Erik Quinn: The Heart of a Family: April 2007

Monday, April 30, 2007

Puzzle Pieces

I'm back from Sophie's Run 2007.

Like last year, the event was an amazing experience. Because it was so incredible, my heart and mind are still processing the whole day, and I'm not quite ready to write about it yet. I simply don't have the words. What I can say is that it was a deeply emotional experience for both me and Brian, as well as many friends and family members. It is the one day in the year when pure joy and frightening reality collide in me, stirring up a sweet, dark mist of nameless emotions. As scared as I am spending a day taking an honest look into the strangely beautiful faces of WS, it is the one day we do not have to do it alone. Sophie's mother Heather informed us that they printed 300 race numbers for Sophie's Run participants -- and ended up giving each and every one of them out as the crowd swelled, setting a new record in the event's third year.

Because of Erik my heart is open to so many new emotions and feelings I didn't know existed, and that is a true gift. I am still gathering the memories of all of them all from Saturday, sorting through them all like pieces of a puzzle.

When it is completed, I will post it here.

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Friday, April 27, 2007

April 28, 2001

Six years tomorrow. Happy anniversary, Hooby. I love you.

Tuesday, April 24, 2007

Blogs That Make Me Think

Goodness. I have actually been nominated for the "Blogs That Make Me Think" meme. How cool is that? This means that I must now return the favor and nominate my five favorite synapse-stimulating blogs. The blogs nearest and dearest to my heart, of course, are the ones in my own cyber neighborhood pertaining to Williams syndrome. You may access the stories of these amazing children and their families each day via the links on my sidebar. However, this nomination is a perfect opportunity to share just some of the writers I do not normally link or mention but that I enjoy reading on a daily basis. Why? These individuals allow me the refreshing luxury of thinking of something (anything) besides my son's all-consuming medical syndrome and the grieving I continue to do.

For that, I can't thank them enough.

First, I must mention Lizard Eater. Frankly, I cannot remember how I discovered her, but I no longer let a day pass without checking on her. She was smack dab in the process of becoming a Unitarian minister when her daughter was diagnosed with kidney cancer. She is the type of woman I admire and strive to emulate. An added plus is that she is as honest as I am. I can relate to her the majority of the time, although we are on much different paths. Her take on spirituality is also very thought-provoking. Oh, and she has some scrumptious recipes to share. The lady can cook.

Next, there's Deb. She's brilliant, beautiful, and spiritual. She is in the middle of her own journey grappling with her sexuality and Christianity. She is the author of A Prayer Away from Healing. Her posts are deeply personal and honest. Her thoughts create much controversy, and many times my heart breaks to read the hateful way some people speak to her. While others see someone who is different, I can only see Deb, a woman who is just trying to be herself. I deeply admire her and cheer for her daily. She has a lot to teach the world about tolerance and love. And she makes me laugh.

The next on my list is Waiter. I mostly lurk on this blog, but his writing is freaking fantastic. He is great at weaving a fascinating story about the everyday things, which is something I try to do in my own writing. I smile when I see people comment about how "sensitive" (observant) he is to the world around him. It takes a special type of sensitivity to write like he does, and without that, there would be no story. If you are curious about the world of a waiter, he allows you to wear his shoes through his writing. I have no doubt that his name will be in lights in the near future.

Dr. Charles, a family physician, has a fantastic science blog. I have always been fascinated by science, but an added plus is the fact that the man can write both gorgeous poetry and prose. He is also a published author. I discovered this blog when he posted on Williams syndrome and he was kind enough to send me an e-mail thanking me for my input.

My favorite true crime blog is by Steve Huff. I'm hugely into true crime stories but appreciate his ability to tell a story and the personal touches he gives each of them. He obviously puts a great deal of time into his posts.

Those are just five of my regular stops, although there are many more of you out there I love and admire who make me think in a new direction daily as well. We all have a lot to learn from each other, and I am hoping I can honor each and every one of you somehow in the future. Maybe I'll create my own award for you.

Sunday, April 22, 2007

Earth Day Getaway

Whenever I need to "get away," I just get away in my mind. I go to my imaginary spot, where the beach is perfect and the weather is perfect. There's only one bad thing there: The flies! They're terrible!

-- From "Deep Thoughts" by Jack Handey (Saturday Night Live)

Last week my mother's friend Susan offered me a gift certificate for a lengthy treatment at an expensive resort spa, including a 50-minute massage and a 50-minute facial. She was kind enough to transfer this offer to me before the certificate expired in May for some much-needed stress relief. Quite honestly, the thought of being at a spa makes me more than slightly uncomfortable. It's not normally my cup of tea. However, since Brian and I have vowed to have more fun and step out a bit more, I dared myself to schedule an appointment for Sunday. It's at a resort 20 minutes away, and, frankly, the drive through the rain was even relaxing.

Since traffic was light, I arrived earlier than I expected. I flipped through the brochure in the car, which told me I could utilize the spa bath if I arrived early. I walked through a dark, cave-like lobby to a glossy counter, where a stout woman with a deep voice greeted me enthusiastically and asked if I had visited the spa before. I told her I had not, and she answered, "Well, you're in for a real treat." She held up a key card and a gold locker key on a stretchy red and white wrist band and asked me to follow her into a small locker room. Lockers of dark wood surrounded a simple bench, and there were gorgeous twin sinks fashioned from cobalt bowls of bubbly glass sunk halfway into black granite countertops under a generous mirror. A wicker basket held a hair dryer and curling iron, and various lotions and sprays lined the vanity. She explained that the main locker room was just beyond another wooden door down a short, carpeted hallway past stacks of fluffy, white towels, and that is where I would find toilets, showers, and spa tubs. I opened my locker and found a thin, silky robe with a fluffy terrycloth lining and black spa slippers. I shed everything I was wearing and slipped into the provided attire. I padded down the hallway and slid my key card through the slot on the door, which opened with a clunk. I stepped into a softly lit hallway with a hard floor like black rock. Frosted doors opened into single glass showers, and a row of wooden doors opened to reveal toilets. There were more dark rooms of lockers at the end of the hallway, and I saw only a few women milling about in robes like mine, silent. Their obviously normally perfectly coiffed hair was swirled into fantastic, gravity-defying bed head sculptures from lying on tables and receiving various body treatments involving oils and sprays. I passed a glossy, black panel of glass with a metal handle and identified it as the entrance to the steam room. No thanks. My icy Scandinavian genes won't allow me to enter anything that resembles an oven in any fashion. Further down the hallway I found a metal gate, over which I could see a large, dark room with an empty sea foam green tub glowing in the center. I hurried back into the locker room to retrieve my swimming suit. I was in no rush to be nude in front of God and country. Next time. I returned to unlatch the gate, let myself in, and slipped on my suit. I located a dial on the wall in the darkness and twisted it, sending a loud rush of bubbles from hidden jets shooting into the water. I slowly descended the stairs into the large tub and faced the back wall of the room, letting the hot water envelop my body to my chin. The room was designed to look like a desert setting. A wall of rocks jutted up above me as if I sat at the bottom of a canyon, above which the wall was painted as if it was twilight in soft blues, purples, and finally black. Pinpoints of light twinkled in the dark ceiling like stars. Well, half of them did, anyway. Soft music played above the sound of the dissolving foam on the surface of the water. I thought of Erik at therapy, and I kicked my feet in his honor. I pierced the foamy surface with my freshly-painted scarlet toenails and smiled to myself. Time to let it all go now. No more therapy. No more stress. No more work. Usually after five minutes of hot water, I'm done, but I tiptoed out of the tub twice to reset the timer for more bubbles. When the clock in the hallway above the gate told me I had 10 minutes before my appointment, I searched for an empty glass booth across the hallway and quickly peeled my wet suit off and rinsed chlorine off my skin. I let myself back into the private locker room and ventured out the front door, across another frighteningly public hallway, and through a set of giant frosted glass doors to the spa, where light came through the majority of the ceiling. The girl at the desk verified my identity and directed me through another set of frosted glass doors into the relaxation room, a spacious but more intimate-feeling place decorated in shades of taupe. A cabinet on one end of the room held two types of natural teas and ice water. I poured some light amber tea into a thick glass cup without a handle. I sank into a chunky, soft armchair and put my feet up on an ottoman. I relaxed with my tea for maybe five minutes before I retrieved the slightly outdated copy of Newsweek by my feet. I began reading an article on Ken Kesey and J.D. Salinger but was interrupted by a man who looked remarkably like a member of the janitorial staff. His hair was disheveled, and he wore a taupe-colored jumpsuit that reminded me of a lion tamer. He said, "Nancy?" The woman at the other end of the room silently sipping her tea stood with me. He said, "Massage and facial Nancy?" I nodded, and she sat back down, looking slightly irritated. I win. He placed a hand firmly on my back, guiding me out of the room down yet another hallway lined with small rooms full of soft lighting, tables, and towels. He demonstrated a horribly pronounced limp. We entered one of the rooms with a massage table in the center. He turned down the lights and left me to slip off my robe and slippers. I climbed onto the table and slid under a crisp sheet and a thin blanket. To be completely honest, I am not one-hundred percent comfortable with a stranger touching me, let alone one of the male variety while I'm completely naked. He returned, and I took a deep breath. We chatted briefly before he massaged every part of me that was legal in this particular setting, starting with my toes and ending up with his fingers in my hair. I was jiggled violently, stretched, and poked. He successfully popped my back by contorting my body into a pretzel. It was fabulous. My favorite part was the work he did on my hands and wrists. I voiced my approval, and he smiled.

After the massage, I slipped back into my robe and slippers and met my masseur in the hallway. He offered me a clear plastic cup of water. We said our goodbyes, and I again made myself at home in my chair in the relaxation room before my next treatment. I was soon greeted by a 30-year-old woman named Melissa. She was petite, adorable, and soft-spoken. Her eyebrows were impeccable arches, making her look a little surprised at all times. And no creepy jumpsuit. She offered her miniature hand to me with a purposefully limp wrist and made me feel instantly very large and masculine looking down at her. I suddenly felt like her prom date. She led me into a room identical to the one where I had my massage. There was a rock slab on the wall covered in a silent sheen of slowly descending water. She left me to undress, don a taupe terrycloth coverup, and slip into bed again. She returned and began examining my skin, asking me what my concerns were. I laughed. I may hate everything else about me, but I'll never hate my porcelain skin. I do nothing to it except apply a moisturizer with sunscreen each morning and avoid the sun like the plague. I don't even wash my makeup off until the next morning. Bad girl! Of course, I didn't admit to that degree of neglect. She assessed my pores and epidermis and began applying essential oils to my face, neck, and chest. She named them all as she went. Geranium. Rosemary. Eucalyptus. The eucalyptus brought back a flood of childhood memories of having a cold and being tucked into bed with Vicks VapoRub in a shiny smear under my nose. As the floral scents wafted to me, I imagined myself standing in a bright garden breathing warm, humid air scented with green, living things. The Native American music gave way to more New Age sounds, and I scolded myself for letting my relaxation break long enough to allow my brain to begin its usual barrage of ridiculous and silent comments. As the sound of distant harps and flutes washed over me, I could hear one of my synapses whisper, "And now for Deep Thoughts by Jack Handey." I ignored this rudeness and pretended I was an adult with one single, sane personality for the lovely Melissa's benefit. She applied a mild skin peel and yet more oils, massaging me without a break. After I was good and greasy, she applied a mud mask with a wide paintbrush. I felt like a glorious work of art. Every part of my body, whether I liked it or not, felt cared for and honored. No room for modesty here. If the masseur had forgotten to caress anything, Melissa had it covered. Even my earlobes were tended to. I heard the door to some sort of warming appliance open, and hot, scented towels were applied to acres of my exposed skin, after which heated obsidian rocks were gently but firmly dragged over my slick face in a mysterious ritual.

After two and one-half nonstop hours of having people tend to me, I was ready to collapse. It was exhausting in a way, yet my body felt wonderful. My face, freed of those extra pesky few outer layers of skin, glowed as if I had been slapped. Every muscle sighed with relief, and my hands, which formerly ached from hours of work, were loose again.

Would I go to a spa again? Most definitely.

Is it still slightly outside of my comfort zone? Absolutely.

However, there's just no denying it was the most fun I ever had in public without my underwear.

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Saturday, April 21, 2007

Melancholy Milestone

I'm feeling melancholy today. I managed to tint my hair Havana Brown today in order to look a little less geriatric before next weekend's 5K walk/run but have not moved far from the security of the couch. After a few hours of typing bone scans in my bathrobe this morning, any motivation I had once is long gone. When I went to check on Erik, who didn't seem to be settling down for his nap late into the morning hours, I found a complete disaster zone. Erik was standing tall in his crib, proudly looking down at an initially unidentifiable pile of fluffy debris. On closer examination, I recognized it as handfuls of material torn from the innards of his crib mattress, liberated by thick, brutal toddler hands (poor muscle tone, my foot). I called Brian in to survey the damage and make a final declaration regarding the appropriate disaster measures. He agreed we had a four-alarm state of emergency. We nodded at each other and looked down at the crib, which was being held together in one place by a golf tee strategically crammed tightly in a hole where some sort of metal fastener used to be at one time. We decided it was time to say goodbye to this particular piece of furniture.

As the walls of the crib were dismantled and taken away to the attic, I lit the Yankee candle nearby that my sister-in-law gave me long ago as part of a baby shower gift. Over the last two and one-half years, I have very rarely lit this particular candle in order to make it last. The fresh scent of baby powder began to waft up from the pool of wax forming around the wick like a hot moat. I breathed it deep into my lungs and squeezed my eyes shut. There is not much of this candle left, and I hate to burn it, as Yankee no longer manufactures this wonderful scent. However, a baby powder-scented candle suddenly seems ridiculous in this lanky, ruddy-cheeked boy's room.

I will burn it tonight until it's gone.

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Friday, April 20, 2007

Writing Contest

I entered three of my previous posts in the This Blog "Blows My Dress Up" contest for humorous essays. It sounds like fun, and I encourage you writers of humor out there to enter! Laughter is the best medicine.

UPDATE: You can view my entries and those of others here.

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Diary of a Madwoman

Random Thought of the Day: Is it just me, or does it seem like the string of random letters required for word verification to comment in Blogger gets longer every day? It feels like some sort of twisted sobriety/typing test.

I can't believe I'm up to over 200 posts now.

I have been conscious since about 2:30 a.m. and upright since about 4 a.m. I'm not complaining (much), however, because I slept without the use of Unisom now for many nights in a row. My work partner leaves town for a couple of days today, and I suspect that has a lot to do with my insomnia. I tried to cuddle with Gracie-Cat, but she insisted on putting her narrow buttocks in my face, which did not render me as relaxed as I had originally planned.

I don't promise much of importance to report today but wanted to let everybody know how much I appreciate your recent comments, phone calls, thoughts, and prayers. I received e-mails that have made me laugh until I hurt and touched my heart at the same time. You seem to know exactly how to make me smile. In addition, I always appreciate your comments here. I even received an e-mail from another WS mother in the next state who is even more geographically isolated than we are.

I hope you understand that this is the place I sometimes dump my deepest, darkest thoughts and that I do not ruminate 24-7 on Williams syndrome, although it is perpetually on my mind at some level. I experienced a real emotional crash lately, and I am doing the best I can to pull out of it. Thanks, Kim, for your last post. There are times I wonder how brilliant it is to be spilling my guts anywhere anymore and making myself so incredibly vulnerable, but because I have received such encouraging feedback, I continue to do so. Looking back at what I have written has been an incredible experience for me. I can see that I am doing better than I ever thought I would. So is Erik!

Erik is into everything these days. Being told "no" seems to wound him almost physically, yet he pushes his boundaries daily by getting into things he knows are off-limits and tortures himself with my reactions anyway. He is still in his crib (a.k.a. pediatric mosh pit), which is now falling apart from his nightly thrashing about. He refuses to eat the majority of my cooking and seems to live on peanut butter and jelly sandwiches, cottage cheese, fruit, crackers, and cheese. I can get him to eat peas occasionally, but he generally hates vegetables. He has eaten two containers of strawberries in about four days, and I bought a BUCKET full of an obscene amount of cottage cheese at the store because he plows through it in no time. He would live on just ice cream if I let him. He is now saying three words together on occasion, such as, "Here comes car," although this is still infrequent. He prefers to use two-word combinations most of the time. He pushes his dump truck down the driveway at light speed, and I am thankful we do not live closer to the road. He is still wearing orthotics, although I no longer require him to wear them for every waking hour. There are still days when he seems to understand nothing I say for hours at a time. Those days are difficult. He is physically active now, but the lights don't always seem to be on. Instead, he constantly echoes the last word that comes out of my mouth. However, the majority of the time he seems bright and alert. I think he understands more than he lets on and is sometimes simply too busy to provide me the constant reassurance I require from him at times.

I still feel painfully excluded when I hear other mothers talking about their children. Even if I successfully contribute to the conversation, I feel like I'm telling the lie of all lies and that I don't really count somehow as a normal mother. This is a very simplistic explanation of a very complex rush of emotions, of course. Yes, I am fully aware of how I should feel. However, knowing how one should feel doesn't automatically produce that feeling. I feel what I feel. As time goes on, there is the promise of more similarities between Erik and other children, so I hope this passes eventually. I am not going to hold my breath, though. I suspect I will always feel a little different and awkward. After all, awkward is one feeling I am quite familiar with, even before I had a child. It's hard when people are unaware of my son's syndrome because that future moment in time in which they find out hangs overhead like a heavy cloud, waiting to release gallons of raindrops on everyone in earshot. I detest the look I see in their eyes at that very moment, although I have yet to hear an unkind word. I end up feeling like a genuine killjoy/party pooper, and if I try to turn things around and be less emotional, I sound cold and un-Nancylike. As I have said before, I'm not comfortable telling others yet because I don't have a good script. I am confident that will come with time. For now, I remain uncomfortable either way but mostly when I "don't know if they know" or "know they don't know." Awkward. If things fail to change, perhaps I will just learn to care less. Just a thought. That has happened already to some degree.

So, life grinds on. I am looking forward to seeing my nephews in a week and watching Erik's face when they come through the door. He was quite happy to see them last October. There is much to look forward to in the next week, and I am savoring that feeling!

P.S. I'm all for starting a WS cult/commune.

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Thursday, April 19, 2007

Lightbulb Moments

Things I have realized in the last three days:

(1) Parent group made me angry because I felt like the moderator's comment insinuated I was NOT fighting for my child. I was venting and needed no advice, and she should have simply listened and kept her trap shut. This was the last safe place in a professional setting I felt comfortable expressing myself. I'm done there.

(2) Deer are really mangy-looking up close. They are best viewed from afar.

(3) I crave bean burritos because they are comfort food during stressful times. I used to get them on the way home from working at the drugstore when I was 21 years old and life was a lot less complicated (mystery solved).

(4) When I do not eat for 16 hours and have blood drawn, I quickly lose consciousness, thereby making a complete ass out of myself.

(5) There are a few professionals in this area who care about Erik and are excellent providers, even though he is likely their only WS patient at the moment.

(6) I'm still very freaked out about meeting an adult with WS, but I probably won't be any less freaked out with time, making it time to do it.

(7) It's time to do something brainless and fun again.

(8) I want a little travel trailer.

Tuesday, April 17, 2007

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.

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Monday, April 16, 2007


Well I never pray
But tonight I'm on my knees, yeah
I need to hear some sounds that recognize the pain in me

-- "Bittersweet Symphony" The Verve

I wish I was having a better day, but I'm not. I am unable to offer any apologies in this regard, as it seems beyond my control. It is reassuring that I have fewer unbearable days as time goes on, but they sneak up on me from behind like dark waves. These days remain unbearable, although there are very few tears on my face anymore.

Today I found myself obsessing over my son's skin. I obsessed about how it is missing an essential component and how he will likely look old before his time. I obsessed on his arteries threatening to narrow and harden without warning because of this same missing building block most human beings have and take for granted. I can only protect him from the outside and hope for the best on the inside of his little body. I made a mental note to call his cardiologist about his upcoming echocardiogram. Perhaps that will chase the nightmares away again. The darkness of the unknown is killing me once again. Is it just me, or is there a hell of a lot of the unknown when it comes to this syndrome? I don't even know how long my child will live. It seems I have read everything there is available and now I wait for another scientific discovery or a breakthrough in therapeutic treatment. I simply wait.

I actually sat down to watch the 60 Minutes video all over again and scrutinized how the skin looked on Williams adults. Overall, it was reassuring, but I did find it difficult to tell how old they are with the combination of pixie-like faces and geriatric-appearing skin that seems stretched tight over bone in some cases.

Have you ever had a nightmare that you looked in the mirror and all of your teeth began falling out? If you haven't, it's a common nightmare many people share. My nightmares are instead of sagging skin, twisting DNA, and prematurely gray hair on and within my son, who seems like a little old man already to me sometimes. He shuffles along and stumbles when anxious or distracted, bending halfway over at the waist to get a better look at things at times. He watches typical children play in groups, standing close to other adults on the outside of the circle instead of joining in, shaking at unexpected noises but now grown up enough to remain silent in most cases. He cries fewer tears now, too.

My heartache, although I have become numb to it most days, will be present at some level daily for the rest of my lifetime.

I hate that.

I know I'm not alone, but I know there are many readers out there who are in the same boat as I am -- no other WS children in their small towns. No other local mothers of young children to meet and talk to over coffee. Ah, yes -- the rare, elusive WS child. They might as well be freaking unicorns here. As far as I know, we're IT in terms of a young child with WS. You see, I would know by now.

It's morbid, but I wait for my phone to ring at some fateful moment in time as the next WS baby is born and diagnosed here. I am planning on crying my heart out for that mother and hating myself the next moment for being deliriously happy to hear her voice. I have heard her voice in my dreams many times already. I will be tempted to say, "I have been expecting you."

It seems like decades since Sophie was here to visit Erik. It's now a matter of days before we are reunited again with families with similar stories and I will have one special day when I no longer feel like I have to blaze my own damned trail. I would like to walk side by side with someone for just one day down this rugged path. Someone who knows exactly how I feel. Someone I can touch and see for myself. Someone with a child whose face looks an awful lot like my own child's. Just for one day.

That day is coming in two weeks.

Sunday, April 15, 2007

Of Love & Lanolin

For the most part, yesterday was a rather lazy day. The weather kept us inside for most of the daylight hours, alternating between sloppy spring rain, kernels of hail, and tiny, mushy snowflakes. Shaena invited us to accompany her family to a farm on the outskirts of town to see some newborn lambs drink their dinner, and we decided to go on this outing. We met them and followed them down a country road to an ancient but beautifully-kept two-story farmhouse with caramel-colored wood siding, where Ruth, an operating room nurse, and her husband live. A pleasant, silver-haired woman with a disarming smile wearing red clogs appeared at the door and told Shaena she would mix up some milk and be right with us. A glossy black and white dog named Jiff bounded spasmodically towards us, much to the delight of Erik, who is a true dog lover. Erik's face was soon coated with slippery dog slobber. We approached the fence behind which a herd of sheep on an emerald expanse of brand new, rain-quenched grass stared at us. There was a warning sign on the fence announcing the presence of metal traps on the property. We were later told there was recently a bloodthirsty cougar on the loose here. When Ruth came back out of the house, she carried a two-liter plastic bottle full of milky lamb food with a large, black nipple on it. Upon our entry into the field, Jiff instantly began playfully harassing a beige-colored sheep, and Ruth explained the two of them had some sort of mysterious, ongoing feud. She led the six of us into a ancient, drafty barn. In the darkness we could hear animals snorting and baaing. We walked down a narrow aisle lined on one side with rough, low stalls, and as my eyes came into focus, I saw the outline of a fat ewe with a round, milk-heavy udder and a young lamb. We continued to the end of the dark aisle to where wintry light fell into the barn and hungry baby lambs stood waiting in a pen. The seven of us crammed ourselves into the pen with cameras in hand like ridiculous city slickers and watched Sammy and Erik react to the sheep. Sammy is now over a year old and was calmly fascinated by the sheep but stood close to either Andy or Shaena, content to just watch the animals drink from the bottle. Erik did the same, tentatively reaching his thick fingers out to stroke one lamb from time to time. When Ruth offered one lamb the bottle, the vigorous suction caused the rubber nipple to pop clean off the end of the bottle, sending liquid food out in a thick glurg all over my husband's denim-covered thigh. My husband, who grew up with goats and is quite comfortable in a farm setting, gracefully accepted Ruth's apology and joined us in our giggles. Ruth's husband, an instantly lovable and handsome curmudgeon in denim overalls, joined us in the barn, and we went back into the field to watch him feed the sheep there from a long trough and then down to where two midnight black steers waited for their dinner of alfalfa and grain. The wind had picked up by now, and the mountains were being overtaken by a grainy, white cloud that looked a lot like snow. The faint scent of snow infused the chilled air filling our lungs. Snot trailed rudely down Erik's face, and his hands became dusky purple in color. I blew on them to warm them, but he insisted on trying to cram his sheep-coated fingers into my mouth, so I ceased. I pulled his little jacket sleeves over his chubby hands. Shaena retrieved a blanket to wrap Sammy in. When we could no longer feel our faces, we decided to load back into our cars. We thanked Ruth and her husband, and we caravaned back up the hill to Shaena and Andy's house nestled in the sage and juniper. Shaena and I broke into a bucket of potent blue Hawaii cocktails she had in the freezer, and I watched Shaena make spaghetti dinner. Erik ate like a little lumberjack and after dinner played on the floor with Sammy. Shaena and I got a horrible case of the giggles because Sammy is quite obviously smitten with Erik, which he finds a little confusing and overwhelming at times. Even more humorous to me is the fact that my son, who has a syndrome that makes him hypersocial the majority of time, began politely but firmly scooting away on his bottom from Sammy to no avail. She followed him everywhere, providing him an endless supply of hugs and kisses all evening. At one point, she went to hug him, and her enthusiasm caused Erik to go over backwards, landing with Sammy on top of him, still hugging him firmly. It looked an awful lot like the love scene from the movie From Here to Eternity in miniature form. I grabbed my camera. Despite Erik's plight underneath a layer of adorable toddler-friend, he managed a feeble "CHEESE" when he saw my camera. It was the funniest thing I had seen all day. Shaena and I almost died laughing.

We came home on the late side for Erik, but he didn't complain. I could tell he had a great time. Out of all of the animals we saw yesterday, his favorite was the farm dog, Jiff. On the way home, I heard him say, "Bye-bye, Jiff." He was still saying this when he got up this morning.

Thank you, Andy, Shaena, and Sammy, for the fabulous evening. We love you and will do it again soon!

Next stop -- baby goats!

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Saturday, April 14, 2007

Weekend Update

Random Thought of the Day: What's up with bubblegum-flavored infant/toddler toothpaste?

I don't remember the last part of the week. It's seriously a blur. I'm battling headaches now in the form of spiking pain through my left eye that doesn't respond to anything I do or take. It lasts for days at a time. I am now recovering from one that lasted three days. I visited the doctor about this before and underwent an MRI that showed no pulsating brain tumor, alien pupa, or my own unborn twin trapped in my skull. I suppose that's good news. I had even more horrible headaches as a child, but these are much different. I'm thinking these are hormonal, as I began having these with each of my pregnancies and have had them since. I'm pretty jacked up in the hormone department these days. As I get older, it only gets worse.

In other news, my business partner and her husband have been going through the adoption process for months now. They are in their 40s and never had children but feel they are in a good place in life to take care of older children who may have some emotional/physical problems. She called me yesterday to tell me that they are finally parents to children they have yet to meet. They will be providing a safe, loving home to an 11-year-old boy and an 8-year-old girl who sound wonderful. This friend of mine and her husband also run a Boer (goat) business here in town. On top of everything, they became parents to five new goats in two days. These are their first since they started their business. Needless to say, she is a bit overwhelmed. There is a baby goat in a plastic tote in their living room who needs a bottle every two hours. I agreed to help her as much as possible with our work load as they care for goat kids and begin traveling over the mountain to get to know the children and transition into family life. We provide transcription services for about six providers in three different offices, and we keep very busy. We service one office almost purely electronically but still need to drive out to the ophthalmologists and the retinal specialist to pick up tapes on a daily basis, print out what we have done at home, and deliver it the next day. I am so happy for her, and I'm gearing up to help her out in any way I can. We have known each other for years now, and although we giggle now and then, we rarely do anything as friends and are busy on a professional level. Yesterday I stopped to tell her I loved her and was proud of her. It felt extremely weird, but I most definitely meant every dang word. She told me the feeling was mutual. We let moments like those pass us by sometimes because we don't want to risk being vulnerable and later may regret the opportunity passed us by. Life is too short. Oh, Erik, you have helped me become so brave!

Erik, of course, is doing well. We had a successful hippotherapy session yesterday. While he went into the therapy room after riding his horse, Foxy, I reclined the seat in the Jeep and baked in the sun while I listened to my iPod. We are very excited about participating in Sophie's Run in a couple of weeks, and there will be a woman with WS in her 40s participating with us. I am nervous about this but know that meeting this woman will likely be a positive experience. I have seen older people with WS on video but was never brave enough to meet one. Like I said before, the reason I am afraid is because it's a little like looking into the future. I think I'm ready at this point, and what better place to do it--surrounded by people I love.

Wednesday, April 11, 2007

Back to Reality

I'm so thankful spring break is over. Erik had two weeks off school and his early intervention therapy home visits. I truly believe he missed it all. EI only comes to our house twice a month now. As he has grown, his needs have changed. Since I added hippotherapy and pool therapy, I cut his home visits in half. I have yet to contact the hospital about the music therapy there.

Brian took the day off yesterday and accompanied us to school. Erik seemed slightly thrown off by our return to the building and his classroom but seemed happy to be back. He did his usual peering into each office window as we made our way down the sidewalk along the front of the building, making sure he didn't forget to greet anyone. The shiny metal strip across the floor in the doorway that we previously conquered once again caused him to stop in his tracks and tentatively stretch one of his skinny, stiff legs to the other side to make sure there was not an unseen edge or dropoff there. Other than that, it was business as usual. He unzipped his coat using his new football zipper pull, to the amazement of the staff, and when I took his coat off halfway, he finished pulling it off. I felt a little guilty making him perform his new skills like a trained monkey, but I love to show him off!

Brian and I dropped Erik off and walked down the hallway to the library for parent group. Since we were the first to arrive, I chose my usual comfy rocker/ottoman combination. Brian sat beside me in a folding wooden chair, and we enjoyed our coffee together. Soon the room was packed with mothers and three infants and became the delightful, sweltering hotbox I have grown accustomed to. There was no set topic. We discussed Easter and how there was no longer an egg hunt for disabled children in town. We discussed the hotly debated autism-vaccination connection. We discussed the latest and greatest treatments for eczema, none of which seem to completely work for us. We discussed how parents with special needs children are sometimes cruelly mistreated and judged when they are in public with their families (appalling). Thankfully, Brian and I have not had anyone approach us with such sage advice or comments as, "You should spank your child. That would solve all of his problems" or the ever popular, "Why can't you control your child?" Even worse is the fact that some people feel like they have every right to blatantly stare without saying anything at all. It was unanimous that we would much rather have a stranger ask what is wrong with our child rather than say nothing at all and simply stare. Erik seems perfectly normal to me when he is sitting in a shopping cart, but Brian pointed out there are now times when Erik talks loudly in stores and makes it obvious something is different. That in itself doesn't seem to bother either of us, but I feel like I should at least try to be prepared for the first time someone says something rude to me so I don't "accidentally" (a) punch/mace/kick/slap anyone or, even worse, (b) burst into tears at the supermarket. I don't want to be blindsided, and those types of things usually happen when you are most vulnerable. However, people have been more than kind to us so far and seem to naturally fall in love with him.

Someone made a huge generalization about children with Down syndrome being "so lovable" and "happy all of the time," and I winced as I looked at the mother dealing with Down syndrome. These comments sounded slightly condescending to me, as if she were talking about fluffy puppies, not children. The other mother politely explained that her child has violent outbursts and bashes his head into the wall at times. I feel her pain, as people often view those with Williams syndrome as being happy 24-7 with no worries in the world. In reality, our children become just as frustrated, if not more, with things as any other child would. They are perfectly aware of the fact they are wrong when they are asked to solve simple puzzles or problems and are unable to make their brain see the answer. How frustrating would that be? Adolescence can be a desperately lonely time for someone with Williams or Down syndromes, and many have no close friends. Even in special ed parent group, there are misconceptions about each condition and syndrome from one parent to the next. I don't pretend to know much about Down syndrome, but I could definitely read this mother's body language and see she felt it was important she communicate that life at home was a genuine struggle at times. These kids are human beings like anyone else with complex emotions.

The typical babies in the room at parent group nursed, played, cried, and babbled during our session. They are all adorable. Brian and I marveled at how one tried to put one foot in front of the other when he was held upright at 6 months of age (something we did not see in our own child until much later). I chose not to hold a baby this time. The last time I did, I felt surprisingly emotionless about the brief experience, and my shirt smelled vaguely like fried food all day. Gross.

When it was time to leave, Brian and I went up to the classroom and found Erik in front of a little red plate that obviously once held chips and salsa. Bev reported that once he got into these particular chips, he ate with gusto. The boy is officially a salsa lover. It's perfectly natural, as I ate probably 45 gallons of it when I was pregnant with him (hot, of course).

So life goes on now. We have a financial planning meeting this evening, a home visit tomorrow, and hippotherapy on Friday. It's nice to have things back to normal again, and I am looking forward to a weekend at home.

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Tuesday, April 10, 2007

And Now for Something Completely Different...

This goes out to Shaena and Leanne, whom I received this from.

Place an X by all the things you've done, or remove the X from the ones you have not, and send it to your friends. This is for your entire life!

(X) Smoked a cigarette (Note to self: NEVER buy cigarettes in France again)

(X) Drank so much you threw up (Peach California Cooler; 1989)

( ) Been arrested

(X) Gone on a blind date (still on it 6 years later)

(X) Skipped school (forced to leave school by favorite teacher on Senior Skip Day)

( ) Watched someone die

( ) Been to Canada (missed the ferry)

( ) Been to Florida

(X) Been to Mexico (Mas tequila!)

(X) Been on a plane

(X) Been lost

(X) Been on the opposite side of the country

(X) Been to Washington DC

(X) Swam in the ocean

(X) Felt like dying

(X) Cried yourself to sleep

(X) Played cops and robbers

(X) Recently colored with crayons

(X) Sang karaoke (not pretty)

(X) Paid for a meal with only coins

(X) Done something you told yourself you wouldn't?

(X) Made prank phone calls (before caller ID)

(X) Laughed until some kind of beverage came out your nose

(X) Caught a snowflake on your tongue

(X) Danced in the rain

( ) Written a letter to Santa (just to Tooth Fairy that I can remember)

( ) Been kissed under the mistletoe

( ) Watch the sun rise with someone you care about

(X) Blown bubbles

(X) Made a bonfire on the beach

(X) Crashed a party

(X) Gone roller skating (not pretty)

(X) Gone ice skating (again, not pretty)

Any nicknames? Nancy the Nun (thankfully retired), Gnuknee (retired), Nanny (popular with kids), Nan (only two people call me this daily anymore), Nance (completely interchangable with Nancy), Pebbles (retired), Barbie (in my dreams...long retired), Kitten, Mai Tai, Sassafras, and Poopy.

2. Mother's name? Same as my middle name.

3. Favorite drink? Perfect margarita (nice and sour) with salt.

4. Tattoos? No. A growing collection of birthmarks, scars, and beauty marks, though.

5. Body piercing? Three holes in one ear and one hole in the other.

6. How much do you love your job, on a scale from 1 to 10? 7 (varies)

7. Birthplace: About a mile and a half down the road on the hill where the Phoenix Inn is now (hospital is long gone). I didn't get far.

8. Favorite vacation spot? Oregon Coast or Maui. I like staying close to home now.

9. Ever been to Europe? Yes, twice.

10. Ever eaten cookies for dinner? Heck, yes.

11. Ever been on TV? Yes.

12. Ever steal any traffic signs? In high school, I did steal signs. However, I returned them to the public works department one dark night around the time I graduated.

13. Ever been in a car accident? Too many. Luckily, they were minor.

14. Got a 2 door or 4? 4 on my Jeep.

15. Salad dressing? Ranch.

16. Favorite pie? Mom's rhubarb custard pie.

17. Favorite #? 10

18. Favorite movie(s)? Blood Simple, but I love a lot of them.

19. Favorite Holiday? I love them all. I used to enjoy Valentine's Day because the girls all wore pink and red in the office, and it felt quite festive. Now that I work at home and am a mother, I enjoy them all to a degree I never imagined I would. I even decorate now.

20. Favorite dessert? Root beer floats.

21. Favorite food? I love almost all of them, but I do love SPICY food, like Thai or Mexican.

22. Favorite day of week? Friday.

23. Favorite brand of soap? I love the Bath & Body Works shower gels in juniper or blackberry.

24. Favorite toothpaste? I don't feel very strongly about any of them.

25. Favorite smell? Vanilla, citrus, or freshly cut grass.

26. What do you do to relax? Sleep, read, or watch television. I enjoy anything that gets my mind off reality for a while. These little quizzes are fun, too!

27. Do you have a message for your friends (and family)? I love you!

28. Where do you see yourself in ten years? Eating dinner with the President and First Lady at Erik's side or watching Erik shake hands with celebrities at a charity event.

29. Farthest away you are sending this? A shout out (HOLLA!) to Hungary, England, and Australia! And anyone else I may have forgotten.

30. Dream car? One of those zippy new Mercedes convertibles in electric blue. My dream car changes every year. I will forever miss my macho-sounding Toyota Supra that was stolen, stripped, and shot full of holes. It was a total dude magnet, BUT, then again, it was not so good for hauling around a little dude in a car seat.

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Monday, April 09, 2007

Spring Photos


There's nothing like a good cry in the middle of the night.

Come on, sun.



Friday, April 06, 2007


Words fail me today. All I can say is that I am so incredibly proud of my son.

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Thursday, April 05, 2007


I'm sorry to say that the majority of my photos of the party did not turn out very well. Disposable cameras are not what they used to be. The top photo is Rob, my neighbor, and Calvin, the gentleman who was kind enough to let us stay in his home (very brave!). The look on Calvin's face says it all. The second photo, of course, is of Lisa and yours truly.

Erik and I went to pool therapy this morning. After I got Erik settled with his therapist in the 94-degree water, I ran to the grocery store to purchase a few things I need to bake goodies for Easter at my parents' house and then enjoyed some quiet time in the waiting room. Erik's therapist is working with a fresh-faced, wide-eyed intern for the next six weeks. When the four of us walked down the hallway to the pool, Erik said, "Tubby!" The intern laughed and said, "Oh, HE'S the one who says tubby!" Erik has a real reputation there. When we walk in to this facility, the reaction we get reminds me a lot of the one Norm got on Cheers when he came through the door.

Erik shared the pool with another patient, whom I ran into briefly as I went to scoop Erik out of the water at the end of the session. When I asked how Erik did, this stranger immediately commented, "Oh, he's a star. We love him." I don't see many children at this facility. There are many middle-aged people with bad backs in excruciating pain and a foul humor, but Erik has yet to fail to fetch a smile from any of them.

I am becoming extremely efficient at packing for therapy away from home. I keep Erik's therapy bag (my old high school duffel bag) stocked with a tiny bottle of shampoo, froggie wash mitt with plastic bag to carry it in, fresh towels, swim diapers, books for the waiting room, regular diapers, snack foods, and warm clothing. Since the tiny shower area is not equipped for children, I have to make do and usually end up with a backache myself from hauling Erik around. I flip the shower seat down, plop Erik on his bottom, shower and shampoo him (if I remember, I start the shower before I get him out of the pool), get his diaper on without any place to lie him down, and struggle to get him dressed. The first few times I showered him, I came out in soaking wet clothing, but today I was completely dry. I think I am getting the hang of this.

Funny Erik Story: For some reason, Brian taught Erik how to say "Hello, Clarice" a la Dr. Hannibal Lecter from Silence of the Lambs. It all started when Erik started talking into the little hard hat that came with the big excavator Lisa R. gave him for his birthday. I suppose he did look and sound a little like Anthony Hopkins wearing that creepy prison mask in that movie. Now he just puts the yellow helmet on and says, "Hello, Clarissssse" over and over.

Poor Erik. He was destined to be weird from the very beginning in this family!

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Wednesday, April 04, 2007


This entry is very difficult for me to write, but I have wanted to express my feelings about this topic for some time now. It is an honest evaluation of how I feel in a particular situation. I have never seen or heard anyone admit this before. I can see that not everybody "gets me," and I am okay with that. My goal in my writing has been to be as brutally honest as possible, and I do not plan on being anything but honest here, so here goes.

Confession: I am uncomfortable showing photos of Erik to people I do not know well.

There. I said it.

Possible reasons:

(1) I feel like I am lying when I present photos of Erik to people who assume he is "typical" and I allow them continue to think that.

(2) Part of me feels I failed as a woman because I produced a child who is not genetically perfect and I do not want others to know.

(3) Someone might ask questions I am not comfortable answering and make it obvious something is wrong with Erik.

(4) They might actually see something is wrong with him (there is a reason WS has been called "elfin facies syndrome").

(5) I want to protect my son from the world.

To my complete horror, I dared myself to ask someone I just met this weekend if they wanted to see photos of my child. I could not believe these words were coming out of my mouth, but they were. I believe this proves I want so much to brag about my son just like any other mother would. Unfortunately, it is not quite that simple -- for me, at least. It is impossible to brag about most things typical kids do. Besides, I am honestly the most proud of him doing things like walking over uneven surfaces, learning to drink from a straw, walking up stairs, and things of that nature. That flavor of bragging may seem a little strange to some people who do not know the entire story. On this occasion, I kept my mouth shut and just showed the photos, which seemed to be well received. It did not matter, however. I remained horribly uncomfortable and made a note to myself it is not quite time for this yet. In short, I felt like a giant FAKER telling a huge LIE. The smile on my face was plastic.

I also confess that when I am put on the spot and WS finally reveals itself, I feel a twinge of shame and embarrassment when our "secret" is known. I am not entirely sure why. I am so incredibly proud of Erik, and I think all of these issues are purely mine with nothing to do with Erik whatsoever. I still feel a great deal of guilt when I feel this way. What kind of mother would be ashamed of photos of their own child? I remember the day the diagnosis was handed to us. It actually felt dirty to me, like something awful and evil had overtaken our precious baby, and I wanted it gone. I could see it then, forever present in his face, and it ripped my heart out. I honestly just wanted to take a hot shower to cleanse the feeling away. Crazy? Probably.

I am light years ahead of where I was a year ago, but I suppose it is unreasonable to expect myself to be completely ready for every situation yet. There is still hurt underneath the surface, and although I am fine sharing Erik with people who know and love us, I am still very uncomfortable with the rest of the world knowing our story just yet. I guess that is part of why I blog. I can brag here and share my photos in relative comfort. That is important to me. Because I AM very proud of my son. It is interesting that I have no problem taking Erik out and about and letting his charm reel people into loving him instantly, letting Erik speak for himself. When Erik is with me, I can do anything. When he is not, I choke.

If only I did not feel like I had failed him and my family somehow.

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Monday, April 02, 2007

Autism Awareness Month

The whole "autism spectrum" thing has proved to be confusing to me. According to the Autism Society of Canada, the word "autism" refers to autistic disorder AND all autism spectrum disorders (ASDs). By this definition, Erik would be classified as autistic. Unfortunately, it's not that simple. I have been told by several people that WS falls into the autism spectrum, and I can clearly see Erik has autistic behaviors/tendencies, some of which are virtually debilitating at times. It is also clear the word "autism" covers a wide variety of diagnoses, from Rett's syndrome to Asperger's syndrome. However, WS does not fit into the five pervasive developmental disorders (PDDs) listed by the Autism Society of Canada, including childhood disintegrative disorder, Rett's syndrome, autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger's syndrome, although we were initially given a diagnosis of PDD-NOS (the FISH test eliminated us from this category). The definition below seems to kick us out of the ASD category completely, as ASDs are classified as PDDs, which, as I stated above, this particular resource does not seem to consider Williams syndrome to be. I guess it depends on whom you ask. I can see there are some autism-flavored quirks in my son and am comfortable stating Williams syndrome is an ASD. It is pretty obvious to me.

To make a long story short (too late), I feel like we don't truly fit anywhere with this damned diagnosis. Or, even worse, sometimes I feel like we fit to a small degree everywhere. Will Erik be mentally retarded? According to what I read, it's almost guaranteed. The severity of his disability remains to be seen, which is part of the special torture of being a WS parent. Time will tell. But wait -- not only do we have a child who isn't "typical," his mental retardation will prove to be out of the ordinary as well. He will likely have grossly asymmetric cognitive skills. Some people may never guess his brain doesn't work like it should, as he might seem even more intelligent than a typical child when he speaks using an incredible vocabulary and demonstrates an unusual interest in people. On the other hand, one might at first glance consider him severely retarded, as he may have difficulty tying his shoe or doing something we all take for granted. He will likely be neither of these things. In addition, Erik will likely require and desire more than special ed classes but more assistance than would be normally provided in the mainstream classroom. At this early point, I'm not sure where we are going to fit, so I am forced to conclude we will need to blaze our own trail. I'm okay with that, but I can see a very long road ahead of us.

Where does that leave us on the autism spectrum? I do believe we belong on the spectrum becauase of certain behavioral characteristics Erik has clearly demonstrated. However, with time these seem to be disappearing. Will these be replaced by other more mature tendencies? It will be interesting to see if he demonstrates any new autistic tendencies with time. Williams is one bizarre syndrome.

Erik's Aunt Dawnita reminded me it is Autism Awareness Month, and I feel it is important to take notice of this mysterious diagnosis and the millions of children on the spectrum. A big thank you to our families for keeping up to date on WS by keeping your eyes and ears open for information on WS and all ASDs. Most importantly, thank you for talking to others about WS and providing education about this diagnosis in our communities.

From Wikipedia: The autistic spectrum (sometimes referred to as the autism spectrum) is a developmental and behavioral syndrome that results from certain combinations of characteristically autistic traits. Although these traits may be normally distributed in the population, some individuals inherit or otherwise manifest more autistic traits. At the severe end of the spectrum is low-functioning autism which has profound impairments in many areas, to Asperger's syndrome, and high-functioning autism, to "normal" behaviour and perhaps hypersocialization on the high end of the spectrum.

In the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) and the International Statistical Classification of Diseases and Related Health Problems (ICD-10), autism spectrum disorders (ASD) are classified as pervasive developmental disorders (PDD), as opposed to specific developmental disorders like dyslexia, dysgraphia, dyscalculia, or dyspraxia.

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Groove is in the Heart

I returned home safe and sound yesterday afternoon from my little weekend trip back in time.

Friday I called my coworker and told her I wanted to give myself the day off so I could leave in the afternoon with Lisa, my neighbor, and her husband Rob for the weekend. After receiving her blessing, I began to search for something to wear to the 1970s theme party. I found a pale pink, silk peasant blouse in my closet. I have never once worn the dang thing because it has some little sequins on it and some flowing sleeves. It just never seemed appropriate. Next, I tried on a pre-Erik black skirt that laced up the back, and it actually fit comfortably! If that's not a good way to begin the weekend, I don't know what is. Lisa then arrived to take me on my very first trip to the little purple house on the main drag that serves as our friendly neighborhood adult bookshop selling costumes and novelties, where a pair of black knee-high go-go boots in my size waited for me. Lisa's feet are smaller (quel surprise), and she was able to buy a rather fetching, faux patent leather pair. This particular store is another entry in itself, but I'll save that for later. I will mention, though, that I found it impossible to ignore the jaunty six-foot high inflatable phallus smiling at me from the corner of the room while I sifted through cheap 1970s-style clothing on a nearby rack. The two very sweet young girls working the counter encouraged me to try on some of their costumes, but being Amazonian in stature, nothing fit very well. After leaving with my new footwear, we stopped at the tavern on the way home for a small plate of nachos and something to wet our whistles while we waited for Rob to get off work. The three of us then left town, stopping briefly at a small costume shop in the next town to pick up Rob's Starsky and Hutch-type attire.

Calvin, Rob's coworker from two decades ago, lives in the city where the party was to be held, and he invited us to stay at his house. Lisa and Rob have known Calvin for years. He is a man in his early 60s who lives alone in a neat two-story house that is a trip back in time in itself. The home is extremely inviting and clean for a bachelor pad, filled with vases of fresh flowers, dated but cared for furniture, and shag carpet. There were two bedrooms and a bathroom upstairs, where we unpacked our belongings. Calvin barbecued juicy chicken breasts and served them with a cool shrimp pasta salad, steamed vegetables, and fresh grapes. We enjoyed dinner and some time on the back patio next to an ancient, slightly leaky hot tub adorned with green patio lights shaped like jumping trout. The smell of plant life and rich dirt, which is less than detectable at home during a high desert winter, filled my nose. The grass was almost fluorescent green, and giant, fluffy primroses lined neatly-tended flowerbeds around us. Lisa and I took it easy after dinner. I enjoyed one Crown Royal and Diet Pepsi before I retired but heard Rob and Calvin visit late into the night. I slept fitfully off and on. When I got out of bed, everyone was up in their pajamas enjoying coffee in the living room watching the morning news. Calvin and Rob looked a little rough around the edges. In fact, Calvin looked a little green around the gills all day long. Rob shook off his hangover long enough to beg me to accompany him to the yard sale being set up a couple houses down. Lisa, Rob, and I wandered down to check it out, and I bought a slightly rusty Tonka articulated front loader for Erik to play with outside (my husband taught me that term; I am really getting to know my heavy equipment these days).

Lisa and I ran errands all afternoon. We hit the Goodwill store with her mother and niece before going out on our own to the department store for white eyeshadow and pantyhose. I bought silk daisies on bobby pins to put in my hair and some pastel beads. We joined Lisa's friend Holly for lunch at a teriyaki joint for Love Love salads, something Lisa said I was required to try -- hot strips of teriyaki chicken on a bed of greens slathered in some warm, sweet peanut dressing. Holly was a bit aloof when I met her. She was dressed in an expensive jogging suit and had unnaturally white teeth, peach-colored, acrylic nails, and gorgeous, dark hair. I hid my hands under the table, feeling instantly frumpy in my sweatshirt and jeans. I silently cursed myself for forgetting to dye the gray roots showing in my own hair before I left. She asked us if we could help decorate the country club for her husband's party. Lisa and I agreed. We picked up giant, sparkly Mylar balloons at the party store and drove through pouring rain to the country club, a gorgeous expanse of emerald green with restaurant and lounge overlooking it all. To my surprise, I was told that Holly had rented the entire club, including the restaurant and lounge, for her husband's 50th birthday party. Holly offered to get us something to drink. I ordered a Lynchburg lemonade and let Holly instruct me on what she wanted me to do. Slowly but surely, she began to warm up to me. I threw myself into tacking old record covers on the walls and decorating the tables with vinyl LPs, tiny, battery-powered lava lamps that changed colors every few seconds, and shiny confetti. Lisa prepared each table with red, yellow, and purple linens. The staff swirled around us, working just as hard and joking with us. Rob and Jeff, Holly's husband/birthday boy, came to snap the dance floor together. The DJ arrived and began setting up lights and his table. We installed battery-powered mirrored balls everywhere, including the ladies' loo. Everything looked quite groovy by the time we were finished. Holly looked relieved, and I flashed the most reassuring smile I could muster as we left the building. She smiled back.

After running back to Calvin's to slip into our costumes and coat ourselves with eyeliner and Aqua Net hairspray (I LOVE that stuff), we returned to the club and began to mingle with the guests. Trays of meatballs, spring rolls, won tons, vegetables, cheese, and crackers were served in the lobby. Many of the older guests, including Calvin, left after an hour or two, when the lights dimmed and the music started pumping loudly from the stereo. Girls dressed in 1970s attire cruised the party room and adjacent bar with silver trays of tiny plastic cups containing shots of Jell-O in every color infused with tasteless alcohol. I declined the first round but accepted one that was given to me the next time they passed by. It was blue and tasted like raspberries. Not bad.

Almost every one of the approximately 200 partygoers was dressed to the hilt for the occasion. There were short, pleated skirts, gold chains, bell bottom pants, and feathered hair. I saw many pairs of boots just like mine. I told one girl she looked like Sharon Stone in the movie Casino when we were introduced, and she giggled and blushed. Holly looked remarkably like Marlo Thomas. I was accepted into this group as if they had known me for years. I mostly very quietly watched the festivities and sipped water, but when a very bored Rob offered me a shot of Jagermeister, I accepted that, too. It was disgustingly tepid but still tasty. After another, it was back to water and a couple dances out on the floor. Finally, Lisa and I decided to call a taxi and head back into town for our beds around 11 o'clock. We shared a cab with a couple of older partygoers that knew Lisa for a very interesting jaunt home. After some confusion over Calvin's address, our cab driver informed us he was deaf and argued with Lisa as the older passenger went on and on in a loud, obnoxious rant. I decided the ride could go either way. At first, I expected the cab driver to drop us off in the country and tell us to find our own way home, but his crotchedy demeanor lifted, and he laughed at the older man's lame jokes. I still couldn't wait to get out of that car. When we snuck back into the unlocked door of Calvin's house and up the stairs, I felt like I was 16 all over again.

Rob ended up staying at his friend Tim's house. I was happy when I woke up feeling fairly refreshed, although I probably got about six hours of sleep between Friday and Saturday night combined. I waited for Lisa to get out of bed while I chatted with Calvin over coffee about his life, which I enjoyed immensely. He told me about his time as an MP in the army and his time working at a sugar beet plant. When Lisa came downstairs, we ate the delicious breakfast Calvin cooked for us and then went to pick up Rob. We pulled up in front of a gigantic mini-mansion on the golf course. Lisa pulled the dinner plate-sized knocker away from the giant door and tapped it several times, giggling. A very sleepy-looking Tish (Sharon Stone from the party) answered the door in a teal-colored jogging suit. She led us through a cavernous foyer with a gigantic round table and monstrous glass centerpiece on it into a massive kitchen with at least 10-foot high ceilings where they weren't vaulted even higher. I tried not to look like a hick from the sticks, but my mouth was slightly agape as I took a seat at the breakfast bar next to a very sick-looking Rob drinking beer and tomato juice. Two pairs of high heels were parked neatly atop the bar amongst a collection of cell phones and 1970s accessories accidentally abandoned by their intoxicated owners. The party had apparently ended at 4 a.m. there. Lisa handed Rob a fresh shirt and Levis, and I looked down to see he was still wearing brown bell bottoms. Tish took us on a tour of their home with their fluffy, perfectly groomed bichon frise quietly following us from room to room. We followed Tish through the main floor and then up and down three separate staircases to peek into a cardio room, a mirrored gym/putting room featuring a floor of AstroTurf with recessed cups to capture rolling golf balls, a temperature-controlled wine cellar with a bistro table and walls of expensive wine, a laundry room as large as my dining room with granite countertops, an entertainment room featuring an air hockey table, big screen television, and pillowy sectional, and many other sitting rooms and bedrooms. A painting of the bichon frise at our heels hung in one sitting room, white head slightly tilted quizzically to the side. I lost count at five bathrooms and ten televisions. The back yard had miniature hedges clipped into neat shapes snaking through the grass and an exercise pool. What was most incredible of all, however, was that the people living there were some of the nicest people I ever had the pleasure of meeting. Tim, well over six feet tall and painfully handsome with a perfect blond mustache and a head of thick, blond hair, reluctantly left with his hangover to meet his friends for an early tee time. He hugged me goodbye and as he walked down the massive hallway, we all laughed because his perfectly pressed, chino coated backside sported a mysterious wet spot. Tish shrugged and said, "Oh well. It'll dry."

We said our goodbyes and loaded into the car, stopping to retrieve our luggage at Calvin's house. I guessed he enjoyed our company immensely but would be happy to have his old peace and quiet back. As we pulled away, he stooped to pull some weeds in his shady flower garden. Rob burped and I rolled down the window as the wave of beer-scented air rolled forward. Lisa and I laughed. He groaned and laid down in the back seat while we chatted on the way home, stopping once to use the facilities and once to buy ice cream sandwiches and Kettle Chips. Rob didn't move.

It's good to be home, although this place looks much smaller to me now. The cat screamed the whole time I was gone, and Erik has gotten taller in two days. His vocabulary seems to have doubled. Brian thanked him for doing something last night and we heard him say, "Welcome," as he wandered away.

I wouldn't give up this life for all of the money in the world.

Photos are forthcoming. I was without my digital camera, so I need to run to Costco with the disposable I used.

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