Erik Quinn: The Heart of a Family: December 2006

Sunday, December 31, 2006

Good Company

Yesterday Sophie and her mother Heather came to visit. Some of their family and friends are staying in a vacation rental not far from here for the holiday weekend, enjoying the skiing and hiking this area has to offer. Sophie is the very first person we met with Williams syndrome back in April just after we received our diagnosis. There is a 5K race put on by Heather's best friend every year in Corvallis, the proceeds of which go towards a fund to ensure she has the finances she may need for her care as an adult. Not only does this event provide security for Sophie and her family, it also promotes awareness of WS and other syndromes in the community. Like me, Heather reported there is only one other adult in their community with WS, and she has yet to meet her. The nearest WS picnics and gatherings all seem to be in the Seattle area in the summer. Therefore, it is indeed a very special day when we get to spend time with another family who knows exactly what we are going through and has a child that is similar to ours. We have only met one other child with WS, and she was at the race with Sophie this year. It has been almost eight months since we have seen a child like our son.

Sophie is between 4 and 5 years of age now and looks so tall to me with long, coltish legs. They arrived as Brian was outside taking down the last of our Christmas lights. As they all greeted each other, I peeked through the lace curtains to watch Sophie walk. To my great surprise, she did extremely well with the steps up to the porch, although it was obvious she was being much more careful than a typical child would. When I asked Heather about how Sophie does with stairs in general, she said that they tried everything to make her look down in the past, including tape and lights on the edge of stairs. To this day, she still does not look down at her feet when she is on stairs. Because looking down is likely extremely scary and confusing, she has learned to feel the contour of each step with her foot before stepping down. Heather was equally impressed with how much Erik was talking. Sophie was dressed in spotted PJs after their group played in the snow earlier in the day. Although this was her first visit, she entered our home as if she had been here thousands of times. She thoroughly checked out each room and then quietly made herself at home with Erik's toys. Erik was in heaven. Not only was another child in his room, but she was quiet, polite, and independent. I think he even wanted a little more of her attention. He kept saying "SOAF-EE" over and over while making sure he gave Heather the appropriate amount of attention and affection and smiling to himself. Heather and I spent over an hour talking to each other and letting the kids play.

Sophie doesn't seem to share a striking amount of physical traits with Erik, but Heather and I can definitely see Williams in our own children. When I asked about the classic Williams voice, Heather said that Erik definitely has it (a little hoarse and nasal-sounding). When I looked closely at Sophie, I can see Erik has some of the same features after all. I can see it in their little noses, their puffy lips, the contours of their faces, and the outlines of their chins. However, Erik seems to have the large, classic WS hands when Sophie does not. One of Erik's hands is curling into a ball now, Bob Dole style, and his therapist voiced her concern over this. However, I paid attention to Brian's hands all weekend and noted that he often does the same thing when he is cold. I am hoping that is the end of the story.

Because we didn't have child care immediately available last night, I sent Brian off to a New Year's Eve-Eve party alone. I was a little disappointed when Brian, Heather, and Sophie all left us alone, but after having so many people in our home over the holidays, it was nice to have a quiet evening. I made french fries for us to snack on, but Erik simply scooped the catsup in his hand and tried to drink it, ejecting the potatoes with his tongue. I can't tell you what either of us ended up eating for dinner last night, but we snacked on leftovers until we were satisfied, and then I put Erik to bed. I spent an hour or so reading my book for book club.

I wonder what would happen if I stopped reading the material on WS and blogging. Would I feel a greater sense of "normalcy?" I doubt it. I still have two therapy sessions each week to remind me of Erik's struggles and will probably add yet a third in the spring. Heather and I talked briefly about the balance between being oversaturated in WS education and trying to live a normal life oblivious to everything. There are actually days during which I don't think about WS much at all. However, when I write, it's usually all I think about. My new plan is to take a week off of blogging here and there to give my poor, overloaded brain a rest. It may or may not provide any benefit to me emotionally, but I'll run it up the flagpole in 2007 and see what happens. I have a feeling that when it's time to stop writing, I will have nothing more to say about this subject and will move on to something entirely different, like knitting brightly colored cozies for my kitchen appliances or base jumping.

Until then, you are stuck with me. So there.

Saturday, December 30, 2006

No More Normal for Me

I am fresh out of smiles today.
Sadness swells like a coffin-heavy, rain-soaked bloom
deep in the center of my chest,
the cause of which remains a mystery at the moment.

There are days when the endurance
this life of mine suddenly requires
remains in very short supply, and
my heart revs with an electric sense of panic.

I’m an absolute tangle now of what I feel
and how I probably should feel.

But I am only able to feel what comes,
as my heart seems to have a mind of its own.

I have been told that

I’m so lucky.
I’m so blessed.

Why, then, do I feel so unbelievably cursed?

My sense of normal is no longer the product
of the cookie cutter life I dreamed of long ago
as I played with the blond-haired, blue-eyed dolls
that were rarely missing anything at all.

My tears betray me because --

There is no more black and white.
There is no more innocence.
There are no more guarantees of anything at all.

I cry because now I see.

There is no more normal for me.

Wednesday, December 27, 2006

Status Report #1

Random Thought(s) of the Day: What is a "cotlet" exactly? If you don't like them, can you buy just the "aplets?" What if you are allergic to walnuts? Is Santa allergic to walnuts?

I just logged on to report that we have not cracked a single jar of freaking Gerber baby food for five whole days now. It's a new record! When we are done with them entirely, you can expect me to line up the cute little leftover jars on a log, grab the nearest .22 rifle, and do some serious Van Damage target practicing. Nothing would make me happier than watching a line of genetically perfect, chubby Gerber baby faces explode into a cloud of sparkling shards of glass and globs of turkey dinner. I will document the event accordingly using photos and my descriptive writing skills. I have been dreaming of that day for over a year now. Death to green beans and rice number threes! If I never see the pasty, orange insides of another jar of Gerber "lasagna," I'll die a happy woman.

Cute Erik Story: When Erik was an infant, I used to lie on the floor and hoist him into the air, practically screaming "SUPERBABY!" He has now begun to lie on me, smile, and request "Soup-Babe." When I (barely) succeed in lifting him into the air, his feet hang down and touch my stomach. I can't believe how tall the kid is getting. My arms have never been so toned!

I ordered the new book on the Lenhoff Family's experience with Williams syndrome called The {Strangest} Song: One Father's Quest to Help His Daughter Find Her Voice. I'll do a review when I'm through, but I have a mountain of books to read, so please don't hold your breath. If any of you want to join me and talk about it, let me know and I'll read it with you. When I did a search on Amazon for books on WS, I come up with almost nothing, save for a handful of outdated medical references and inadequate resource lists for parents. Half of these items were no longer available. Over the past few days, I have found myself thinking of writing a book myself. Since our family has just begun our story, it will take years to write, but something tells me it needs to be written. The seed has been planted.

I hear Erik sobbing downstairs. Why? Brian was pressing each key of Erik's new keyboard, singing along to each note accordingly and ignoring the limits of singing abilities, oxygen requirements, and human endurance. When he reached the higher octaves, he was required to adopt a roughly cracking falsetto that likely shattered the contents of my china cabinet. When he hit a note that only dogs could hear, Erik's hyperacusis kicked in and he began to scream. Brian is now calming Erik, promising him he will never "sing" again. I'm trying so hard not to giggle. Is that wrong?

Tuesday, December 26, 2006

Happy Day

Why must I wake up at 3 a.m.? Is there something I am supposed to be doing at this very moment that can't wait until the sun makes its appearance? There is no cow to milk or butter to churn. I can't figure it out.

Christmas 2006 is now in the history books. There were no butterflies in my stomach. There was no frantic, last-minute shopping for gifts. My knuckles were hive-free, and my fingers didn't swell around my rings like pale, sweaty hot dogs. Brian and I combined both of our families for the holiday, and things went without a hitch.

Saturday afternoon Brian's parents arrived from the valley. I prepared a stock pot of beef stew for Brian to put in the oven to simmer while Erik and I attended Baby Samantha's first birthday party across town. The weather was extremely iffy, as it was pouring down rain and fat, wet clusters of snowflakes simultaneously and was a mere five degrees from transforming everything into a black sheet of ice. However, it remained warm enough that Erik and I had a safe, relatively quick trip on the highway through holiday traffic to Sammy's house, where Shaena, Sammy's mom, had prepared a lovely selection of munchies and a beautiful bowl of frothy, pastel-colored punch. I truly enjoyed watching Shaena's amazement at how emotional the day turned out to be for her. I remember watching my sister-in-law fight tears at my nephew's birthday party years ago and wondering what that was all about. I fully understand now. Most of the women I know and love have struggled to have kids in some way. Most of us have waited years for them. It hasn't been as easy as we were all led to believe it would be. Therefore, the first birthday becomes a giant milestone for our families. We look at our growing kids in amazement and can't help but feel extra thankful.

As the party progressed, we sang "Happy Birthday" to Sammy, and the ice cream cake was skillfully carved. Erik and I retired to the living room, where we sat by the Christmas tree, listened to Christmas songs, and quietly feasted on thick layers of chocolate cake and vanilla ice cream. Sammy soon joined us to open her gifts. She thoroughly enjoyed waving colorful scraps of wrapping paper in the air and watching the colorful party balloons bob up and down. She was given an adorable, tiny princess crown trimmed with fluffy, pink marabou, which she enjoyed looking at more than putting on her head.

When we returned home, I tried to explain to Brian how things went for me emotionally. As always, I have a heartache hangover for some time after an event involving other children. I may never again attend a baby shower, and birthday parties are still a bit of a stretch for me. I had been anxious about whether most people at the party knew about Erik. I was actually relieved when they seemed to say just enough to let me know that they knew and left it at that. The folks in attendance are all people I see occasionally and truly love, as Shaena's family and friends have pretty much become part of my own family and friends over the years. They were wonderful to us both, but I still felt a little awkward. I think most of that feeling stemmed from me debuting Erik in this particular group for the first time. I tried to think about how I could have changed my attitude going into this situation and came up with absolutely nothing I could have done differently. All in all, Erik and I did fine, and we were in a safe, loving environment where I could feel anything I wanted. It's impossible for me to pretend or forget there's nothing wrong yet, as I am still grieving and comparing Erik to other kids. We still had a great time. In fact, we stayed much longer than I originally intended before we drove home through the rain again -- me with tears in my eyes for various reasons and Erik singing his own rendition of "Happy Birthday" from his car seat.

Happy day!
Happy day TO YOU!
Happy day Sam-MEE!

Sunday marked the beginning of our Christmas Eve Extravaganza. Brian's parents accompanied us to church in the morning, where we sang Christmas songs and enjoyed a message about Christmas being a time of change if our hearts are open to it and we dare stray from the usual script. I smiled to myself because they didn't seem to have "O Holy Night" on the roster that morning. As you might recall, that was the song that got me a few days ago in my own living room. However, toward the end of the service, a stocky, benign-looking man wearing a red turtleneck and lizard-green sports jacket made his way to the microphone and belted out a booming version of that very song, the likes of which our congregation has probably never heard before. Even Brian voiced his amazement after it was through. I had tears in my eyes and a giant smile on my face. You got me, God.

After the service, I retrieved Erik from the nursery and was making my way back to the front of the church when a man whom I didn't know approached us and loudly announced, "Looks like somebody's going skiing today!" I glanced down and realized that Erik's pants had ridden up slightly, exposing his leg braces. Apparently, they look like ski boots. Um... What do you say to that? Yeah, we're really pressed for time and prefer to hit the slopes in our Sunday best? I automatically explained they were leg braces, and the man dissolved into the noisy crowd. When I told my father about this later, we actually laughed very, very hard. These are the moments that make what is horrible into something ridiculous and much more emotionally digestible. Thanks, Dad.

My family Christmas Eve tradition includes dining on bowls of hot clam chowder and tearing into presents, a process that usually takes hours, as we all take turns unwrapping gifts. It was a lovely evening, but the absence of my brother and his wife was palpable. We missed them very much.

Monday morning I got out of bed early and got things going. I set the table with our wedding china and stuffed our 14-pound ham in the oven. I chilled bubbly beverages on the porch, prepared green bean casserole, baked a cinnamon-apple Hanukkah cake, and checked to see that my cranberry salad had set. Any stress I might have felt was no match for the knowledge that my mother was also awake across town making potatoes, pies, and rolls. She is my secret weapon. When everybody else woke up, they enjoyed working Sudoku puzzles and video games, gladly offering their help when I needed it. Everything felt so easy this year, and I had a fabulous time preparing everything. Brian assembled Erik's new piano keyboard and stand. I found a place for it in the living room, and we enjoyed some of the amazing songs programmed into it. My family joined us at noon, and we sat down to eat together. Erik missed the meal because of his nap, but I woke him up in time to say goodbye. As the front door began to swing closed as people left the house, Erik was still wishing us all a very HAPPY DAY!

My heart is indeed open, and I can feel things changing in a big way this season. Although it has been painful to adapt to what has changed without my consent, it feels good to let a lot of the old dreams and expectations go and accept what is new and unknown. What better time to do this than Christmas before a brand new year begins?

Okay, so there may be a few butterflies in my stomach after all.

Friday, December 22, 2006


It's 5:30 a.m., and I'm awake. That isn't unusual, really, but I'm in some sort of alternate state of consciousness created by confusion and exhaustion. I found myself at the comforting glow of my computer screen like a moth with insomnia. So here I am.

I read my book until 10:30 or so last night and then dropped off to sleep. I recently bought sleeping pills at Costco but have been avoiding them, as they are twice the strength of the ones I'm used to, and I can't cut the tiny, blue pills into quarters. I wake up late and am uncharacteristically grouchy with my husband. Not good. I took my chances without them.

Erik started crying at 1:15 a.m. I got up twice to comfort him. Brian joined me the second time. I let Erik cry after the second trip. We don't let him cry more than 15 minutes before visiting him again, but he finally cried himself to sleep. After waking up, I usually lie in bed for at least an hour before I can fall back asleep, and that isn't always successful. A lot of the time I just get up and enjoy all the world has to offer at some ungodly hour. Amazingly, I fell back asleep this time and began dreaming the second horrible Erik nightmare in my mommy career.

Brian and I were staying in a giant, relatively ancient high rise beach hotel on a tropical island. We had enjoyed a wonderful vacation and were getting ready to go home that day. We walked down to a little corner store to buy some jo-jos and pop, where the girl behind the counter had a problem with us and decided to insult my husband for filling out his lunch order form incorrectly. I was furious. I was gesturing wildly and yelling at her, reminding her that she worked behind a counter frying up greasy baskets of jo-jos and that my husband was a civil engineer, when her enormous, barrel-chested father came out and asked what the problem was. I explained the situation, and we ironed things out. The whole argument was something that would never occur in my waking hours, as (1) I have worked behind several counters and gone home smelling of grease myself and (2) detest conflict of any kind. Nevertheless, we took our artery-clogging grub in paper sacks dotted with spreading lard stains and made it across the gooey, sunbaked asphalt to the street to our hotel. The ancient loudspeakers in the lobby crackled with a muffled announcement we could not discern, and the lazy crowd swirling around us came to a halt and then mysteriously began to scatter. We sauntered to the plate glass window and saw a thick, slowly surging wall of ocean approaching the hotel.


Brian quickly guided me up the glossy hardwood stairs, and we began ascending them rapidly without a sense of panic. On our travels, I'm lazy. I always let Brian remember the room number for me. There was a band churning out cheerful reggae music in a restaurant we passed, and I felt like I was on a deck of Titanic for a moment. Creepy. We searched for the third floor. Our feet hit the landing at floor two, and we ascended the next set of stairs. The plaque on the wall said FLOOR 7. We strode down the hall spanning the length of the hotel, thinking we had taken the wrong staircase. Suddenly, I realized Erik was in the room napping when we decided to get something to eat earlier. I looked out the window on the landing and saw smokestacks on a boat at sea lose their battle to stay upright and topple as waves criss-crossed each other. Water was sucked back in as more surged forward, creating a watery chaos. Pleasure boats and catamarans disappeared beneath a layer of ocean foam. Our hotel was now surrounded by water. Brian explained that the building had been there for 70 years and that we would be fine. We continued down the hallway. However, the people around us began to panic. One woman was sobbing, screaming that she felt like she couldn't breathe in the humid hallway as the ocean closed in on us. I turned my emotion off and walked right past her. Floor four. Floor two. Oh God! My baby! I thought of Erik drowning without me by his side. I was running like I never ran before. Panic overtook me. Brian and I became separated, but my feet kept going. When I realized I was alone, I glanced down at my room key. It was brass inlaid with beautiful, swirling mother of pearl. My heart sunk, and a feeling of dread overcame me. There was no room number on it. More water slammed into the hotel, and as I ran past another window, I saw chaise lounges washing out to sea.


What the...? I'm awake now, and I lie in the darkness with my heart pounding, trying to identify the strange sounds I am hearing from the master bathroom. I glance around and see the outline of my dresser and of our bed. I'm home again, and I know Erik is safe in his crib. Forget the tsunami -- there seems to be a giant rat or something burrowing in the wall. I get up, pumped full of residual adrenaline from my horrible nightmare and the knowledge I have to hunt whatever this is and kill it with whatever is available. My options include an eyelash curler and an electric toothbrush. Damn. It's then that I realize my cat, the size of a circus sideshow attraction, has managed to pry the cupboard open under our jacuzzi and has crawled deep into the guts of our bathroom. There is no longer any noise. Great. That's all I need -- a dead 14-pound cat in the wall of the house. I call her name and get no response. I see nothing but insulation, an ominous-looking warning about electrocution on the casing of the jacuzzi motor, and the contour of the wrong side of the tub. I shudder thinking about how many mice and God knows what else called this formerly filthy house their home when we bought the place. Hantavirus, here I come! Finally, I hear a little crackle of the paper insulation covering, and Gracie's apple-sized head emerges from the tight space beneath the tub, her eyes completely dilated in the darkness, making her look like a cartoon. She flattens out to free herself, and she is suddenly the size of a giant, furry area rug. However, she makes it, and I close the door behind her.

Oh man. What a night.

Tuesday, December 19, 2006

The Skooby Monologues

(Written Saturday, December 16, 2006)

We are enjoying a quiet Saturday at home today. I plan on getting out to dinner this evening with friends but have nothing else planned this weekend. My neighbor very graciously invited Erik over to see the life-sized Santa she purchased, and we may wander over there tomorrow. When I mention Santa, Erik says, “Ho, ho, ho!”

I am extremely careful about filtering what Erik sees and hears in terms of the media. We keep the television off most of the time, and the shows that the other kids and mothers seem to be familiar with at Erik’s school are foreign to both of us. Still, I have found myself penning angry letters in my head as even the commercials on the radio hardly seem safe anymore. I’m not the neighborhood prude, by any means (ahem), but when it comes to my son, I try to keep things in his environment rated golly G. After all, he’s only 2 years old. I save my crime shows for hours when he is in bed, and, for the most part, I change the popular music channel in the car when things get a little steamy on the radio. For instance, I heard his little voice in the back seat singing “Yeah! Yeah!” along with Ludacris to “Shake Your Money Maker” on the way home the other day. After a quick assessment of the lyrics, I winced and immediately switched over to National Public Radio, thinking that was a better choice. Besides, I could catch up on the headlines in traffic. Erik wasn’t being talkative, anyway.

You would never guess in a million years what happened.

An entire two days later, I turned on the television as Erik was headed off to bed and happened to land on a show about JonBenet Ramsey as I flipped through the channels to see what was on. Erik crossed the room just as the narrator began describing the crime, and I automatically picked up the remote control to quickly switch the channel to something else -- just as the first and half of the second syllable of a word for a specific part of the female anatomy was mentioned. As I was basking in the glow of being America’s perfect mother, shielding my son from the evils of the world and puckering up to give him a good night kiss, his sweet mouth opened and he matter-of-factly FINISHED THE WORD. He didn’t mumble. He didn’t stutter. It was clear as day. It seemed to hang in the room like a neon soap bubble. Both Brian and I looked at each other with our mouths agape as Erik continued to march out of the living room as if he had said nothing at all. Brian confirmed that my mind was not playing a trick on me and that was indeed the word he had spoken. Where in the WORLD would he have heard that word? I racked my brain. The only thing I could think of was a news story I was listening to on National Public Radio in which they mentioned this particular word once. The kid is amazing. He didn’t repeat the word in the car at the time but apparently absorbed it. Of course, thankfully, he has no idea what the word means, and there are more horrible things he could say. Being a medical transcriptionist, I have to admit I was a little proud, but any sense of pride I may have will undoubtedly instantly dissolve in the grocery store if he decides to try that word out again.

It is becoming apparent that despite his struggles, his language is coming along in leaps and bounds at a freakish pace. Most people don’t have the opportunity to hear him speak like he does in the comfort of our home when he is relaxed. His therapist mentioned Thursday that she knows how lucky she is that she can see him in all of his glory at home, because at school he is still quite shy and reserved around the other children.

I had a very hard time watching him work on going up and down stairs with his therapist Thursday. I reached the point where I simply couldn’t watch and put away laundry instead. He doesn’t seem to be even close to being able to grab a hand railing and successfully place each foot on a step by himself. He can hardly manage it with help. It’s just unbearable watching him struggle sometimes, and it seems so hopeless. I know it’s not, but he has some pretty gigantic hurdles as far as the way his brain works that other kids don’t have to deal with. I do know that the brain can be trained to accomplish things in spite of these obstacles (see “Spatial Relations and Learning” in the October 2006 Heart to Heart). I’m not convinced he can actually determine where the steps are with his lack of depth perception. His braces make it impossible to walk on his toes, but they now turn in worse than ever, which is an entirely new problem. We will be discussing that more with his physical therapist. I don’t see an end to his leg braces in sight, but I have come to terms with that. They are part of our routine now, and I am highly skilled at putting them on and taking them off in a matter of mere seconds. Between footie PJs and Erik’s constant brace/shoe combination, the boy virtually never sees his toes and actually smiles at them when I remove his footwear. That’s a little hard, too, but that’s life for us now. Summer will come again, and the footie PJs will go back in the closet.

In the meantime, I will enjoy watching Erik shine by greeting people by name and memorizing every word he hears. He was trying to tell me something the other day, and I suddenly realized he was trying to say “excavator.” Lo and behold, he was standing next to his beloved toy excavator he received for his birthday. Over the past month it has become apparent we are entering a new chapter now. It’s exciting beyond belief and extremely scary at the same time, and I am really enjoying watching Erik and the other WS kids in our circle succeed at whatever they are accomplishing or tackling at the moment. There are so many good things ahead of us.

In summary, I would say that life is as perfect as it can be with all of the imperfections we are learning to live with here, and I’ll continue to be the happiest, proudest mother on the planet -- as long as Erik doesn’t casually mention anybody’s vagina in the 12 items or less line at Safeway.

Monday, December 18, 2006

Thank You, Anne.

I have never cried over the death of someone I never had the opportunity to meet.

Until now.

Just a couple months ago I decided to watch the videos I ordered from the Williams Syndrome Association. To be perfectly honest, it was not a pleasant experience for me to see people with WS on video for the first time. I was shocked. It was a giant slap in the face, and I was devastated by the reality of it all. These people were my son.

However, when I saw Anne McGarrah appear in the 60 Minutes video, I felt my first real glimmer of hope for Erik. Anne was incredibly well spoken and offered insight on how Williams impacted her life. She painted a realistic picture of what living with WS meant and was a pioneer for people with disabilities, some of whom are unable to speak for themselves. Some of what she shared was obviously very painful, but she had a wonderful attitude and made me smile and actually laugh through my tears. It was the first time I saw beauty in what I still see as a cruel, messed up thing for anyone, especially my own child, to have to live with. I can't imagine ever being completely at peace with what has happened to Erik, but my heart is now open, and time will tell. That's not nearly as important as the fact that I now believe in my son and have great hope he will be a happy, productive adult. I am a better mother now that I have hope.

I know Erik can make a difference in this world -- because Anne did. She helped me get through suffocating darkness when I needed it most, and she never knew it. If she were my daughter, I would have been so incredibly proud of her. My heart breaks because I never got to tell her thank you.

So I sit here at my desk with tears running down my face for a woman I never knew, feeling grief I have postponed feeling until I was ready. In front of me sits an envelope containing a letter to her mother, another woman whom I have never met. I wasn't sure what to say, but my heart guided my pen. I watched myself automatically print the words I wasn't sure I could find within me.

I have never thanked a mother for giving the world her child before.

Until now.


ANNE LOUISE MCGARRAH GREENFIELD, Anne Louise McGarrah, 57, of Greenfield and Amherst, died Dec. 7, after a long struggle with disabilities associated with Williams Syndrome. She was a pioneer, teaching the world about developmental disabilities and Williams Syndrome, appearing on “60 Minutes” with Morley Safer and Dr. Oliver Sachs on PBS. “Come Into My World,” she wrote in a 1991 poem after learning she was one of the oldest people with Williams Syndrome. Anne was a pianist and loved to play for children of all ages. She worked as a teacher’s aide at the University of Massachusetts, after graduating from Rockville Terrace High School in Rockville, MD, and received a Teacher’s Aide Certificate from Amherst Regional High School. She lived at the Buckley Health Center in Greenfield, at the time of her death, here she was beloved by all, and for a time published a “Dear Annie” newsletter for residents. She is survived by her mother, Barbara of Amherst, two brothers; Robert of Bethesda, MD, and Douglas of Hamilton, MA, and 7 nieces and nephews she loved so well. A graveside service will be Saturday at 10:00AM in West Cemetery, Amherst, with a memorial service in February. The family requests in lieu of flowers, contributions to the Williams Syndrome Foundation, c/o Dr. Barbara Pober, Children’s Hospital, 300 Longwood Ave., Boston, MA 02115.

Saturday, December 16, 2006


If you have 10 minutes to spare and are interested in catching up on the last two years of Erik's life, a lot of which happened before I met a lot of you and was able to post photos, this is for you. Love to all of you from our family, near and far.

Wednesday, December 13, 2006

Kids Say The Darnedest Things

Okay, Bill Cosby I'm not, but my voice recorder is up and running (see blue doohicky to the right). Push play to hear us make complete asses of ourselves to get Erik to talk after his bath. I think you will appreciate Erik's rendition of what a pig says. It makes me laugh every time.

I'll change the recording every weekend or so. Enjoy!


Pritty Twee

I woke up today feeling like my body was packed with hot sand. Every muscle was complaining. While that feeling has passed and I have successfully propped myself in an upright position, I feel like wet dog food today.

We went to bed at a decent hour last night, but a freak Wizard of Oz wind storm kicked up all night long, slamming against the house or making every window vibrate as if we were on a Greyhound bus traveling at 60 miles per hour down the interstate. Huge raindrops assaulted the siding of the house and continue to hit my office window. On top of that, I was called into action in the darkness by a little boy wearing a soiled diaper and had some trouble returning to the state of poor quality sleep I did manage to achieve. Urgh.

Erik and I walked down the sidewalk to his school yesterday and saw a staff member whose name I have, regrettably, never bothered to learn. Erik looked up at her from his pigeon-toed stagger and greeted her with a very Sylvester Stallone-like, "CARE-ULLL!" Apparently, her name is Carol. She was certainly surprised to hear this from the normally quiet, drooling, motionless kid in class. He will now lie on the diaper table at home and look up at his photo board, where I have everybody's babies' photos displayed, and he will run through all of their names, from Tatum and the WS friends he has never met to Brayden and Brogan, the cousins he can't stop talking about. For those of you with a small Williams child, this is just a tiny glimpse into the future. There is a lot about this syndrome that completely blows my mind, and some of the genetically-programmed wonderful weirdness is now beginning to show itself. The skill with names and faces is incredible. Erik may not be able to walk down the street very well and runs in terror from small appliances, but he knows your face, whether he has met you or not, loves you, and wakes up talking about you.

The Christmas season seems to have dislodged a nasty block I had in my creative streak, and I am feeling the need to add to this blog. Someone commented earlier about wishing they could hear Erik speak, and I have signed up for a service that allows me to call an 800 number and record messages to feature here on this page. The trick is to use my the old Dictaphone I acquired from the doctors I used to work for and record Erik saying things so cute Bill Cosby would be proud. I am also looking into making some videos for you to display here. We'll see how far this energy takes me before I collapse in a sugar cookie-scented heap in front of the Christmas tree.

Speaking of our tree, here are some photos. When I balanced on the ladder to apply lights to the tip-top, I was in the middle of watching that scene from Christmas Vacation in which Clark Griswold was putting up their holiday light display and managed to staple his glove to the house and fall into the bushes. I almost giggled myself to my own bough-covered demise.

Monday, December 11, 2006


Erik loves to count to three and yell, "Go!" What a fabulous way to announce that our Christmas season is officially underway!

We had a busy weekend. Saturday we bundled up and joined Kathy, Molly (Kathy's mother-in-law), and Dominick downtown for the Christmas parade. Baby Sammy and Shaena were down the street, but we didn't see them in the chaos. The streets were already lined with people when we arrived, but we found a weak spot and a place to park our bulky strollers. Erik was placed on Brian's shoulders, and we watched for the beginning of the parade to round the bend down the street. Of course, we first saw a gleaming, white fleet of police motorcycles, blue and red lights spasmodically flashing. As they made their way by, they flipped their sirens on and off. WOOHP! WOOHP! WOOHP! This elicited a loud wail from our instantly very frightened, red-faced child. I plucked Erik from his perch and held him close to me, frantically trying to locate his little body to pat underneath the thick layer of his down coat. Thankfully, he was easily comforted and returned to his seat on his dad without complaint. We repeated this ritual about three times. I can't really accurately explain how I feel when Erik reacts this way to things that should be fun -- things other kids seem to enjoy without hesitation. What makes me feel even more horrible is that my own eyes water every time. I feel so awful that I just want to cry right along with him. It's maddening. But life and the parade must go on! For the most part, we all enjoyed everything that came down the street. There were giant, girl-faced drops of blood marching for the Red Cross entry, a gang of folks in expensive leather attire sporting mid-life crises riding farty-sounding Harley Davidsons, classic Chevy automobiles gleaming despite the absence of sunlight, and a scary green Grinch atop a floating mountain of presents. My heart picked up its pace when I saw my old high school marching band come around the corner. As they approached, I saw that our pristine white Nikes with the black swoosh were replaced with a scuffed, slovenly collection of old tennis shoes. Our precariously balanced water buffalo hats were nowhere in sight. Instead, I saw only cheap, flaccid Santa hats atop a very small group of bored-looking teenagers with drooping instruments. Kathy and I looked at each other and winced. When we marched in high school, we were lucky enough to represent Oregon in the national Fourth of July parades in Washington, DC and Philadelphia. We were a light golden tan from hours of marching up and down rural roads with our band and had every note memorized. We marched wearing heavy polyester jackets in sweltering heat, and we were proud because we completed both parades without anyone passing out. Our spirits were lifted this weekend, though, when we saw and heard the new high school's band round the corner. We bounced to the drum cadence, looked at each other, and nodded our approval. When I looked up at Erik for his input, his lips had that familiar, awful puffy appearance and hung open. However, he was only halfway shut down. His eyes seemed to be absorbing the scene in front of him. He seemed to enjoy an impressive convoy of tractors with waving drivers and the occasional dog. There was even a prancing poodle wearing gold shoes.

Santa rounded the corner at the end of the parade riding a giant, red wall of fire truck. I grabbed Erik and walked away from the street, stopping a half block away to where we could watch Santa float by above the crowd but not stand terribly close to any unexpected blasts from sirens or horns. He at least feigned interest, and we began our walk back to the car.

Sunday Kathy and I baked cookies here. Despite having one oven and all of the counters underneath a layer of recipe cards, bakeware, and thousands of jars, bags, and tubs of ingredients, we did well. We baked at least five different batches of cookies. Our only casualty was the fudge, which came out of the pot too granular and dry and then shortly thereafter began to sweat, as if it had run some sort of baked goods marathon, rendering it a greasy slab of cocoa-flavored disaster. We're not sure what happened, but it gave us a case of the giggles. I also discovered that baking my very finicky sugar cookies while I'm distracted is a bad idea. Other than that, we ended up with some gorgeous, delicious cookies, and I'm even more in the Christmas spirit. It was just what I needed. It took me back 30 years to the days we baked together wearing our little Campfire Blue Birds uniforms.

Brian backed the truck up to the porch last night and drug in the largest Christmas tree I have ever seen short of the White House. It's an approximately 10-foot tall Douglas fir. We will need a ladder to decorate it. I'm not sure how I feel about it yet, but it certainly scents the living room nicely. Erik gave his approval with a lot of jogging around its base and saying, "Pritty." He also voiced his appreciation of the lighted swag I put up on the balcony ("Pritty yites").

It's time to get back into the work week, although my heart isn't quite in it. I want to decorate the tree instead!

Friday, December 08, 2006

Tear Soup

A thrill of hope, the weary soul rejoices,
For yonder breaks a new and glorious morn.

-- From "O Holy Night"

Lately I have written much about my experiences and observations, which I find greatly amusing and fun. However, since I have now been in this house for four entire days now, I find myself obligated to turn inward instead to write. I mean, who wants to hear about my trek to the mailbox in the dark last night or what the cat threw up on the stairs?

I'm finding that as Christmas approaches, my emotions are surfacing with a much greater force than I expected and are becoming quite difficult to neatly contain. Emotions are so darn messy. Being a teensy bit of a control freak, I don't like messy things that a Clorox antibacterial wipe won't instantly take care of. Emotions bubble and boil over. They're sticky. They're sweet. They're bitter. They're even sometimes kind of greasy and leave a residue on you all day. You feel them whether you have given them your consent or not. Without them, life would be so much cleaner.

I just finished Tear Soup, a beautifully written book about Grandy, a woman who suffers an unspecified loss of "someone close" and goes through the grieving process in the form of making a bubbling batch of tear soup. She starts by choosing the size of the pot to use, and the book explains that sometimes a person can start with a small pot but decide their grief is bigger than that or vice-versa, but that it's okay to change pots in the middle of cooking. The well-meaning folks around her have suggestions on what to put in her soup and how long it should take, criticizing her methods and telling her she is taking too long, but she sticks to her own recipe, sometimes inviting someone over to taste it with her and sometimes telling people she needs time alone. There is even a woman who seems to be constantly making batches of tear soup that Grandy steers clear of. Her husband makes his own batch and quietly tastes it in the corner, and, even though it is hard for her to leave him alone, she knows that's best. At the end, the hardest day comes, and Grandy puts the tear soup away in the freezer to taste now and then. Her grandson says, "What will I do when you die, Grandy?" And she replies, "I'll leave you my recipe for tear soup." It is a beautiful children's book with big, beautiful illustrations, but its message applies to all grieving and all ages. It was especially helpful to me. I am looking forward to storing my tear soup away, but I can't rush the process. It's hard learning I'll never be truly done with my grieving and tears, although I'll hopefully get them out less often as time goes on. It's funny how some of the simplest lessons in life I never understood until now. I guess there is a lot of learning left to do.

Erik and I sifted through my CD collection this morning and chose Christmas music by the Glenn Miller Band. We wrestled around in front of the stereo a bit and enjoyed the songs as they played. Erik enjoys just hanging out or climbing on me as we listen to music with me on some mornings. When "O Holy Night" started to play, Erik suddenly became still, standing next to where I sat cross-legged on the floor. His blond hair was fluffy and shining, and his cheeks were slightly flushed in beautiful contrast to his ivory skin. I'm not sure what came over me, but the song, the Christmas lights, and the connection with this beautiful child made my heart swell and ache, and tears spilled out of me. I just grabbed him and quietly cried, and he was happy to let me hold him and let the tears soak into his shirt. I'm not sure what kind of cry it was. I guess it was a big ladle of the tear soup I have been making since March of this year. There are a lot more ingredients in the progressively complex broth than there used to be. I cried for Gage. I cried for Anne, a woman with WS whom I loved at first sight but passed away this week at the age of 57 after battling depression for years alone in a nursing home. I cried because I don't know how to write our very first Christmas letter we wanted to send out this year. I cried for the relatives I never got to know. I cried because I love the relatives I do know. I cried because I am so very lucky to have an angel with me in the form of my son who finally calls for his mommy.

I'm thankful, sad, and happy all at once.

I can honestly understand why some people don't do well at Christmas time. It's an intense time for children and adults, when everything from the previous years comes to a head if you stop long enough to have a quiet moment. We think about those we have lost and those who are close. Christmas memories come flooding back, whether you want them to or not. Good or bad, whether you consciously recognize these things or not, they are still with you. The mysterious emotions we feel on the surface have very deep roots in the past that may not be visible. This will be the most meaningful Christmas I have experienced. I'm happy because Christmas to me is a time of rebirth, hope, and unconditional love, and I'm looking forward to the New Year with new strength, because my son has given me all of those things. My eggnog may taste a little salty this year, but I'm okay with that.

Tuesday, December 05, 2006

Da Kine

In what other land save this one is the commonest form of greeting not "Good day," nor "How d'ye do," but "Love?" That greeting is "Aloha" -- Love, I love you, my love to you... It is a positive affirmation of the warmth of one's own heart-giving.

- Jack London

Did you miss me? I missed you! I'm fresh off the plane from a quick vacation!

After spraying on a film of artificial tan from a bottle, packing our bags, and leaving our towheaded boy with Gramma and Boppa, Brian and I strapped ourselves into a small commuter plane and flew to San Francisco early Thursday morning. We gladly left approximately 5-degree weather behind. After a moderately turbulent flight and several minutes of prayerful meditation to keep myself from screaming and alarming the other passengers, I found myself mesmerized by the color of the sea and sunlight reflecting off the silver engine as we landed in California. We enjoyed a relaxed layover, switched planes, and made it to Hawaii around dinner time. I was happy to put my big old feet on terra firma, even if the ground was volcanic. After all, I am most at home amongst hibernating but living volcanoes, as Oregon tends to shudder, steam, burp, and swell occasionally, reminding me the earth is in a constant state of change. Hawaii is no different. I am not generally thrilled about traveling by air, but I admit my favorite part of flying has to be Sky Mall, the catalog dependably located in the seat pocket in front of me snuggled next to the cartoonish safety card on every flight. I love this magazine because I can choose from expensive and practical items such as electronic fly swatters and jeweled sweaters for my cat. I quickly finished the book I brought that was written by a member of our church congregation about her experiences with her child with a disability, and I enthusiastically threw myself into the plastic, unrealistic world of a tropical vacation, starting with Sky Mall and a trashy true crime book I purchased in San Francisco. It took more effort than I imagined it would to leave Williams syndrome, therapy, and worry behind. Upon saying goodbye to Erik earlier, my heart immediately ached for just one more of his smiles and the warm scent of his hair. I do love that boy more than life itself. I am officially one of the mothers I used to poke fun at.

We were greeted by the slow-as-molasses pace only Hawaii can provide with a cheesy but delightful lei greeting and an almost maddeningly leisurely stroll to our hotel shuttle. Our hotel, the Outrigger Waikiki, was an impeccable, sand-colored building adorned by glittery but tasteful Christmas decor, including a gigantic wreath of greenery glistening with gigantic, colorful, glassy ornaments. We checked into our hotel and enjoyed dinner there before passing out in our room from sheer exhaustion and, in my case, two surprisingly potent rum runners, with the scent of gardenias still infused into my hair and skin.

Friday morning we trudged up and down the beach, dodging other tourists slow cooking themselves in a pungent marinade of sweat and coconut oil, took a short nap, and then gussied up to go out on the town with Rod, a former coworker of Brian's. My husband formerly lived in Hawaii for over four years while he helped engineer and build the H3 freeway on Oahu years ago. We took a taxi to meet Rod, his wife Rhonda, and their two daughters at a Korean restaurant off the tourist track, where we ate some tasty, sometimes unidentifiable food (I swear I ate something with a tiny head, and it was actually good). We were given another more heartfelt lei greeting by their girls. After dinner, we were taken to Leonard's, a Hawaiian bakery, to sink our teeth into some hot malasadas, a Portuguese delight made from fried pastry dough covered in sugar. From there, we attended a lively fireworks show and Christmas music on the beach at the Hilton.

Saturday we indulged in a free breakfast and attended a rather unfortunate seminar regarding a time-share/vacation club. I will not go into graphic detail about this particular presentation, but I will say it lasted way too long, and I was really angry by the end. Since I have dealt with the Hawaiian police in the past at age 17 and found it a very frustrating experience (long story for another time), I decided that wrapping my hands around the saleswoman's throat and finding myself incarcerated would be a poor idea, even if it did mean I got to meet a celebrity like Dog the Bounty Hunter. Instead, we took our $100 voucher for attending and headed to our hotel restaurant for some wonderful food and a mango daiquiri before heading back to the room, where I enjoyed another rare and refreshing nap.

After relaxing, it was time to hit the pavement again. We boarded a small van with other Oregon State fans for a ride to Aloha Stadium to watch the OSU football team play the University of Hawaii Warriors. For two entire days we had nodded in friendly recognition towards a growing number of fellow tourists wearing Oregon State attire and occasionally shouted, "Go Beavs!" at strangers wearing orange. There was a real sense of camraderie, excitement, and friendship throughout the resort community before the game. One woman in our shuttle van sported a large, alarmingly toasty-looking hat made of fake fur in the likeness of a very fluffy, adorable beaver. We arrived at the stadium and separated from the others. Brian had been told on the phone that our tickets would place us in the visitors' section, but we were very surprised to find we were virtually the only OSU fans in a green sea of Hawaii Warriors. The joke was on us, and the people around us found it especially funny, but me not so much. Since we arrived hours before the game, we purchased a spicy tuna sushi roll and a Hawaiian plate lunch, a Styrofoam container stuffed with roasted pulled pork, rice, macaroni salad, and garlicky shrimp in their shells. Brian and I are happiest when our eyes water and our noses run from overindulging in wasabi paste. We're addicted, and no food is ever spicy enough for us. After the food at Aloha Stadium, I will never be able to enjoy standard football fare the same way. The football game itself ended up being quite a battle with passion overflowing on both sides, deafening us all. Because we were so high up in the stadium, the warm gusts off Pearl Harbor rudely assaulted us much of the game, and I kept my right eye tightly closed much of the time to contain the crusty, dried out husk of my contact lens which threatened to join the trash and confetti swirling on the field. There was some rain, but I would classify it more as mist than anything else, and any water or debris that hit us while we watched was gently warmed by the air and wasn't unpleasant in the least. OSU won the game by a small margin. I think my heart stopped at least three times. After briefly enjoying our victory, we began walking quickly back to find our hotel shuttle, which required us to join 49,998 other fans (most of them fairly peeved about the result of the game) slowly lurching step by step across the parking lot and then over a pedestrian bridge to the other side of the highway. The scene looked a lot like it was taken directly from The Night of the Living Dead, only everybody was wearing Beaver or Warrior football attire, carrying pom-poms, or developing premature hangovers before our eyes.

Sunday we checked out of our hotel and walked across the strip to see if we could rent a car for the day. The only vehicle they had left was a silver Ford Mustang convertible, and we jumped at the chance to drive it around the island with the top down. We stopped at Haunauma Bay and Halona Cove to enjoy the scenery. Brian showed me where he lived before he met me, in a sprawling house precariously perched on a cliff with a grand view of the ocean, and told me funny stories about his old roommates. He also lived in a pad close to Lanakai, where we parked in a fairly well-to-do neighborhood of neat beach houses and ventured down an alley trail to the ocean. There was hardly a soul on this pristine beach, and the sand was softer than the stingy, spiky, shell-studded expanse of shore behind our hotel. The water was a light turquoise color, and walking next to the water felt like walking on a warm, freshly baked sugar cookie. From there, we went to dine on fresh fish and shrimp in Kailua at Buzz's Steak House, a dark, cozy wooden building decorated inside with tiny white Christmas lights and featuring candle lit, screened-in porches.

After dinner, Brian drove over the completed H3 freeway for the first time since the project was finished years ago, and we reluctantly returned back to the hustle of Waikiki. We returned the car and were temporarily homeless, so we sat by campy, warm tiki torch light on the damp, misty beach until it was time to catch our shuttle back to the airport. We spent the remainder of the night and the next morning on two more planes and arrived home by lunch time the next day. On the little death trap commuter, I dropped off to sleep. When I awoke, the scenery out my oval-shaped window looked like the backdrop of a bad spaghetti western -- snow, baby blue sky, and muted earth tones, letting me know we were back in Oregon and it was time to apply my signature Cover Girl Almost Nude lipstick. After we landed, I spotted a familiar, blond, slightly square-shaped head bobbing up and down in the airport window as we walked across the tarmac to the terminal. We walked through the automatic door, and I was greeted by Erik's voice saying, "MOMMY!" By the grace of God, I did not shed one tear. I knew if I cried one tear, there would be one hundred more right behind it.

The journey was fabulous, but it's good to be home.