Live Nude Girls

Life is pain, Highness. Anyone who says differently is selling something.

-- Westley (Cary Elwes in The Princess Bride)

Thursday night I finished work and drove to the senior center with a large bowl of pasta salad I somehow found time to construct during my day from hell. When I arrived, I asked the gentleman at the front desk where the special needs mothers' support group was being held, and he said that he would show me. He took off as if I would perish if I wasn't in the company of these women STAT, and I had to practically jog to keep up with him. He held a door open for me, and I found myself in a large, gymnasium-like room with a small table standing like an island in the center of an expanse of shiny wooden floor. A serious conversation was already going strong. I pulled up a chair and sat down, feeling like a spy. Soon there were about seven of us. Thankfully, a woman I recognized from Erik's school took the chair next to mine. A woman from our parks and recreation department spoke to us about classes and services for children with special needs. I was excited and scared at the same time discovering things I might do in the future with Erik, and she listened to our thoughts and concerns. We created a play date and scheduled it next month for just our children and their siblings. No stares. No fear of failure. It would serve as a safe place for me to get a foothold in the community, make connections, and see what Erik is capable of in a group setting outside of school and therapy. A place to push off into the typical world of school and play with assistance from people who have been educated how to help children like Erik excel. She then left us to be alone with each other, soaking in a sense of newfound, easy intimacy. Two hours easily slipped by. I plucked salt-dusted M&Ms out of a bowl of snack mix in front of me and listened. The woman next to me cried silently, dabbing her eyes with a bumpy picnic napkin. I wanted to dig through my purse for the dogeared packet of Kleenex I never use but was afraid to interrupt her delicate state of grieving, her face coated in a hot blush. I sat very still, as if I could scare her away with a quick movement like a shy deer in the woods.

As the sun set and its last rays of light spiked through the windows, I realized the white Christmas lights strung above us along the ceiling were on and began to bathe us all in a soft, angelic glow. I suddenly felt as if I was at the world's most depressing and poorly attended gay prom. The woman who spoke to us earlier quietly reentered the room and asked us if we wanted the fluorescent lights switched on. We all said no simultaneously, as if we all shared the same brain. She shrugged and left us alone once again.

I have never attended a support group before. I was surprised to find tears on the faces around me completely shocking. Honestly, I would have been less shocked to enter the room and find everyone completely naked. I came to the conclusion that the majority of my support from women like myself has come mostly over the Internet, and I have not really regularly witnessed much in the way of tears except my own for the last three years. Most of mine have been shed in private. I have at least attempted to contain them behind closed doors. I did not have to speak, and my own salty reservoir remained in place, behind a dam and hidden from the outside world. The thought of it escaping was horrifying. The flow around me was open and honest. When tears were not visible, the eyes around me seemed to sparkle with them, ready to carry away the dark toxins of anger, resentment, grief, and PAIN.

We were eventually eighty-sixed from the facility, as the nimble man from the front desk had to go home. We picked up our dishes and escaped into the cool evening, buoyant on shared energy and emotion, still obviously hungry for each other. I felt weirdly happy and high, as if I had held my breath too long and was suffering from moderate oxygen deprivation. A glossy, champagne-colored Corvette sat outside in the lot, its obscene, fat curves spreading thickly over two parking spaces. We all quietly glanced at it as we made our way to our minivans and SUVs. I turned to the girl with the tears on her face, pointed at the car wearing my straightest face, and asked if it was hers.

She looked surprised, giggled, and shook her head.

Yummy Sounds

You just made a yummy sound, so I thought you liked the dessert.

-- Gene Wilder as Frederick Frankenstein (Young Frankenstein)

Yesterday went so well I thought I was on some sort of hidden camera show. I felt as if Ashton Kutcher and his gang would emerge from behind my living room furniture, point, and laugh maniacally. I looked over my shoulder all day.

Erik was a complete angel until he got tired around dinnertime. He watched me work out in the morning, and afterwards I kissed him on the forehead and thanked him for being so patient. I tuned the television to Sesame Street (I time my workouts around Elmo) and took a long, hot shower. After Erik's show, I loaded up my iPod, put on my sunglasses, and invited Erik to join me outside, where the temperature was actually above the 20-degree mark for once. He ran around my chair on the front walk while I dried my hair in the sun. I let him do his thing, for the most part, which mostly involves piloting his stroller around our property, tipping the stroller over to spin the wheels, and righting it again. He did straddle his tricycle from time to time and pushed himself around Fred Flintstone style with his feet. I finally asked him to put his feet on the pedals, something we have been working on, and he did. I straightened his shoes out on the pedals and told him to push with his legs. Slowly but surely, he propelled himself forward and then backwards for two revolutions of the pedals. He seems so clumsy, but his feet obeyed him for a brief moment this way. I clapped, cheered, and jumped up and down like a dreadful Dallas Cowboy Cheerleader reject, thankful we live far enough apart from our neighbors that they need binoculars to see the details of what transpires here. If they are using binoculars and are offended by any of the goings on here, I figure that would be their own darned fault.

When it was time to go inside, Erik did. No fit. No fuss. No physical or verbal abuse. I fixed him an early lunch, and he consumed it with vigor. He even made the disturbing yummy sounds I love so much. My partner called me and asked me to pick up work from the medical clinic, and I suggested to Erik that we take an extra trip to the store on the way to buy ingredients for Rice Krispie treats. He came to the garage door when I asked him to, saving my aging back from having to carry him like usual, and we drove out into the sunshine.

We hit the store first, where Erik charmed everyone and informed shoppers that we were on an adventure. When we arrived next at the clinic, a very handsome young thing stood sentry at the door wearing a Bluetooth headset. He turned to me and explained the fire alarm would be sounding in approximately ten seconds but that it was just a drill. My face fell like a bad souffle, and I turned Erik around almost violently. We exited the building as if we had been told that the reception desk was actually engulfed in flames. As we jogged out, I quickly thanked the man and explained my son has sensitive hearing. He followed me outside, introduced himself, and made small talk as the screeching sound began inside. When it ceased, I thanked him again and Erik said goodbye. Looking back on the way I reacted, I had to laugh. I'm sure to a complete stranger I must look like complete freak show! To think I actually used to care.

In the afternoon I prepared myself to attend my new support group. When Brian arrived home, he was a little surprised I decided to go. I drove to the hospital and found a vacant parking spot in front of the building, which was a complete miracle. The sun was setting, and the building cast an ominous shadow over me as I walked to enter the ridiculous revolving door that makes me feel like a hamster. I admit I spent five extra minutes in the bathroom in the hallway before ascending the stairs in the lobby to the cafeteria. I fussed with my hair. I put on lipstick. I tried to send a text message but was required to walk back outside past the emergency room to get reception to send it off.

When I reached the cafeteria, I saw the friend who had invited me to attend. She was holding a red tray holding a gigantic salad topped with sunflower seeds and those tiny corn cobs on it. I grabbed a coffee mug and filled it with decaf. I watched her pay for her salad, and we walked around the corner into the dining room, where two round tables were pushed together and some women sat around them in one corner. One of the women was in the middle of telling her very intense story about her son being diagnosed with a progressive genetic disorder a mere two weeks ago. I quietly sat down in an empty chair and joined the group. They paused for a moment to check me out before she continued. Another mother joined us and gently parked a wheelchair containing her 7-year-old daughter next to me. The little girl was dressed from head to toe in a cheerful shade of pink but appeared sullen and tired. She slumped to one side, and her mother inserted a pacifier in her mouth. Her sister quietly played on the other side of their mother at the table.

We all had a chance to tell our stories. The reasons we sat around the table varied. Cerebral palsy. Hurler syndrome. Phelan-McDermid. I fidgeted in my chair, and when it was my turn, I reopened the wound of the day of our diagnosis. Instead of pity, I received clucks of sympathy and nods of total understanding. My numbness of late kept me fully anesthetized throughout it all. I passed a photo of Erik around the table. I told the story of him wrapping his hands around my neck yesterday and trying to squeeze. To my surprise, everyone laughed. Including me. I tell a good story, apparently, and another mother explained her daughter was a complete angel unless they were alone, when she was also assaulted. Another mother reported that her arm was sore from comforting her constantly sobbing, low sensory daughter by gently but firmly striking her child's back with her forearm for an entire hour during the night until she stopped crying and fell asleep, lulled by the strange sensation other children would likely find disturbing. When she pulled her own sleeve up after telling the story, there was a small, red bruise there. We all gasped, and she turned red with embarrassment as we began to laugh again. These women are sleep-deprived saints. Warriors. The best mothers ever.

At several times during the meeting, one woman stopped to ask if I had been on any sitcoms and told me mid giggle that she had not laughed much over the past week. I was halfway horrified, as I am aware I have a tendency to make jokes constantly when I'm nervous, unable to control the impulses in my brain. I sheepishly apologized for my dark sense of humor, and she said there was no need. Her daughter is being fitted with a feeding tube in the next couple of weeks, and I could see a hint of fear in her eyes.

When the meeting was over, three of the women asked if I had to go home right away. Surprised, I told them no, and they asked me what I liked to do. After we all fantasized about going our separate ways home to the comfort of our beds and the company of the books we were reading, we all headed for the nearest Starbucks, where we made ourselves comfortable until we were kicked out at closing time. I bought a doll-sized bottle of Italian sparkling water.

When we parted ways, I felt great. Every single word from my mouth was understood at some level by someone there. Because of Erik's diagnosis, I can't afford to be shy anymore and felt more confident than I ever would be in a room with strangers. I learned about money waiting for us in the community to fund special classes through parks and recreation and how these funds were in danger of getting used for other things because parents like us are unaware of them and simply don't know to show up. How there are people and services itching for us to ask for help. How networking can change a community. How I can attempt to comfort someone who is grieving. How maybe I am good for something after all.

Most importantly, I know I no longer have to sit at home isolated from the world on days I am sad and can't find the strength to immerse myself in groups of typical parents and their children because being at home is simply easier on my heart and brain.

How I can seek out these mothers' company and just BE.

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.

Struggles

Yesterday as Erik and I were getting ready to go to school, I heard updates on the story of a 21-year-old woman who disappeared from this area in 2003. They found her body in the last week or so buried in a shallow grave in the woods, and two arrests have been made. An autopsy revealed that she was killed by blunt force trauma to the head. She did not die a pleasant death and was terrorized by her killers before she left this world. Her father cannot afford her funeral, which takes place this week. He is a bus driver here, and his coworkers set up a bake sale at a bus stop off the main drag. Erik and I loaded into the Jeep 15 minutes early and went in search of the bus stop. I saw a couple small folding tables manned by volunteers on either side of a small street. I parked in an adjacent lot and approached one table, where a sleepy-looking woman without makeup wearing a brown, flannel shirt sat. Behind her in the back of a truck sat a bearded, silent, tough-looking man and a large dog. There were muffins and brownies scattered over the surface of the table in crudely labeled plastic bags. I chose three of each and gave her the contents of my wallet. After she thanked me profusely for my extremely modest donation, we made our way to school. I lead Erik up the hallway to his classroom, where he walked in by himself and demonstrated his skills removing his jacket halfway. A therapist led him to his cubbyhole and helped him deposit his things, hanging his jacket on a metal hook. They made a big fuss over the new football zipper pull I just purchased. Bev handed me a stack of information on Therapeutic Listening(tm), including the phone number and name of our local specialist, and I headed down the hallway to parent group.

Parent group was packed. I set my collection of baked goods on an end table. There were three children present, including two babies and a 6-year-old autistic boy who grabbed one of my muffins and proceeded to scatter banana nut-flavored crumbs evenly over the carpet and furnishings from one end of the room to the other. I resisted the intense urge to search for a Dustbuster. There was no set topic of conversation this week. We talked of being teenagers and of the stupid things we did. Of course, my misadventures paled in comparison to the women's tales around me. The stories they told were knee-slappingly funny, but there was an underlying sadness to them all. Their stories seemed to hint of various levels of abuse, absent parents, alcoholism, and custody battles. One woman told of her child jumping a train at age 12 in an attempt to run away. He was missing long enough to print and post missing posters. One woman was shot in the buttocks by an angry landowner with rock salt after she and her friends refused to stop trespassing. Most of the time I forget that these women differ from me at all anymore. While they seemed completely foreign and almost unapproachable a year ago, I found that we have a lot in common, and I now feel at home with them. It is obvious they love their children as much as I do my own. However, sessions like this remind me that I am indeed from a different world, and Erik will be, too. I have learned to count my blessings. As I watch textbook cycles perpetuate before my eyes, I sometimes feel the world is hopeless, full of struggles with no end. We all seem to pass our struggles on like a dark legacy, no matter where we come from or what we have experienced.

After our sessions were over, I picked Erik up and we walked down the hall and out the door. He said nothing, as the children bustling around us were happy and noisy. Once we escaped into the fresh air and relative quiet of the outdoors, I heard his voice say a word I have not heard from him before.

"Volkswagen."

I looked down at him and stopped in my tracks, completely forgetting we were obstructing the waiting taxi and buses in the tiny parking lot.

"What did you say?"

He repeated it clear as day.

"Volkswagen."

He lurched forward again, looking at the sky. I looked to my right. Sure enough, there was a silver Volkswagen Beetle parked there. One of the new jobbers. I laughed out loud. When I told my mother about this later, she informed me that during their afternoon sessions watching vehicles drive by from their comfy seats in front of the picture window, she is absolutely certain about a car's make and model before she reports it to Erik, as she knows he will remember. He can also now identify a Jeep Grand Cherokee from a mile away.

No matter where I am in my head, the boy can always get a smile out of me.

Gray

It's a quarter past cookie time, and I have turned my nose up at a trashy movie in favor of doing a little writing this morning while Erik settles down into his nap. I treasure mornings when I have some time to myself, but this morning I can't seem to find satisfaction in anything. Erik and I had our breakfast together, and afterwards I strapped on some ankle weights and did a 30-minute aerobics video. Erik rolls around on the love seat while I sweat, and his hair stands straight up from the static he generates. Sometimes he will exercise with me, standing in front of the TV screen, rocking back and forth on his feet, and counting, "One, two, one, two." Eventually he lost interest and wandered off into his room, trying the front door to see if it was unlocked on his way by. After I finished and had a shower, we moved on to blocks. He doesn't understand the concept of blocks quite yet and refuses to stack them. I tried building things myself and letting him demo them instead. He brought me some books, and when I turned the page in one about construction equipment, he said, "Backhoe." Sure enough, there was a backhoe. Color me surprised.

I believe I have a parent group hangover from yesterday morning. Truthfully, if the roads had been better, I would have driven out to the mall instead. It was icy, though, and I opted for sitting with a cup of hot coffee in my favorite rocking chair in parent group. I was a little on edge yesterday morning for some reason, so I tried to keep as quiet and superficial as possible. It went fine, but I don't feel any better for attending. I still have a bad taste in my mouth about the whole thing. I'm tired of talking in that setting.

Erik has learned to activate the drum machine feature on his new keyboard. When it begins its jaunty little beat, he taps his chest and says, "ERRWWIK!" as if he is going to launch into a spirited rap song. I believe he would if he had the words to use. Apparently, Brian has been rapping for him (hugely hilarious in itself), and Erik has obtained a little of his own flavor. Brian steadfastly claims he did not teach Erik the chest tapping thing. Scary. However, this week Erik sang, "We will, we will, ROCK YOU! BOOM BOOM." Is he going to be the next LL Cool J or Ted Nugent? Only time will tell. I call him DJ Skooby Skoob, especially when he has his truck on its side and is spinning the wheels like records. He has made great progress in language skills in a period of one week and is now using the words "gone," "goes," and "comes." He says things like, "Daddy gone." If a ball rolls away from him, he will simply say, "Goes." I kept his orthotics off this morning, but noticed that he walked on his toes. I attributed this to (1) the floor being as cold as a mountain glacier and (2) his muscles and tendons being painfully tight first thing in the morning. I'll put him in them first thing from now on and let him have the evenings unshackled.

Erik had the pleasure of meeting our local symphony conductor's mother recently. She brought him a wonderfully soft ABC throw pillow and a little truck. He apparently repeatedly said, "Neat!" and "Wow!" upon receiving these kind gifts. She left my mother's house with a copy of The Strangest Song and was quite taken in by Erik's charm. My mother also told me that the symphony conductor himself plans on reading this book. How lucky am I? What better resources to have in my arsenal for Erik's experiences in the world of music? I hope to bounce some ideas off of him in the future in terms of getting Erik music lessons and finding a suitable instructor for whatever he decides to play or sing. After finishing The Strangest Song, I believe wholeheartedly that music lessons are a must and will be as important as any of the therapy sessions we have used to strengthen his body and mind, whether he has a talent for it or not. Music seems to almost feed these children. One of Erik's most used words is the word "music" itself. It actually comes out as almost a demand.

The photo I am attaching to this post is the view out my office window at this very moment. The vegetation looks as if it has been dipped in powdered sugar, as we have had temperatures in the 20s and fog. I really miss seeing the mountains when I open the blinds in the morning. Seeing something so gigantic is missing is a bit unnerving and makes me feel a little off balance, as if I have lost an anchor.