Erik Quinn: The Heart of a Family: November 2007

Friday, November 30, 2007

I've Got Spirit, Yes I Do

Let the children come to me, and do not hinder them, for to such belongs the kingdom of God. —Luke 18:16

This week is a blur. Because I have been sleeping well after collapsing when the day is done, my blog has fallen by the wayside. I didn't make it to 3 a.m. today, but tonight brings another opportunity to sleep.

Yesterday was busy, to say the least. I dropped my bawling, red-faced boy off at preschool and drove to the grocery store over some very icy roads that resulted from a gorgeous but less than enthusiastic evening of tiny, dry snowflakes. When I finally arrived home across town and had put away most of my groceries, I decided to pull down the ladder in our garage and haul down our heavy boxes of Christmas decorations from the attic. I have not done this before, and halfway through the process of going backwards down from a dizzying height with large amounts of weight held above my head, I realized that if I fell, I would lie for hours undiscovered on the cement floor under a box of tinsely Christmas cheer. It probably wasn't the brightest idea of mine. Despite this, I am highly enjoying being in shape and successfully moved what seemed like thousands of pounds of tree and home trimmery into the living room. Brian and I purchased a faux tree for the first time to make our lives a little easier and enjoy the season longer. Because our tree sits directly in front of a wall of windows through which the sunlight streams and seems to instantly transform the classic holiday icon into a giant, flammable hazard, it was a good move. Our new tree is nine feet of manufactured love directly from China, adorned with 1800 white lights. I stood atop a wooden bar stool to install the angel and worked my way down, taking each of my ornaments from the boxes. There was tiny, green champagne bottle from New Year's Eve 2000...the wooden beach scene Brian bought when we traveled to Hawaii for the football game last year...the needlepoint wreath my mother stitched in my school colors the year I graduated from high school almost 20 years ago...the ceramic ball somewhat crudely painted with a cat that looks exactly like Gracie and the year 1998...the last construction paper ring that was once on a chain I made to count the days I would see Brian again when we were dating and he lived miles away...the crystal Noah's Ark that I received when Erik was born...the sparkling snowman that I discovered in my mailbox from a dear blog-friend and fellow WS mother last year. Each ornament means something to me and tells a story. I enjoy reminiscing as I decorate. I received two phone calls as I worked, one from Erik's teacher and one from the bus driver, stating he would be very late, and I had an extra hour to myself. The tree ended up looking lovely. I placed the ancient set of three wise men I adored as a child in my grandparents' living room on top of the television and hung the stained glass star in the window. I filled a crystal bowl that was once a wedding present with glass ornaments from the collection of our family friends who passed away and placed a candle in the center. I hung our stockings on the wooden railing of the stairs. I placed the poinsettia placemats my mother sewed for me on the kitchen table. By the time Erik arrived for lunch and his nap, the place looked great. Even my Christmas cactus is in the spirit, heavy with buds that will soon produce bright pink petals. Erik checked everything out and said, "Christmas tree!" I asked him if it was pretty, and he answered with the strange Cajun accent from nowhere that often flavors his speech.


After that, I worked a half day during Erik's nap. The phone seemed to ring all day long with someone wanting something. The pediatric cardiology center called to inform me that we needed to ignore the letter that would soon arrive stating that Erik was no longer required to have echocardiograms. The genetic counselors at the children's hospital apparently insisted we receive the studies yearly through age 5. While this means that the chance things may worsen is real, I have decided to give myself a year off from worry about Erik's heart and enjoy the good news we received after his study instead. Being in good hands at this particular clinic also provides a great deal of reassurance. I have enough to worry about now with Erik's worsening anxiety, growing difficulty being among his peers, and horrible sensitivity to certain noises. That's quite enough for me to handle now, and we are doing the best we can. I have even turned off most of my own anxiety about the holiday and am beginning to enjoy the sparkle. No matter what Erik struggles with outside the home, I am bound and determined to create a haven for him here.

Because Erik has been so severely delayed, this is the first year Erik has truly begun to grasp the concept of the holidays and the happiness that comes with them. Because of that, I am finally enjoying the magic most mothers take for granted, and I have the spirit of the season back. If I stop long enough to absorb what it all means, I feel comforted and am certain that no matter what happens to our son, he will be loved and cared for by something much bigger and more powerful than I can understand at this point in time.

Who knew there was hope for an old Grinch like me?

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Monday, November 26, 2007

Giving Thanks

My brain and my heart are full tonight. I don't even know where to start with this post.

Thursday morning we began a six-hour drive across the desert to visit Erik's aunt, uncle, and two cousins. It has been many years since I have been able to say I have been in the middle of nowhere geographically speaking. What made this trek especially spooky was the fact that before we left, I did a frantic load of laundry and in my haste forgot to extract my cell phone from the pocket of my jeans, rendering it nothing but a fancy paperweight in a matter of seconds. Not that I would have gotten a clear signal where we had to go, anyway. We spent hours traversing miles of volcanic rock and sagebrush, passing through newly-born ghost towns offering us nothing but sagging, eerily blank gas station signs and shattered windows. We stopped once to use the restroom at a truck stop, and Brian bought a cup of coffee that was dispensed from a machine stating it wasn't for wimps. It tasted like I imagined truck stop coffee would. We continued our journey and saw nothing else but an occasional herd of striped antelope for hours. This was Erik's first trip out of state. Although I was nervous about how he would do, he was, of course, amazing, as always, munching on cookies Boppa and Gua provided and watching Sesame Street for just the last hour of our trip.

The weather held beautifully, and we spent the weekend relaxing at Brian's brother's house in Idaho. Oh, yes, there is a God. I love this family to death. Amazingly, despite my neurotic/paranoid/antisocial tendencies, I am completely relaxed in their home, and my sister-and-law always greets me as if we saw each other just a few days ago. After Erik adjusted to the kids, he did fairly well, although he certainly didn't interact with them like a typical child would and clung to us the majority of the time. His cousins are aware he is different, although they have yet to understand exactly why, and they tend to be sweetly protective of him. We saw him make giant strides in a matter of days. He used the term "upside-down" correctly, much to my surprise, and played with his older cousin for an extended period of time. He insisted sitting with us the day his cousins enjoyed children's movies in the other room, and, although he did wonderfully overall, he still preferred our company over the children.

After a security check, we were allowed to tour the more public areas of the nearby military base, and the sheer bleakness of it all along with the heavy planes we saw sitting on the tarmac ready to rip into the sky brought stinging reality to my brain and a strange, persistent nausea to my stomach. It's impossible to ignore the fact we are at war in that particular setting and what that means to our family. We mingled with military families at the BX, a shopping facility that appears a lot like a less fancy version of Wal-Mart at first glance but feels very different. I was perusing a rack of incredibly-priced, fabulously-scented shower gel when I heard a very pleasant female voice on the loudspeaker announce, "Auntie Nancy, could you come to the jewelry counter, please?" I thought I was hearing things, but it just so happened that my oldest nephew had gotten separated from us and had asked a clerk for help. I am proud to say that I have now been called into action on a military base.

We slept well in general, although it was dicey at times. The nearby trains that shrieked every couple hours upon their arrival caused Erik to kick fitfully in his sleep or cry, but we had been warned by my sister-in-law before we arrived, and we left his reaction to chance. Was it difficult at times? Yes. Was it worth it? Definitely. It's these little things that serve as reminders that no matter what we do or where we go, there is no vacation from WS. By the last night, Erik cried the horrible, strange, colicky infant cry he still has not left behind at the age of 3 for at least an hour before he finally settled into a restless sleep. The next morning he very simply asked to go home.

It was the first time in a long time I wasn't itching to go home after two days on a trip. After traveling a bit in my younger years, I desire nothing but to be home. Thankfully, I felt as if I was home all Thanksgiving holiday. While being around typical children can be heart wrenching, I love my nephews with all of my being and am so proud of both of them and who they are becoming. Looking at their photos upon our return, I am shocked at how grown up they suddenly seem. There was just one moment during which I thought my heart would break into a thousand pieces. Without warning, I realized I desperately wished things had turned out differently for us. However, the rest of the time brought nothing but happiness, and I know that even in the midst of our challenges, we are surrounded by friends and family who love us and support us no matter what our situation brings. As far as an emotional hangover, it did attempt to hit me today, but I was so incredibly busy today that I didn't have time for it.

Instead, I spent the morning acquiring a new phone from a young man who instantly and inexplicably fell all over himself the moment I came through the door of his store. I joked with him and asked him if he was awake yet, which only seemed to make him worse. I finally completed our transaction and left with a brand new phone with a Gwen Stefani ringtone. I then spent the remainder of my day trying to complete four hours of bone densitometry scan reports, two trips to the vet, countless loads of laundry, and unpacking. By the end of the day, I found myself at the animal hospital nodding thoughtfully before a series of illuminated films showcasing the twisted, thickened insides of my cat, who seems to have been stricken with either cancer or irritable bowel syndrome. I chatted with a veterinarian while Gracie-Cat shook off the effects of a double dose of sedation used to tame her during the studies, which ended up costing nearly $400. As I was interested in adding a little weight to my vehicle with a snowstorm on its way into town after the appointment, I stopped to stand in line to pay $3.25 a gallon to fill up my Jeep. I was feeling thoroughly financially ravaged by this point. It was there I found myself rummaging through my purse to the hoarse screams of an increasingly conscious, pissed-off feline when I saw the empty window in my wallet and realized the flustered young man who had helped me with my phone in the morning had failed to return my drivers' license. As it was five minutes to five, I left the gas station at mock speed, peeling out in the parking lot, making it across the intersection to the wireless store just before I assumed they closed. The sheepish clerk reached under the counter and stammered an apology that made no more sense than our conservation from earlier in the day. I smiled but had no time to respond. I had a screaming, increasingly pissed-off cat with freshly shaved buttocks freezing to death in the back of my car and had just spotted a familiar truck with two familiar shadowy silhouettes inside turning off the highway just outside the store.

No time for deep thoughts or reflection. I had a little boy and his father to meet for dinner.

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Wednesday, November 21, 2007


The mountains stand silent guard
steeped in the ailing remnants of night,
prepared to accept the first blush of sunrise
over earthtone puffs of frosty sage

I stand guard over my towheaded boy,
still sleeping and mumbling of firetrucks and excavators.
I'm armed only with a cup of rapidly cooling coffee,
prepared to accept his first contagious grins
that come when he opens sky-colored eyes.

I sigh and allow the great wall inside of me
to lift with a creak to admit the memories and thoughts
that insist upon haunting me like rude houseguests,
and feel them trickle into my once wonderfully sleep-numb brain,
simply too heavy to hold back for another hour.

My heart aches sweetly as I watch him
slumber in a koala bear-curl, clutching the tattered remains
of a formerly perfect, fluffy stuffed puppy
received at my perfect, pastel baby shower.
I marvel at the feelings in my heart that still reach me
through so many years of twisted scars and damage.

This child lives because I care for him.

I am reborn this morning as he unknowingly returns the favor,
even as he sleeps.

I live because he cares for me.

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Monday, November 19, 2007

My Baby the Car Battery

When Erik was an infant, he cried more than other babies. When I put my nose to his sweet face, I could smell something strange. As I knew nothing about babies, I didn't know what to make of it. It was a combination of the sharp scent of peppermint and biting acid. We trudged along as new parents, rocking him, swaddling him, and soothing him constantly. I was finally aware of how difficult our situation was when his pediatrician looked at me and quietly asked how Brian and I were doing. The look on her face was deadly serious, and all of my feelings of exhaustion and depression were instantly validated. At one point, we were asked to feed Erik every two hours 24 hours a day. Every time the alarm would sound, I thought we were simply going to drop dead. After this failed to produce positive results for any one of the three of us, we were allowed to cease and desist. I was asked to cease nursing my baby and instead give him a type of "predigested" formula that cost $25 a can.

We took Erik to the hospital and put him under an x-ray machine. He drank a bottle filled with formula that would glow on the radiographic films. He swallowed the substance as they captured x-ray after x-ray, but the chalky liquid came back up into his throat so many times the technicians said there was no question he had gastroesophageal reflux and saw no point in continuing to irradiate our baby (One year later at the children's hospital in the city just mere minutes after we were handed our devastating diagnosis, I held our son in place at an x-ray machine while I sobbed all over the lead smock I was required to wear. An upright study performed while he ate a cookie would produce the same results).

It was then we were prescribed medication, and our lives changed. First, we gave him Reglan. That evening we had a baby mysteriously screaming in even more agony and spent some time on the phone with a physician who instructed us to stop this preparation immediately. After that medication cleared out of his system, we were given a trial of Prevacid, a medication that turns off the pumps in the stomach that produce acid. The change was immediate. My baby began to emit the soft scent babies should for the first time, and he no longer seemed to be wracked with pain. It was nothing short of a miracle after months of what felt like hell on earth. He has been on Prevacid morning and night ever since. When the doctor suggested we try weaning him long ago, we both laughed too loudly at this and declined.

Now that Erik is older, I decided to stop his morning dose of medication last week and continue giving it to him in the evening. This was two or three days ago, and he seemed to be doing fine. However, this morning he woke up grouchy and refused to eat hardly anything at all. His feelings were crushed when I scolded him for kicking me with his long legs as I changed his diaper, and he repeatedly worked his lips as if he had put a little piece of something in his mouth. He sounded junky and congested up into his nose. Before he could leave in his father's arms for day care, it was clear to me that the reflux was back with the exact same intensity as before. I could actually see his throat beginning to work trying to keep the acid down.

I was already feeling a little blue this morning. The sky is heavy with clouds and the holidays are looming over me like a glittery monster, complicated and heavy, and I want to ring in the New Year already. Seeing the ruthless symptoms of reflux manifest themselves in my poor son for the first time in years was a little unnerving and made me feel like the worst mother on earth. It was also a grim reminder of the darkness this diagnosis brought to this family at one time. I could have done without this today. I thought perhaps that there would be an improvement with age.

There hasn't been any improvement whatsoever.

Erik left sobbing carried down the driveway in his father's arms with tiny beads from the dissolved Prevacid SoluTab on his lips. I'm saying a prayer right now that the magic properties of this miraculous medication take hold in his gut before he is subjected to the additional, terrible trauma of being immersed in a group of squealing, laughing children.

All I can say is this: If I could marry the good folks at TAP Pharmaceutical Products, Incorporated, I would. Thank God for them.

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Friday, November 16, 2007


Yesterday was Erik's sedated echocardiogram. The three of us pulled ourselves together bright and early for our trip to the hospital's cardiac center, a massive, new building that bulges off the side of the neat, sand-colored layers of the original 1970s hospital structure like an expensive tumor. I had yet to set foot in this wing of the hospital. I drive past this place almost every day to retrieve work from a nearby medical clinic, and, quite honestly, most of my memories of the building are extremely unpleasant. On most days, I simply take my turnoff past the place without giving it a second glance or thought. It's just better that way.

However, yesterday I was forced to approach this new wing head on as we made our way across the parking lot and allowed ourselves to be swallowed by the glass enclosure of a motion-activated revolving door. Once we were spat out into a spacious, neutral-colored lobby softly illuminated by skylights and artsy light fixtures poking out randomly from blond end tables and walls, an older woman in a navy jacket with neatly-coiffed, caramel-colored hair sprayed into place appeared out of nowhere. She approached us and asked where we needed to go. Upon my answer, she quietly led us past a registration desk and a small waiting area through an unadorned, unassuming door as if we were entering some sort of clinical speakeasy. There was a nurses' station inside. Sara, the nurse behind the counter, instantly remembered Erik from when we were seen last year at the old facility across the street. She seemed genuinely shocked at how much he had grown and made a very wonderful fuss over him. Erik was instantly fascinated by the lamp sitting on the counter which featured cartoonish fish swimming in a happy but hopelessly infinite loop. Brian and I playfully debated about the correct names of all of the fish while the nurse smiled and prepared our paperwork. After I was given a clipboard and a pen, we made our way into the study room, where the walls were painted with more glee-filled fish swimming around a few bubbles and some sort of crude, colorful, ribbony stripe that reminded me of the remnants of a toxic but cheerful oil spill. Erik played with a wooden Thomas the Train table and exhibited his bubbly personality for Sara. We were soon joined by Karen, a technician whom I used to work with eons ago, and Dr. T, who greeted us warmly. Her hair was in the same fine, uncombed tangle I remembered from last year, and I smiled at this.

Erik was given a medication called Versed to sedate him. It came in the form of a pink liquid inside the thin barrel of a translucent syringe. He was given a taste and apparently decided it was the sweat of the devil. We managed to squirt the remainder of it down his throat, and the lights were dimmed. Erik played in my lap, and his speech began to slur slightly. His activity level, however, did not cease. Another half-dose was administered. Once he was in an obviously more quiet state, I laid him down on the sheet-draped gurney in the center of the room, and he stared at the ceiling. I laid down beside him with his head in my armpit and gently held his arms down. Clear gel was smeared over his bare chest, and the technician began moving the ultrasound wand over his skin. Brian and I looked up at the monitor as his heart became visible, seeming to thrash about violently. The sound of his heart filled the room occasionally, sounding like some sort of sloppy-wet sponge. The technician clicked a computer mouse, marking and measuring the anatomy of Erik's heart and blood vessels. Sara blew a few bubbles to entertain Erik, and they landed softly on both of us, popping wetly against my bare neck and arms. After the echocardiogram, black and white stickers were affixed all over Erik's upper torso, and lead wires were clipped to them for a quick ECG. Both studies were completely over before I knew it.

Afterwards we were instructed to sit in smaller, more typically appointed examination room. Brian and I asked each other how we were doing. We both reported we were fine. Brian prevented Erik from trying to run off in his drunken state or fall over as he investigated a collection of nearby toys. At one point, his forehead softly and slowly met the carpet, and he mumbled something I couldn't quite understand. At this point, he looked like a miniature, Budweiser-bloated, pediatric fraternity boy. Dr. T knocked, opened the door, and sat down with us to go over the results.

Completely normal.

As Erik's study was borderline abnormal last year, I was concerned that things would deteriorate, which is exactly what I have seen happen in other WS children. Instead, we were pleasantly surprised. She admitted she had no idea when we would be required to return for another study, as none of the the WS patients she had cared for during her career had ever had a completely normal study. Therefore, she would call the children's hospital in the city and talk to a geneticist there for further instructions and recommendations.

As we made our way out past the nurses' station, Sara and another nurse from Erik's last study congratulated us but admitted they were terribly sad they would not be able to see Erik again for some time. We said our goodbyes, and I drove us home while Brian sat in the back seat holding Erik's head to prevent it from flopping around. Within an hour, Erik was pushing cars and trucks around the house at warp speed, slightly unsteady but determined to return to his normal activity.

The tears came later in the afternoon with a vengeance, straight out of the blue. I could not stop sobbing. I was completely blindsided by this reaction which came with no warning whatsoever. It was at that point I realized I had not allowed myself to feel anything at all during the whole experience. I had been completely and utterly numb all morning, appropriately smiling, shushing and humming to Erik, accepting medical information as if we were watching a television show on someone else, and then going on with my day as if I had picked a dress up from the dry cleaners.

Why in the hell was I crying?

I cried because I was crammed full of shout-from-the-rooftops joy. I could now let my child sleep in an extra hour without worry he had passed away in his bed, at least for now.

Our son is fine.

I cried because I felt sweet relief. A whole year of wondering if his blood vessels were squeezing closed had ended with the best news possible. Erik seemed to be unusual within his own very unusual group of peers who carried the exact diagnosis. I'm the mother of a medical miracle.

Our son is fine.

And I cried because underneath the burden that had been lifted was yet more worry that had been exposed to the light that hadn't been erased like I naively hoped it would by this news. I felt shame this crossed my mind at all. However, there were and would always be 20 odd genes missing that would wreak havoc on his body and brain throughout his life. After all, you can't just start subtracting genes from a fetus and expect things not to be a teensy-weensy bit fucked up.

Our son is not fine.

When I sorted through it all, though, I knew I was crying primarily because I was insanely happy. Happy our kid has crushed so many odds, proving to be the exception to almost every rule. Happy he insists on thriving and seems to live to charm the pants off of this very cranky, incredibly unfair world of ours.

I cried because our son is just fine.

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Tuesday, November 06, 2007


Monday, November 05, 2007

Hand in My Pocket

Ten days until our sedated echo.

Today I called a slightly swanky but highly recommended local photo studio and left a voicemail expressing my interest in a genuine photo session for Erik. My last two trips to Sears have yielded absolutely gorgeous photos, but this required standing in line for hours while their computer network malfunctioned on another continent, repeatedly dragging my screaming child in front of the camera, and, as I crawled around on the floor on my hands and knees trying to get Erik to cooperate, eventually realizing there was a river of sweat running down my spine and into my butt crack because the good folks at Sears seem to think it's necessary to keep the tiny room they use the exact temperature necessary for firing clay pottery. This new studio offers a nice variety of healthy snacks and chilled wine for exhausted parents while the professionals take care of the rest.

I have changed my theme song these days. I'm an emotional mess this week, but anyone would be. Speaking in sweeping, general terms, things are looking up.

Everything's gonna be fine, fine, fine.

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Sunday, November 04, 2007

A Place for Us

There's a place for us,
A time and place for us.
Hold my hand and we're half way there.
Hold my hand and I'll take you there

-- "Somewhere" West Side Story (1961)

I didn't make it until 6 this morning, but I slept, and I'm happy about that. My head and my muscles ache slightly from clenching my jaw and falling into the kind of laboring, thinking sleep I used to around the time of our diagnosis when life was more intense. I certainly don't feel rested, but at least my brain has rebooted and I can operate simple household appliances without injury once again.

I spent most of yesterday on the love seat with Brian and Erik running around me doing various activities. I did not nap but managed to eventually drag myself to the bathtub, put on clothes, and prop myself up to look lifelike. By the time it was necessary to apply makeup and prepare for the church meeting on youth ministries in the early evening, I had sagged again and barely had a pulse. I tried, nonetheless, to spackle myself with undereye concealer and smooth my hair, half of which which decided to take on the consistency of brown pipe cleaners. We drove to the church and walked Erik to the nursery, where I was previously told we were welcome to leave him during the meeting despite his advanced age. As soon as he saw where we were, he began bawling, even though the room contained only one babysitter and a completely silent little girl sitting at a little table eating a snack. Erik was simply beside himself. The back of his neck flushed into a shade of angry red as his growing anxiety gripped him. Brian scooped him up and thanked the caregiver. We then went downstairs to the youth center, a large, welcoming room containing a clean kitchenette, a short stack of warm pizza boxes, comfortable, chunky furniture, and a television on which they planned to show a Pixar movie for the older kids. Two noisy, chest-high boys played a brutal match of air hockey outside the door in the hallway. Erik ceased crying and accepted a slice of pizza. He ate it at a table with the help of a teenage volunteer. I began speaking with a couple women about the meeting, and they informed us that it would be held at another location down the road. I almost backed out at that moment. I certainly wasn't planning on leaving Erik blocks away, but we got into our car and followed their directions to a cluster of tall, craftsman-style homes poking up and forming their own blocky, trendy skyline. We parked and walked to the clubhouse. To my complete dismay, I saw the exact opposite of what I was expecting--mostly impeccably dressed parents our age enjoying wine and a variety of classy finger foods in a lovely setting. I looked down at my leather sneakers, the laces of which had been replaced with ones which were approximately three feet too long and were balled into a series of intricate knots that would make any sailor proud, wrinkled blue jeans, equally wrinkled cotton t-shirt, and mismatched jacket and purse. I already felt off-balance, and the meeting had yet to start! Brian and I both winced and laughed at our plight. Our pastor welcomed us inside and offered me wine from the bottles chilling atop a marble bar. Brian located the coffee. We affixed some preprinted name tags to our chests and were invited to sit at a table to socialize with unfamiliar members of our congregation, the bulk of which admitted they had only been in town for three years or less. They marveled at how unusual it was that I was a true native, having been born here at a hospital that met a wrecking ball long ago to eventually become the proud site of the Phoenix Inn. They also seemed to realize how annoying it might be to consistently encounter people like them who swell the population at an alarming rate and disfigure this once peaceful mill town. I halfheartedly tried to retain my cynicism and aloofness but warmed up to them quickly. We met a refreshing variety of people, including those who attended different colleges, were from different states from all over the country, or were actually Catholic for most of their lives. After a lengthy period of socializing, we were shuffled around and instructed to sit with more people we didn't know. I ended up miles away from Brian. We played a game of trivia, which was fun, and I sat across from a delightfully nerdy, obviously brilliant husband who occasionally retrieved his Blackberry from his back pocket, glanced at it, and whispered the scores of both of the football games we were missing to me. We celebrated quietly after each report. The woman next to me wryly told a shockingly inappropriate story about once attending a larger, box-type church across town, her horror regarding the aggressive children's program during the service they attended, and how her husband warned her not to drink the Kool Aid on their way out out of the building. I stifled my laughter under my hand, but I felt my eyes begin to water and tears threatening to spill from the corners. I simply couldn't help myself. Hilarious. Er, I mean, totally inappropriate.

Once the meeting started, we were provided stacks of pastel Post-It notes to write our ideas down on and later attach to a large board. There was also a sheet with an impossibly optimistic number of blanks to hold the names of people who wanted to assist with different types of children's activities, inlcuding the Christmas play. I suddenly understood the purpose of the wine. Have I mentioned lately how much I tend to dislike organized religion AND children? I marveled at the fact I was sitting in this meeting at all and yet how comfortable I was. I reached for a pencil and wrote: SPECIAL NEEDS SUPPORT. (COUNSELING?) I don't feel any sort of heavenly pull to lead a children's group or spearhead a major campaign for anything, but I can't deny there is something happening in me. I'm at a point where I could be of use to a parent who has found themselves in the dark place we were in a couple years ago. Something is telling me in a less than subtle manner to leave myself open and available. As the other parents spoke of their needs and wishes, it became obvious we were likely the only parents who would simply like things to be easier for a child with special needs. We don't have the luxury of pretending things are perfectly normal anymore. After the meeting I approached our pastor, and he expressed his desire to meet with us and find a comfortable place for Erik and our family to be.

The pieces are beginning falling into place now. I am beginning to see the big picture and where we might fit into it. While I sat in the midst of these very polished-appearing parents who seemed to have it all together, I was aware of the fact I would have been feeling very sorry for myself a couple months ago. I had my moments when I felt myself slip a little bit, but, for the most part, instead of despair I very clearly saw opportunity and a way to be of use to someone. I asked the pastor just exactly where the kids with special needs are. He admitted there were some but said the woman sitting next to him during the meeting would know more about that. There's obviously a gaping hole that parents like us are falling into. It would be so easy to give up and stay home. Nobody likes feeling invisible, and I intend to do something about that. I sure as hell felt invisible at one point. I tried to reach out, even having the associate pastor out to our home, but I was obviously unable to express myself or ask for what we needed. I didn't know exactly what it was we needed, anyway. I became invisible, and we gave up and stayed home.

However, that was then, and this is now.

When we returned to pick up Erik, he was sitting happily on a teenage girl's lap watching a movie. She reported that he "did amazing." He seemed positively tickled to see us, even clapping and laughing. He giggled like a school girl. He seemed less than traumatized by the whole evening, and relief washed over me.

Why can't it always be this easy?

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Saturday, November 03, 2007

Fugue State

I have been wide awake since 2 a.m. for no good reason. That will teach me to try to survive without a growing dependency on Unisom. Honestly, I have no idea what the delightful little baby blue pills will do to my insides long-term, so I try to live without them most of the time. I'm sure my liver has the consistency of applesauce by now. However, I think it's time to ask my doctor for something. Anything. I'm eating right, working out every day, and limiting any substances that interrupt sleep. Unfortunately, even though I was due to see my doctor in June, they now are unable to get me in until February. I would bet money that if you asked any once reasonable, professional person who suddenly and inexplicably found it necessary to sit naked on a subway or slap strangers randomly in the midst of a psychotic break, they have already attempted to see a physician for months.

Whenever I need to feel my best and be alert, such as for tonight's youth meeting at church, my body completely betrays me and attempts to sabotage everything by turning me into one of the sleep-deprived walking dead. You wouldn't believe the massive amount of undereye concealer I go through. Erik began sobbing at 4 a.m., a new trend these days, so I went downstairs and crawled into his little bed with him. Overall, I was thankful he put a stop to my slightly groggy online shopping spree. However, I couldn't sleep even with my face in his sweet-smelling hair, of course, and discovered I had to use the bathroom. I tried to gracefully traverse the rickety bed rail and sneak out without waking him. Now that I think about it, I looked pretty darned ridiculous. I would move a few inches and stop. Move a few inches and stop. It was like mommy Claymation. I successfully made it out of bed and stood motionless over him in my fuzzy, blue Bea Arthur bathrobe with my hair in a swirly, looking like a disheveled burgler. Although I was quiet as death, he somehow heard my body at a cellular level and began sobbing yet again. Ironically, hours before this when I had given up on sleep, he slept deeply through my almost breaking a toe as I accidentally booted a heavy, sloshing sippy cup across the hard floor in the dark just outside his door. Go figure. I will live in sweats today, skip my planned trip downtown for a Jazzercise class, and go the love seat to die quietly in front of my beloved Oregon Ducks.

Brian is in Erik's room now. I can hear their sleep sighs on the baby monitor that flickers on my desk.

Just eleven more days to go before Erik's sedated echocardiogram. I would be a fat liar if I said this wasn't heavy on my mind. This week brought a mysterious sense of doom and a ready supply of irritability. It's not that our boy isn't the picture of health -- it's just that nobody seems interested in monitoring anything related to his syndrome here. Most of the doctors here haven't even heard of WS. I'm generally not fond of surprises and hope all goes well. Putting my child under any sort of sedation isn't my idea of the safest thing to do, either. I will throw myself a party when it's all over--until next time, anyway.

That's it for now.

Over and out.

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Friday, November 02, 2007

Erik, Foxy, and Ms. G.

Thursday, November 01, 2007


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

All in all, it was a very good night.

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