Slosh

Those who do not know how to weep with their whole heart don't know how to laugh either. -- Golda Meir

Tonight I sit here with tears streaming down my face. It has been a rewarding day, but it didn't end well, and I'm just too raw to keep my emotions inside. A child in the WS community died this week, which always throws me off balance for an undetermined amount of time, Erik is having his awful stomach problems while I am trying to toilet train him, and I am not adjusting to the lull of summer very gracefully. I feel like I live a perfectly happy and successful life but that I am required to do it with an ruthless, ongoing intensity that places my emotions just beneath the surface. That's where the numbness I have mentioned keeps things in check. I have learned to keep this hidden and even fool myself into thinking the lake of sloppy emotion isn't threatening to spill at any time, but it sometimes sloshes and takes me by complete surprise.

Today I took Erik to pick up lunch at Subway. As we waited for his sandwich to be made, the overhead speakers began to thump with the 1986 OMD song "If You Leave." One of my favorites. I grabbed Erik's hands and danced with him in line, swaying back and forth with the music. The women preparing Erik's food were charmed by his smiling face underneath the brim of his baseball cap, and we danced our way to the front of the line, where we accepted a small plastic bag containing Erik's meal. We then made our way out into the blinding sunlight.

We arrived at our local playground just as the school district began serving free lunches to children in need. I gripped the steering wheel, squinted at the melee, and sighed. This meant the park was clogged with children. Lines of parents stretched out in front of two stainless steel refrigerators on wheels at the edge of the playground. In the past, I would have turned around, but I had previously made a promise to Erik about going to this particular park. I have nearly forgotten the days of cruising parks in town to find ones without children playing in them because of Erik's sensitive hearing. Those days are gone. Miraculously, a parking space opened up before us, and I had our things unloaded in no time.

In our community, the senior center abuts a large playground full of children. This is brilliant, if you ask me, as different generations can mingle together. Erik and I walked away from the chaos and chose a quiet, shaded picnic table toward the senior center. A gray-haired man rudely and enthusiastically revved the engine of a brand new Ford Mustang with racing stripes in the parking lot, and the people walking out of the building laughed. Erik looked up at the shelter we sat under to shade us from the sun in amazement. He said, "Oh wow. This is a nice house."

We were soon joined by another elderly couple at the next table. She opened a pack and spread out a red and white checked tablecloth. On it she placed fancy wine goblets, fat sandwiches encased in plastic wrap, and a miniature bottle of wine.

A pair of frail-looking women tottered down the sidewalk towards our area. They seemed to be holding onto each other for dear life. They chose another nearby table and opened another pack containing food, including half cans of A&W root beer and goldfish crackers. Erik grinned at them all, muttering the nonsense phrases he considers charming but that nobody else can come close to understanding. Sometimes I wonder if he slurs these made-up things just enough that people find themselves leaning closer to him. It wouldn't surprise me.

One of the women was very chatty. We consumed our meals, and I enjoyed her questions and comments, some of which made me laugh ("What's the deal with that vitamin water they are selling, anyway?"). When we were finished, I helped Erik dismount the awkward bench of the heavy picnic table, and I asked him to say goodbye to our companions, which he did. I threw our garbage in a tall, round can nearby, and Erik stood on his toes to try to spot where it all went. I had to pry him from it in order to begin our trip back up the sidewalk to where a sea of kids churned all over the play equipment.

Erik asked to try the slide for babies. The playground is divided into three areas appropriate for different age groups. We started with the area for young children and worked our way up successfully for the first time with no protests from Erik. He climbed over each structure completely independently while I sat soaking up sun through a layer of SPF 45 moisturizer nearby.

This is a major accomplishment for us both.

At the final play area featuring a maze of bridges, elevated walkways, and one steep slide, a group of seemingly gigantic, obnoxious boys camped underneath Erik's favorite rock climbing wall and screeched, playing some made-up game, hurling insults at each other, and occasionally accidentally kicking each other in the face, much to my delight. I could not even begin to accurately guess their ages. A large boy rode a skateboard down the slide, making the massive structure shake. Two small children glided by on scooters. Erik began to lurch for the wheels, and I said, "Erik! Not yours!" He looked at me with complete understanding and acceptance in his eyes and moved on to an elevated walkway over the soft playground surface. He gripped onto the railing with both hands and gingerly took step after sideways step, slowly making it all the way across the unfamiliar surface, simultaneously greeting the children who passed by. He then ascended a flight of stairs and found the top of the slide, sitting on his bottom and sliding back down to me.

My heart swelled with pride.

The boys' screeching only intensified. Erik's hands suddenly flew to his ears, and he stopped in his tracks, but he never once looked back at me. The children sprinted by him at their frenzied pace, and he simply stood still in the sunshine, looking like a frail creature from another planet observing another culture steeped in an inhospitable atmosphere. I quickly climbed up the structure and stood behind him, placing my palm over his chest to assure him I was there, although he didn't really need it. If anything, I was the one who felt like an alien. I really wanted to touch him and feel anchored to the planet again. As I felt his heart beat under my hand, I winced at the familiar, brief stings of anger and despair before they faded deep under my ribs. The sudden, stabbing pain caused my eyes to water, but any tears dried before they could spill from behind the dark lenses of my glasses. And then things were fine again.

I said, "Wow, those kids are pretty darn loud."

Erik was in full agreement.

He then came out of his frozen stance and began to move again. Children approached him and asked him questions. When he didn't respond, they looked slightly confused but in the end didn't seem to care. I bridged the gap between them and asked Erik to attempt what they were doing on the play structure, making them feel important and easing Erik's anxiety in the process.

I'm no rookie anymore.

We ended the afternoon hand in hand walking back to the car. I asked questions about what we had seen, and Erik seemed satisfied. We agreed that we both had a great time.

Tonight I asked Erik if he wanted me to turn on his CD player to listen to music. For a couple of months now, he has been telling us no. I finally concluded that something wasn't right. I suggested some songs, and he finally agreed on a CD to play. I thought that it was odd a child, especially with WS, would not want music for this many days in a row. Erik adores music. He seems to feel it physically.

Erik's CD player is tired. I purchased it before he was born to put in his perfect nursery to play perfect lullabies to a perfect baby. It has never really worked very well, which, at this point, is no freaking surprise. I have to laugh about this. These days I have to do what my best friend calls "percussive maintenance" to get it to start. With a mere few taps using the soft side of my fist on one speaker, the music usually plays. I have done this many times.

I placed the CD in the thing and snapped the lid shut. The machine very quietly clicked and whirred, desperately trying to locate a track to play.

Nothing.

I began the rapping on it, listening for the sound of success. Instead, I heard a strange, frightened wail begin behind me. When I turned to look at Erik in his bed, his face was bright red, and tears were streaming down his cheeks. Where the skin on his scarlet face was creased, it was blanching pure white.

"No music, Mommy! Turn it off! I don't want it!"

He continued to beg me to make it stop, even though the music had begun and sounded fine. I felt like the worst mother in the world for ruining this thing that he formerly enjoyed so much in the safety of his room. How a child could survive an afternoon of the world's loudest, worst-behaved children at a playground and then shrink in terror at the sound of an electronic device whirring and my hand slapping against a piece of plastic was a mystery and caught me completely off guard. I frantically stabbed at the stop button before I ran to him and held him in my arms as he continued to cry. I promised I would throw the stupid CD player away and find him a new one as soon as I could. I told him that I was so very sorry. As I hugged him tight, the tears I had fought earlier finally spilled and streamed down my face. I hid them from Erik, but I could tell there would be many more, so I kissed him on the forehead and got up, tucking Stinky-Dog in his arms, which he was too upset to acknowledge. He seemed to be in a glassed-over, anxious trance. He was red faced, sweaty, and solemn when I shut his door for the night.

Life is good, but the intensity seems to follow me everywhere. And once in a while it turns me into a blubbering heap.

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.

Macho Mom

Yesterday Erik decided that going to school was the worst fate possible. I concluded that because I had applied sunscreen all over his exposed skin, he was under the impression we were headed out to play in our own yard, not go to school. He then threw one of his famous fits while I located my keys and purse and tried to herd him out the door. He stiffened his body, growled, and flailed his arms and legs about like a Solid Gold dancer, making it very challenging to corral him in his car seat. I backed out of the driveway and frantically clawed around the Jeep for my iPod. I scrolled down the display until I found a song that might calm him down, a technique that usually works. There's nothing quite like blasting a Village People song while listening to a child scream at me at 9 a.m. It almost made me laugh. Almost. As we made our way across town, Erik stopped struggling in his seat and realized he was done for and that I was not going to fall for his little antics. I told him that he would play on the playground at school, after which he frantically scanned the landscape zooming past his window for anything resembling a park. He saw one and said, "There's a playground!" He continued pointing out anything that remotely resembled play equipment, including rows of horseshoe pits, telling he he didn't want to go to school the entire way. Even after almost a whole school year, he does not completely enjoy being around other children. He likes them just fine, but they are just too noisy, and he endures this only because he has to.

As it turns out, he apparently did fine once he was there. His teacher kicked me out of the classroom relatively quickly when I explained Erik was having an off day. I then headed to the salon to get my hair cut and hoped for the best. When the bus came up the driveway later in the day, Erik was in his seat smiling like the grand marshall of a ticker tape parade.

We had just one more major meltdown before the day was over. He loves the outdoors and detests coming back inside. Fortunately, however, I have figured out how to cope with this situation. I fed him, brushed his teeth, dressed him for our 85-degree weather, and gathered the work I had to do so I could complete it during his nap. We spent an hour outside in the glorious weather. Erik pushed his stroller around the property, as usual, and I sat in my lawn chair. At one point, he climbed onto his tricycle and pedaled a bit with my help. When it was time for me to work, I began putting things away, and he began screaming. I picked him up, dusted him off, and took him inside under my arm. I placed him flailing about in bed and screaming at me and shut his door. Having a gigantic hissy fit tends to tire a boy out. He slept, and I worked, finishing all of my rheumatology progress notes and sending them off electronically before dinnertime. Oh, I'm getting good at this.

My bright spot of the day was when Erik woke up and came out to cuddle with me as I enjoyed a cocktail and the evening news. He was in good spirits, having slept his usual three hours, and asked if we would go on a walk. I hugged him tight and said that his Boppa and Gua would probably take him on a walk the next day. I said, "Don't worry, Erik. You'll go on a walk soon."

He smiled and replied, "Eventually."

Death Becomes Her

Erik is doing exceedingly well at daycare. He has gone twice now, and I was amazed to hear that he took naps when instructed, something he seems unwilling to do at home. He loves the children there and talks about them all by name.

The bad news is that I am still feeling very ill. For the last six days, I have felt completely fatigued with a break here and there of feeling like I was recovering. False alarm. The sore throat I had came and went within 24 hours, but I remain so incredibly exhausted that performing my daily routine and an afternoon/evening of work is becoming more than I can manage. My parents are away this week, so I must work half time around Erik's naps and the time Brian is home, and I am simply spent. I planned a trip to the craft store with Erik this morning to begin gathering components for the decorations for his birthday party in October but barely made it to pick up my work and back home before collapsing. Loading and unloading my child from the car and walking him in and out of the medical center while juggling correspondence and audiotapes took every last bit of strength I had left. I am now unable to complete the daily morning workouts I have mastered over the last four months and find myself under a blanket on the couch instead wishing for a speedy demise.

Erik remains terrified of the sound of sirens and sobs inconsolably if he is in bed when the sound of them fills the evening air. Since the surrounding landscape is seemingly aflame every ten minutes, this is a common occurrence. I spent some time lying in bed with him this evening trying to distract him, talking of our visit tomorrow with our neighbor. My neighbor's 18-year-old son leaves for Marine boot camp Sunday, and she will visit us tomorrow, undoubtedly arriving in the sputtering golf cart with Max, the wiener dog, for Erik's benefit. I anticipate serving bloody Marys at an unholy hour and dispensing many soggy, genuine hugs. I hate to say it, but sometimes Williams' syndrome has a gorgeous silver lining. I will never need to know the pain or anxiety of watching my baby boy leave for military duty.

I called a number in the phone book that correlated with the name on the trucks speeding down the private drive on the back side of our property (see previous post in which I mentioned screaming at the top of my lungs at the work trucks traveling 85 mph). I left a voice mail respectfully requesting they slow their pace, as I have a 2-year-old who toddles around our property and was concerned about his safety. Today the stream of trucks passed by at the almost ridiculous speed of a somber funeral procession, and I was taken aback. When I related the story to a visiting friend who stood at my window watching them pass, one of the workers apparently extended a rudely stiffening middle finger seemingly right on cue, aimed directly toward the back window where I sat. That's it. This is war.

If this feeling of exhaustion does not pass by next Monday, I will get blood work done. Something just isn't right. At this rate, if I have to kick somebody's ass, I will need to hire a general contractor to do it for me.