Alone Time

I had the afternoon to myself today. First, I stopped in to a dark, windowless bar the size of my living room I discovered recently to tune the world out, play video slots, and have a whiskey with a handful of the geriatric set having lunch. The girl tending bar remembered me from the single time I had hidden there one afternoon not long ago, and she made a nice fuss over me, patting my shoulder and making sure I was comfortable. The busy, well-lit places I used to go every couple of weeks have recently closed their doors. Times are tight. Despite the troubled economy, I won $1.10 after playing for about an hour, cashed in, and said my goodbyes. I then escaped out of the heavy, halfway hidden wooden door back out into the humid afternoon and drove to a used bookstore I have never stopped in but have wanted to for four years now. I made myself at home in the stacks and selected a true crime novel about a criminal profiler, a Stephen King book of short stories I never heard of, and some true stories about the American West by Zane Grey. I always wanted to read Zane Grey but never have. With the male half of my personality satisfied, I applied lipstick and declared it official girlie-girl time. I headed next to the ugly, bustling little strip mall to visit the salon and slipped cash to the merciless woman half my size who takes me to the back room and rips off most of my eyebrows. She displayed the muslin strips covered in my former facial hair like trophies and shook her head. Despite her stern facade, I laughed and told her I had missed her terribly.

It was glorious time well spent.

While I did this, I tried not to think about my friend lying inside an MRI machine imaging his lungs, which turned out to contain food and debris he can no longer seem to funnel down the correct tube because of his ALS. He has a resultant infection and needs to be on IV antibiotics, as the normal ones do not seem to have much effect anymore. He seems to be constantly battling lung infections now. I now wait for a phone call to see whether he is hospitalized or not.

Life is so strange. But I'm ready to face it again after just a few hours to myself.

Oh The Humanity

The hot air balloon festival took place across town this weekend. This morning I opened the blinds and saw three of them drifting above the horizon. Erik pointed at each one and counted them for me. Knowing they always make their way on the breeze towards the desert beyond our house, I took Erik out onto the back porch and sat him in my lap while I enjoyed my first cup of coffee. As they rose into the sky, the silence was broken only by the distant sound of their powerful burners occasionally firing. From past experience, I knew that once they drifted over the house, I would be able to eavesdrop on the conversations the passengers were having. It is strange hearing words fall from a silent, blue sky like that. Soon the cool morning air bit me through my bathrobe, and I picked Erik up and carried him back into the house, telling him all I knew about hot air balloons.

A few minutes later, we heard a loud whoosh. Erik looked at me, alarmed. I stared back at him and listened. It stopped and then started again about three times, getting louder and louder each time. I knew they were closing in on us but realized the sound of the burners was never quite so loud before. I grabbed Erik and sprinted for the front door. We made it outside onto the front porch just in time to see the basket under a huge, red balloon come to rest next to the house. Cars and trucks began clogging the road edging our property and stopped to allow the people riding in them to gaze at the bizarre spectacle. A truck towing a large trailer with a picture of a similar balloon painted on the side came barreling down the other side of our property through the thickening confusion.

The people standing inside the basket looked at me, laughed, and said, "Good morning!"

Erik enthusiastically returned their greetings, and I realized I was still wearing only a bathrobe and fuzzy socks. Oh well. After we watched them wrestle with the thing in the breeze for a while, I went back inside and opened the blinds covering the bay window over the tub in the bathroom. By then, the crowd standing there had swelled to about 40 to 50 people. Gracie-Cat took one look at the giant orb and the people around it before her tail puffed to four times its normal size, and she slithered away with her stomach nearly touching the ground to hide under the bed. It seemed that the wind was such they could not take the balloon down without draping it over our house, so the burner fired, and up they went again. I looked upwards through the window and could see through the round hole in the bottom of the balloon. The basket went up after it and disappeared out of sight over us all.

How exciting is that?

I sat and finished the book on the daughter with WS today. It's tough knowing what to say about it, especially since the author could very well be reading this. I admit that it is definitely not the heartwarming story I was hoping for. The back reads, "Michelle’s story encourages every reader to overcome the overwhelming with the help of God to face Another Day, Another Challenge." I couldn't help but feel less than encouraged by what I read. While I admire this mother to no end and think she deserves every award known to man for her courage, persistence, and faith, I felt nothing but exhausted when I closed the book for the last time. It chronicles struggle after struggle, most of which are absolutely horrifying and only repeat themselves over and over, worsening in intensity. The book itself seems to end in the middle of it all during the most horrible scenario without a resolution in sight. If you are looking for a tidy ending, you won't get one here. I suppose there is never a tidy ending to anything. Life's pretty messy. She did her best to express her faith that God would provide strength and the tools to care for her daughter with WS in the end, but it was really disturbing to read. I'm extremely grateful I read it, would recommend it, and am proud to have it in my library but would definitely not recommend it to the newbies on this journey. In the end, I know that every child, WS or not, is different, and the challenges I have with Erik won't be the same as this family's. While I see similarities in our stories, I had to remind myself that she was telling her own personal story, not mine, and that the future is still very unknown for our family. The most important thing I took from it is how to fight for my child in the outside world and get people to listen. Even the ones who don't want to. I will never forget Michelle or her family and wish them nothing but happiness in the future. I hope that she somehow shares an update on their lives soon.

I spent the last part of my day with a couple friends on the front porch sipping cold beer and watching our kids play. I shook off the heartache I had from reading the book and soaked up some sunshine for a while. My friend with ALS stopped by to stoop down and play with the kids, making us laugh in the process, until his face and body betrayed him, silently communicating to me how much agony he was experiencing. He hugged us and left, leaving behind blissfully happy children and me fighting back tears.

I guess life is pretty darn messy.

Ascension

One morning last week I woke up and simply felt better, as if I were never depressed at all. Upon gazing into the mirror, I saw the skin on my face had broken out in one small cluster of angry, red pimples. I normally never sport a single blemish. I knew it. Stupid hormones. Two weeks of pure hell just ended abruptly without fanfare or any sort of medical intervention whatsoever. I'm having second thoughts about getting older. I think I'll stay in my 30s forever instead if this is any indication of how things will be for the next 10 years. One hysterectomy, please. Perhaps even a partial lobotomy. And, yes, I want fries with that. With several cups of gooey, orange fry sauce.

Brian is gone on a guys' fishing trip this weekend. My folks and their friends came over to the house last night to watch Erik while I went out with three girlfriends. I drove out to the mall to meet them for spa pedicures. The leg massage I received was so violent and wonderful that I was shaking when I left. The man practically beat the crap out of my lower extremities, and I would have gladly paid him for more. My toes are my favorite 1950s shade of glossy crimson again. After that, we wore our flip flops to the Mexican restaurant across the street, where I was served cheese-smothered food on a brightly colored platter the size of the steering wheel in my vehicle and a cold Mexican beer with a wedge of lime. We drank ice water long after our meals were consumed and practically laughed ourselves sick. From there, we went to a large hotel lounge on the river to have a cocktail. We paid three dollars to listen to an enthusiastic little band made of very nice looking, slightly balding men play some now ancient but very danceable pop hits. I commented aloud on how the place used to be full of boring, older people, but that didn't seem to be the case anymore. Wait a minute. Uh oh.

This morning I packed lunches for us both and headed to meet the girls again for a hike. We drove a few miles past newly-sprouted clusters of obnoxious mini mansions into the pine woods of my childhood for a quarter-mile stroll up to a viewpoint over a beautiful waterfall. Erik greeted everyone he saw. A man clearing brush from the trail cautiously turned his head to look at me a couple of times before he straightened up and said my name. I recognized him as a former classmate and neighbor I have known since kindergarten. We had last run into each other 10 years ago at our class reunion. We then continued our walk, but Erik was easily distracted and refused to walk further at one point, so I carried him up the hill, ignoring the fiery sensation building in the muscles of my thighs. At the top, I encountered one of Erik's physical therapists, who seemed genuinely excited to see Erik out and about. Erik seemed to enjoy the roar the water made as it cascaded over a ledge of thick volcanic rock, fell in a generous, white spray of glistening droplets to the ground far below us, and churned violently there before continuing its journey downstream. He appreciates strong, powerful noises. Forceful noises. Industrial noises. I find that awfully strange for a kid who is so sensitive to noise. I am still required to rev up the food processor out on the porch when I get a craving for hummus or guacamole.

Our outing was not enough exercise for any of us by a long shot, so we all headed back into town and parked in a bustling lot at the base of the butte, an old cinder cone that rises nearly 500 feet above town. My friend offered me the use of her baby jogger, and I placed Erik's narrow behind in the seat. He informed me that he wanted to get out immediately, but I bribed him with a cookie and told him to remain still. I then checked to ensure I had another cookie for the return trip. I pushed 35 pounds of boy up the sloping spiral road to the top without much of a problem. In the words of John Cougar Mellencamp, it hurt so good. I was incredibly proud because a mere twelve months ago this would have transformed me into a doughy, wheezing heap and resulted in an emergent call to some sort of rescue helicopter. We all ended up kicking serious butt. At the summit, we sat, chatted, and enjoyed the gorgeous view spanning the mountain ridge in the distance, the busy town, and the dusty desert before heading back down the nature trail with my body straining to prevent 35 pounds of boy from careening down the pebbly slope, through spiky puffs of sagebrush and juniper trees, over the edge, and onto the highway below. We made it to our vehicles and parted ways once again. I imagine I will be a little on the sore side tomorrow.

When we got home I found a box from Amazon in the mailbox containing the new book I ordered about a child with WS written from the mother's perspective. As emotional as I have been lately, I attempted not to crack it open but was overcome by curiosity and have already devoured nearly half of it in one sitting. As disturbing the description of her behavior becomes as the book progresses, it was nice to read parts of my life as a mother reflected back at me in the first segment. It made me feel that much less insane. I smiled when I read about many kids with WS living on a diet of peanut butter and jelly sandwiches, approaching strangers without fear, and manipulating unsuspecting adults. Erik tried to hold many strangers' hands today. He smiled and gently touched people's faces who stooped to talk to him and said hello to nearly everyone, including the tiny insects buzzing by us on the trails. I absolutely hate that he does this but see something incredibly beautiful in it, too. The book also unearthed some really painful memories. Memories of Erik having to sleep in his car seat at night for months because of his horrible reflux, leaving the gorgeous little crib and bedding set I had lovingly put together for him untouched in his nursery. Memories of multiple medical studies, some of which yielded horrible results. Memories of hearing "mentally retarded" for the first time from an uncaring, insensitive asshat in a white lab coat. Overall, though, even the sad memories were comforting because they are a little fuzzier to me now and are largely put away unless something like this book triggers them. I can now stop in my tracks where I'm standing in the middle of this bizarre life of mine and look back at where I have been, feeling a little more like a weathered veteran. Like I said, it hurts so good.

The view is pretty darn impressive from here, too.

Meet the Author

God puts resources there for you. You just have to find them; or, working with your neighbors, create them.

-- Barbara Munster (Author)

I had an amazing opportunity come my way recently and was brave enough to take advantage of it. One year ago as I sat on a horrifically bumpy flight to San Francisco on the first leg of our journey to Hawaii, I finished a book called How the Lilies Grow: Considering the Needs of a Developmentally Disabled Child). It was written by a local woman whose daughter had encephalitis as a child, a condition of the brain which resulted in severe developmental disabilities. The book told the story of this woman's journey through heart wrenching grief and healing before special education existed as we know it today. She found strength through education (specializing in social psychology and public administration) and created resources for her daughter and others through training those who work with the developmentally disabled and programs to empower those with special challenges. Her work still benefits people to this day, and she is still working incredibly hard to make sure opportunities exist for people like Erik who have so much to give but are often ignored. I consider her a true pioneer.

For some strange reason, I spotted her name in some literature that came in the mail from our church. Her e-mail address was there, and I had the overwhelming need to write her a note telling my story and how she had helped me through a rough time, hoping I didn't sound like some sort of weirdo. To my surprise, she replied in the same afternoon and said she would like to meet both me and Erik.

She came to my door this morning with a plate of homemade chocolate chip cookies. She was the opposite of what I expected. I expected someone who seemed...well, old, a little tired-looking, and frail. For one thing, she was my height, if not taller, and her voice sounded a little like a cheerful song. She would go on to tell me that she began singing in some local groups because if she hadn't, she would have simply cried all of the time. In looking at her, it was very hard to imagine this wonderfully strong, comforting woman ever cried at all, even knowing the hell she had been through. And, let me tell you, this woman has truly been through hell. Her stories of the mental health care system of the 60s and 70s will always remain with me. She reported that her daughter, now in her 40s, resides in a new apartment now, a far cry from the conditions at the state hospital back in the old days, attends a day program for those with special needs, and has someone who cares for her at night.

Unfortunately, I was supposed to meet Barbara between services at church last Sunday. I explained what happened and my resultant absence, and she reminded me that God isn't only at church. He is working through so many people in the world surrounding our family. While I talked with her, I realized that I am letting my expectations of how life should look clutter the path we are blazing for our son once again. Church is just one example. I envisioned it as a comforting, safe, loving sanctuary for Erik and our family, and it may be at some point, but it certainly isn't now, and I can't force it to be pleasant or easy. She suggested finding something else to recharge ourselves spiritually instead of killing ourselves to do what is "normal" and "expected." In other words, she very kindly suggested thinking outside the box in terms of what feels right and is good for Erik and our family.

I described my quest to find a balance between obsessing about WS 24 hours a day and denying it exists at all. She very knowingly nodded and said she found that taking a more objective look through education regarding the brain and her daughter's condition provided her much comfort and guessed that my medical background provided me some of the same reassurance. She's right. It's amazing what one step back will do. It can enable you to strip yourself of some of the emotion and rawness that can eat a person from the inside out. A lot of the hysteria, obsession, worry, and guilt can be disposed of this way, at least temporarily, for me. When I step back into my life with a clearer, more clinical picture of what we are dealing with, I can cope with the daily challenges more effectively and, more importantly, understand Erik and what he might be tackling developmentally or physically.

I confessed to her that I drive around neighborhood playgrounds in a bizarre search for one without children playing there just so Erik can have peace. I told her how I am unable to attend regular play dates or many activities the mothers I know do. I told her of the fear I have of taking Erik someplace new with new people and strange sounds. If she was thinking I was crazy, she certainly didn't let it show. She said that although we walk different paths, we are still walking together and offered to be at my side anytime I needed her.

As she stepped through the door to leave, she made sure to say goodbye to Erik, who seemed to instantly love her, and asked if she could give me a hug. I said yes. As Erik and I watched her drive away, I felt as if a prayer had been answered.

She was right.

God works through a lot of people out there in the world. To meet them, sometimes you just have to open your front door.

Book Talk

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

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

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

Possession

Williams syndrome (also Williams-Beuren syndrome) is a rare genetic disorder, occurring in fewer than 1 in 7,500 live births. It is characterized by a distinctive, "elfin" facial appearance, along with a low nasal bridge; an unusually cheerful demeanor and ease with strangers, coupled with unpredictably occurring negative outbursts; mental retardation coupled with unusual (for persons who are diagnosed as mentally retarded) language skills; a love for music; and cardiovascular problems, such as supravalvular aortic stenosis and transient hypercalcaemia. The syndrome was first identified in 1961 by Dr. J. C. P. Williams of New Zealand.

(From Wikipedia)

The beautiful photo of my baby above was taken by my mother last weekend while Brian and I were away. Brian and I were talking last night, and we both seem to be on the same page regarding Erik's rapidly changing behavior and his frightening angry outbursts that seemed to begin overnight. For example, if I ask Erik to do almost anything at all, there is often a fierce battle that follows. Yesterday I was kicked in the stomach while I tried to brush his teeth and then later (twice) while changing his diaper. He looks directly into my eyes and almost smiles at me when he strikes at me and these outbursts occur. This behavior is very definitely not Erik-like, and I find it extremely upsetting. I have adopted a deliberately cool demeanor when it occurs and simply put him in his room for five minutes when it happens, but I'm not sure if this is the right thing to do or not. Yesterday when he was asked to find the car at the stables, he went face down in the parking lot and refused to move in front of everyone. Unfortunately, he becoming too heavy to carry very far! Luckily, most of that particular incident came out of being stubborn, not angry, and had a very normal (albeit frustrating) feel to it. His behavior became more aggressive after I carried him to the car. I worry about days when he suddenly seems very angry at me and the world without any warning at all. You may ask why I need to sort out what behaviors are related to my child's syndrome and what are of the normal 2-year-old variety. My answer to this question would be that I need to confirm that these outbursts are WS related because they are heartbreaking. I need to know my own child doesn't really hate my guts. I need to confirm that these are common WS issues that can be successfully dealt with and are not the result of something I did or didn't do. I need hope and reassurance. Pretty simple.

We agreed we need some new techniques and tools to help us cope with this worsening problem, and I found the book Understanding Williams Syndrome: Behavioral Patterns and Interventions by Eleanor Semel and Sue R. Rosner on line. Hopefully, it will answer most of our questions and promises solutions to behavioral problems common in children with WS. I'll post my input on it when I'm finished. The following is taken from what Ursula Bellugi had to say in the foreword in the book. That was the most compelling selling point for me, as I have great respect for the woman.

...the first comprehensive source book on the behavioral patterns of individuals with Williams syndrome. Not only does it summarize and analyze the research literature, it...provides problem-specific interventions, general guidelines for addressing problems...and innovative techniques for developing the potential of many individuals with Williams syndrome....combining research findings with real-life examples, clinical observations, and anecdotal reports...[it] goes beyond generalities by describing variation among individuals with the syndrome...as well as subgroups...[The authors]...are the ideal people to pull these strands together, both with respect to research and to intervention...

—Ursula Bellugi
Cognitive Neuroscience Laboratory, The Salk Institute

Story Time

It's hotter than hades in my office, but I feel like writing anyway.

We were invited to attend story time at the library this morning. Despite my soaring level of personal stress and finding I required some sort of personal coach/event planner/engineer to draw up some sort of schematic to attack my jam-packed day, I said yes. I loaded Erik into the Jeep and hastily tossed him a mozzarella cheese stick for his morning snack, which instantly went flaccid from the heat of his chubby fist and the morning sun. We met up with Kathy, Dominick, and Baby Cecilia and formed an SUV convoy to the public library, a gorgeous new building that reminded me a bit too much of the children's hospital in Portland. After I shook off the surprise wave of nausea and dread, we entered a large, mostly empty room in which a few neat rows of metal chairs sat before an easel and a low table displaying three children's books about the ocean. We chose seats in the front row, and I perched Erik on my lap. He was silent as he soaked in his new surroundings and watched small groups of children and their parents enter the room and surround us. Babies fussed and toddlers expertly ignored their half-caring mothers, defiantly exploring the room. A woman with a sassy, short coif and bright, citrus-colored shirt sat down beside the easel. Kathy handed me a song sheet she picked up at the door.

A booming voice came out of this woman's little body, and Erik and I twitched with surprise. Erik was alarmed but did his best to remain calm and cool. I looked at his face, and his eyes were wide. His body stiffened, but he was obviously already intrigued by this person. She introduced herself, telling us it was extremely important that the parents participate to set a good example for our children. She then confidently inserted her hand up the backside of a very fluffy sheepdog puppet named Winston. Amazingly, Winston's voice took us to the next decibel level. Baby Cecilia, cozy in her car seat basket, did not react in the slightest, and I smiled at my very own bottomless supply of amazement in situations like these. Erik has a weakness for all animals, especially the stuffed variety, and a faint trace of a smile flickered briefly on his lips. We sang a couple opening songs, one about the ocean's creatures and one about keeping our pie holes shut and listening to the stories about to be told, and then the woman began to read the books on display. Kathy said she had some sort of degree in story telling, and she was indeed amazing.

Between books we sang more songs, including the one about staying quiet. I found these books were a refreshing change from Erik's favorites at home about various trucks, cars, and construction equipment. Even old Fireman Small, driving slowly back to the firehouse after saving the house on the corner of Church and Summer streets, is getting on my last nerve. Cocky, glory-hungry bastard. I relaxed, knowing my cell phone was silenced in the depths of my purse and that work could and would wait. Erik was mostly expressionless and silent, but his hands twitched and he briefly patted his torso when we sang, "If You're Happy and You Know It." At last. One flicker of recognition.

At the end of the session we were invited to play with an impressive selection of soft, surprisingly sterile-looking puppets shaped like colorful fish, crustaceans, and whales. I found myself fantasizing about having a Red Lobster in town. Winston the sheepdog made another appearance on the distal end of the story teller's overly enthusiastic limb, and I quickly took Erik up before the other children were able to organize and make their way up to the front of the room. Winston asked for a hug in his booming voice, and Erik smiled one slightly crooked, genuine smile. His blond head tilted slightly to the side to accept the large puppet into his personal space, and his arm very cautiously encircled the dog.

We then toured the children's library, and Kathy and I read a couple books to the boys. Erik's was about trucks, of course. I successfully kept Erik from stroller jacking another family of strangers on our way out, and we reluctantly went our separate ways after Dominick and Erik hugged and waved to each other in the parking lot.

It only took five minutes before my cell phone began ringing. As I picked it up, I sighed and imagined myself with Kathy, drinking wine in the sun all afternoon and watching the boys play.