Erik Quinn: The Heart of a Family: October 2007

Wednesday, October 31, 2007


Erik's week has been rough around the edges. He now sobs each time we drop him off at school or daycare. Yesterday it was obvious to me he was delaying his entrance into the school building by allowing himself become distracted by his surroundings and hoping I would play along. He drug his feet as he craned his neck to watch the buses wheeze to a stop in front of the school. He became visibly frustrated and angry when I tried to drag him into the building. He began falling all over himself, trying to sag to the pavement, and I carried him for the very first time into the building. By the time we entered the classroom, he had wrapped both of his long legs around me and was trying to scale my body like a koala bear climbs a eucalyptus tree. I could hardly pry him off of me long enough to set him on the floor and ended up drooping to the floor with him for a time to watch the other children playing without a care in the world. I finally peeled his coat off, hung his backpack in his cubby, and took him to a fairly quiet, kid-free spot in the room. When I left, he was red-faced and bawling once again. I winced at a nearby staff member and made my exit.

Normal things children enjoy seem to be the worst kind of torture to my son.

I don't have much of an option except to shield him from the world, which isn't practical. I spend enough time running the food processor in the bathroom or in the garage, muting the television when there are noises that seem to scare him, and keeping away from extra situations with children that we can avoid without any consequences.

After a police car with its siren blaring whizzed by our property last night, Erik began screaming in agony in his little bed. I ran into his room, turned on the light, and crawled next to him. His tears would stop and his chest would cease heaving eventually, but each time I tried to leave him, he would begin talking of sirens and fire trucks, and the sobbing would begin again. I let him cry himself to sleep, which seemed like it took forever but in reality took only a few minutes. Brian and I went back to watching the season premiere of one of our favorite shows. Eventually there was a commercial featuring the sound of (you guessed it) police cars. I tried to lunge for the remote, but was too late. The screaming began again.

I think his hyperacusis is, if anything, worse, especially as it applies to other children. I would now classify this problem as severe and debilitating. It is now paired with an intense, expressible anxiety that seems to have him in a death grip. While the noises of laboring heavy equipment do not seem to affect him as they once did, being around other children is becoming even more difficult. I am beginning to feel isolated once again. It's hard not to feel like a complete freak show this way.

I consulted my book, Understanding Williams Syndrome, last night as we went to bed. As I cracked it open, I informed Brian that I intended to understand Williams syndrome RIGHT NOW.

We both laughed.

The book was reassuring, although it doesn't solve any of my problems at the moment. Hyperacusis has been studied, and there seem to be absolutely no anomalies of the ears in WS. Therefore, his ear anatomy is likely perfect. Something in his brain scientists have yet to completely understand makes it difficult for him to process noises. The same brain malfunction also renders it easy for him to complete the lyrics to the song "Glamorous" by Fergie out of the blue when I'm singing it preparing dinner. It's a curse and a blessing at the same time. It was also quite clear in the book that this is not a ploy for attention and is undeniably real. Only time will tell if it fades as he grows or remains with him his entire life. It is so severe at this point, I doubt it will ever completely resolve. There were coping techniques listed in the book, but most of them were for slightly older children and adults. What was reassuring to me was that it was obvious we were doing everything correctly. I now feel like it's perfectly acceptable to use what they called "environmental controls," removing upsetting noises like noisy appliances, as we have done for three years. It said absolutely nothing about toughening up a child by exposing him to noise. It's pretty apparent to me that this wouldn't work, anyway. I read about acknowledging a noise, offering reassurance regarding it, and explaining where it comes from. I am doing all of these things, although Erik becomes so upset that I sometimes can't reach him through his agonized yowling. I keep talking, anyway.

We were invited to attend a meeting Saturday night about youth ministries at my church to give us an opportunity to express our dreams for our children. I have sent a letter giving them advance warning I will be asking questions about children with special needs and explained our trouble attending church. I was honest and wrote that I was fresh out of ideas. In the meantime, we will attempt to attend Halloween festivities with Erik's friend Dominick and his family, but I wonder if that will become torture as well. I'm willing to make an attempt, though, in case he enjoys himself. Kathy has already warned us their home is slathered in decorations, some of which make frightening noises, and offered special instructions on how to enter their house in a quiet fashion. While this problem remains tragic and debilitating to our family, I would be lying if I said this didn't make me giggle a little.

Sometimes you just gotta laugh.

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Monday, October 29, 2007

The Basic Principles of Wound Healing

Healing from any wound isn't a pretty process, and it certainly doesn't happen overnight. After the initial insult, a good cut usually bleeds for a time. Hemostasis, or ceasing the flow of blood, is best achieved by directing attention to the wound and applying direct pressure. Most of us would then apply a clean bandage to a cut until it heals, not giving a second thought to the miraculous process occurring underneath the sterile dressing.

In my own opinion, my grieving has been similar. There was the initial wound afflicted by a panel of genetic experts in a stuffy examination room filled with ancient toys at a children's hospital. There were some tears that found their way through a thick fog of shock on the drive home, and I pretty much bled saltwater for months after that. I learned to care for my wound, hiding it from the outside world and keeping it protected from words or situations that would inflame or reopen it, disrupting the healing. Slowly but surely, healing occurred, but I had to care for my wound daily. Ignoring it only made it more infected eventually, even if it seemed fine for a few days. It is still a little tender at times, and, although my skin is much thicker than it used to be, I still avoid situations that may cause irritation. Am I afraid of pain? No. Taking a detour now and then to avoid it just makes life easier for me, and I choose not to torture myself by doing something that causes me more stress. As time passes, I find myself more able and ready to attempt things I once avoided.

I knew the initial stage of the healing process was complete the day I came out of early intervention parent group without tears on my face or acid in my stomach. Instead, I found myself walking calmly out into the fresh air holding two phone numbers -- one for a local salon that did pedicures and one for a spa where I could get my eyebrows waxed.

Oh, yes. I was going to be just fine.

I have always been half tomboy, half girly-girl. The tomboy half of me likes to have dirty, scarred hands for practical purposes and shrinks from the thought of having my ivory flesh kneaded like bread dough on a massage table or having my toenails painted with high-gloss polish. The girly-girl half of me desperately desires these things but has settled for whatever she can sneak by the tomboy half, which isn't much. My fingernails are painted occasionally, and I now almost always wear crimson toenail polish. Since I had Erik, I was coaxed into having my very first full-body massage, which was a little disturbing but something I would definitely do again. I take more bubble baths now in the giant, jetted tub that sat collecting dust for months after we moved into this house. The tomboy half of me has been my boot camp instructor. She has screamed at me to get up and face my fears when I felt like lying down and giving up. Now that I have gotten up, it's the girly-girl half who is just as persistent, telling me it's time to shine. She was the one who applied my lipstick every day, despite the fact the rest of me looked like death, as my tomboy half shoved me out the door to appointments with a basket full of unhappy baby. I need both halves, but these days, the tomboy side of me has relaxed a bit and let girly-girl take over.

This month I suddenly decided my eyebrows make me resemble Abe Vigoda. I dug the phone number I had scored from parent group out of the bowels of my purse and set up an appointment with Judy, another special needs mother who has her own business at her home. If my memory serves me correctly, I was told in parent group that her 16-year-old daughter has lissencephaly, a malformation of the brain that causes its surface to be smooth instead of convoluted. This often results in severe mental retardation, seizures, and poor control of movement. Her daughter lives in a hospital facility almost three hours away and apparently will be there for the remainder of her life. Judy spends half of her time in a rented room in the city near her daughter and half of her time here in town, tending to her son and her flourishing waxing/facial business.

The day of my appointment I dropped Erik at school, ran home to print out some correspondence I had transcribed for the ophthalmology offices, and printed out directions to find this little salon. It ended up being located in one of my favorite older neighborhoods in town filled with beautiful ranch-style homes and towering pine trees with ancient, fat trunks. I located the house but was early, so I drove to a nearby park, sat in my Jeep, and watched the leaves fall from the trees, spiraling through the morning sunlight. They were as big as my hand and slapped wetly against the hood of my vehicle. The ones that fell to the asphalt became almost transparent, like damp tissue paper. I glanced at my cell phone for the time and drove slowly back to the house, finding my way up the long driveway and parking in front of the garage. I followed a politely-worded sign and walked around the corner to find a tiny cottage with filmy, white curtains covering windows and French doors. Judy was making her way to the door at the same time, and we introduced ourselves. She ushered me in and showed me where to set my things on a wooden chair in the corner. She already knew I was a special needs mother, and she asked me about Erik's condition. She was familiar with WS but was surprised to learn about the intense anxiety that often accompanies it and Erik's own difficulties being in groups of other children. Most people tend to assume that kids with WS are always friendly and unafraid, as the social aspect of the syndrome is the focus of most articles. From what I understand, the social needs of people with WS stem from anxiety and the need to connect with others to calm themselves and gain acceptance.

She placed a thick towel at the foot of the bed in the small room for my feet and instructed me to lie down. The bed was heated and seemed to hug the contours of my back, and I instantly felt my muscles relax. There was only the sound of our voices in the small room. I was surrounded by the light filtering through the sheer curtains and romantic decor, including vases of dried flowers and shelves of skin treatments in pretty packaging. She began to talk about her daughter, and it was apparent to me that although she was open to voicing her opinion on this subject, she was likely being more honest than usual with me. She told me of women who couldn't understand why she tortured herself by spending time at the hospital every other week and how it would be best to "let go" of her daughter, as if she had passed away. I sensed the anger in her voice as she explained these same woman had children and were in the middle of activities such as happily carting them off to soccer practice at the same time they gave her this advice. Another mother once responded to her fears that people would never accept from her daughter by telling her that her child would always be accepted in her surroundings if she was dressed in cute clothing and was clean. As this was something she could control, she made it her mission to travel to the hospital, lay out her clothing for the days she was not there to dress her, and assured that her hygiene was taken care of. She explained that this was something she could do as a mother and felt it was important. I marveled out loud at how strong she was. Growing up here, I knew how limited services must have been at the time that she and her daughter needed them. She sat in parent group, too, but it was much smaller, as there were only seven families enrolled in early intervention just over 10 years ago.

She painted smurf-colored wax around my brows and began the hair removal process. I was told to shut my eyes to prevent my eyelashes from becoming trapped in the hardening goo. I listened to her voice as the anger in it subsided. I heard a hint of exhaustion take its place, and I caught the faint scent of nicotine on her breath. She affixed strips of muslin to my brow over the wax and efficiently yanked them off. The girly-girl half of me nodded knowingly and smiled while the tomboy half of me yelled "Hoorah!" I was allowed to grip a hand-held mirror to inspect the beautiful damage. Instead of Abe Vigoda, I saw myself--only with movie star eyebrows. She then took a tiny, plastic comb that looked like something Barbie would use on her glossy nylon locks and combed my brows straight up.

Oh. My. Gawd.

It was at this point I squealed out loud. Abe Vigoda was back. Please, lady, DO SOMETHING! After marveling at how thick and luscious my facial hair was, something I hope to never hear again, she expertly trimmed my long-neglected brows and I was back to looking like a movie star again (and not of the Planet of the Apes variety).

She told me to sit up slowly and fluff my hair back into its usual style. She called me gorgeous, and I tipped her, telling her I'd see her again in a couple of months.

Unfortunately, by the time Brian got home from work, both of my eyelids were bruised, and I resembled George Foreman after a nasty fight. However, by the next morning, I was back to looking more like Marlene Dietrich again. Although I'll probably stick to mostly pedicures from here on out, I have no doubt girly-girl will lead me back to that little cottage for some tender, loving hair removal from time to time.

Why not?

At this point, I'm a freaking healing expert.

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Sunday, October 28, 2007

Make it Stop

Yes, I'm still alive.

It's quite clear to me why many people overdose on medication. They just want the pain to stop. It's as simple as that. I am afflicted by one of my infamous headaches, and scooping my right eyeball out with a melon baller has never seemed so tempting. I have tried Advil, aspirin, Aleve, Excedrin, ice cream, sleep, a warm bath, darkness, pressure points, sex, caffeine, 40 gallons of water, herbal tea, light, fresh air, bourbon, praying for relief, praying for death, a blanket over my head, moaning in agony, cuddling with Erik, and ice packs to no avail. I'm out of ideas, and I'm on day two now. I slept until after eight o'clock this morning and woke up to bright sunshine, thinking I had died in the night. If I sleep in, something is just not right. The pain began Friday night, part of which I spent in Erik's room after another one of his nightmares.

Erik and I did manage to get to my folks' house yesterday. My Aunt Jane was there, too. We watched the Oregon Ducks play USC. Despite my blossoming headache, I couldn't help but scream along with the rest of them. My millions of nerve endings did a painfully slow version of the wave around the circumference of my skull. Erik used to cry when our teams scored touchdowns. Although he still jumps at the sound of cheering, he will now put his hands up in the air and yell, "TOUCHDOWN!"

I hope to write more tomorrow, but at the moment I need to go find a place to lie down and die.


Wednesday, October 24, 2007

Another First

As I reached to put my lunch in the microwave, I felt my nose begin to tingle with the threat of a sneeze. I quickly finished what I was doing before it overcame me, as it felt like it could be one of those full-body, unladylike sneezes that one should not attempt whilst balancing a plate of delicious, highly anticipated food in hand.


Erik was playing in another room at the time, and I had no idea he could hear me at all until I heard his little voice.

He said, "Bless you, Mama!"

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A Game of Tag

Stacey at All Moments Remembered tagged me, and I finally have a moment to sit down and participate. My participation can be hit and miss because of time constraints, but I enjoy being remembered this way. It also may take me a fortnight to even begin to respond to your tag. My apologies for that! This particular tag asks me to list seven random things about myself. Once again, this sounds much easier than it actually is, but here goes. Since it is still early, I'm not sure what I'll come up with. My apologies in advance.

One -- Once again, I admit to be a teensy bit of a voyeur. I enjoy taking a walk at dusk and quickly peeping into the windows of homes that line the street, attempting to determine what people are eating for dinner, what they are doing together, or what show they are watching on television. Looking at this slightly disturbing habit, I have concluded it stems from living alone for so many years. I used to jog a lot and picked this practice up on runs through the neighborhood, as I was lonely and wondered what people would see if they looked through my window later in my life. Please don't call the police if you see me walk by and wave. Invite me in for coffee.

Two -- Although I have a rich imagination and don't consider myself a Puritan in any fashion, any of my dreams of a remotely naughty nature are almost always totally and completely censored in various ways (fig leaves, cut to another scene, instantly wake up, etc.). Although I find this highly amusing, it has always been more than disappointing and frustrating. I mean, who wouldn't want to consume a chocolate sundae stark naked with CNN's Anderson Cooper? On the other hand, my dreams of violence are, unfortunately, in graphic Technicolor. I wonder what a psychiatrist would say about this. This is exactly why I stopped going to see one.

Three -- I have an obsession with puppets and marionettes of any kind.

Four -- Unfamiliar children still tend to scare the crap out of me, especially of the typical variety. I was formerly the quiet woman in the checkout line who didn't always say hello to kids like my son. I could freaking kick myself for that now. I say hello now.

Five -- I can easily consume a giant pizza or at least seven items from Taco Bell by myself (and have). I have gone to dinner with more than one fellow who liked what I ordered and was disappointed (and secretly impressed) to discover he didn't get half of my entree when I was finished eating. I also tend to eat when I'm sad. I did this off and on for years. Thank goodness for a little something called Weight Watchers. Thanks to WW, I already lost half of the HAPPY weight I gained this weekend.

Six -- My celebrity encounters include Henry Winkler, Ginger Rogers, Siegfried (of Siegfried & Roy), and Kevin Costner.

Seven -- My biggest pet peeve: We all judge people to some degree, as it is sometimes required for survival, but when a person is judged because of their differences, sometimes even beyond their control, especially by those who readily declare themselves more righteous than others, I wonder sometimes what year this actually is and if there is hope for this world at all. This really saddens me, as it tends to generate hate, causes great pain, and pushes people away, even if that wasn't the original intention. Maybe we should spend less time trying to change, alienate, or "save" people by trying to make them like us and more time loving them just as they are. There doesn't have to be agreement. Just love. It isn't always easy, but give it a shot. You might just be surprised at the outcome. Your heart and your world might open like you never imagined they could. I'm also terribly sad because I feel that this phenomenon has created hate in my own heart, diminished my own capacity for love and acceptance for those I don't agree with, and extinguished some of my trust in others.

There you have it. More of me, whether you wanted it or not.

You may consider yourself tagged if you wish. List seven random things about yourself and tag seven others. Thanks, Stace.


Monday, October 22, 2007

Surf 'n Turf

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

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

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

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

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

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

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

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

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

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

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

It was completely worth it!

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Sunday, October 21, 2007

Great Video

Thanks to Noel for this little gem. This moved me to happy tears.

Friday, October 19, 2007

Convention News

From the WSA website regarding the 2008 national convention in Garden Grove, California. I like the theme they chose. It's getting closer!

Dare to Dream; The theme for the 2008 convention reminds us all of the importance of allowing our children/students/patients with WS to reach for the sky and the necessity for us as parents/teachers/medical professionals to do all we can to provide them with the very best opportunity to make their dreams come true. Recognizing our need for professional assistance to acquire the latest in educational, therapeutic and medical strategies, techniques and treatments to help make dreams come true, we will provide daily keynote sessions from esteemed professionals followed by three 90-minute workshop blocks each day. During each block there will be a variety of professional and parent-led sessions of importance to parents and professionals working with children and adults with Williams syndrome of all ages.

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Thursday, October 18, 2007


The house is filled with the rich, sweet scent of turtle brownies baking. I finally had a chance to bake some for Jeff, the bus driver. I will enclose one of my homemade information cards on Williams syndrome so he will finally know the reason Erik rides his bus. I rarely find a natural, comfortable opportunity to share information about what makes Erik different, so I am learning to create my own ways to accomplish this, preferably after a person gets to know Erik for who he is. In this case, I figure the guy might be curious and should know, since he provides care for my son. Erik calls Jeff the "screwdriver."

School + Bus + Driver = Screwdriver.

Makes perfect sense to me.

When they pulled up to the house on Tuesday, I saw Erik's blond head pop up behind the steering wheel. Jeff taught him how to press the button that would open the door for me. Of course, there was a great deal of horn honking as well.

Erik is doing great. This is going to be a magical year for him, if what I have read in the WS literature rings true. He sang all of "Twinkle Twinkle Little Star" several times at dinner at various tempos last night while Brian and I stared at him wide-eyed, and he showed me where Stinky Dog's tail was this morning ("Here's tail!"). He works out with me more and more each morning like a tiny personal trainer, telling me to "Lift leg!" and "Reach!" His heart is on his sleeve these days about the people he sees or misses. If he sees vehicles that resemble the ones friends or family members drive, he begins talking about them, craning his neck from his car seat to see if they are inside when he used to sit and drool, unaware of the world outside the car. He knows the difference between a Subaru and a Ford. He is becoming more emotional, and there are now more obvious reasons behind his actions instead of just mysterious, hysterical reactions for us to decipher. He tried unsuccessfully to fight off tears when I left him at class this morning. He tells me he is glad to see me and that he missed me.

I dropped off the collection of baby things I mentioned earlier that has been sitting in the back of my Jeep. I said a quick prayer about this, as I wasn't sure how it would feel. As I carried the baby bathtub and several diaper boxes full of clothing to the back of the Goodwill truck, a passerby spotted my donations and asked, "How old is the baby now?" Surprised, I set my things down at the back of the truck and announced that he was 3. I smiled as I turned away. I felt nothing but proud. I remember how slowly the months ticked by during Erik's infancy, and time goes too fast now. No more counting months, weeks, days, minutes, or agonizing seconds, wishing for time to pass, waiting for things to get easier. I'm letting the past go. I need my strength for what lies ahead. The road ahead is going to be the most difficult one I have walked, but I'm ready for it. There are many mothers who have walked this exact path before.

I'm feeling fabulous these days not having to lug around an extra 35 pounds, and the dense brick of grief lodged in my skull that I described in my first posts feels even lighter. Sure, it's still incredibly heavy, but I'm accustomed to it now. It feels more like a natural extension of me, like one of my limbs, and less like a tumor or a foreign body inside of me like it used to. Even simple creatures like oysters learn how to make pearls out of the grains of sand that cruelly chafe at their delicate insides. There will likely always be grief, but I'm not drowning in it anymore. It's part of me, and it's important.

I believe I have come a long way since Erik was born in just about every way. I am still amazed that it's possible to feel this good again. In short, I'm myself again. I haven't really been me since I started this blog. I ran into Bev's (Erik's former therapist) friend at hippotherapy last week, and she told me how incredibly proud Bev was of me. My heart swelled when I heard that, because it has been a real struggle, but I'm making it, and people can see it now. I thought that this would be all about Erik, but I have gotten to know myself a lot better than I ever wanted to or imagined was possible. And now it's official...

I'm back, baby.

So standing at this fork in the road, I am unsure what to do next. I am now thinking about pouring this energy into some sort of book. However, there is so much story left to tell, so I'm torn.

In any event, I'm me again. I will never be the same, but it's clear that I'm not supposed to be.

What's important is that I'm me.

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Wednesday, October 17, 2007

Law & Order: WS

A witness on Law & Order last night had Williams syndrome. Apparently, the world is beginning to sit up and take notice of WS with all of the new articles and studies making their way into mainstream media.

My take on the episode: Corny but entertaining as usual. I normally love this show because it's normally a fun, unrealistic escape, and I really like the characters. The girl with WS acted fairly realistically and had a couple typical but almost laughably exaggerated features, including jacked-up teeth and bad eyesight, making her look a little like Jerry Lewis. It is readily apparent to me that the actress probably didn't really have WS (the nose was all wrong), but they obviously did their research. When she was interrogated about the night her mother was assaulted and raped, she had what was said during the attack memorized, word for word. I can see Erik doing that.

Brian and I both laughed out loud when she was in court and the judge's gavel came down. The little girl screeched and covered her ears. We knew that was coming!

Here are a couple short clips.

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Monday, October 15, 2007

Medical Incredible

Note: Unfortunately, the video I chose to feature has been removed from Myspace TV. I will keep this post intact for the comments. - N (12/28/07)

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There's nothing like the sound of a child screaming at 3:15 a.m. I found him with his light on, sobbing on the floor and muttering to himself. Brian and I tried to put him back to bed three times, but he would simply crash to the floor again, turn his light on, and sob in a ball.

"Flashing lights. Horns. Wheels. Very fast. Corner."

He's now snoring away in bed with his father.

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Sunday, October 14, 2007

Book Talk

I finally received the book I ordered, Understanding Williams Syndrome, from Amazon yesterday. It is quickly apparent from flipping through it that it will be a reference we are extremely thankful to have in our library. I am more than pleased with this purchase. The table of contents is arranged in outline format, so it is easy to see exactly what each chapter contains. Overall, it also seems to be written in plain English and much easier to digest than I anticipated it would be. It seems to contain more than enough fascinating scientific tidbits but an equal amount of real life information to help us survive and cope, including specific recommendations we can employ immediately, as promised. Of course, I am at home with my nose in a medical book.

We once again battled devastating hyperacusis yesterday. I took Erik to see friends of ours, and it was initially a complete disaster the moment we stepped through the door and he heard their children making the normal noises all children make. He climbed me, straddled me, and held on for dear life, bawling his eyes out. He is getting so big that when he does this, it makes walking anywhere quite difficult. I am beginning to feel like a telephone pole with an elephant clinging to it. Erik's sleep has been hit and miss lately, and when he is tired, his hearing seems even more sensitive, if that is possible. I often have a difficult time believing this is the same kid who failed several hearing tests when he was born! Luckily, our friend Alan was nice enough to take Erik on a quick motorcycle ride and over to meet the neighbor and his chickens. He seemed to calm down immensely after that but was still quite jumpy. Once both of their children hit the sack, Erik's personality did a complete 180, and he was adorably chatty, climbing over all over us adults after being virtually comatose for an extended period of time. This is such a frustrating mystery to me. In our day to day life, hyperacusis is by far the most disabling part of what comes with this syndrome. It can make or break any outing instantly. I have never been this aware of my surroundings in my life. I know precisely where the milkshakes are made in restaurants and the exact noise the UPS delivery van makes when it backs up. Even when Erik is not with me, I am acutely aware of sounds and take mental notes on them if I believe they may be upsetting to him in the future. I took a quick peek at what the book said about this particular problem, and they recommended making headphones or earplugs a part of play to gently convince a child to wear them later in a noisy situation. There were also descriptions of children exactly like our son for whom even applause during church is upsetting and calls for a child's immediate removal. Apparently, I'm not the only mother sitting in the hallway at church. Our upcoming trip to California on a small plane has the potential to be a nightmare, and my stomach does flips just thinking about it, but we have plenty of time to prepare. The flight is almost always a deafening, bumpy one during which I can't help but think of the crash scene from the movie Alive or start singing Patsy Cline songs to myself (yes, I'm morbid that way). Despite the fact the route is quite familiar to me and I have flown many times, you will likely find my eyes tightly squeezed shut, a plastic cup of sloshing wine in my hand, and a very rudimentary, desperate prayer on my lips. I can hardly imagine what it will be like with Erik by my side, but I am looking forward to having someone to take care of and focus on at the same time. We'll see.

Life with Erik is always an adventure. Even if we have to hold on for dear life.

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Friday, October 12, 2007


My husband was quietly reading my blog at his desk this evening while I sat at mine with my back to him transcribing medical reports. I heard a slightly haughty snort of disgust coming from his direction. We turned to look at each other at this point, and he said, "Mary Lou Retton?"

As you probably know, I compared his church pew-hurdling style to that of Mary Lou Retton in my last post. He apparently took great offense to this. I attempted to explain that the only two gymnasts I really could think of at the time were Mary Lou Retton and Mitch Gaylord. Knowing many of my readers were born about the time Mitch Gaylord and Mary Lou Retton led the United States to victory during the 1984 Olympic Games, I chose to compare him to Ms. Retton, a generally more recognizable Olympic athlete whom I greatly admire. Besides, Brian might consider Mitch a bit of a pretty boy, so Mary Lou seemed like a good bet.

Apparently, this did not go over well.

I asked him then just whom he would like to be compared to, and he quickly stated he preferred Edwin Moses, an American track and field athlete who won gold medals in the 400-meter hurdles at the 1976 and 1984 Olympics. I have to admit that this seemed like a decent enough choice, although some might consider it more than slightly presumptuous to choose their own celebrity comparison for such purposes. I still love the guy anyway.

I'm sorry, honey. No, really.

So there you go. My first retraction.

P.S. If you start a blog, please compare me to Audrey Hepburn.

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Thursday, October 11, 2007


Last Sunday we attempted to attend church. The experience was discouraging, to say the least. I hesitate to write about the experience in my normal Technicolor detail, as I don't feel it is absolutely necessary therapeutically, but it bothers me still, so I feel like I should write and see what happens.

While Erik seemed to do quite well in the nursery at church at first, things have definitely taken a turn. The last time we went to church, we found him afterwards in a quiet room playing with one babysitter because the noise inside the nursery had upset him. This type of noise is just too much for his sensitive hearing to handle. He shakes like a leaf and ends up being absolutely inconsolable. While it is beneficial to expose him to some noises out and about, there are definitely some noises that remain absolute torture to him, and the look on his face makes it quite apparent to everyone he is almost in pain and needs to be removed from a situation. You may remember my trip to the computer store a few months ago. Things has really improved in this area. Just yesterday we were at a department store that was undergoing some remodeling, and the scissor lift hoisting men up to the ceiling to work on wiring emitted an ear-piercing series of beeps. Months ago, I would have had to abandon my shopping cart and cut my trip short, but he was fascinated by this piece of equipment and was happy watching it operate, allowing me to leisurely browse through the store while he watched the men work. I was pleased.

Sunday was a different story. I took Erik to the nursery while Brian and his parents found a place to sit. It might have been my imagination, but for a split second I saw something cross the fresh face of one of the two teenage girls working there. I could swear I could see her thinking, "Oh no. Here they come again." I asked if she remembered Erik, and she very quickly said yes. A baby began to screech, and it was instantly all over for Erik. She very unenthusiastically offered to take him to a private room again, but since there were several kids there and only two of them, it didn't make much sense to me, and I said I would sit with him myself and see how things went. That was pretty much the last either of the two girls said to me. It was quite obvious the situation was not going to improve as the screeching from the poor infant continued, and I had a thick sheen of Erik's snot on my blouse. He continued to sob. When it got quiet, he would stop briefly and open his eyes but seemed to remember what had happened and sobbed once more. The baby would cry again, and his sobbing would intensify. He frantically pulled at any loose skin on my neck and seemed to try to climb inside my clothes. I shrugged, smiled, thanked them, and left with Erik. We headed down the hall to the children's chapel, a room that overlooks the sanctuary through a pane of thick glass for the comfort of nursing mothers. The room was full of (you guessed it) more children. Well, that wasn't going to work. Defeated, I found a chair next to the coffee and cookies in the wide hallway. Brian, who was sitting somewhere with his parents inside the sanctuary, apparently ended up vaulting the back of the pew he was sitting in Mary Lou Retton style and scurried out to find me when I failed to return from the nursery in a reasonable amount of time. Brian and I ended up sipping fresh coffee in the hallway halfway attempting to listen to the sermon while we tended to a now happy, hyperactive Erik at the same time. It ended up being a colossal, upsetting waste of time. I couldn't even tell you what the topic of the sermon was. Having awakened for the last time at 2 or 3-something in the morning for the third morning in the row was not helpful, either. I felt fuzzy and unprepared to deal with this situation.

There are times when it seems there is no place for us to just be, bringing on the memories of isolation I once experienced when my infant screamed in agony for months at at time. Now that things are different, Erik would be a complete happy disaster in the sanctuary around adults but still detests being around unfamiliar babies or children who make noise.

Now what?

Things are better. In fact, everything is wonderful a lot of the time. I know everything will continue to improve if I'm patient.

There are times, though, I still cry in a parking lot here and there.

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Wednesday, October 10, 2007

Three Candles Part Deux

Tuesday, October 09, 2007

Three Candles

I plan on posting a slide show and perhaps a description of how Erik's party went, but it will take me some time to gather photos and put it together. In the meantime, enjoy this video of the three of us. I imagined his birthday would get less emotional as he grew, but this one was a doozy. I was fighting off tears of pure joy! About the time this video ends, Erik began singing "Happy Birthday" again, and everybody joined in for a second round. It was one of the most touching things I had ever seen!

Many thanks to my parents for constructing this year's cake, which went wonderfully with the construction theme, and to my baby brother, who sent the drawing of the backhoe that is on display next to the cake. I plan on getting it framed and hanging it in Erik's room. Thanks also to everybody who came and helped Erik welcome year number three. There were also friends and family who were unable to be present this year, and we missed you terribly but hope to see you soon.

It was a beautiful, happy day.

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Monday, October 08, 2007

A Real Conversation

As Brian carried Erik off to the truck today on their way to work and day care, I watched them descend the porch steps from where I stood in the middle of the open mud room door. Erik's blond head popped up over Brian's shoulder, bobbing up and down as he was carried away.

He smiled sweetly and said, "Bye, mama! Have fun!"

Surprised, I laughed and said, "I will! Bye, Skooby! I love you!"

He answered in his famous squeaky falsetto, "I love you, too!"

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Columbus Day 1990

Seventeen years ago today I was at work at the drugstore. It was a painfully slow evening punctuated only occasionally with customers coming in to have me make some keys made or send rolls of film off to be developed. A man walked into my department, and I greeted him. He said nothing in return. Slightly disgusted, I shook my head almost imperceptibly and went back to what I was doing. He went to the hardware aisle in back and crouched down to look at something on a low shelf. I buzzed past him with a sloshing bottle of Windex and asked if he needed help. He said no, so I continued past him and began polishing the counter tops in my department, wiping away dirty smudges left by previous customers. It was then when I felt someone standing in front of me. I smiled and tilted my face up. It was my quiet customer. He was now wearing some sort of mask or bandana to conceal his facial features. His dark eyes bored into me from the narrow space between the fabric covering him and the rim of his hat. I suddenly realized that previously in our very brief customer-clerk relationship, he had never let me get a good look at him. His hand appeared to be holding a firearm sort of hidden in his jacket. Between the short supply of time available to me and my desire to keep my eyes off the man, I couldn't tell what or where the weapon was exactly. Most importantly, I was able to determine that it seemed to be pointing directly at me. My heart sunk, and my fears were confirmed as he hissed at me.

"This is a robbery. Give me the money. Now!"

Dread washed over me like a hot wave. Every muscle fiber in my body felt became numb and tingled strangely. Just as I felt like I was hopelessly paralyzed, my autopilot clicked on, guiding me through the motions while I watched myself. I sprung into action. My fingers hit the shiny, baby blue button on the register. Jackpot. The drawer ejected from the depths of the machine. The money tray bulged with cash, as my supervisors had somehow failed to pull it at scheduled intervals earlier in the day. All day long I had stamped numerous money orders for my customers that ended up totaling thousands of dollars. I began yanking stacks from the separated compartments, and the spring-loaded money clips snapped as they hit the plastic of each empty compartment behind the bills and personal checks I hastily liberated. My pulse pounded against my eardrums. I began shoving everything across the counter to the faceless stranger. He barked at me to hurry, and I sprinted to the second register behind my counter, leaving the first drawer hanging open like an empty mouth. He stood glaring at me, and I wondered to myself where he was secreting all of the thick stacks I slid to him. They seemed to just disappear into him as if he was a hungry amoeba. I heard his awful voice again.

"Lie on the floor!"

Great. This is it. Autopilot clicked off as my squirming stomach hit the floor and I could let myself collapse. As usual, my crazy brain began going places without my consent. I suddenly saw images of Robert Stack on an old episode of Unsolved Mysteries very calmly describing how employees of a store were lined up, bound with rope, and systematically shot in the back of their skulls, one by one. I suddenly realized that there is a bright side to everything. At least I wouldn't have to witness someone die or listen to their death gurgles. It would just be me, and hopefully he was lucid enough that he would do it quickly and correctly.

This is when the ridiculous thoughts kicked in. The voices began chattering in my head, mercifully overriding thoughts just too terrible to think. I tried to ignore them. I was suddenly aware of how soft the ergonomic floor mat felt underneath my left cheek and nose. It was quite comfortable, really. I thought of how you would never know that interesting little tidbit until you were robbed at gunpoint or had some sort of hypoglycemic spell and ended up on the floor like me. I found myself enjoying the coolness of its surface and felt fine grit between the mat and my skin, left there by my shoes earlier as I shuffled back and forth between registers assisting customers and ringing up their purchases. That was a happier time for sure.

Oh, shut the hell up, brain.

I now needed to determine where the monster was on the other side of the counter. Apparently, it was not my day to get shot. I listened closely and heard cash registers opening and closing in the front of the store. Were they being robbed, too? I heard no voices at all--just the now eerie "kachunk" of money drawers opening and closing. I very slowly lifted my head and looked for the phone on the shelf behind the counter. The spirals of tired, stretched-out cord hung down and pooled on the floor, but the phone might as well have been miles away. I couldn't reach it. I opted to roll over and sit up to assess my surroundings. As I began this maneuver, a bear of a man was suddenly standing over me. It was Dean, the old sourpuss pharmacist. The permanently pissed-off, carp like expression on his face had softened into one of genuine concern and alarm. It was then that we began our first conversation.

"Nancy! Did you fall?"

I felt blood rush to my face as I realized how strange it must look to find me lying down on the job like this. At least he didn't think I was taking a nap. I blurted out that I had been robbed, and his face went as white as his lab coat. He then seemed to magically vanish. It seemed that by the time I had lifted my now limp, adrenaline-ravaged body from the floor, there were people all over me like ants on an ice cream sandwich. Police. Coworkers. Supervisors. Even the manager magically appeared, obviously rousted from the comfort of a quiet evening at home. I was questioned by some highly irritating police officers who didn't seem to be speaking the same language, after which I found myself sitting at the white bistro table inside the mall in front of the store. One of my chain smoking coworkers had placed a cigarette between my lips and lit it. I was relaxed enough now that my body finally began release some tears, causing my coworkers to murmur, whisper, and critique my response to what had just occurred. I turned my head toward the wall of glass doors at the mall's entrance. The doors were apparently locked, and there were people staring through the glass at me as if I was on the wrong side of the bars at a zoo exhibit. I recognized a few faces but just looked back down at the surface of the table exhausted. Someone retrieved my coat and purse from the break room in the back of the store, and I found myself being escorted to my car by my boss. We exited the mall out into the damp, moss-scented darkness. He instructed everybody to keep away from me as we traversed the parking lot. I crawled into my little car, and he pushed the door shut behind me with a slam. I watched my boss walk away and disappear into the chaos inside the mall. I was alone in the dark, once again left to fend for myself and begin the drive home through the night.

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Saturday, October 06, 2007

Flying Colors

What you don't have you don't need it now
What you don't know you can feel it somehow

-- U2 "Beautiful Day"

The song I listened to several times the day Erik was born. It still makes me cry.

Yes, I know it's early. I have been up since 2:15 with a briefly sobbing child. I have no idea how long he had been lying in a ball on the floor behind his door with his bedroom light on crying, so guilt prompted me to scoop him up in my arms and take him to bed with us. This is something I rarely do. I put him between us, and his hands ran over the contours of each of our faces in the dark. Realizing his father was lying there, he greeted him with the usual, "Hi, Booga." After a little mumbling to himself in an obviously happy state of mind, he fell into a deep sleep.

Erik snores like a dump truck repeatedly driving through a nitroglycerin plant. In fact, he makes his father look like a complete amateur. No, it's not normal for a toddler to snore. I have been informed of this and was provided handouts on sleep apnea/congestive heart failure. Although I will address this with his physician at his upcoming routine visit, while I listened to him this morning, it was quite apparent the snoring is just the familiar rattle in his chest magnified. He used to grunt loudly as a baby when he concentrated on something, and many folks thought he had asthma, as they mistook it for deep wheezing. I never worried about this and grew to love it along with the other strange physical quirks my baby has. When your body is missing one of the essential components to keep things springy and tight, you can't expect everything in your chest not to shimmy around a bit. However, sleeping with him is completely futile. My baby's adorable, but he's a freaking rattletrap. Always has been.

Today is Erik's birthday party. Although there will be brightly colored balloons and the appropriate decorations, I have kept the pediatric guest list to a minimum this year once again because of Erik's tastes/hearing, and the annual event still has a very definite cocktail party feel to it with a few adult friends and family members. It probably always will, because that's where Erik is happiest--around adults having a good time. I fantasize about Erik being the center of attention at future parties here, playing the piano and loving every second of it. Maybe I can set up a tip jar.

Erik's IFSP was Thursday. He was tested by two staff members at his school, one of whom has worked with him since he first attended and one of whom was present the awful day he was labeled "severely developmentally delayed" for reasons we had yet to discover. I'm delighted to report that the evaluation room no longer infuses me with depression that lingers long after I exit now. However, the obnoxious hum of the fluorescent lights, the bland-colored miniature furniture, and the looming stacks of paperwork inside make me instantly exhausted to my bones.

Erik was seated at the tiny table and given a rapid salvo of instructions to follow, including answering questions about photos in a book, stacking blocks in a tall tower, and putting rings on a stacking toy. He was then asked to climb a set of tiny stairs. I sat silently with Brian, and we attempted not to be a distraction during testing. Although Erik was completely distracted by the sounds in the hall and we had to close the blinds to minimize visual stimuli, he did beautifully. The kid obviously doesn't test well, and it was quite apparent to these ladies that he knew exactly how to answer the questions and respond to their instructions but would rather be socializing with them or finding a toy truck to roll around the room. The tester that is not familiar with Erik kept having to hide her face in the crook of her arm or turn away, as he would greet her repeatedly in falsetto, and she tried to remain serious, very ineffectively trying to stifle her giggles. He would smile sweetly and cock his head often, precisely imitating the cute noises Janet made as she demonstrated what she wanted him to do.

Erik's preschool teacher then joined us, and we completed his goals. I explained that if there was anything I have learned at their facility, it was that I believe anything is possible for Erik. Goals on paper looked insurmountable at first, and I was easily discouraged. At this point, even if I wince and wonder if one of his goals is realistic, I can freely admit that all things are possible. It's not the end of the world if he doesn't accomplish a specific goal set, but he has demonstrated time and time again that I need not worry about that happening regularly.

The test was scored down the hall while we waited. Instead of feeling anxious, I tried to fight falling asleep as the room did its best to suck the life force from me. As for the test results, we will receive a formal report by mail soon, but Janet and Allie soon returned and let us glance at the paperwork after smiling and informing us we might be surprised by the results.

Most areas of Erik's development were quite comfortably charted in the meat of the purple "typical" range on the graph.



The only part of the testing he failed miserably was gross motor. He was asked to walk up and down that set of tiny wooden stairs in the room and appeared as though he had downed four Long Island ice teas before attempting this. It didn't help that he wasn't interested in the task, either. I again explained the visuospatial problems that are and always will be a fact of life for Erik and then my confidence in him, knowing he will grow and master using other senses to accomplish tasks like these during which his eyes and brain don't seem to communicate normally. He will find his own way in his own time. I couldn't be more proud or more confident.

By looking at the test scores, Erik would NOT qualify for special education services. Oh, yes. He's that good. However, because of his diagnosis, he automatically qualifies. My hope for the future is to find a niche for Erik between special education and typical education to guide him through school. I want him to enjoy a normal life but receive the services that work for him, no matter what they are. I am not a mother who insists upon everything in Erik's life being "perfectly typical," because he's not and never will be. However, I am quite sure there is a perfect place that's typical for Erik and our family in the world, and we are well on our way to finding it. That's very exciting.

Three years ago tomorrow at this time of the morning, I was exactly one week overdue, bulging with baby. I was probably awake in this very chair making the music CD I would take to the hospital to listen to while I was in labor, blissfully unaware that Erik was about to give us all a great scare on the monitor that would be strapped around me to record his mysterious life rhythm. He threatened to quietly slip away from this world, but hours later he would be tucked into a hospital bed with me sleeping peacefully, as if he had been with me all of my life.

I will be the mother of a 3-year-old this weekend.

That's exciting, too.

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Tuesday, October 02, 2007


I am a creature of habit. I adapt to change and eventually grow to appreciate it, but I generally find comfort in the familiar. Routines are comforting to me, especially when I feel like I can't control much of anything else these days.

While my new schedule is definitely stressful at times, I am learning to appreciate the time I spend away from my son almost as much as the time I am with him. Today the pieces seemed to begin falling into place. I hit the Gap and the party store on the way home from school. Lately I have found myself feeling anxious and lost without things scheduled every minute while Erik is at daycare or at class and sometimes find myself wandering around feeling disoriented with a soapy rag in one hand, stray toys crammed in my armpit, 14 recipes in the other hand, and the phone nestled between my ear and my shoulder forming a lifeline to work as I attempt to do a thousand things at once to eliminate any free time. I tend to feel slightly demented and, for some odd reason, guilty. I am slowly learning to stop cramming my time full and relax just a little more, although it still feels very strange. I don't have oodles of free time and if I don't enjoy it, it's gone very quickly. I have come to the realization that having time to think scares the crap out of me. That is my lightbulb moment for the week. Now I am coming to understand my manic behavior better and am trying to take a deep breath. Sometimes I think Xanax sounds delightful. However, don't worry. I won't be going all Valley of the Dolls on you anytime soon.

Today I was relieved to see our morning began very routinely. I even felt rested. Erik awakened at the crack of dawn, which is becoming habit now. He is fond of lying on his bedroom floor and placing his pouty lips in the space between the bottom of the door and the floor. The acoustics in this house with such an open floor plan are quite bizarre to begin with, but if he speaks loudly from this awkward angle, his voice seems to boom from another dimension out of nowhere, no matter which room you happen to be in. For example, I will be lying in bed and hear a deep voice announce, "HI BUDDY!" Now that I'm used to it, I don't flinch (much) anymore, but it was quite unnerving at first. I then pad to his door in my bathrobe and let him out. No, he's not locked in his room, but he seems to think there is a magical magnetic field keeping the door shut. Who am I to tell him otherwise?

I fed him breakfast, got him dressed, did some kickboxing, and took a shower. On the way to school, we passed the same buses with the same drivers, saw the same people on their way to work, and watched the same workers in fluorescent clothing confidently guiding us through the same annoying construction zone obstacle courses. We saw Jeff, as usual, in front of the school with his school bus. He held the door open for us, and we stepped into the hall. Erik and I made our way to his classroom, past the same screaming boy being carried out like a stick of firewood by the knowingly nodding teacher and into the loosely-controlled, tightly supervised, now very familiar chaos. I removed Erik's jacket (he corrected me twice and called it a "coat") and hung it on the hook in his cubby halfway under the power of his arm with some assistance from mine. He knew what to do and again attempted the task. It's becoming routine now. It was then that he smiled, said, "Trucks!" and was off to play next to Abby, who seemed to be recreating a scene from the 1970s gas crisis with an impressive line of toy vehicles.

And that was it. I turned and left, largely unnoticed by child or adult. No drama whatsoever. I didn't even feel (very) guilty.

As my schedule falls into place, I am relaxing. I have discovered the sweet spot on my love seat from which I have a good view of the road from our back windows and through the bay window in the master bathroom if I open the two sets of double doors between me and the view wide. I also can see a two thin slices of what is going on in front of the house through the side light windows and a thick film of greasy toddler fingerprints on on each side of the front door. A week ago, I perched on the armrest of the couch in the event I missed the bus driving by. Now that I know I will see the giant wall of yellowness coming, I can plant myself and eat my lunch in front of one of my favorite shows (usually How Clean is Your House?) while I take a break and relax.

Today the bus came rumbling down the road, right on time. I still love watching it bring Erik home. I especially enjoy it because I know Erik is inside, craning his neck to watch passing vehicles, naming the make and model if he can. I stood to watch it turn in and drive toward the house. I walked outside to meet it. As I stepped inside to inhale that new car smell, I instantly found myself patting my thigh to the beat of an oldies song pumping through the speakers on the bus as Jeff unbuckled Erik from his seatbelt. Jeff then told me that he let Erik sit in the driver's seat and "drive the bus" as the other kids were loaded today. He then demonstrated this by plucking Erik up and positioning him at the controls again, asking Erik if he wanted to honk the horn. Erik tentatively reached out and pressed the horn a couple times. After he was accustomed to the sound, a smile spread over his face. My favorite kind of smile. The kind of smile during which the points of his incisors show and his face lights up. God, I love that. A laugh then bubbled up from deep in his chest, and he honked that horn so many times that I wondered if the neighbors (a) thought there was some sort of awkward funny business between myself and the Santa-like driver going on inside the bus, (b) thought we were in distress, or (c) were pointing shotguns in our direction to snipe us out and cease the ruckus. Jeff let Erik continue this for a good five minutes until I finally put a stop to it. We disembarked the vehicle and said our goodbyes. As we turned to walk away, Jeff looked down at his clipboard and gave me a puzzled look.

He said, "I thought Erik was afraid of noise."

"Well," I speculated, "I guess the bus calms him down in that area. I'm actually amazed."

As we walked very slowly backwards up the driveway, as we now routinely do, and watched Jeff drive away, he waved and turned on the red and yellow flashing lights for Erik.

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Monday, October 01, 2007


I entered the dusty guest room and moved the heavy nightstand blocking the attic storeroom door. I pulled the door open and flipped the light switch, scanning the room for fall decorations and items I might use to decorate for Erik's birthday party. To my right stood the bulky, frosting-pink box in which my wedding dress was sentenced to spend the remainder of its existence with the air professionally vacuumed out of each fiber of fluffy lace and meringue-like veil. Musty, tightly-coiled sleeping bags surrounded it like dusty snakes on guard. As I stepped deeper into the room, taking care not to hit my head on the sloping ceiling, my brain went absolutely blank. I suddenly and inexplicably could not recall why I was in the room. I smiled at my forgetfulness. As I scanned the room, I felt my smile fade. I had been in this room thousands of times but could suddenly visualize things I had never noticed before. My neat, serial killer style block print in black Sharpie marker very concisely announced the contents of an army of old diaper boxes sealed shut with glossy packing tape. Most contained preemie-sized baby clothing, swaddling blankets, and tiny caps. The large box my toe nestled against contained what remained of my collection of maternity clothing, including the flowing blouses and pin-striped, button-up shirts I wore over my swelling stomach to my old job. Sitting on top of all of this was a collection of things too bulky to fit in boxes or simply tossed there to wait for one of my manic cleaning episodes.

I inhaled a large amount of attic air and attempted to concentrate again on the stack of folding chairs to my left and birthday party planning. My eyes wandered against all neurological orders issued by my brain. I could only stare at the baby bathtub sitting atop a pile of boxes like an adorable shipwreck. I peeked inside and spotted a bag full of plastic baby bottles. I turned away and straightened my collection of boxes, thankful I couldn't see inside them. I stacked them along the wall out of the way. Amazingly, I caught myself stalling for time. I felt as if there was a monster behind me. How pathetic could I be? I just could not seem to control what was happening here.

Just what was happening here, anyway?

These items did not bring me joy or trigger anything remotely maternal. They reminded me of death. The death that occurred years ago now that not many could feel or even knew occurred. I only felt memories of dark nights and horrible pain. Even the Huggies boxes suddenly seemed like brightly-colored coffins. I felt a spurt of adrenaline issue from deep within my torso. As it dispersed, my heart and lungs began to labor as if I was walking uphill. Nausea twisted my stomach.

I automatically grabbed the blue plastic bathtub and began to fill it with loose items. The Baby Bjorn carrier. The Boppy covered with the word "baby" and cheerful cartoon bees. The diaper wipe warmer. I carried the tub out of the room and set it on the carpet. Going back into the storage space, I glanced around the room and felt relief. I looked at Erik's saucer toy and items he had recently outgrown. I felt nothing. I picked up the boxes containing the baby swing and the baby bouncer, but a wall of guilt kept me from carrying them out of the room. I stacked them with the other boxes, extinguished the light coming from the two bare light bulbs inside, and shut the door behind me. I moved the nightstand back into place, entombing the dusty items inside once again.

I carried everything outside into the dewy, fall morning to my Jeep and placed them in the back, ready to drop off when I passed a Goodwill donation station sometime in the next week. My pain, someone else's gain. The panic faded as I shoved the heavy hatch closed and heard it slam shut. My lungs filled with fresh air. I could breathe again.

I want to move on. I need to let go. I am going to bury this pain, little by little.

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