Erik Quinn: The Heart of a Family: January 2009

Friday, January 30, 2009

Esta Bien, Amigo

Taking Erik to school in the morning is always an adventure. I never know how I will feel when I walk out the school's front door without him. The old depression that descended on me as soon as I stepped inside faded long ago, but I still occasionally feel a little sad we're still there. These days I am generally very comfortable in the confines of our special education bubble, but I know that this is the last year that we will be enclosed in it full time. Next year Erik will likely spend just a portion of his week in special ed preschool and the remainder in a regular preschool with typical children to prepare him for his transition to kindergarten and the real world.

On Wednesday morning I stood at the front desk at the school taking care of some paperwork when the metal doors clanged open and revealed a teacher struggling to carry a flailing, tear-streaked boy who had been freshly extracted from the school bus parked outside. He was emitting the most desperate, frightened scream that reached a decibel level I have not known before. As they made their way down the hall to the classrooms, the noise only seemed to intensify and bounce off every bare surface in the hallway. I finished talking to the clerk at the front desk, gathered my things, and quickly made my way out into the sunshine, hoping the poor little boy would not blow Erik's eardrums with his yowling or transform him into a slumped over, trembling, frightened mess. I walked up the hill to my vehicle and didn't look back.

Today we entered the classroom, and Erik greeted an aide named Martha by brightly saying, "Hello, Ms. Hola." Martha is Hispanic and bilingual, and Erik formerly believed her name was actually "Hola," as that is the first word she would say to him each morning at school. He seems to have caught on but still enjoys this interaction and refuses to use her real name most of the time. Martha said, "Hola, my little amigo," and Erik giggled.

Sitting on the shoddy, avacado-colored couch in the back of the room was a father with his two children, one of whom I identified as the frightened little boy with the amazing lungs I encountered in the hall earlier in the week. The man smiled at me, and I smiled back. Erik approached all of them, held their hands, and said, "Hello, good friends." Martha said something in Spanish to the father about Erik knowing some of the language, and he smiled down at Erik, who began to chat a little with them using the Spanish he now knows. The adults in the room giggled. Erik was using words I had never heard before. On my way out the door, Erik's teacher stopped me and quietly explained that they had previously calmed the upset boy using Spanish phrases, and Erik remained by the child's side despite the noise, repeating each word carefully and correctly, seeming to understand that the words were soothing and wanting to help. His teacher was amazed.

There is apparently a bilingual preschool in the neighborhood, and it has been suggested to me that Erik might enjoy some immersion in Spanish. My mind was a little blown, as I never thought of this before, but Erik absolutely loves learning new words and loves language. Of course, that would mean I would need a little immersion, too.

Rosetta Stone, here I come.

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Thursday, January 29, 2009

A Very Strange Love Story

For those of you who asked, I finally mailed that letter to my church. It took me well over a week to do it. I'm not optimistic about seeing any results but insist on making my presence known and educating as many people as I can with the words that seem to come to me naturally. The fact that it is easier for parents like me to isolate themselves at home with their personal challenges so they don't inconvenience anyone is simply not acceptable to me anymore. And that is something I feel very passionate about. I feel like I came across the article on inclusion I enclosed with my letter for a reason. It illustrated my concerns perfectly. I guess I refuse to just go away anymore.

I have more than a little fire in my belly.

I recently had the opportunity to be interviewed by our local paper about our journey with Erik, and I accepted. The article will be featured in the health section next Thursday. The topic is about people who came up with their own diagnoses using the Internet. A woman was apparently interviewed who diagnosed herself with a horrible ailment, but it turns out she didn't have it at all. And then there's me, an experienced medical transcriptionist who considers herself the "Google Queen."

In the end, after we were finally told something was officially wrong with Erik by a medical professional and that we needed genetic testing, it took me less than 30 minutes to diagnose my son correctly with the help of the clunky electronic box humming away on my desk. In my career, you only need to know what key words to type in to discover exotic diagnoses and laboratory tests that physicians mumble but expect you to type into medical records perfectly. I very quickly narrowed down a list of genetic abnormalities to determine our worst case scenario, and WS was number one on my list. I remember telling my friends the week before we received our official diagnosis that I was most afraid of Something Called Williams Syndrome. The local reporter interviewed me on the phone yesterday, and I explained how I came across a cartoon caricature that illustrated some very exaggerated facial features of Williams syndrome. He asked if I could find that drawing again, and I asked him to hold for a minute, not knowing if I could after almost three years.

My fingers automatically typed: "facial features Williams syndrome"

There it was. That awful, clown-like drawing that rocked my world and broke my heart forever. I hadn't seen it since that horrible day I realized what we were dealing with. I told him that I held up Erik's photo to the ones on that web page, and the mysterious puzzle pieces of the last 17 months of our kid's life crashed together all at once. Everything suddenly made sense. I remember trying to talk myself out of my suspicions but that I finally had to move the portrait of Erik off the wall above my desk while I worked because I just wasn't ready to believe it was true.

I consider telling our story a giant step in my healing/grieving process. I can now semi-objectively explain things to others who know nothing about me or what we have gone through and feel proud of what we have overcome and accomplished. Hell, I am proud of what we have SURVIVED.

Today I got Erik up from his nap, and he joined me on the couch with his favorite fleece blanket and the infamous, progressively flaccid Stinky Dog. I pressed my lips tightly against Erik's forehead, savoring the wonderful heat and scent of him, and I concluded that he is the subject of the greatest love story of my life. Just like any mother would say. Except our story started out with an incessantly screaming infant, doctors' visits, doubting my skills as a parent, genetic testing, medication, and sleepless nights wondering what the hell we had gotten ourselves into, all culminating in the sickening realization the universe had randomly chosen to strip away some of the precious parts of ourselves written on the genes we attempted to give our son. All to the soundtrack of some of the people around me telling me that God hand selected me to be the mother of a child with special needs because I was strong. That Erik's condition was a wonderful gift. That I had essentially been singled out for this while I was forced to watch other mothers have babies with all of the parts they were intended to have.

I suppose that's what lit the pilot light in my belly to begin with.

In the end, the pain has dulled to an almost tolerable, familiar level. The struggles are different, and I am more effectively equipped to overcome them. And, most amazing of all, the love Erik has returned to me has inspired me to shout our story from the rooftops. It is turning out to be a beautiful thing, indeed.

A photographer from the paper arrives tomorrow to take our photo together.

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Tuesday, January 27, 2009

Look What He Can Do Now


The children around us are growing up now. They have their own distinct personalities, and they are developing some clear interests in the world. This is amazing to watch. However, I have come to yet another realization about having a child who isn't so typical and still demonstrates a delay of a year or two.

Typical kids seem incredibly MEAN to me.

Sure, Erik's a pill to me and his father on a daily basis. However, he has quite obviously not yet developed the same assertiveness and aggressiveness that other children seem to have programmed in them for their survival. He doesn't know what it means to be competitive with his friends yet. He doesn't have a jealous bone in his body. His remarks about other children do not seem cruel like the ones I am hearing from other kids. This seems to have occurred overnight. Either I am incredibly deaf to what is coming from my son (a distinct possibility), or he just hasn't developed the sophistication required to sound like the others do. My money's on the latter.

It seems that lately I am shocked on a regular basis by what comes out of the mouths of typical children about Erik, especially now that his differences are becoming obvious to them. I don't believe all of these statements generated come from a mean spirit, but some of them seem to be taking on a distinctly nasty flavor. These things might not bother me at the time, but later I think about them and feel angry and sad for Erik. This probably stirs up memories of how difficult school was for me at times. I wonder what's to come in the future. A friend of mine reminded me that this is perfectly normal behavior from typical children.

I guess I wouldn't know.

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Saturday, January 24, 2009

HYN Update

There seems to be a lot of talk about the show "How's Your News?" on the WS message boards. Some people are obviously uncomfortable with the concept. I admit that I was at first. I mean, what if people thought the show was funny and laughed?


It's a risk, for sure, to shine a light on what makes some of our children and peers different. To create vulnerability by not knowing how people will react to being interviewed by someone with a disability. But what if, along with the differences, viewers recognize a bit of themselves, too? Might it cause them to treat others a little differently in the future? I think what ends up being really exposed in the end is what's underneath the skin of the people being interviewed. And that makes some people really uncomfortable.

This show is not for everyone, and I respect that. I definitely share the same concerns about the exploitative nature of some forms of entertainment. There is some really awful stuff out there I choose to avoid. However, the more I learn about this particular show, the more I fall head over heels in love with it and the people in it. I hope it opens a few minds and hearts. Maybe it will even demystify and humanize disabilities in general. Who knows. I think it really holds a mirror up to how our society views and interacts with others, disabilities or not.

What it comes down to for me, though, is that just watching these people have a fabulous time makes me smile so much my face begins to hurt.

Here is the new trailer for the show, which airs February 8th on MTV. I have decided to record the program and throw a premiere party on Sunday, February 15th at 3 p.m. Cocktails and appetizers will be provided. If time allows, I will share the original documentary which inspired the TV series. Send me an e-mail if you would like to attend.

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Friday, January 23, 2009

The Life That's Chosen Me

Thanks to my very amazing friend Kelly, mother of beautiful Tyler, for this really touching song that says the things we would likely never dare say out loud. It's funny how sometimes you get just what you need at the moment you need it. Hopefully somebody out there might need this, too. Happy Friday.

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Thursday, January 22, 2009

Four-Year Visit

I took Erik to the doctor today.

An adorably chubby girl with curly blond hair sprinted up to us as we sat in a quiet corner of the waiting room, only to tease us both by tossing us smiles and running away over and over. I noted that although the waiting room was fairly quiet, I am no longer struck by how advanced other children seem in this setting. Erik keeps me entertained and draws me into him, so the rest of the world seems to disappear these days, anyway. Despite our interaction, he never failed to say hello to each person who passed. He greeted them hopefully, using his doctor's name, although I explained we would not see his physician until we were ushered inside. We amused ourselves by making up silly-sounding words like we always do, taking turns and laughing at each other when we came up with an especially good one with a jaunty pronunciation or accent. Erik's new words caused me to emit my big, ugly laugh in front of strangers. I declared Erik the winner of our game.

The nurse called Erik's name, and we were led through the frosted glass door at last. Dread filled my core as we approached the area where Erik's height, weight, and blood pressure would be measured, just as it had been each time since he was a screaming, red-faced infant. I picked him up and placed him on the scale's platform, which he tolerated surprisingly well. Thirty-seven pounds. For the very first time in his life he let me back him against the wall against a crude, plastic ruler. He allowed the tab to be lowered down on his head for a measurement. Height 41.5 inches. Erik's weight is at the 50th percentile, and his height is at the 60th percentile for typical children. Not bad. Next, he was placed in my lap, and a blood pressure cuff adorned with drawings of soccer balls was affixed to his arm. By this appointment, the nurse seemed very familiar with Erik's sensitivity to noise. That was refreshing. She even let him press the button on the electronic sphygmometer. The cuff tightened, and he sat quietly. Being unfamiliar with pediatric medicine, I asked if his blood pressure was normal for a child, and the nurse assured me that it was. We then stood up and saw Dr. G in the hallway. She greeted Erik like an old friend, but a nearby baby immediately began to shriek. I said, "Uh oh," and excused us both to retreat behind the doorway of our exam room.

The room was familiar. It was decorated with a strange mix of photographs. Cheaply framed prints of lions, tigers, and leopards graced the walls, and a fluorescent light fixture above us was covered by a brightly lit photo of a handful of fighter jets streaking across a span of blue sky. Erik thought the planes were birds. He then quickly spotted the fire alarm and began obsessing over the noise it might suddenly make. Nurse Cynthia joined us once again and expressed her amazement at the progress in Erik she had witnessed after our absence of over a year. She reminded me she had cared for one other girl with WS and admitted that this patient had made a permanent impression on her. She reported that because of WS, the girl was almost emotionally overcome by the sound of other patients crying. I sometimes feel as if we are following in this family's footsteps, knowing their identity but never having met them. I told her that Erik was beginning to feel the same way about other people in distress. He is a sponge for any emotion around him. Especially mine. I made a weak attempt to smile broadly at my kid.

I brought a list of lab tests I wanted done on Erik and explained that I had not been as strict as I wished I had been about them in the past. I expressed my concerns about his calcium level now that we had him almost completely off dairy and the fact we could not supplement him because of hypercalcemia. She asked me the dreaded questions about development, and I answered almost all of them by indicating he met or exceeded the typical goals for children his age. He failed miserably on just a couple of them. I couldn't help but be awkwardly conscious of the fact he was still wearing a diaper. I'm only aware of that now because other children have now begun to make rude comments about it.

The doctor soon came in and examined Erik. She checked out his heart, lungs, eyes, mouth, and ears. When she asked to see his penis, Erik opened his mouth as wide as he could. I laughed. In the end, he allowed her to examine everything, even if he didn't know what his parts were called (after I said the word "crotch," he was on the same page).

She then asked me how I was doing. I tried not to physically recoil.

She asked how my marriage was. How my husband was doing. With all of the lists and questions about Erik I had prepared, I felt horribly raw and uncomfortable talking about ME. I fought the urge to bolt from the room. But I didn't. I put on a brave face and fought unexpected tears from nowhere. You see, nobody asks me if I'm okay anymore, and it caught me off guard. The truth is, I'm not completely okay. I never will be. Every single day is difficult, but I'm comfortable with that now. I suddenly realized what my author-friend with the disabled daughter had meant when she told me months ago that she stuffs a lot of the feelings she has about life down deep inside. I thought that was just awful at the time, as I was wearing my heart on my sleeve at that moment, but now I know that there are some things I will never "get over" and prefer to ignore. I am doing just that now. There are some things I just don't feel like talking about or thinking about now and probably never will. It just doesn't do me any good. I then told her that I had my life back. That I was 30 pounds lighter. That I had joined a support group. That I was enjoying some outside interests again. That I was not remotely interested in having another baby. She asked me what she could do for us, and I said nothing. Believe me, I would take her up on it if there was something she could do to improve things. The truth is, we're on our own. And we are doing fine.

Fine enough, anyway.

Sometimes you just have to spackle on a smile and move on.

What happened next took me by surprise. She told me that she was concerned about Erik's blood pressure. Unfortunately, the nurse had been wrong. It was just too high. We were instructed to come back in two or three weeks. I asked her about the renovascular disease that often accompanies WS. I wondered out loud if I was being paranoid but that I didn't believe we had ever gotten an accurate blood pressure measurement before with Erik's anxiety and squirming. Today he had been perfectly still. She assured me that I was the expert on WS and that paranoia was not in today's equation. She reported that it could be nothing, or things could be out of whack, like his kidneys or hormones. I admitted that because Erik was healthy, I was waiting for the other shoe to drop.

We would soon find out.

She said her goodbyes, and Erik held onto her knee and said, "You're so great." Nurse Cynthia came back into the room and asked what lab tests we wanted done. With two shots in the thigh on today's agenda, I decided being strict about labs at the moment could wait.

One thing at a time.

After I held Erik's body down as the nurse inserted the needles and he begged me to take him home, we headed out with stickers from the nurses' station in hand. I told Nurse Cynthia that holding grudges was simply impossible for Erik.

She told me, "Congratulations," referring to what she had witnessed in my child on today's visit.

And I almost welled up again.

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Saturday, January 17, 2009


An amazing mother in our support group held her son in a hospital bed as he slipped away last week. I wish I had something to say, but there are no words. What I can say is that I am certain she never once gave up on this beautiful little boy. Not once. She put her heart and soul into his fight until the very end.

I hope she always remembers that.

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Monday, January 12, 2009

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)

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Sunday, January 11, 2009

It's Okay, Honey

I strapped Erik in the Jeep one morning last week to take him to school and then indulge in a hair appointment at the salon across town. I realized that after I had vacuumed up the petrified fruit snacks from the back seat of my vehicle the day before, I had forgotten to turn one of the dome lights off. Because of this, the engine would not fire up. Instead, it tried its best to turn over, creating repetitive waves of noise that accompany a slow, low-voltage death. I bit my lip to keep expletives from escaping and smacked the steering wheel. I glanced over my shoulder at Erik, and the flesh of his face had molded into scarlet crinkles. Tears were squirting from his eyes. It was obvious the combination of strange noises coming from the car he loves so much and my sudden drop in mood had sent him into a hysterical fit. I told him to hold on and tried a few more times to get the thing started while he shook with fear. I rolled my eyes and pulled the key from the ignition, sagging back into my seat. What a way to start the day.

Between heaving sobs, Erik seemed to attempt to reassure himself. Strangely, he seemed to be using words I might have said to him in the past during an upsetting situation.

"It's okay, honey. It's okay, honey. It's okay, honey."

It was strange to hear him chanting this phrase over and over. I felt horrible. Finally, I gave up on the whole thing, walked around the vehicle, and opened his door. He looked up at me. Tears continued to roll down his face. He asked to go to school. I said that I would try my best to get us there but asked if he wanted to run around outside for a bit. He seemed relieved. After I extracted him from his car seat, he ran off into the front yard while I called everybody I could think of who could transport us across town in time.

I heard Erik's voice again from the yard as he sprinted around on his long, clumsy legs. His toes caught on rocks and cracks in the sidewalk, threatening to topple him over, but he defied gravity and righted himself repeatedly as I winced each time. I yelled at him to watch where he was going. I listened more intently with the ear that wasn't pressed to my phone and heard him continue to reassure himself. He seemed to be chanting once again.

"I'm so happy today. I'm so happy today. I'm so happy today."

The agitation lasted for a couple of days before it began to fade. He asked me hundreds of times if the Jeep was broken. Finally, the questions ceased and morphed into repetitive statements. He still insists on knowing which car we will be driving when we leave the house, with or without him.

As time goes on, I seem to be witnessing the birth of little obsessions fueled by his blooming anxiety.

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Thursday, January 08, 2009

Crash and Learn

My kid just crashed his tricycle for the very first time. I am so very proud. It was an impressive sight, and he ended up tangled in the wreckage. However, he got right back on it, and the event was an exciting topic of conversation over his afternoon snack. He is going fast enough now to require his helmet, which has been gathering dust in his closet, as he never did anything more than turn the trike over and spin the wheels for hours at a time in the past.

I think my days of reading quietly outside may be coming to an end. Finally.

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Tuesday, January 06, 2009


I walk into the cinder block building that housed our movie theater when I was in high school. The place closed down years ago. The ruby-red carpeting has been peeled from the floor like a dirty scab, and the light fixtures that looked like electric balls of yarn are history now. While this might seem like an improvement, not one shred of personality remains. The cement floor has been polished to a glossy, colorless sheen, making me feel like I'm walking on water. I pass the empty space where the ticket counter used to be and head down the hall to the bathroom across from a new tanning salon. A woman in jeans and a flannel shirt totters behind the counter in six-inch heels like a baby deer. The smell of the sprays and lotions they slather on their slow-roasted customers fills the air and sparks memories of my old Barbie perfume factory.

After I use the facilities, I head back down the hall to a small glass door, behind which is now a sports bar. After the conversation lulls and the heads turn my direction, the patrons go back to what they are doing. I have apparently been accepted into the fold. I walk past the long bar and the row of overweight men wearing baseball caps with flat brims and novelty T-shirts. Hot air belches from a network of silver air ducts. I almost choke on it. I strip off my coat and sit down at a booth, making sure to face the door.

I realize the bartender is shouting over the bar at me. She calls me "hun" to attempt to soften her tone. She is apparently too lazy to come to my table to take my order and screams the names of the two things she thinks she remembers me drinking once. She is the worst bartender ever. Instead of approaching the bar, I scream back at her, and she fixes me an overpriced Crown and diet cola. When she arrives at my table, she sets it on a flimsy paper napkin. I'm surprised she didn't huck the drink at me to save herself the effort. I have thoughts of the thick-walled rocks glass hitting my right cheekbone and splattering its ice cold contents upward in a brownish geyser. I smile at her, take a long draw from the fat, red straw, and tell her thanks. She asks if I had a quick tan on my way down the hall. After examining her face, I see she is completely serious. The thoughts I have in my head make me feel very guilty. I told her I just visited the restroom on my way in. Then I ask her if it looks like I tan.

We both laugh, but she knows the joke's on her. She leaves me alone with my thoughts.

I take a pen from my purse and begin scribbling on my soggy napkin. I should carry a notebook with me. The owner of the bar comes in, and I have fantasies about the staff wondering if I'm some sort of restaurant critic as I'm writing. I see stacks of plastic burger baskets lined with checkered paper and containers of silverware. When I ever tried to order anything to eat here, the bartender always seemed nervous and told me the kitchen was closed, no matter what time it might have been. It's probably a blessing in disguise.

The electronic jukebox casts off a throbbing blue light. There are nine televisions surrounding us all on metal stands at ceiling level. They are flickering and spouting silent images of red-faced coaches shouting and balls bouncing over Keno squares. The cinder block walls are painted a sickly yellow and covered with an odd collection of neon advertisements for booze, state school flags, a pair of old skis, and a couple badminton rackets, apparently to classify the place as a sports pub. The wiring is encased in metal tubes that look like metallic veins running all over the walls. The neon glow is the main source of light in here. I wonder if this is exactly where I was sitting when our church group saw the movie Ghandi. All I can remember about that movie is that I was not allowed to use the bathroom. I was in excruciating pain for 188 minutes. The fact that's all I can remember about the film probably automatically renders me a bad person. There are undoubtedly a lot of things that probably classify me a bad person, but you have to start somewhere. At age 12, that was probably all I could manage.

The friend I was attempting to meet never materializes. I cease to care anymore. I enjoy the flavors of artificial sweetener, cola, and alcohol mixing on my tongue. I think of going home but decide to linger a bit longer. I'm comfortable. I attempt to shake fresh images of my other friend trying to locate something to grip onto as the muscles in his legs spasm, cramp, and die. Of the nightmares I'm having now. Of the anxiety that is slowly filling every cell of my body. How nothing seems immune to change. How for just one moment I would like to feel secure. How my prayers have turned from rare, polite whispers to constant, desperate begging at the top of my lungs. I wonder if anybody is listening to me at all sometimes. I keep shouting, anyway.

A man at the bar goes out for a cigarette. Smoking is forbidden inside the bars as of January 1st, but I wonder if the stale scent will ever fade. My guess is that they will probably have to repaint. I go through paint chips in my head and secretly redecorate the place without the owner's consent. After all, nothing ever stays the same. But change never seems to evict the ghosts. They seem to hang on forever.

If I concentrate hard enough, I believe I can detect the scent of ancient popcorn.

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Thursday, January 01, 2009

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.


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.

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