Hypertension Part Deux

I took Erik in for a blood pressure recheck today, and it was once again too high. When I asked how high, I was told, "Not extremely high, but it's pretty high."

Uh.

Pretty high?

Please be more specific. Like, explode your eyeballs high or experiencing mild road rage high?

After I was given a very polite brush off and told I could come back in yet another month, I explained that I have watched Erik's WS peers undergo surgery, have strokes, and take antihypertensive medication. I explained my fears that we have not gotten very accurate readings in the past and that I suspect he has been hypertensive for a while. I was told "not to worry too much."

I calmly explained that I wasn't "too worried," but there is certainly a lot I don't know about what's going on in Erik's body, and my alarms have been going off. I explained the issue of renal artery stenosis and the fact I have never seen images of his kidneys. They haven't even done all of the recommended lab tests on him since his diagnosis, despite the fact I gave them a list of them. I recently gave them the list again. Although I adore Erik's pediatrician, I would give my right arm to have someone anywhere on the West Coast who could tell me what the plan should be and reassure me that Erik was in good hands. I'm sick to death of being told I'm the "expert" by physicians who admit they know next to nothing about this syndrome. I have a sneaking suspicion she knows very little about elastin arteriopathy, which 100% of people with WS have, or the high incidence of renal artery stenosis. See, my kid is 4, and his arteries are already hard. Sure, the the last couple of readings could be nothing, but color me a little concerned and in need of more information. I don't believe I am overreacting in the slightest. I was told they would start a referral to the cardiologist. I thought that was a bit over the top but decided I would at least like to speak on the phone with a specialist. Just for a little friendly advice.

I called the children's heart clinic here and identified myself to the woman who answered the phone. She brightened when she heard Erik's name, and I found myself smiling. The cardiologist is going to call me tomorrow, and I hope she can tell me what the best next step should be. I can certainly wait another month for another reading. I can schedule him immediately for a scan. I can stand on my head and sing "Sweet Home Alabama" in my brassiere and panties. I don't care what the plan is. I would just feel better being told what to do for once by someone who uses an authoritative tone, not the faint, buoyant whine of question marks and a pause for my response.

I just want someone else to take the reins for once.

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.

Hold the Cheese

The doctor Erik saw recently called me this morning. She sounded two thousand years old on the phone, but she was very encouraging and assured me that his stool studies were completely normal. As for his symptoms, they continue but have improved. Every other morning I have to wash all of Erik's horrendously soiled bedding and pajamas. It may take another week or two to really determine if dairy is indeed the problem, but I was instructed to continue the strict discontinuation of dairy for now. The soy cheese has worked very well, although he tires of the milk. We'll try rice milk next. Erik is now successfully using the toilet sporadically, although it does not amuse him in the slightest and he usually refuses.

As for me, I continue to watch my friend with ALS suffer. He is slowly losing the function in his hand and will begin treatment with a BiPAP machine soon to assist with his breathing. He admitted today that he finds it more and more difficult to get out of bed in the morning. He coughs excessively throughout the day, finds it difficult to swallow food, and endures bouts of pain and spasms that are so intense I witness his skin turn lobster-red and his shirt soak up buckets of hot sweat. He is virtually unable to even talk through these episodes anymore. He puts on a very brave face, but things seem to be worsening every day. Last weekend as I flipped through the channels on television, I found a movie about Jenifer Estess, a woman who helped launch Project ALS with her sisters after being diagnosed with the disease. It was really difficult to watch, but I'm glad I did. She died in 2003 at the age of 40.

I took Erik to see his friend Samantha today. Shaena and I drove to the next town to take the kids to McDonald's for lunch. I ordered Erik a Happy Meal. He loves french fries and let me feed him torn pieces of an entire hamburger, although he had no part in putting any of it in his mouth himself. When we are out, I usually feed him by hand, as he freezes up around strange noises and other children. The french fries, however, were a different story.

After lunch in the play area, we took the kids to the gaping hole that houses the stairs to the Playland slide. Erik had no interest in entering this dark orifice, so after a brief comparison of the tunnel's size and the width of my buttocks, I sighed, took my tennis shoes off, and crawled up inside, encouraging him to follow. He wasn't buying it. I disappeared up the little spiral staircase, and he followed only because he was out of attractive options. We found ourselves at the top near a plastic tube that snaked out of sight down below. Thankfully, there were no other children using the equipment to complicate matters. Erik was anxious enough. I decided that I certainly wasn't going to cram myself back down the stairs and prayed that the grease trap in the restaurant wouldn't burst into flames while we knelt inside this gayly-colored death trap. I gently shoved a protesting Erik down the stairs, feeling like the most horrible mother in the world, and the tennis shoes capping his plastic orthotics made his horrific ride down the tube slower than molasses, prolonging his agony. Weighing several hundred times more than my son, my descent was much more rapid. I tried not to run him over and managed to gently shove him through the length of purple plastic tubing. The static from the friction against the slide raised my hair at the roots, and with everything being bathed in a purple glow, I felt as though I was moving through Grimace's lower intestine. Finally, we emerged. I was crazy enough to try it once again with Erik. He was even less amused this time. He looked at me, and his bottom lip quivered. His face reddened in alarm. He said, "Go home, Mama?" as he burst into tears. We were done. After I forced him to slide down one more time, we gathered our things, said goodbye to our friends, and drove home, enjoying the scenery and even driving through a farm supply store parking lot to admire the shiny, red tractors. I would consider the entire outing successful, although I wish simple things like play didn't feel like such a struggle. Or more therapy. I suppose every experience is therapy, no matter who you are, if you think about it.

I have attempted to utilize play areas and playgrounds with the help of my girlfriends more and more over time and have noticed Erik's general reaction is greatly improving. He still struggles with tripping, falling, and running into things and drops to his hands and knees to crawl over simple, unfamiliar surfaces that his brain doesn't define well while other kids zip past him without a second thought. The last time we loaded into the car after an hour on the playground, he told me he wanted to go back. That's a first for him. Now if only I could muster the same enthusiasm.

Instead, I still fight tears.

Lactose Intolerant

Peasant 1: Who's that there?

Peasant 2: I don't know. Must be a king.

Peasant 1: Why?

Peasant 2: He hasn't got shit all over him.

-- Monty Python (The Holy Grail)

Our doctor's appointment went well. One thing that absolutely rattles Erik at the clinic is the scale. He clamps his hands tightly over his ears and refuses to step onto the wobbly platform. The clanking the device makes sends him into orbit. The nurse asked him to step up and place his feet on stickers shaped like space ships, but I was required to force him to step forward, resulting in a complete meltdown. As she looked quizzically at us and tried to interpret just what in the dickens was happening, I quickly blurted out that Erik hates noise. There was hardly any noise whatsoever, but I know this particular type of metal-on-metal clanging is the reason Erik freaks out in this situation. It happens every time we visit the doctor. Why I bother explaining this to anyone is beyond me, but I insist on educating people about Erik. It's just awkward, awkward, awkward. Surely there are other children who visit this facility regularly with sensory processing issues. Right?

So after our super-accurate measurement (not) of Erik's weight (34.25 lb with me forcing him forward and supporting most of his weight with the palms of my hands), we waited for Dr. Brown. Erik still had his hands over his ears, despite me assuring him Dr. Brown would likely not be very noisy. It turned out that she was much older and straightforward than I expected. This was a pleasant surprise. She was also very quiet, which pleased Erik greatly.

I explained that after 24 hours of Erik being taken off milk and milk products, I saw the most normal-appearing stool appear in Erik's diaper this morning. Unfortunately, this means that there is a strong possibility Erik is lactose intolerant. She confirmed my fears that Erik has no extra body fat to lose and that eliminating dairy would be a gigantic pain but suggested I do it for the time being. This means no more macaroni and cheese, milk, cheddar, seven-layer burritos, or chocolate. Actually, milk or milk fat seems to be in everything. The nurse then gave me a small plastic bag containing three screw-top vials, some of which were filled with red preservative solution. It was an intimating-looking kit that looked like the components of a biological weapon. Two Smurf-blue latex gloves were thoughtfully folded and placed in the bag, and I chuckled to myself thinking of the messes I have scrubbed out of Erik's bed each morning and from the bathtub. I wish motherhood was as neat as a pair of latex gloves. It's not. Not for any mother I know, anyway.

I am to scrape Erik's diaper with wooden tongue depressors and collect samples of stool for the entities I am certain he doesn't have (ova and parasites, etc.). However, I will do this in the spirit of good sportsmanship and patient compliance and deposit a teaspoon of the nasty material into each vial. I have been instructed to transport them to the hospital within a couple of hours or place the specimens next to my collection of pot roasts and popscicles in the freezer until I am able to get them to the hospital lab. Between the wide feline skid marks resulting from Gracie's thyroid problems and the material that springs forth from Erik's bum, I choose to keep the last space in the house, which happens to be inside a major appliance, completely poop-free. I have to draw the line somewhere. Instead, I plan on driving to the hospital with my sloshing bottles of dung tomorrow.

After our appointment, Erik collected his sticker from the nurses' station and actually seemed to really question me about its purpose for the very first time. I usually stuff stickers in my purse for the nurses' benefit, as Erik formerly cared less about stickers, candy, or toys. This time I handed him the sticker, and he seemed interested in it. I was pleased. He said goodbyes, thank you very muches, and see yous to each nurse and the doctor on the way out. The way he said these things seemed to surprise and thrill each of them. They giggled, which made me giggle. Erik does pour on the charm.

We then took our hemp shopping bag to natural food store and purchased expensive tofu shaped like mozzarella cheese and a carton of soy milk. The faux cheese had a label assuring me that it actually "Melts like real cheese!" Yikes. He drank three glasses of the vanilla-flavored light soy milk when we returned home. I tried it and thought it was the sweat of the devil. I'll stick to skim, thank you. The jury is still out on the cheese.

I plan on making pizza tomorrow night. We'll see if anybody notices the tofu.

Wasting My Time

Erik and I are going in to the pediatric clinic at 9:10 a.m. tomorrow. I became instantly cranky when I called the "nurse advice" line, and she told me that collard greens and kale were great for GI problems. I felt like smashing myself over the head with the phone for even attempting to get in to see someone via this route. I don't know much about children, but I know I have yet to see a 3-year-old gleefully mowing down a plate of cruciferous vegetables, especially when they are ill. I eventually was transferred to the appointment center and was informed our doctor was not available. Sadly, I don't even care anymore. Like it matters! I stated very simply that my son had a GI problem on top of a genetic disorder nobody else in town has/that no physicians know jack about and demanded to see someone who regularly saw children with Down syndrome. Apples and oranges, I know, but I couldn't think of anything else to ask for. Erik's GI problems are likely not related to WS, but children with WS have tendencies toward certain ailments, and I just don't want anything missed.

I plan on being a complete and total pain in the ass, after which I will probably end up calling the children's hospital in Portland, anyway.

Infection

Whatcha got ain't nothin new. This country's hard on people, you can't stop what's coming, it ain't all waiting on you. That's vanity.

-- Ellis (Barry Corbin) in No Country for Old Men

Erik was behaving strangely yesterday. After about four time outs, I took his temperature. It was nearly 103 degrees. We were planning on following his aunt, uncle, and cousins on their way from Idaho over the mountain to visit his grandparents in the valley, but Brian called them and told them we were now all sick with this bug and not to stop to get us. Unfortunately, Brian came down with it, too. This malady is beginning to remind me of the Little House on the Prairie episode where they all eat bad mutton and end up with anthrax, sweating profusely and lying on mats strewn all over the chapel floor. Yes, these are the things that course through my brain during times of stress. Welcome to my world.

I ended up taking Erik to the doctor at noon. All things considered, it was the best medical appointment we have ever had in terms of his reaction. We checked in and sat in the nearly empty waiting room. I let Erik explore the immediate area. Usually, I have to keep him on a short leash, as he wanders up to everyone and climbs up in their laps. He brought me books and played with some of the toys scattered about. When a child came in and out of the room, he greeted the older ones enthusiastically and retreated to the safety of my arms with his hands over his ears when a younger child or a baby appeared. The main reason I took Erik to the doctor was because he clamps his hands over his ears often these days, and I can't decipher whether this means that they hurt or he is protecting himself from potentially offensive noises. I can't count how many times people at school or out and about have gently suggested I take him to see a physician to rule out an ear infection. When I ask Erik if his ears hurt, he doesn't answer me. Maybe that's because his hands are over his ears.

When it was our turn to be seen, he greeted the nurse and the physician's assistant who would care for us. He normally refuses to be weighed or have his height measured because of the clanking noises the scale makes. This time, however, he reluctantly allowed me to place him on the platform with each little tennis shoe atop large stickers shaped like butterflies. I silently hoped they would not try to determine how tall he was, and they did not. While we waited in an examination room, he deposited his little backside in a tiny chair next to mine. The heating/cooling system in the innards of the quiet building made strange noises that came through the vent in the floor, and he gripped onto me tightly when he heard it begin to creak, groan, and wheeze, blowing Arctic air into the small room. I sang him songs and gave him high fives. I determined that my singing does not improve with an illness of this sort.

When the PA examined Erik, he was patient with her. There was no screaming or crying when she poked the otoscope into his ears, and he was obviously not happy about the stethoscope but allowed her to listen to his chest. She informed me that his ears looked fine but that his sinuses were likely brewing an infection, producing the bright green trails of mucus down his upper lip we were seeing. Erik is almost 4 years old now, and I have yet to place him on antibiotics. Ever. She wrote me a prescription for some but told me I could wait to fill it as late as Monday.

When I got home, we gave Erik lunch and put him down for a nap. Brian and I watched No Country for Old Men, which I ended up liking much more than I expected. I baked a tray of homemade meatballs, made mushroom and onion gravy, boiled some pasta, and made two salads. We all sat at the larger dining room table for once. Erik only ate a few bites of his dinner. After dinner and Erik's bath, our son's behavior became strange again. He went to his room and came back out with his fleece blanket. He carried both Stinky Dog and the blanket to me and climbed up in my lap. The heat coming off of him was intense. I asked Brian to bring us Advil and bowls of chopped-up Popsicles. Erik normally never spontaneously falls asleep anywhere but his bed, but his eyelids seemed heavy, and he nodded off, waking up momentarily here and there to say, "Hi, Mama" or mutter halfway incoherently about something I promised for his birthday this year. We finally put him to bed.

I awoke from a deep, Nyquil-induced sleep to a drunken-sounding man screaming bloody murder at about 1:30 a.m. My heart pounded so hard that I could barely breathe. Brian asked me what the man had said, but I told him that I wasn't sure. I found myself crouched down in the bathroom, peering through the screen of the open window into the darkness, knowing that I'm blind without my glasses but doing it, anyway. The yelling subsided. I reminded myself that the cave across the street is an idiot magnet in the middle of the night and that the hour for satanic rituals had likely already passed. I am still haunted by the memory of waking up to the sound and bright flashes of a shotgun emptying from that same area into the house next door a couple of years ago and find it hard to settle back down. I previously called 911 at about this hour at least twice since we moved here. I retrieved the baby monitor from the dresser and clicked it on. Erik's room was silent. Brian's breathing in the darkness confirmed that he was already asleep again. I sat on the bed a few minutes before lying down again with my ears on high alert.

When the adrenaline had run its course, the Nyquil grabbed me and pulled me back under again.

Growth

I just woke up from a dream in which I had been arrested for an unknown offense and incarcerated at a women's correctional facility in a small cage at the top of a tall tower that swayed in the wind. The movement of my cell was so pronounced that motion sickness was a permanent ailment. I began to complain to a nearby guard that my stomach was really bothering me from being in the top cell of the tower and that I would like to be placed lower like the other women were. To my own horror, I then heard myself cave in, just as I always seem to do in reality, explaining that I was tough enough to handle it, even though I was screaming inside my own head that I felt like I would die there if something wasn't done.

I am now seriously considering canceling our appointment with the rehabilitation specialist. I asked Erik's private physical therapist, who was kneeling on the floor stretching my son like a happy little pretzel at that moment, what she thought of seeing this person, and she let out an obviously irritated snort from her nostrils in response, making me jump a little. She told me that Erik was "doing fine" and that seeing a developmental pediatrician in Portland instead might be a better idea. It was Erik's doctor who referred us to the rehab specialist, and I am now more confused than ever as to what to do. I no longer feel good about this new physician, and Erik's PT informed me that she just automatically refers children to our local hospital. This is not good news, as they are unable to help us at all unless there is some sort of heart-related problem that needs to be addressed. All I want is some reassurance that I am doing the right things for Erik medically, and I feel like I am being short changed.

The last time we set foot in the hospital in Portland was the day we were given our diagnosis. The geneticist seemed completely uninterested in seeing us ever again, and I can't seem to find exactly what we need on their website. I suppose this means I need to call the genetics department for guidance. I'm frustrated because I feel like I got steered in the completely wrong direction by Erik's own doctor. The fact that Erik's PT seems to detest the new physician here also doesn't make my decision making any easier. Erik's PT did say, though, that many parents with children with genetic deletion syndromes travel to Portland once a year to be seen. Maybe that's what we need to do.

In the meantime, Erik grows at the speed of a newly-rooted kudzu vine. My father pointed out how amazing it was that Erik's toes have shot past the end of the soles of the orthotics he wears on his lower legs, seemingly overnight. Although he has worn the braces for over a year now, his toe walking is more severe than ever, and if he doesn't wear braces, he is so jacked up that he practically falls on his adorable little face. His body has grown, too, and yesterday I witnessed him crashing into furniture, walls, and toys, tripping over his own appendages as if he had consumed four Long Island ice teas. He has always been cautious about moving about the house and has now sustained more injuries during this week than he has in three years. Erik's fine and gross motor skills have always been documented to be very poor, but this is completely a completely new low for him, making me wonder if he suddenly has more of his own body than he is used to carrying around. I just have this feeling in my gut that won't go away. He is changing in every way, seemingly by the second, and I want someone to tell me exactly what's going on medically as he grows at light speed and his body seems so tight. I don't want to hear "He's fine" and feel like an idiot for asking in the process.

I just want help for once when I ask for it. That's all. Is that so wrong?

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.

Edgy

I am in a relatively sour humor today. I feel as if I could snap at any given moment, and I detest that feeling. It's poison in my blood. I have a heavy, strange feeling of impending doom. I feel a lot like Michael Douglas in the movie Falling Down, right before he exits his car and abandons it on the freeway in the festering traffic jam on his way to get a hot breakfast and a new semi-automatic weapon. I think it's a combination of stress, being trapped indoors, and fighting the cold Brian has had for a week. Of course, I haven't received the full-blown version. I have been taking my vitamins and working out daily, so my body is just really busy being exhausted and fighting it. It would almost be better to just get it over with. Luckily, you can't really tell I feel like soggy cat food in the photo above because sick eyes disappear right into black and white.

Erik has a doctor's appointment tomorrow. We see doctors so infrequently that I think my tolerance for them has actually lessened. I hate the waiting rooms filled with cutesy crap that Erik doesn't even notice, the cheap furniture teeming with billions of microbes, and the chance the nurse who assists won't know what the hell she is doing, wielding a needle as if she is Luke Skywalker with a light saber, merrily twisting it around in my child's tender flesh. Oh yes. Hopefully by tomorrow I will feel a bit more like Ms. Merry Sunshine and less like Jack the Ripper. Now that I think about it, most of my mood probably stems from knowing I will have to sit in that waiting room. If that doesn't make me feel like going on a shooting spree, nothing does. I hate it. I hate it. I hate it. I hate being immersed in that environment against my will. I hate it. Erik tries to mingle with other kids, and they end up staring at him or scaring him to death with an unexpected noise. The last time we went to this particular office, a very sweet little boy said hello a little too loudly, and Erik began screaming and ran to me. God. I hate it.

We don't have an orthopedist, but my gut is telling me we probably should. I will ask about this tomorrow and perhaps contact the children's hospital in Portland or a Williams clinic across the galaxy for suggestions. As Erik is the only child in town with WS, I don't expect to get even a single answer I need tomorrow, but I feel like I need to at least figure out where to go from here to ensure he is growing properly. I'll run it up the flagpole and see what happens.

Erik is enjoying the pool at physical therapy this afternoon. I'm glad he got out of the house today, as I feel I am boring him to death. At therapy when his PT swims him over to the thermometer in the water and asks him what it says, he confidently and consistently announces the temperature is 92 degrees. Apparently that was what the thing said months ago, and Erik never forgot. It's very Rain Man and makes us laugh.

Today Erik came up to me out of the blue and loudly announced, "I have a question." I have no clue why or where he picked up this phrase. When I looked up from what I was doing and let out a snort, he began to laugh, too. I love my little Random Man.

I was invited to a girlfriend's house for margaritas, chicken enchiladas, and an afternoon watching ridiculous movies and sitting in the hot tub Saturday. I'm so in. It's when I'm edgy that I usually let my worries go and have the most fun. Re-reading what I wrote just now, I think I am getting a tad bit crotchety and need to remove the two-by-four from my posterior.

Jose Cuervo, here I come, baby.

I Hate You, Mom

We made a trip to see Dr. Mike, the silver fox with a DDS, yesterday. Erik and I arrived early, of course, as I am pathologically early to everything, and he amused himself with the spinning wheels of a giant wooden bus in the matchbox-sized waiting room. Two female assistants who seemed to despise each other led us back through a short maze of tiny hallways to an open room containing two reclining examination chairs, a few matching chairs on caster wheels, and a craptastic collection of dolls, stuffed animals, balls, books, and Magnadoodles. One assistant closed a nearby examining room door to prevent any shrill noises from upsetting Erik following the short version of my speech regarding hyperacusis. They asked me questions, which I answered halfassedly as I chased my crawling son, who found a metal cart of dental tools and suctioning equipment much more enticing than any toy or book available. As I maneuvered around the brightly colored clutter in the office pursuing Erik, I caught the tip of my pointy-toed boot on a large wooden play center that was apparently screwed to the floor at a jaunty angle. I tripped, of course, and recovered by following up with a spectacular hop-hop-hop-hop-hop type of maneuver on one leg while one assistant looked up from Erik's chart with a dryly amused look on her face. As I was on edge anyway, I only narrowly avoided screaming, "There's your lawsuit, bitches!" I regained my balance and composure and sat with Erik in my lap as Dr. Mike emerged from his work on a small patient with a rather impressive, bass-like gape.

Dr. Mike's routine makes my skin crawl. He is kind but barks sharp yet barely audible orders through a wall of white teeth to his assistants, and they obey, jumping as if the floor is suddenly one thousand degrees. Dr. Mike began by examining a doughy-faced Cabbage Patch-type doll with a small, plastic mirror. He then announced to Erik that he was going to examine my "pretty finger" and, to my horror, took one of my man hands in his own, making it readily apparent to all I am in desperate need of a manicure. Nice. He then asked me to hold Erik down as he forced his mouth open and examined Erik's teeth, never letting his own wide smile falter in the slightest. Tears squirted from Erik's eyes, and his face became a deep scarlet. His strange infant cry began and intensified, breaking my heart into a million pieces. Thankfully, as I am a veteran parent of many of these types of pediatric examinations, I smiled my own plastic smile and cooed reassuringly, knowing Erik was far away in that place where he can no longer hear my voice. I went through the motions, anyway, like any good parent should.

The exam was over before I knew it. Dr. Mike said no lacquer was necessary, despite the fact the assistants had it ready and insisted Erik received it before (he has not). Dr. Mike made it quite clear I was taking perfect care of Erik's choppers, and, amazingly, his permasmile widened a little as he patted me firmly on the shoulder and made his exit. We were handed a bright blue balloon with the name of the office printed on it and asked to schedule our next appointment for the summer. The girl at the desk, obviously a meteorologist in her spare time, informed me it would be warm and sunny the next time we came to see Dr. Mike in July. I said that I hoped it would, giggled vapidly along with her, and led Erik out into the main lobby. He smiled at everyone as we left and charmed them all.

Seconds later, Erik's smile faded completely. He glared up at me and began to demonstrate the strange hand flapping I have read about in all of my WS literature but had never witnessed. His face reddened once again, and angry, hurt noises came out of his mouth and throat. Words were no longer adequate or necessary.

No doubt about it. He was PISSED.

It was quite apparent that he was angry at me and me alone for bringing him to this awful place of Nazi medical techniques festooned in primary colors and bobbing helium balloons. My boy may have his challenges, but he's far from an idiot. He knows a medical facility when he sees one. I next attempted to coax him out the door into the parking lot, but he stood there raging at me, hands flapping wildly as if he was planning on taking off into the air. When I approached him, his hands began slapping against any part of me he could get his hands on. He continued his miniature slap assault, some of which actually hurt, as I stooped down to his level to whisper that he needed to calm down. Instead, he shoved me and actually growled. I freed the helium balloon from my sweaty palm to settle against a scratchy panel of acoustical tile in the ceiling and picked him up under one arm, attempting to balance my purse and the ridiculous, Barbie-sized bag of crap pediatric dentists hand out in my other arm, readying my car keys. I very calmly carried the screaming, kicking 35-plus pounds of livid boy into the slushy parking lot, where I held him down to strap him into his seat and made it to my place behind the steering wheel without spilling a tear, even though my heart was injured. I found my iPod and pressed play, turning up the volume and trying to ignore the flailing soles of the little tennis shoes behind me wreaking havoc on the seat in front of them.

By the time we completed our five-minute drive to his grandparents' house, he was a singing, giggling, delighted angel, ready to charm the world again.