Erik Quinn: The Heart of a Family: May 2008

Saturday, May 31, 2008

Holding Pattern

I am still not feeling right. My brain and body seem slow, and I feel as if I am moving underwater. I'm giving this another week to see if the hormones I am marinating in recede and leave me feeling better. Yesterday the skies were blue, and I felt slightly better. I spent some time in the yard with Erik, and he let me push him on the swing. This normally fails to thrill him anymore. He giggled and seemed delighted with it. I asked my neighbor to take me to see the tiny woman in Lucite heels at the nail salon to have my eyebrows waxed after my parents picked up Erik. You know, I was in labor with Erik for nine hours, but that pain pales in comparison to the Van Damage this evil little broad can inflict on me. After the first eye-watering rip sent pain signals directly to my brain (an entire three millimeters away), she giggled and muttered, "Sorry!" The numbness and stinging subsided within 30 minutes, however, and my new brows left me looking more attractive but slightly angry. Lisa took me to the pub down the street for a little video poker, which turned out to be fairly lucrative. After we cashed out, we took seats on stools and chatted with the lovely girls behind the bar. After a few minutes, I was forced to politely endure an older gentleman's harrowing tale of his trip to the ER to have a boil on his posterior lanced and the resultant diagnosis of a flesh-eating bacteria that left a deep, festering divot in his buttock that he talked about being temped to pack with sawdust. I suppose my life could be worse. When I got home, the healthy turkey burgers I constructed immediately fell to pieces on the barbecue into charred hash. After I muttered a string of unenthusiastic expletives, I heard Brian's truck in the driveway. I jogged out to tell him not to bother getting Erik out of his car seat. Instead, I jumped in, and we headed to our favorite family restaurant down the street. So much for healthy. Oh well. There is just nothing better than deep-fried cheese. Nothing.


NOTE: Today I discovered a new book that is available on Amazon that tells the true story of another family with a daughter who has WS. I am beyond excited about it. I immediately ordered one and plan on reading it from cover to cover. Click here for more information.

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Thursday, May 29, 2008

Knock on Wood

Have you ever been close to tragedy
Or been close to folks who have
Have you ever felt a pain so powerful
So heavy you collapse
I've never had to knock on wood
But I know someone who has
Which makes me wonder if I could

-- "The Impression That I Get" (Mighty Mighty Bosstones)

This week I feel incredibly heavy. I have battled depression on and off in the past, but it's back with a vengeance. I feel worse than I ever have in my life and am considering calling my doctor. It does not rain much in this area normally, but the sky opened days ago and has not let up since. Our Memorial Day weekend was spent mostly inside doing a lot of nothing. Supposedly, things will begin to clear tomorrow. I normally love the rain, but this is a bit much.

Erik is vacillating between being a delightful angel and throwing fits straight from the depths of hell. We had a good morning yesterday before work. I constructed a rather shoddy fort out of couch cushions and a blanket, and he dove into it, hitting his head loudly on the door that served as one of its walls. He came out holding his head, and when I made a big fuss over him and planted my lips over the spot where his hand had been, he said, "That's better," and went back to playing. By the time my parents brought him back in the afternoon, he had decided he was furious at the cat for no reason and flailed his limbs around, slapped the air, growled, attempted to slam furniture and toys into the floor, and generally had a giant cow. After dinner, the three of us walked up the gravel drive to the neighbors in the drizzle and enjoyed cocktails together. It did Erik a world of good. He was offered some orange juice, which he politely accepted. He sipped from his glass and told my friend, "This is very good. Thank you." He was excited to play with Max and Maggie, the two daschunds there. He gently held their long faces in his hands and talked to them in a funny voice that sounded an awful lot like one of the funny voices I use frequently (yeah, I'm insane). He said, "Whatchoo doin dere, Maggie?" Too funny.

I purchased noise-cancelling headphones for the flight to the convention this summer. They cost approximately the same as a small sports utility vehicle, but the little airplane we will be flying on is extremely noisy. I worried aloud that Erik won't even wear the headphones, but Brian suggested that if Erik won't wear them, we can wear them instead so we won't have to listen to him screaming. I laughed and imagined myself strapped into my seat holding a glass of wine and watching my Will and Grace box set on Erik's DVD player, smiling pleasantly while he screams bloody murder with his hands clamped over his ears. I think part of the reason I am a little (okay, a lot) off is the upcoming convention. Because we are geographically isolated from the families we know, this is a huge deal for my family. While I am looking forward to going, I will be relieved when it's a memory. I know this year will be the hardest, and once I get it under my belt, I'll be fine. My parents are going to be there, and I will likely get to see my brother and his wife as well. Still, I plan on firing up my margarita machine when I get back and throwing a giant barbecue party. My support group is next Thursday, and I feel a little sick to my stomach about actually talking this time but know it would be good for me.

Erik's physical therapist told my mother that Erik's body was tight this week in the pool. I hate hearing that because it makes me worry. Any physical change in him frightens me. I'm thankful he has PT every week to keep mobile and stretch his body out, but I still fret. I suspect he is growing at light speed again. He doesn't have to stand on his toes to see out my office window anymore. That's new.

Oh, yeah -- The porch is officially open for the season! Even in the rain, there's a dry, relatively dust-free seat ready for you if you want to stop by. I sure could use the company.

That's it for now.

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Saturday, May 24, 2008

A Little Housekeeping

Today I was standing in the kitchen gazing through the window at the rain. Erik walked by, looked down at the rug I stood on, and stopped in his tracks. He slowly stooped over. Curious, I looked down to see what he was doing, thinking he was about to empty the Tupperware cupboards and create the usual disaster all over the floor. Instead, he straightened to standing with a piece of lint held tightly between his forefinger and thumb. He examined it and frowned slightly. Without a word, he walked over to the cupboard beneath the sink, opened the door, and deposited it in the trash. He closed the door and walked away.

I laughed out loud.

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Thursday, May 22, 2008

Girl in the Bubble

I'm feeling discouraged this week about life in general. When I take a step back and look at everything, it doesn't appear horrible at all. I realize I don't have much to complain about. If only I could shake this feeling of gloom and doom. Yeah, my back hurts, but it's better, and my son certainly isn't in a wheelchair, so I don't have to lift him much. In fact, not being able to lift him as much is forcing me to get on his case to do things himself. I have to nag him constantly, but it's working here and there. I'm just sick to death of my own voice.

School ends soon, and I will have the summer with Erik. I feel a little sick to my stomach about this because I probably need to schedule some activities for him to do. Just the thought of that makes me exhausted and depressed. He's not ready for a formal program through parks and recreation yet, and I'm not up for that, anyway. I really don't want to haul him to a place that should be fun kicking and screaming like he does sometimes when we go to school. He just seems to hate being around other children. What am I supposed to do, then? When we do things with my friends' kids, I get depressed because he still shuts down. At least his tears are few these days. I laugh his quirks off and make light of things, but I feel absolutely rotten inside and then guilty for feeling rotten. He has never gone off to play with a child voluntarily. Other kids tend to run him over, and he definitely doesn't like the noises they make. All he wants to do is push his stroller all over the property for hours at a time. Alone. That's his dream day. I purchased a couple of sprinkler-type toys for him, and we will try those soon. They look like fun, but Erik isn't always on the same page as I am. In all fairness, not many people are.

Somebody told me recently that I don't have to worry because Erik is definitely not mentally retarded. I guess our geneticist was wrong. She also stated the fact that he is cute and looks "normal" will hide any disability that he has and make things easier. In other words, he doesn't look very retarded. While I appreciate where she was going with all of that, it has taken me years to accept the profound effects of WS on my son's body and brain, and I could care less about hiding anything. I suspect it's progressively apparent to strangers that something is different about him. I take him in to pick up work, and I'm sure they are beginning to figure it out. I'm really okay with that. Most people love his strange, loving ways, although they don't know the reason he is different. The only reason I steer clear of the topic around people who don't know is that I lack the energy or experience to provide a sufficient explanation. Sometimes I think a few people who know are more comfortable pushing things under the rug and making it go away. That doesn't help me much because I can't make it go away. I heard it before at the beginning of all of this, and it comforts me greatly now: He is who he is. I finally get it.

I just smile and keep my mouth shut a lot.

The fear of being trapped here at home still haunts me. I have several favorite mindless activities I do on a regular basis. However, no matter what I do, I feel like I am alone inside a thick-walled bubble. I'm less sad these days and more angry. I'm not sure where the anger comes from. It's a nebulous cloud of emotion that seems to have no set target. It doesn't rise to the surface much anymore, but when it does, it emerges like a spray of heavy, seething molten lava. It surprises me every time. I think, wow, I really am pretty pissed off. I don't really know why.

Worst of all, sometimes I still feel Erik and I are invisible, rising up in this giant bubble, caught by a swift breeze. We float silently over playgrounds, schools, and birthday parties, helplessly watching it all drift by below us. The sunlight makes the filmy walls imprisoning us sparkle brilliantly.

Nobody looks up, and we drift away unnoticed.

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Tuesday, May 20, 2008

Shoot Me

I knew lifting Erik was slowly taking a toll on my poor back. Last week I felt a strange pain begin in my right buttock/hip, as if I had pulled something. Now it seems I have worsening sciatic nerve pain that occasionally doubles me over. It feels like a hornet is constantly stinging me in the ass. From what I have read, 90% of the time, watchful waiting is the best cure for this type of pain. I want to crawl to a chiropractor/magician/physician/witch doctor/mechanic/funeral director and beg for mercy, but I want to give it at least a week. What sucks is that I am afraid of losing ground in terms of my fitness goals. Luckily, being this dedicated for almost an entire year, writing nearly everything I eat down and setting aside 30 to 60 minutes a day to sweat like a pig, means my chances of returning to flabiness are greatly reduced. Thirty-five pounds ago, I was just so horribly miserable and don't want to go there again. Ever. I was hiding. Plus, I was finally feeling fabulous before this occurred. I climbed up on the treadmill today, and I did okay with that. Aerobics are not an option for me at the moment. The trouble is that the treadmill is harder to cram into my day, as Erik can't be present when I am on it. Last night I was in so much pain that my eyes watered. Today is slightly better. Either that, or I'm getting used to it. I saw a lady gyrating on an Aleve commercial today, and I felt like hucking a tennis shoe through the television screen.

I watched my friend with ALS hold Erik today. His disease is progressing very rapidly. His right lung is beginning to deteriorate, and he is in agony from periodic muscle spasms. I watched him endure one today, and his shirt became soaked in sweat, although he tried to put on a very brave face for me. After it was over, Erik giggled in his arms, and everything seemed perfect again. Death is a funny thing when you know it is coming. It puts strain on relationships in such an odd way. You would think the petty stuff would evaporate, but the little things suddenly seem unbearable, like coarse grit in the bottom of your shoe. It just feels different than I expected it would. My only hope is that when he goes, we won't hate each other. I guess I expected things to be perfect before we said goodbye, and that isn't very realistic after all. I should know that nothing is perfect. Ever. Even knowing this, I seem to always shoot for perfect. That's just how I am, even in my imperfect little world. Go figure.

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Sunday, May 18, 2008

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!

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Saturday, May 17, 2008

Number One!

I tricked Erik into sitting on the toilet, explaining it was just easier for me to undress him for his bath that way. He was less than excited about sitting there and even said a little "no" under his breath, but he ultimately seemed to accept my explanation, letting me peel down his shorts and take off his shoes. I let him listen to the water run, and then it HAPPENED. He went! Horrified, he stopped midstream, but I cheered him on, and he finished emptying his bladder. I let him flush the toilet and made up a song for him on the spot, including "hoorays" and vigorous hand motions, which he found highly amusing and asked me to repeat.

I have never been so dang excited to see a man use the facilities. Seriously. It was one of the most beautiful things I have ever seen.

I immediately called my parents. My mother answered, and after my description of what had happened had been relayed on the other end of the phone, I could hear my father whoop with joy in the background.


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Mother's Day brought somersaults this year. :)


Friday, May 16, 2008

Macho Mom

Yesterday Erik decided that going to school was the worst fate possible. I concluded that because I had applied sunscreen all over his exposed skin, he was under the impression we were headed out to play in our own yard, not go to school. He then threw one of his famous fits while I located my keys and purse and tried to herd him out the door. He stiffened his body, growled, and flailed his arms and legs about like a Solid Gold dancer, making it very challenging to corral him in his car seat. I backed out of the driveway and frantically clawed around the Jeep for my iPod. I scrolled down the display until I found a song that might calm him down, a technique that usually works. There's nothing quite like blasting a Village People song while listening to a child scream at me at 9 a.m. It almost made me laugh. Almost. As we made our way across town, Erik stopped struggling in his seat and realized he was done for and that I was not going to fall for his little antics. I told him that he would play on the playground at school, after which he frantically scanned the landscape zooming past his window for anything resembling a park. He saw one and said, "There's a playground!" He continued pointing out anything that remotely resembled play equipment, including rows of horseshoe pits, telling he he didn't want to go to school the entire way. Even after almost a whole school year, he does not completely enjoy being around other children. He likes them just fine, but they are just too noisy, and he endures this only because he has to.

As it turns out, he apparently did fine once he was there. His teacher kicked me out of the classroom relatively quickly when I explained Erik was having an off day. I then headed to the salon to get my hair cut and hoped for the best. When the bus came up the driveway later in the day, Erik was in his seat smiling like the grand marshall of a ticker tape parade.

We had just one more major meltdown before the day was over. He loves the outdoors and detests coming back inside. Fortunately, however, I have figured out how to cope with this situation. I fed him, brushed his teeth, dressed him for our 85-degree weather, and gathered the work I had to do so I could complete it during his nap. We spent an hour outside in the glorious weather. Erik pushed his stroller around the property, as usual, and I sat in my lawn chair. At one point, he climbed onto his tricycle and pedaled a bit with my help. When it was time for me to work, I began putting things away, and he began screaming. I picked him up, dusted him off, and took him inside under my arm. I placed him flailing about in bed and screaming at me and shut his door. Having a gigantic hissy fit tends to tire a boy out. He slept, and I worked, finishing all of my rheumatology progress notes and sending them off electronically before dinnertime. Oh, I'm getting good at this.

My bright spot of the day was when Erik woke up and came out to cuddle with me as I enjoyed a cocktail and the evening news. He was in good spirits, having slept his usual three hours, and asked if we would go on a walk. I hugged him tight and said that his Boppa and Gua would probably take him on a walk the next day. I said, "Don't worry, Erik. You'll go on a walk soon."

He smiled and replied, "Eventually."

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Wednesday, May 14, 2008


Two years ago today, my blog was born. Ironically, it was Mother's Day.

Two years is a dreadfully long time to keep an online journal, especially with what I spill here for the world to see. I have a love/hate relationship with this blog. It takes up my time and requires me to experience everything twice in order to put my feelings into words, which is less than pleasant sometimes. My friends and family members come here to read my thoughts, and that can be awkward at times; but, for the most part, they have let me do my thing without judgment. There are people I know who don't come here anymore because what I write makes them uncomfortable. Although I can see why they feel this way, I'm saddened by the fact that they prefer to know me superficially and remain ignorant of what my life is really like. Especially now that I have more good days than bad and there is a lot of joy to share here. I envy their choice to remain comfortable, as that's not an option for me anymore.

As you know, I was thinking of hanging it up on my blogoversary. Wrapping this up in pretty paper and putting it all away. For a time, I felt like I was writing the same stuff over and over, anyway.

Do you believe in signs?

I do.

I was sitting at the stoplight at an intersection in our neighborhood one day listening to music in my Jeep. I was alone and wasn't thinking about much of anything. What happened next is almost impossible to explain. I felt a voice somehow speaking to me. Actually, it seemed to completely surround me. It spoke just one word, and I could see somehow that the word consisted of all capital letters. My eyes widened behind my sunglasses, and I wondered if I had dozed off in the warm sun streaming through my window for a millisecond. Why I would hear this word in the car by myself thinking of nothing in particular is beyond me, but this occurred around a time I felt really discouraged about my writing. There it was in front of me. In all capital letters.


The traffic light turned green, and the voice instantly evaporated. I pressed my foot gently against the gas pedal, feeling as if I had seen a ghost. Maybe I had.

Two years out from that horribly emotional Mother's Day on which I fought constant panic attacks and lived one minute at a time with a wounded heart just one month after our diagnosis, I continue to write. I continue to look back and see my progress clearly documented. I continue to share Erik's story and the fact that although this journey is not close to easy or pretty, it is still possible. I continue to see that although life will never get easier, it will continue to evolve and change. The world didn't end the day we were diagnosed, and I will continue to expose myself this way a little longer. I will continue outside the boundaries of my own comfort zone.

I will continue to SHOUT.

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Sunday, May 11, 2008


WS has been mentioned on yet another television show: House on Fox. I didn't see this episode yet, but it was called "No More Mr. Nice Guy." House, the physician on the show, concluded that an excessively pleasant, kind patient was "either perfect or sick." Williams syndrome was included in his list of differential diagnoses.

Click here if you want to see the whole episode.

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Saturday, May 10, 2008

Switchboard SNAFU

As I scooped up our lunch dishes from the kitchen table, Erik disappeared around the corner into the living room. I suddenly ceased what I was doing and noticed the house had taken on that deathly silence all parents know indicates that their child is in the middle of doing something irreversible and evil, like flushing the contents of your wallet down the toilet. In fact, the last time I experienced this stillness was when Erik uncapped a black permanent marker and decorated the rug in his bedroom with a series of gigantic squiggles that would have brought a tear to the eye of any talented contemporary artist. I'm no artist, but his work certainly threatened to bring tears to my own eyes. For different reasons, of course.

As I stepped into the room, I saw Erik sitting on the couch. He looked up at me and gave me that crooked, Dennis the Menace smirk at me that he does when he is doing something he knows he shouldn't. He held my cell phone in his palm, and it was open. He was pressing buttons on the keypad. I loosened the thing from his viselike hands, and he instantly began screaming "NO" and slapping my legs at the same time. The display read, "66666666666666." Of course. As I began to walk away with the thing trying to figure out just what he had done to lock up the display, I heard a wee voice yelling, barely audible under the bilious din emanating from my furious son, who followed me like a tiny, pissed off tornado. The voice was coming from my phone. Maybe he had dialed the devil after all.





I placed the phone to my ear and found myself talking to a 911 dispatcher. Apparently, her knickers automatically bunch themselves into a giant, angry, crotch-splitting wad when you dial these three numbers in a row for no good reason. She bitched me out accordingly and instructed me to take the phone away from my son. Uh, okay. I felt my face flush and couldn't decide if I was more angry or embarrassed. On top of everything, Erik continued to scream at me, follow me around, and try to topple me over, so I could barely hear her. I just said I was sorry as loud as I could and snapped the damned thing closed, cutting off the leprechaun-like voice admonishing my parental stupidity. I'm surprised CSD didn't show up five minutes later.

Oh, sure, I bought Erik his own cell phone when he started stealing mine. It's really darling. It's red and blue and makes a funny camera sound if you push the correct button. However, it only dials Mickey Mouse, not real people, and Erik is beginning to suspect that he is talking to a recording. Erik doesn't even really know who Mickey Mouse is, as I consider Disney a tad too corporate for me these days. Besides, we kill mice around here. Actually, now I think about it, when emergency personnel get excited or agitated enough, their voices do reach that hilarious, sky high octave and almost sound like Mickey Mouse. However, I definitely did not hear adorable little things such as "Hot dog!" or "Would you like to come over to play with me?"

During my research after this embarrassing incident, I discovered that no matter how I set up my cell phone, there is a hot key that will connect me to the 911 dispatch center that is impossible to lock. What's ironic is that I couldn't tell you what it is, as they neglected to include that in the manual. I could be lying on the floor in a pool of my own blood the size of Lake Michigan and would have no idea how to use this "hot key" or where it is located. I would expire in a matter of seconds, but before I blacked out, I would likely get Erik's attention, point to the phone, and plead for his help. He would probably say, "No, mama, you said not to touch that phone, and I wouldn't dare disobey you."

A girl can dream, can't she?

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Wednesday, May 07, 2008

Our Next American Idol

I need music, please.

-- Erik Quinn

Erik's top ten favorite songs. He now has a play list on my iPod.

Bad to the Bone (George Thorogood & The Destroyers)

Tomorrow (Charles Strouse -- From the muscial Annie)

Juicy (Better Than Ezra)

Bad Boys (Inner Circle -- Theme from Cops)

She Thinks My Tractor's Sexy (Kenny Chesney)

Macho Man (The Village People)

Hallelujah (K.D. Lang)

Car Wash (Rose Royce)

No One (Alicia Keys)

Deep in the Heart of Texas (George Strait)

Sometimes when he sings and is unsure of the lyrics, he sounds an awful lot like a German tourist attempting karaoke after too many Long Island ice teas. Especially that Kenny Chesney song.

Shh theenks my tractur's seck-sayyyyyy...eeet really urrns it aahhnn

It makes me laugh. I really need to make a new recording. He also does a superb Alicia Keys in that falsetto of his. Seriously. It's SPOT ON.

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Monday, May 05, 2008


Sunday, May 04, 2008

Live Nude Girls

Life is pain, Highness. Anyone who says differently is selling something.

-- Westley (Cary Elwes in The Princess Bride)

Thursday night I finished work and drove to the senior center with a large bowl of pasta salad I somehow found time to construct during my day from hell. When I arrived, I asked the gentleman at the front desk where the special needs mothers' support group was being held, and he said that he would show me. He took off as if I would perish if I wasn't in the company of these women STAT, and I had to practically jog to keep up with him. He held a door open for me, and I found myself in a large, gymnasium-like room with a small table standing like an island in the center of an expanse of shiny wooden floor. A serious conversation was already going strong. I pulled up a chair and sat down, feeling like a spy. Soon there were about seven of us. Thankfully, a woman I recognized from Erik's school took the chair next to mine. A woman from our parks and recreation department spoke to us about classes and services for children with special needs. I was excited and scared at the same time discovering things I might do in the future with Erik, and she listened to our thoughts and concerns. We created a play date and scheduled it next month for just our children and their siblings. No stares. No fear of failure. It would serve as a safe place for me to get a foothold in the community, make connections, and see what Erik is capable of in a group setting outside of school and therapy. A place to push off into the typical world of school and play with assistance from people who have been educated how to help children like Erik excel. She then left us to be alone with each other, soaking in a sense of newfound, easy intimacy. Two hours easily slipped by. I plucked salt-dusted M&Ms out of a bowl of snack mix in front of me and listened. The woman next to me cried silently, dabbing her eyes with a bumpy picnic napkin. I wanted to dig through my purse for the dogeared packet of Kleenex I never use but was afraid to interrupt her delicate state of grieving, her face coated in a hot blush. I sat very still, as if I could scare her away with a quick movement like a shy deer in the woods.

As the sun set and its last rays of light spiked through the windows, I realized the white Christmas lights strung above us along the ceiling were on and began to bathe us all in a soft, angelic glow. I suddenly felt as if I was at the world's most depressing and poorly attended gay prom. The woman who spoke to us earlier quietly reentered the room and asked us if we wanted the fluorescent lights switched on. We all said no simultaneously, as if we all shared the same brain. She shrugged and left us alone once again.

I have never attended a support group before. I was surprised to find tears on the faces around me completely shocking. Honestly, I would have been less shocked to enter the room and find everyone completely naked. I came to the conclusion that the majority of my support from women like myself has come mostly over the Internet, and I have not really regularly witnessed much in the way of tears except my own for the last three years. Most of mine have been shed in private. I have at least attempted to contain them behind closed doors. I did not have to speak, and my own salty reservoir remained in place, behind a dam and hidden from the outside world. The thought of it escaping was horrifying. The flow around me was open and honest. When tears were not visible, the eyes around me seemed to sparkle with them, ready to carry away the dark toxins of anger, resentment, grief, and PAIN.

We were eventually eighty-sixed from the facility, as the nimble man from the front desk had to go home. We picked up our dishes and escaped into the cool evening, buoyant on shared energy and emotion, still obviously hungry for each other. I felt weirdly happy and high, as if I had held my breath too long and was suffering from moderate oxygen deprivation. A glossy, champagne-colored Corvette sat outside in the lot, its obscene, fat curves spreading thickly over two parking spaces. We all quietly glanced at it as we made our way to our minivans and SUVs. I turned to the girl with the tears on her face, pointed at the car wearing my straightest face, and asked if it was hers.

She looked surprised, giggled, and shook her head.

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Saturday, May 03, 2008


Sometimes it seems as if my child is full of acid.

When Erik was an infant, long before we had heard of Williams syndrome or knew that stomach acid was constantly gurgling up his esophagus and burning him from the inside out, he always smelled like peppermint to me. He had red, splotchy burns around his mouth. He often pulled off my nipple, arched, and screamed in agony before he regurgitated everything I had labored to feed him. Everything was so difficult back then compared to the other mothers I knew, and in the dead of the night with my screaming infant, I couldn't help but wonder just what I was doing wrong.

For a week now, the skin on his bottom has broken down into wide, shallow ulcers from a bout of new intestinal problems. It looks as though he is burned once again. His symptoms are only now beginning to improve, and the nauseating scent of the greasy zinc oxide cream I smear in a thick, white layer over his skin seeps through his clothing and into the air around him. The boy simply can't seem to form a decent callus anywhere on his body. The skin itself does not seem to know how to thicken, and his toes still leave bright crimson stripes of blood all over the floor if he wears each layer of skin over them away by crawling after his toys. In fact, there is so much blood sometimes that when I moisten it with a mop, I can detect the faint scent of iron, and my stomach lurches.

This week he saw me cry for the very first time. He seemed surprised and a little frightened by my tears. This occurred after he kicked me in the chest for the fourteenth time that day as I struggled to hold him down in order to do the everyday things mothers do with tiny babies. However, he isn't a tiny baby anymore. Before I knew it, the sole of one of his large tennis shoes flew up and thumped me squarely in the breast, and the dull pain traveled all the way to the center of my heart. To an airless, dark space I no longer visit on a daily basis and have worked to seal off the majority of the time in order to dam up the river of the tears that used to come every day. We were on our fifth hour of nonstop tantrums, and I was worn down.

I am trying so very hard. I really am. Every little thing during the day is such a giant production. I constantly stand next to him and cheerfully coach him step by step how to pick up his toys, lie on the bed so I can change him, walk in 10-yard segments to the car, and even chew a sandwich. I celebrate every accomplishment, knowing that progress is snail slow but will come with time. He does very little voluntarily, regardless of the consequences, and I still must pick him up and carry him, ignoring the way he strikes out at me and trying to remain perfectly calm without losing my mind or throwing out my back. Hearing the word "no" sends him into angry orbit, no matter how softly it is spoken. He screams at me all day, even when he is not close to being upset, and continues to throw tantrums, which, admittedly, have only been intensified this week by his horrible discomfort.

This time I quietly turned away from him, closed his door, and walked around the corner into the kitchen. I sat down on the carpet, let myself slump over to rest my elbows on my legs, and began sobbing, covering my face with my trembling hands, feeling too exhausted to tread water in this ocean anymore. I finally picked up the phone and called Brian, not knowing what else to do. He came home early and confirmed my fears that things are definitely getting worse. We both know that it is important to be consistent and hold the course, and we know that time will bring us all some relief.

For now, though, sometimes it still seems as though my child is full of acid.

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Thursday, May 01, 2008

"A" For Effort

Yesterday Erik was playing with the old fashioned wooden blocks from our childhood collections. He picked up several of them, looked carefully at each, and began announcing the names of various letters of the alphabet. When I sat down next to him on the floor to investigate what he was doing, he had indeed correctly identified several letters. I rejoiced very loudly, and he smiled, looking very pleased with himself.

I highly recommend those delectable little cookies shaped like letters, which Erik has eaten thousands of, and the strange Sesame Street video entitled All Star Alphabet, starring Stephen Colbert as the letter "Z."

Now if only we can get him to use the toilet.

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