm okay with that as long as I can function and don't feel like passing out every five minutes. Erik started antibiotics. His sinus infection has cleared, but yesterday he seemed sick again, and I think perhaps the underlying root of all of this has been a virus, which, unfortunately, we simply need to endure. I have been ill now for two weeks. I dropped him off at Kathy's house yesterday so I could visit the clinic for another new, unexpected medical concern that is threatening to ruin my summer, and I hope that Erik didn't get her kids sick. I think we are all falling apart.

Girls' camping weekend was canceled this weekend. Bummer. I wouldn't have been able to go, anyway. Who wants to spend the weekend in a metal box with a girl hacking up her lungs? Nobody, that's who. Cigars are out of the question. I was invited to camp with margaritas in Nadine's yard Saturday night instead, which I might do, and was asked to a girls' lunch Sunday afternoon at the little hippie brewery downtown, where their stuffed burgers are simply divine. Tonight I dine with my friend with ALS, who is not doing well at all. Hopefully, I can get him to eat. Maybe eating would do me some good as well.

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Tuesday, June 24, 2008

Finding the Humor in Things

One of the things I have discovered about myself since I became Erik's mother is that I feel things so acutely now. I no longer can turn off my emotions like I used to do and am proud to wear my heart on my sleeve. In fact, this is the reason I still write here. Good days with Erik make me feel as if I'm walking on a layer of clouds. On the other hand, before I had an off day as a mother, I really didn't understand what a "bad day" was. Before Erik, I heard mothers tell stories about being slathered in their infant's vomit at work or standing in line at the grocery store while their child asked embarrassing questions about strangers' bodies at three million decibels. The tales were amusing, albeit slightly unbelievable, but until I could place myself in their shoes, I didn't really understand that these reports were likely only part of a chain of unfortunate events in one day that made these mothers wish they hadn't gotten out of bed. Now that I am walking the path of motherhood, I know how impressive it is that they did get out of bed and will do the same the next day to try even harder to create a happy life for their children, even if it requires smiling through a face covered in baby burp. Once time passes, most mothers seem to forget the bad and remember the good anyway.

This is from one of my favorite humor blogs. I read it and laughed, so I will share it with you. Hopefully, you are walking on clouds today, but if you aren't, this will show you that you are definitely not alone.

"Stench, Flies, and Animal Crackers"

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Monday, June 23, 2008

Infection Part Two

I thought I was getting better, but I'm not. I will not see a doctor, at least for now, but if there hasn't been a dramatic change in Erik's condition today, we will trek to the pharmacy to pick up his medicine. Last night he was better but still obviously fighting an infection in his sinuses that doesn't seem to want to clear.

My friend with ALS is having trouble breathing. He spent two evenings at the ER last week and all of Saturday night in a hospital bed. He no longer sleeps much and goes days at a time without sleeping at all. It sounds like they intubated him for the first time Saturday, although, thankfully, it was only temporary at this point.

Last night I dreamed I was in the back seat of a small car, zooming along miles of nearly deserted parkway. There was not much to look at. Just an occasional strip mall and a couple overpasses clogged with sluggish traffic above us. I was being driven to the airport, but it was still miles away, and my flight was likely already boarding. I was trying to chat with the other passengers in the car and sound upbeat, but I wondered if I make it in time. When I glanced out the window again, rows of poplar trees lined the road, their long branches defying gravity and stretching up to the sky. Their leaves were the colors of autumn, and as the wind whipped the branches of the trees about, the leaves let go, came down in a bright shower, and were briskly whisked across the pavement in front of us. I felt my muscles relax a bit and the panic ebb away. There was simply nothing I could do from here. I would never make it on time.

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Sunday, June 22, 2008


Whatcha got ain't nothin new. This country's hard on people, you can't stop what's coming, it ain't all waiting on you. That's vanity.

-- Ellis (Barry Corbin) in No Country for Old Men

Erik was behaving strangely yesterday. After about four time outs, I took his temperature. It was nearly 103 degrees. We were planning on following his aunt, uncle, and cousins on their way from Idaho over the mountain to visit his grandparents in the valley, but Brian called them and told them we were now all sick with this bug and not to stop to get us. Unfortunately, Brian came down with it, too. This malady is beginning to remind me of the Little House on the Prairie episode where they all eat bad mutton and end up with anthrax, sweating profusely and lying on mats strewn all over the chapel floor. Yes, these are the things that course through my brain during times of stress. Welcome to my world.

I ended up taking Erik to the doctor at noon. All things considered, it was the best medical appointment we have ever had in terms of his reaction. We checked in and sat in the nearly empty waiting room. I let Erik explore the immediate area. Usually, I have to keep him on a short leash, as he wanders up to everyone and climbs up in their laps. He brought me books and played with some of the toys scattered about. When a child came in and out of the room, he greeted the older ones enthusiastically and retreated to the safety of my arms with his hands over his ears when a younger child or a baby appeared. The main reason I took Erik to the doctor was because he clamps his hands over his ears often these days, and I can't decipher whether this means that they hurt or he is protecting himself from potentially offensive noises. I can't count how many times people at school or out and about have gently suggested I take him to see a physician to rule out an ear infection. When I ask Erik if his ears hurt, he doesn't answer me. Maybe that's because his hands are over his ears.

When it was our turn to be seen, he greeted the nurse and the physician's assistant who would care for us. He normally refuses to be weighed or have his height measured because of the clanking noises the scale makes. This time, however, he reluctantly allowed me to place him on the platform with each little tennis shoe atop large stickers shaped like butterflies. I silently hoped they would not try to determine how tall he was, and they did not. While we waited in an examination room, he deposited his little backside in a tiny chair next to mine. The heating/cooling system in the innards of the quiet building made strange noises that came through the vent in the floor, and he gripped onto me tightly when he heard it begin to creak, groan, and wheeze, blowing Arctic air into the small room. I sang him songs and gave him high fives. I determined that my singing does not improve with an illness of this sort.

When the PA examined Erik, he was patient with her. There was no screaming or crying when she poked the otoscope into his ears, and he was obviously not happy about the stethoscope but allowed her to listen to his chest. She informed me that his ears looked fine but that his sinuses were likely brewing an infection, producing the bright green trails of mucus down his upper lip we were seeing. Erik is almost 4 years old now, and I have yet to place him on antibiotics. Ever. She wrote me a prescription for some but told me I could wait to fill it as late as Monday.

When I got home, we gave Erik lunch and put him down for a nap. Brian and I watched No Country for Old Men, which I ended up liking much more than I expected. I baked a tray of homemade meatballs, made mushroom and onion gravy, boiled some pasta, and made two salads. We all sat at the larger dining room table for once. Erik only ate a few bites of his dinner. After dinner and Erik's bath, our son's behavior became strange again. He went to his room and came back out with his fleece blanket. He carried both Stinky Dog and the blanket to me and climbed up in my lap. The heat coming off of him was intense. I asked Brian to bring us Advil and bowls of chopped-up Popsicles. Erik normally never spontaneously falls asleep anywhere but his bed, but his eyelids seemed heavy, and he nodded off, waking up momentarily here and there to say, "Hi, Mama" or mutter halfway incoherently about something I promised for his birthday this year. We finally put him to bed.

I awoke from a deep, Nyquil-induced sleep to a drunken-sounding man screaming bloody murder at about 1:30 a.m. My heart pounded so hard that I could barely breathe. Brian asked me what the man had said, but I told him that I wasn't sure. I found myself crouched down in the bathroom, peering through the screen of the open window into the darkness, knowing that I'm blind without my glasses but doing it, anyway. The yelling subsided. I reminded myself that the cave across the street is an idiot magnet in the middle of the night and that the hour for satanic rituals had likely already passed. I am still haunted by the memory of waking up to the sound and bright flashes of a shotgun emptying from that same area into the house next door a couple of years ago and find it hard to settle back down. I previously called 911 at about this hour at least twice since we moved here. I retrieved the baby monitor from the dresser and clicked it on. Erik's room was silent. Brian's breathing in the darkness confirmed that he was already asleep again. I sat on the bed a few minutes before lying down again with my ears on high alert.

When the adrenaline had run its course, the Nyquil grabbed me and pulled me back under again.

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Thursday, June 19, 2008


Forgive me for my absence lately. I am quite busy being ill, taking care of an ill little boy, and working all at the same time, the combination of which makes me want to "go out to get cigarettes," never to return again. Through it all, though, Erik has been a trooper. My ailing body is a giant jungle gym to him, and he often climbs on me, puts his face in mine, tilts his head quizzically, and says, "Hi, Mama!" I laugh until the coughing spasms begin again. We aren't sick very much anymore, and I am not very good at it.

Erik's cousins arrive Saturday. More stories and photos to come.


Saturday, June 14, 2008

Guinea Pixie

Well some say life will beat you down
Break your heart, steal your crown
So I started out for God knows where
But I guess Ill know when I get there

-- "Learning to Fly" Tom Petty

It's only just after lunch, but I had to post this very minute.

When we filled out the paperwork for the convention, I checked the box stating that we did not want Erik to participate in any research at the event. I find myself being perhaps a bit overprotective in this regard. I admit my own personal issues come into play here. Who wants their child to be a guinea pig?

The phone rang shortly after I returned home from a shopping outing today, and a pleasant-sounding woman on the other end asked if I was Erik's mother. She identified herself as Carolyn Mervis from the University of Louisville, someone who is quite involved in WS research at the present time. This was the last person I expected to call the house. I immediately sounded like a teenage girl who had just been asked to senior prom by the football quarterback. My excitement actually completely snuck up on me. I said, "Well, hi, Dr. Mervis!" Apparently, there was not much on our application that was not garbled by the person who processed it, including my name, e-mail address, my husband's name, and, most importantly, the fact I originally was completely against participating in any studies while we are in California. In fact, it seemed to be a miracle Dr. Mervis found our family at all.

Dr. Mervis told me she has seen approximately 500 people with Williams syndrome over the years. She studies language development, cognitive development, the relations between cognition and language, and genotype-phenotype relations involving cognition or language in individuals with mental retardation (mostly WS and Down syndrome) and individuals with normal development. She seemed excited to hear that Erik speaks as well as he does. After admitting my initial hesitation, I agreed to enroll Erik in a brief research study at the convention. She even offered to look at a copy of his IEP and translate it into what it might mean in terms of WS.

I talked to her for almost 30 minutes. We agreed to meet two mornings during the convention. I expressed my fears about attending this event for the first time, and she said something that was horribly ominous and profoundly comforting at the same time. I didn't tell her why I was nervous, but it turned out that wasn't necessary at all. She knew exactly what to say, anyway.

She said, "When you see the adults, don't be alarmed. There is great variability in Williams syndrome, and I assure you that many people with WS are quite successful. However, those people are not as visible as the others."


To me, this reinforces the fact I will possibly be shocked by what I see. While this in itself scares me to death, my feelings were instantly validated and followed up with a giant, warm helping of hope. Even the negative has a positive in this case, if that makes sense. I heard myself telling her that if anybody could make it with this disability, Erik could.

And I meant it.

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Friday, June 13, 2008


Erik has been off for the last couple days. His behavior consists of alternating moments of cuddling, high frequency whining, following me around the house pleading "no" for no reason whatsoever for hours at a time, crying at the drop of a hat, and a handful of his infamous tantrums/slapping/freaking out. By the end of yesterday, I was completely losing my mind. He asked me a thousand times where his father was but only seemed angry at him when he arrived. Besides me having to wipe his nose free of some clear discharge maybe once a day this week, likely because the air is laden with pollen, there are no symptoms of sickness. I sent him outside to play yesterday while I cleaned up around the garage and then took my place in my chaise lounge on the porch with some books. We both enjoyed hours of that. A neighbor came down the driveway with a 2-year-old grandchild, and we went out to chat with them. The girl was a seemingly gigantic, gorgeous child who was nearly as tall as Erik. She quietly offered him rocks she plucked from the ground. Erik was fascinated by her but soon decided she was frightening and climbed me like a koala bear scales a eucalyptus tree, acting as if the ground was molten lava and refusing to detach himself from my body. This little trick of his becomes much less adorable with each pound he gains.

Erik can say, "Where'd Daddy go?" and "Let's go read some books" now. He tried guacamole this week and thought it was the sweat of the devil, making one of his familiar smacky-lip fish faces. Between the Williams and the genes he received from me, his lips are quite generous and expressive, putting Mick Jagger's to shame. He has been making his stuffed animal, Stinky Dog, talk more and more in a deep, gravelly voice. When I can't seem to get Erik to do something, I ask Stinky if he would like to participate in whatever activity I am proposing. Stinky is often in a better mood and can talk Erik into it.

Tomorrow is the fundraiser for my friend's daughter with 22q13 syndrome. This means an afternoon of chair massages, live music, mini-pedicures, silent auction, and amazing food in a gorgeous location nestled in the woods. Men are not allowed unless they are waiting on us hand and foot. Perhaps I'll bring my camera.

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Tuesday, June 10, 2008

Last Stop

Today was Erik's last day of school before summer vacation. The bus wheezed as it pulled into the driveway, and when the doors swung open, I stepped inside to greet Erik and Jeff, the driver. Jeff informed me it had been an absolute pleasure driving Erik home from school during the year. I asked if we would see him next year, but he said the routes would likely change, so there was no guarantee he would be our driver again. He then quickly stood up and plucked his good luck charm, a rather discolored rubber frog with one leg threatening to spontaneously detach, from its perch above the windshield, and handed it to me to give to Erik. I shook his hand, and we exited the bus, taking our usual places in the driveway to watch him drive away. We waved at him for the last time until he finally disappeared down the road beyond a churning cloud of dust.

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Sunday, June 08, 2008

Oh The Humanity

The hot air balloon festival took place across town this weekend. This morning I opened the blinds and saw three of them drifting above the horizon. Erik pointed at each one and counted them for me. Knowing they always make their way on the breeze towards the desert beyond our house, I took Erik out onto the back porch and sat him in my lap while I enjoyed my first cup of coffee. As they rose into the sky, the silence was broken only by the distant sound of their powerful burners occasionally firing. From past experience, I knew that once they drifted over the house, I would be able to eavesdrop on the conversations the passengers were having. It is strange hearing words fall from a silent, blue sky like that. Soon the cool morning air bit me through my bathrobe, and I picked Erik up and carried him back into the house, telling him all I knew about hot air balloons.

A few minutes later, we heard a loud whoosh. Erik looked at me, alarmed. I stared back at him and listened. It stopped and then started again about three times, getting louder and louder each time. I knew they were closing in on us but realized the sound of the burners was never quite so loud before. I grabbed Erik and sprinted for the front door. We made it outside onto the front porch just in time to see the basket under a huge, red balloon come to rest next to the house. Cars and trucks began clogging the road edging our property and stopped to allow the people riding in them to gaze at the bizarre spectacle. A truck towing a large trailer with a picture of a similar balloon painted on the side came barreling down the other side of our property through the thickening confusion.

The people standing inside the basket looked at me, laughed, and said, "Good morning!"

Erik enthusiastically returned their greetings, and I realized I was still wearing only a bathrobe and fuzzy socks. Oh well. After we watched them wrestle with the thing in the breeze for a while, I went back inside and opened the blinds covering the bay window over the tub in the bathroom. By then, the crowd standing there had swelled to about 40 to 50 people. Gracie-Cat took one look at the giant orb and the people around it before her tail puffed to four times its normal size, and she slithered away with her stomach nearly touching the ground to hide under the bed. It seemed that the wind was such they could not take the balloon down without draping it over our house, so the burner fired, and up they went again. I looked upwards through the window and could see through the round hole in the bottom of the balloon. The basket went up after it and disappeared out of sight over us all.

How exciting is that?

I sat and finished the book on the daughter with WS today. It's tough knowing what to say about it, especially since the author could very well be reading this. I admit that it is definitely not the heartwarming story I was hoping for. The back reads, "Michelle’s story encourages every reader to overcome the overwhelming with the help of God to face Another Day, Another Challenge." I couldn't help but feel less than encouraged by what I read. While I admire this mother to no end and think she deserves every award known to man for her courage, persistence, and faith, I felt nothing but exhausted when I closed the book for the last time. It chronicles struggle after struggle, most of which are absolutely horrifying and only repeat themselves over and over, worsening in intensity. The book itself seems to end in the middle of it all during the most horrible scenario without a resolution in sight. If you are looking for a tidy ending, you won't get one here. I suppose there is never a tidy ending to anything. Life's pretty messy. She did her best to express her faith that God would provide strength and the tools to care for her daughter with WS in the end, but it was really disturbing to read. I'm extremely grateful I read it, would recommend it, and am proud to have it in my library but would definitely not recommend it to the newbies on this journey. In the end, I know that every child, WS or not, is different, and the challenges I have with Erik won't be the same as this family's. While I see similarities in our stories, I had to remind myself that she was telling her own personal story, not mine, and that the future is still very unknown for our family. The most important thing I took from it is how to fight for my child in the outside world and get people to listen. Even the ones who don't want to. I will never forget Michelle or her family and wish them nothing but happiness in the future. I hope that she somehow shares an update on their lives soon.

I spent the last part of my day with a couple friends on the front porch sipping cold beer and watching our kids play. I shook off the heartache I had from reading the book and soaked up some sunshine for a while. My friend with ALS stopped by to stoop down and play with the kids, making us laugh in the process, until his face and body betrayed him, silently communicating to me how much agony he was experiencing. He hugged us and left, leaving behind blissfully happy children and me fighting back tears.

I guess life is pretty darn messy.

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Saturday, June 07, 2008


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.

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