Crappy Visit

In every life we have some trouble
When you worry you make it double
Don't worry, be happy

-- "Don't Worry, Be Happy" (Bobby McFerrin)

Yesterday I had a message on my cell phone reminding me about Erik's "Happy Visit" (apparently we have graduated from the "Fun Visit") to the dentist scheduled for this morning. I could feel my face fall as I listened to the cheerful voice and felt my mood turn stormy. After our last appointment, I was ready to demand a copy of our records and make an angry exit today. I tried to keep an open mind, but I found myself a little more than tired of trips to that place. I have lost count of how many times I have been there just in this calendar year.

I made sure not to tell Erik where we were going until this morning at breakfast, and he seemed to take the news well. When we arrived, we were led into the private room with the big, orange chair once again, although the wide door was left ajar. Erik was already creating a lake of hot tears, telling us all, "I don't want to!" The hygienist gave Stinky Dog a ride in the chair, acting as if we were in the middle of the most magical place on earth, and pulled out the usual tricks that seem like a complete waste of time to me. The only thing Erik seemed thrilled about was the suction tube, which I previously told him was a little vacuum. He expertly used it on Stinky Dog's face and shook the stuffed animal, indicating that Stinky was quite ticklish.

The dentist made his entrance, upsetting Erik even more. He placed his large hand on my shoulder and greeted me warmly. He seemed more connected with Erik and less distracted than he did at our last visit. He talked to me through his conversation with Erik, telling him he would only do what I approved of doing, and this made me feel better. We ended up abandoning the large exam chair. Instead, the hygienist lowered a small chair on wheels, and I sat in it, holding Erik firmly on my lap. Erik was now hysterical. I put one hand on Erik's forehead and pressed the back of his head against my shoulder. His screams intensified. I smiled at the dentist to signal him it was okay to proceed, and he rolled his own chair closer to me. My knee pressed into the crotch of his expensive slacks, and I tried not to notice. We locked together like this, sandwiching one angry patient, and I held Erik's strong hands down. I decided it was just best to get this unplesantness over with.

It wasn't necessary to use the metal device to lock Erik's jaw open after all. It remained a silent, threatening presence atop the paper-covered tray. Instead, Erik cried so hard that his mouth automatically opened, allowing the dentist to paint the back teeth with the cream-colored fluoride varnish and wipe off the excess with gauze pads. The dentist soothed Erik and reminded him the world wasn't perfect.

This I know.

After the short but messy procedure, the dentist tenderly wiped the tears and snot running down Erik's face. Erik ceased sobbing and actually thanked the dentist on my cue, obviously not holding a grudge. In fact, when the dentist asked for a hug, Erik quickly gave him one, almost collapsing into his arms. We collected our balloon and toy car from the frog bucket, and I returned to my chair back in the waiting room as promised to let Erik stim on the spinning toys for five minutes. Another mother attempted to make eye contact with me, but I was feeling less than social and looked away. I'm sure Erik's screams were more than audible from any chair in the building, and I couldn't imagine what she was thinking when we emerged and my 4-year-old crawled around on the floor, giggling with delight and spinning everything that wasn't glued down. It's not embarrassment I feel but a sense of disconnect with the world on occasions like these. Erik looked at the other children in the room and brightly spouted, "Hola, amigos!" and "Hello!" The younger girls echoed a pleasant greeting on their way by. The older boy looked annoyed and ignored Erik altogether. Typical. It will be a miracle if I can get through Erik's childhood without slapping a stranger's child. So far, so good. But I'm not making any promises.

Soon I dragged Erik from where he was sprawled on the floor, and I made it to the car with just minor protests. As I buckled him into his car seat and deposited the putrid pile that is Stinky Dog on his lap, I took my palms and placed them on each side of his face. I paused for a moment and looked into his eyes, holding him there almost too firmly, and I kissed him very hard on the forehead before I shut the door and walked around the Jeep.

Our next "Happy Visit" is a whole three months away this time.

Boulyah!

Anti-Dentite

I continue taking Erik to the dentist every two to four weeks. The photo above is of Erik using the suction tube on Stinky Dog. I tell Erik this piece of equipment is a miniature vacuum, and he enjoys playing with it.

The dentist no longer amuses me much, as I feel like he views us both as a gargantuan inconvenience because of our requirements for a private room and extra attention. Even his pimp-like, leather-inset pants and freshly-pressed shirt quietly irritated the crap out of me. I was informed that "Ms. Nikki," the woman half my size who insisted we deal only with her for Erik's special needs, is no longer employed at that office. Our new technician was able to sit Erik in a chair and eventually convince him to open his mouth so the dentist could paint foul-tasting fluoride lacquer on a couple of his teeth. Of course, I was required to explain hyperacusis all over again to the new technician. The dentist repeatedly instructed Erik to "calm down" and "stay still," and not in the kindest tone, but Erik seemed almost shocked into obeying. As he peeled off his orange gloves and got up to leave the room, Dr. Mike gruffly told his assistant they would be using the device to pry Erik's mouth open for an extended period of time at our next visit. Knowing Erik, this likely will traumatize him all over again, erasing any progress I had made with the whole desensitization process. Weeks of work down the drain.

I then took Erik to the main waiting room the office shares with a pediatric medical clinic and let him spin some wooden wheels on a bus-shaped play structure while I gathered my thoughts. I noted how strange it was to feel angry and disappointed while wearing a bobbing helium balloon tied to my wrist. Erik looked up at me and laughed, obviously delighted to indulge in some good, old-fashioned stimming. When it was time to go, he protested and began to cry, telling me he wanted to keep spinning the wheels. I practically dragged him out the front door, as he is too heavy to carry anymore.

Fun visit, my ass.

Putting the "F" in Fun

I took Erik to the dentist yesterday. He seemed perfectly comfortable with the idea and talked about the toys he remembered in the waiting room. He was quiet and calm from the time I unloaded him from the Jeep to the time we walked past the receptionist's desk. When we were escorted to the examination area and he was asked to hop up onto the blue dental chair, however, anything resembling calmness in him instantly evaporated. Apparently our prior visits to this office did nothing to lessen his anxiety. His face turned tomato-red, and tears began to squirt from his eyes. He begged us to let him get down.

I looked up at the hygienist, who wore a glazed-over expression of alarm, and I quietly explained to her that Williams syndrome tends to pretty much erase the gene that controls anxiety. She nodded and asked Erik a series of maddeningly perky questions. He continued to bawl and answered no to all of them. I reassured her that it was okay to start polishing, but she ceased her attempts and just sadly repeated, "Oh, he's so cute," like she was apologizing. I kept lamely patting Erik, not knowing what else to do. By this time, a couple of other staff members began dodging each other as they darted back and forth in an apparent attempt to ready a private room for Erik. By this time, we had likely frightened every child in a five-mile radius. As the staff's attention was directed away from Erik and towards a new battle plan, Erik managed to slip off of the shiny chair and wander over to the other side of the room, where a pretty young mother sat with a perfectly quiet toddler on her lap next to a dentist's chair containing a little boy getting his teeth polished by another hygienist. The mother smiled politely at me, and I smiled back and shrugged. I was suddenly aware of the waistband of Erik's diaper and the way he moved in his orthotics. She was very successfully attempting not to stare, but I detected a touch of curiosity. I noted how depressing the situation was for me but marveled at how desensitized I have become. What would have sent me to the car in tears before now just makes me tired. Plain and simple.

I suppose that's a bizarre kind of progress.

What happened next almost sent me into hysterics. Erik approached the defenseless, immobilized boy in the examination chair. The youngster's eyes slowly turned toward my son's approaching face, and their noses threatened to touch. Erik tilted his head to get a better look at the pneumatic polisher and all that was occurring in this stranger's mouth. His neck craned, and he drew himself even closer. The boy looked slightly horrified at Erik's scrutinous stare, and his eyes darted back to his mother for reassurance. After I stifled a giggle and told Erik to back off, the hygienist assured me that my son was doing just fine.

It was at this time that I was approached by a woman half my size with a confident, authoritarian tone. I was slightly put off by what she said next, but I was glad to hear she wanted to try a new approach instead of asking me for the next step. Apparently the private room idea had been mothballed. Dr. Mike bobbed by on the other side of the room divider and waved at me, simultaneously flashing his generous wall of white teeth, looking like a celebrity on the cover of a glossy tabloid. He disappeared into an exam room.

The woman told me that their office schedules "fun visits" for children with special needs. I cringed at this entire phrase but couldn't put my finger on why. Maybe the word "fun" wasn't the F word that automatically came to mind when I had to take Erik to the dentist. Unless there is a margarita machine in the lobby, "fun" wouldn't be my first choice of adjectives. She explained that it would be necessary for us to return more frequently than every six months in order to get Erik accustomed to the environment. My cynicism kicked into overdrive, and I began to daydream about being placed in a sealed crate with a family of rabid raccoons on a daily basis. I can't imagine my hatred of the animals would lessen with repeated exposure, but, then again, I'm not a psychologist. Thankfully, I recalled some of the information I had read years ago about dental visits for people with WS and how a technique like this might help. I attempted to adjust my deteriorating attitude. The woman instructed me she would need to be informed each time we came in, as Erik would need special attention, and that she would handle it herself. She said that she would come in early if necessary. Her confidence began to feel condescending, and I realized that I was probably being a bit defensive.

Erik was invited to choose a plastic toy from a box, which I did for him, as I usually do. I chose a sparkly rubber ball, showed it to him, and stuffed it into the bowels of my purse to join the assortment of toys and stickers Erik shows little to no interest in at each of our appointments. The receptionist scheduled us for a "fun visit" in two weeks, and we said our goodbyes. Erik asked me once again if he could spin the wheels on the wooden bus in the waiting room. Knowing this is something that calms him, I took a seat across from another mother and let Erik go to town. After about 10 minutes, I collected our things and told him it was time to go.

Four-Year Visit

I took Erik to the doctor today.

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

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

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

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

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

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

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

Fine enough, anyway.

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

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

We would soon find out.

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

One thing at a time.

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

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

And I almost welled up again.

Dental Damn

Erik and I went to Dr. Mike, the children's dentist, yesterday. When I previously scheduled the appointment, the receptionist asked if Erik needed a routine cleaning. I hesitated and answered yes. We never had a real cleaning before. Just an exam. Is anything really routine in a medical office with Erik? I knew that they would review the chart before they saw us. Right?

When we arrived, Erik and I were instructed to sit in a large waiting room flanked by doors leading to our dental office and to another pediatric clinic. I stared at the door in front of me. It had a translucent panel of glass in it, making me think of old black and white movies for some reason. I suppose it seemed to me like every good detective or private eye had a door like that with their name stenciled on it. This door, however, had a cheerful-looking giraffe painted on it. The advertisements for the office repeated the phrase, "Kids...that's all we do." I hate that. It sounds...well, like something one shouldn't announce. I bounced my knee up and down as Erik crawled under my chair to get to the wheel on a piece of play equipment that was pressed up against the furniture as the other children played with it very appropriately, pushing little wooden cars around a series of tracks cut into a brightly-painted board. I heard the wooden circle beneath me begin to spin, and Erik's stiff, long legs stuck out from beneath my chair as other patients and their parents walked by to get to the pediatric clinic. The glass door opened a few times and revealed children holding yellow balloons printed with the name of the place on them tied to little plastic bags containing cheap toys and toothbrushes. When the little girl who played next to me left to find her mother, I noticed all of the wooden vehicles she touched were left neatly in tiny parking spaces lined with white paint.

After the hygienist came to get us, we followed her back through a cramped maze of hallways and exam rooms to an open area with bright blue dentist chairs in it. Stuffed animals stared at us with unblinking eyes from the corners of the room, and Erik asked for the one that resembled Cookie Monster. We waited for the hygienist to arrange her tools on a tray, and I winced when Erik pressed Cookie Monster's stomach and the toy began to laugh, shake, and talk. Erik jumped but laughed in response. I noted that the voice wasn't right at all. He sounded more like Krusty the Clown than a proper muppet. As Erik ran his fingers over his belly, the blue creature chuckled through a voice that sounded wounded by a three pack a day habit. I shuddered. Boy, this place really tended to give me a case of the freakies.

The hygienist, a very attractive, young woman began to talk to Erik. His anxiety visibly ramped up, and he asked to go play. She yarded a length of hose towards her, and at the end of it was a rotary cleaning tool. I felt my own anxiety level spike. I felt like blurting out that we had never used these tools before, but I refrained. There's a first time for everything. Instead, I asked her if it was loud. She said it was not, like all well-meaning people do before firing up power tools and other construction equipment in small rooms with us. She used my hand to show Erik it was harmless, pressing it into my index finger (Note to self: Get manicure before seeing Dr. Mike and his staff). Although Erik did remarkably well, I began to suspect she had not seen the notes in the chart and was unaware of Erik's noise sensitivity or his syndrome. I'm not sure if it was Erik or my reaction that caused her to put the cleaning tool away, but she soon tucked it back into its holder and moved on. She let Erik drink from the little tool that dispensed water and showed him the vacuum I call "Mr. Thirsty." He was mildly amused but still squirmed in his seat, asking for wheels to spin. She held up about 14 colorful toothbrushes and asked him to pick one. He simply sat in his chair and stared at her. She said something about Spongebob, and he repeated what she said, not seeming to know what else to do. She selected two with Spongebob on the handles, and I asked Erik to point to the one he wanted. Again, he sat there quietly without moving, and I silently cursed this whole ridiculous process. My patience was waning. I wanted to scream, "Just give him the f*cking toothbrush, lady. Erik doesn't even know who Spongebob is!" But, as I am generally very polite, I did not. I smiled and quickly selected one myself. She then asked Erik if he took vitamins, and I calmly explained that I was not to give him vitamins because of the syndrome he has. I did tell her he took fluoride. She then "cleaned" his teeth with his new toothbrush and regular children's toothpaste, which Erik has also never had before. I could read his mind as he smacked his lips and tried to politely hide his disgust. As he looked up at me, I could see his thoughts very clearly (Spicy!). The hygienist finished up, examined Erik's chart, and passed Dr. Mike, who was emerging from an exam room containing a boy lying flat with a nozzle dispensing gas affixed to his nose, making him look like a suckling pig atop a dinner table. The people around the boy cheered him on enthusiastically, as if he was playing a contact sport.

The hygienist let out a whisper-hiss to Dr. Mike as she went by.

"HE HAS WILLIAMS SYNDROME."

Dr. Mike approached us next. My enthusiasm for his technique has dwindled a bit. He tends to be quite rough, although he is efficient, and uses the word "pretty" to describe everything: My hand. Erik's head. Erik's teeth. His hygienist. Hella creepy. However, he seems to know his stuff, even related to Williams. He talked through his giant, gleaming grill of white choppers, as usual, and examined my "pretty" hand for Erik with his tiny mirror on a stick. I again kicked myself for not at least trimming my chipped nails. Erik was not impressed with this dog and pony show but for the first time opened his mouth as instructed and let Dr. Mike count his teeth and examine the enamel. He said, "Wow. Good job, mom and dad." When it was finished, I couldn't have asked for a better outcome.

The dental hygienist asked if it would be okay if Erik got a balloon, and I said yes. She gave him a rubber duckie, too, and he said, "Put it away, Mama?" This amused me greatly, and I tucked it in his little plastic bag she handed me. After scheduling another Dr. Mike experience in six more months, we emerged back out into the waiting room, and I shuddered, feeling slightly physically violated for some odd reason. I said, "Erik, let's get the heck outta this place."

Erik looked toward the front door and smiled, cheerfully greeting Dr. Mike's next victims as they made their way in from the parking lot.

Infection Part Two

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

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

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

Self-Examination

Erik and I spent the morning making brownies from a Weight Watchers recipe (with a mixture of Kashi soy cereal, butter, and powdered sugar on top, which he immediately plucked off, put to the side of his plate, and said, "Put away!") and playing with dishes in the kitchen sink, creating a massive flood on my floor.

I still feel really off today.

Erik's appointment went fairly well. Today was the first appointment I didn't feel like Brian needed to go with us for any sort of education or support. There is no longer any point. Unfortunately, this doesn't make it easy. I dressed Erik in a pair of good jeans without holes in the knees, a nice shirt, and a denim jacket, skipping his plastic leg orthotics in lieu of socks and his black suede Vans. I figured there was no point in sticking out any more than we would, anyway, in the waiting room. We checked in, and Erik smiled at the girl at the desk, telling her that he was going to see the doctor. We took over a seat in the large waiting room next to a playground-sized jungle gym type setup and waited. The other kids ran in bee-like swarms, whizzing past us and missing us by centimeters on nimble legs, seemingly failing to notice our presence at all. Suddenly I felt like Jane Goodall, peeking in on another foreign world through a layer of jungle foilage. I felt a rush of adrenaline enter my bloodstream as I glanced around the room, stirring up hot, poorly directed fury at the other parents with perfectly typical children. I let the emotions wash over me and enjoyed the evil heat of them for once in a public setting. I felt angry and high.

I noted all day that Erik experimented with sound. He repeatedly clapped his palms over his ears to listen to the radio, the television, and my voice, asking me to repeat certain sounds or phrases. In the waiting room this continued, only he kept his hands sealed firmly over the openings of his ears to block the sounds coming from the other children in the room. He laid across my lap, stiff and motionless like a pale bundle of kindling. I tried to reposition him so he could at least watch the other children playing in the room, but upon being lifted into the air, his legs stuck out perfectly to the sides like metal prongs and then quickly wrapped around my chest. I felt frustrated and annoyed. He clung to me like a parasite and refused to move. He simply buried his face in my neck the remainder of our time there. A father stared with me with eyes the color of molasses as his wife spoke fussed with a baby in a car seat, and an adorable collection of bundled-up newborns were carried in from the wet afternoon by their shockingly young mothers. I smiled at them but felt my stomach turn.

A nurse propped the metal door with her small tennis shoe and called out Erik's name. I pried him off of me, and we walked slowly through the doorway into the nurses' area. We tried to stand Erik on the scale, but he promptly began wailing, his face transforming that familiar ruby red. We finally resorted to sitting him on a layer of tissue paper on the infant scale. Stiff and screaming, he weighed 32 lbs, 9 oz. He absolutely refused to stand against the wall to be measured for height, even though I made a complete ass of myself measuring the length of my own body. The blood pressure measurement turned out to be a complete disaster. I began wondering why we were in this place at all.

We were escorted to a room where we answered a myriad of questions about milestones. Thankfully, I no longer need to answer them all negatively. Yes, Erik can jump. He can speak in short sentences. He eats protein. He drinks milk. He sleeps well. He knows the names for things. He can count to 5. In fact, he can count to 20 if he wants to. Yes, he eats a very minimal amount of fast food. He is fond of the seven-layer burrito at Taco Bell. For the first time I felt like I appeared like a healthy, put-together mother who slept regularly. Although I was on edge in this place, I smiled. I have come a long way in a year. As she went to inform the doctor we were ready for her, I pulled out my cell phone and played the new Britney Spears song Erik loves and I detest. He asked me to play it again and again. I obliged him and laughed as he said, "Again! Again!"

Dr. G came into the room and greeted us. She said she was thinking of us recently and was delighted to see us on the schedule. After some initial pleasantries, she attempted to examine Erik's ears and listen to his heart and lungs with her sthetoscope. If she did glean any information from this brief examination, it would be miraculous indeed. He absolutely refused to let her touch him, despite an impresive offering of stickers, which Erik doesn't know what to do with, sweet talk, and her own examination of my own heart, lungs, and ears. The good news is that I am completely healthy and do not have any variety of otitis media or a heart murmur. We did manage to get Erik's pants off and his diaper unfastened enough to examine his manly bits, which were reportedly fine. He continued to wail the entire time.

Once the screaming subsided and Erik began carefully examining the lights in the ceiling and the floor vents, which seem to blast air the temperature of the deepest level of hell, I asked about an orthopedist, and she began filling out paperwork to refer us to a pediatric rehabilitation physician in town. She asked about Erik's hippotherapy and if I was frightened to see him on a horse. I laughed loudly and immediately answered no. It always surprises me that even most physicians don't really have a grasp of what my life is like. I told her to recommend our physical therapist to other parents, and she took notes. The nurse returned with a fistful of Erik's immunizations, and I held his struggling body down while she deftly stabbed his muscular thigh with the loaded needles. Overall, I was impressed by her speed and technique, and she was impressed by Erik's brute strength. As we packed up to leave, she mentioned the other person in town who has WS, now an adult, and how beautiful the starbursts in her eyes are. When she realized I knew of this person, she looked slightly alarmed and said she could not disclose any more information because of a potential HIPAA violation. The trouble is, there aren't other people like Erik in this region. I informed her I knew whom she spoke of and that we had yet to meet but that I knew she was doing quite well. As we left, Erik began to wail again, upset that he could not examine things on the way out. As I reminded the nurse to update our immunization card over the screaming, she commented to me how patient I was and what a great job I was doing with my child. I felt like laughing, crying, and bitch slapping her at the same time. I said goodbye as she held the door open for our departure and next poor pediatric patient.

I came home, sat Erik in his chair with a giant sugar cookie and a serving of our freshly-baked brownies, and poured myself a generous whiskey and Diet 7-Up, refreshing it just halfway through. I ruffled his hair as he quietly munched on his treat. Wet snowflakes began smacking the ground outside the kitchen window, and the sky blackened.

I smiled and felt the alcohol enter my bloodstream, numbing everything I felt earlier.

Our next appointment at the pediatric clinic would occur in 2009, as Erik turns 5.

Thank God.

There is simply not enough whiskey or sugar cookies in this world.

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.

Laboratory

Funny. Nobody seems especially interested in assisting a woman on the brink of death today. I began to suspect I had a kidney infection as I began spiking a fever today and developing sweats. I called my gynecologist's office, and the nurse said that nobody could see me but that I was welcome to visit the hospital laboratory to drop off a urinalysis. She then informed me that it would take up to 72 hours for the results. Frustrated, I called the clinic where my primary care provider is located. I normally avoid that place like the plague, as it is my old place of employment. They said they would be happy to see me on Monday. As I have felt like Gravy Train for nearly a week now, I felt my emotions began to seep to the surface, voiced a brisk thanks but no thanks, and hung up the phone. My next option would be sitting in our urgent care center with Erik. The last time I did this, it took a full four hours to be seen. Desperate, I loaded Erik into the car and we visited the hospital laboratory, where my anger was quickly extinguished by the surprisingly delightful, helpful women at the desk who seemed to fall in love with Erik, gave him stickers, and actually cared about my plight. Erik and I retired to the laboratory lavatory, and I completed my urinalysis. He was such a patient little guy through all of it, and I felt so bad for boring him to tears all week thus far that when we arrived home I slathered him in sunscreen and let him push his dump truck around the property for a half an hour. There was no work for me to do today, so I relaxed on the porch.

It's weird, but I actually feel better. Maybe the Tylenol is kicking in. I suppose it will be nice to know my guts aren't frying, too. Just a mere 72 hours until I find out. I might as well be in a covered wagon on the Oregon Trail with this kind of health care at my disposal.

Voices Carry

Hush hush
keep it down now
voices carry

-- "Voices Carry" Till Tuesday

Whatever this phase is I'm going through seems to involve a great deal of feeling geographically and emotionally isolated. I have definitely felt worse in my life, but this type of feeling seems to have no end these days. Today I allowed myself to vent in parent group about this new feeling of isolation. I talked about how I don't trust the medical professionals here, most of which have quite obviously never had a patient with Williams. I talked of how brutal having a special needs child is on a marriage. The strikingly loquacious speech pathologist was scheduled to give her monthly lesson today on promoting communication and language in our children but allowed the group to vent and talk for most of the session. Sometimes it seems the people who lead these sessions vent more about their own lives than we do sometimes, and I often find it unprofessional and highly annoying. There are mothers there with children with a variety of conditions, including Down syndrome, mild to severe learning disabilities, fetal alcohol/drug syndrome, and autism. We are all beginning long journeys with our children, and I suppose even if every mother had a kid with Williams, we would handle things very differently. However, there is no doubt that I get something from other WS mothers that I can't get anywhere else on the face of this planet. The people who are supposed to help me the most are by far the least helpful, and the people who are new at this are the most reassuring of them all. I only halfway regretted voicing my opinions this time. Part of why I feel so alone is that every time I try to let some of my feelings out, I'm generally extremely sorry I did and curse myself afterwards all the way to the car (stupid, stupid, stupid). Frankly, the response I get usually just makes me angry and sullen. I usually promise myself I will never discuss my feelings again except here in this blog. The only thing that made me start chewing my fingers until they bled to suppress any blossoming rage was that it was explained to me by the speech pathologist that I need to fight for my child because nobody else in the medical community will. No shit, Sherlock. So fighting for my child will magically guarantee more qualified, competent medical professionals will appear in this community? Color me unreasonable for being frustrated nobody seems to care or for wishing there was a Williams clinic within 1000 miles.

I think there is quite a bit of fight in me, thank you.

I was asked to hold an infant for a few minutes during the session while his mother temporarily left the room. Again, nothing in my blackened heart budged. As my biological clock begins to run out of time, I feel absolutely nothing at all. I actually felt guilty for a few seconds about feeling nothing but then found myself wondering if it was socially acceptable to hit the Taco Bell drive-through at that time of the morning. I couldn't help it. After all, this is the same baby who smells a little like a gordita supreme to me.

Overall, my blueness has improved. In part this is because I called the cardiology office, and the woman who answered the phone actually remembered Erik from last year, even though his cardiologist has moved into a different facility across the street (one of my fears was that he was lost to followup). They asked if they could call me back, and I agreed. I was soon informed that since Erik is doing so incredibly well, he would not need another echocardiogram until October when he turns 3. I very politely explained that it is because he is doing so well I have become more of a paranoid freak show than the mothers who are go in with their children every three to six months. The nurse very appropriately and genuinely laughed with me and said I was completely welcome to come in and get the study early to help alleviate any worries, but I declined and said I put all of my faith in this particular doctor and that we would see them in October. Wow. I'm so glad I called. For once I did not feel like I had been swept under the rug by the medical community. If only all of his medical care was of that same quality.

Tomorrow a phlebotomist comes to the house to take our blood and urine for our new life insurance policies. This means I'll go easy on the gorditas, margaritas, and cigars today.

After that, I'm not promising anyone a dang thing.