Erik Quinn: The Heart of a Family: July 2006

Monday, July 31, 2006


I'm not certain why I didn't sleep well last night. I finally got up at 5 a.m. but have been awake off and on all night. I even took a Tylenol Simply Sleep before bedtime. Maybe it was the glass of ice tea I had yesterday. Who knows. This week I am working without child care, as my parents are gone on a bicycle trip. That always makes me a little nervous, as I am at the mercy of Erik's naps as far as getting anything done or going out and picking up work. It is definitely doable, but I just couldn't work like this all of the time. I definitely don't take my parents for granted. Anyway, maybe I'm just formulating a plan of attack in my mind instead of sleeping.

As for all of the sleep I lost, I think Erik found it all. Our picnic in the park Saturday began with Erik sobbing uncharacteristically and then passing out on my lap. One thing Erik never does is fall asleep anywhere besides his crib or occasionally his car seat. We had picked a cool spot in the shade by the tennis courts, and he dozed on my lap while we chatted and had a very nice lunch. Lisa picked a perfect weekend to get together, as the heat had backed off a little bit. I really want to do that again before the end of summer. Yesterday Erik and I went to Kathy, Alan, and Dominick's house in the morning. We sat outside by the kiddie pool after slathering the boys in sunscreen and putting on their hats. Erik began leaning over the pool to look into the water. As I was talking to Kathy, I glanced over to see how he was doing and saw a string of drool making its way from under his bonnet to the surface of the water, which I thought was a little strange. He still drools but now usually only when he is in a state of intense concentration. His face was hidden by his sun hat, and he was practically motionless. I jumped up, thinking he was having some sort of absence seizure. Something just didn't seem right, and I went into combat mode. When I got to him, I realized he was completely asleep. His legs were beginning to bend slightly, and he was keeling over. If I hadn't gotten to him, he would have gone head first into the pool! Alan set up the playpen for me, even though I told him Erik probably wouldn't sleep in it, and Erik actually surrendered to it for a nap. He has been a little more fussy here and there, and most nights he still screams an hour or so after putting him down for seemingly no reason. Saturday night he cried for 30 minutes straight. However, last night he went down without a peep. I'm wondering if he is having a growth spurt. He seems to be getting so much taller. The average height for WS males is 5'6", but he was at the 50th percentile for normal kids not long ago, and he seems to have grown by leaps and bounds lately. I was so proud when his feet touched the step on his high chair!

I ordered a couple videos from WSA on Williams and am waiting for them to arrive in the mail. I have decided that it is time to get a feel for what Erik will be like as he grows into a young adult. Up until this point, I wasn't ready to find out. I can't keep my head in the sand for much longer, as Erik is growing so quickly and starting to talk and interact with others. Brian also wants to watch them. We have come a long way in this short period of time. I ordered an extra set of videos for my folks, and I imagine we will be lending them out to family, friends, and Erik's school. I hope they will arrive this week, because the anticipation is killing me. It's hard to explain what I am feeling right now. I know that Erik will be his own man with his own personality, but there are some common characteristics we will see in him because of Williams, and I believe we can almost take a glimpse into the future by watching these videos and eventually meeting some older kids with WS. How many parents can do that?

Sunday, July 30, 2006

America's Most Paranoid

I'm sitting here rubbing the grit of sleep from my eyes this morning and thinking about brewing some coffee, although I haven't gotten that far yet. I'm also trying to snap out of one of my horrible nightmares and thought writing might help. I usually climb into bed around 8 o'clock on Saturday nights and watch Cops and America's Most Wanted. It's probably not a ritual that induces the world's most restful sleep, but it usually doesn't bother me in the least. I'm not entirely sure why I am addicted to crime shows. I know I get some of that from my family, as I grew up with the crackling and hissing of a police scanner in the background. Even my grandmother has one! It's almost a comforting sound to me. I have always fantasized about being a medical examiner or working in forensics in some manner. I would love to work in law enforcement, but I tend to look for the good in everybody before I see the bad, so I'm much too gullible for that choice of careers, but I know there would be a place for me where I could be successfully objective in a more clinical setting. It would be quite fulfilling to provide a voice for victims of crime in this way. Like most people, I have had criminals touch my life here and there over the years. As a child, our home was broken into when a neighbor kid crawled through the window, leaving a dirty footprint in my mother's kitchen. On another occasion, my father's truck disappeared into the night (we eventually got it back). In college, I came home from a weekend away to find the handle of my patio door had been removed in a half-assed attempt to enter my apartment (I broke in with a screwdriver once when I locked myself out, made less of a mess, and actually made it inside). In the midst of my poverty, when I was residing in yet another cell-like studio apartment with one window and no air conditioning, I awoke one sweltering evening to find a man had reached through the open window, popped the lock on the door, and was sitting on my bed talking to me like we were having high tea (I asked him to leave). Another evening I found myself lying on my stomach behind the counter at my job wondering if the man who just robbed me was going to shoot me in the back of the head. Those were the longest few seconds of my life. A few years later, I noticed a man hanging around my car in the darkness. It was not long after that my car disappeared and was stripped of a couple of lousy parts, shot full of holes, and left in the woods to rust by meth-heads (there is much more to this particular story, some of it quite funny, that I will tell you about sometime). I do admit that I like to see people pay for what they do, as crime chips away at a person's sense of security, which can never be entirely repaired. Because of these people, I never feel completely safe anymore at any time. I am on subconscious high alert day and night, especially in public. The worst of all is trying to sleep, especially when Brian is gone. I'm not sure how I slept the 10 years I lived alone! I did have my father put a metal grate over my bedroom window of my first house (see reason above) because I will never feel secure enough to sleep with an open window again. I guess I will always have a little bit of PTSD from all I have been through, although I am probably not nearly as bad as I have been in the past. I can now sit with my back to the door in a restaurant or spend time in a bank lobby, although I would rather not.

What has always frightened me the most is not knowing who is behind a crime that touches me personally. Putting a face to a criminal takes the edge off my anxiety a great deal and makes the offender much less sinister and more pathetically human. Not knowing who is behind a crime, like my robbery, conjures up the feeling I had of thinking there was a monster under my bed. If I had a mug shot of the man who robbed me, I could rest much easier. Unfortunately, he was never caught. Because of this, there will always be a bogeyman to me.

Well, what I'm getting at is this. Last night on AMW they featured the story of Adam Walsh. John Walsh, the host of AMW, was his father. In 1981, Adam's mother left the 6-year-old in the toy department of Sears while she was shopping, and he vanished. It turns out a security guard kicked Adam out of the store for arguing with some other boys, and he was abducted from the parking lot in broad daylight. They found part of his body in a nearby river days later. A man in prison confessed to the crime. His car matched the description of one seen by a witness, and there were bloodstains on the carpet inside. That's when things went horribly wrong. The impounded car was somehow sold for scrap metal before the conclusion of the investigation, the bloody carpet samples were accidentally discarded by law enforcement, and the man recanted the entire confession, dying a few years later in prison. How this little boy's folks made it through all of this with no real closure is beyond me.

In my dark, grainy clouds of sleep last night I couldn't find Erik. Surprisingly, he wasn't the victim of any crime. He seemed to be in a dark, cold, wet place underground I couldn't find the entrance to, no matter how hard I looked. There were people milling about, going about their everyday life, sitting in neat rows of church pews or doing their grocery shopping. I was frantic and yet trying not to disturb them in my search for a dark crevice in the ground in the middle of this Norman Rockwell world. This nightmare had no ending, although I knew in my heart that each passing second was my enemy, and upon awakening it took every fiber of my being not to go in and place my hands on my sleeping kid. I'm now comforted by the silent flickering of my Fisher-Price baby monitor, which tells me he is snoring with gusto, safe in his crib. I guess this is all part of being a mother. It's still pretty new to me. Having a son who will never know a stranger doesn't help me relax at all, but, as far as me being his mother, because of a healthy but survivable dose of the real world over the years, I'm thinking I just might be the perfect woman for the job. I will just need to keep my anxiety under wraps so I don't fuel his own.

Friday, July 28, 2006

I Scream

Erik has discovered the other men in my life (besides Mr. Clean): Ben and Jerry. Brian bought a couple miniature containers of ice cream the other night, and I thought they were so cute -- until I realized how many calories there were in approximately four bites of ice cream (240-something). Yikes! Usually I don't care, but lately I have been worried about getting trapped in the bathtub with Gracie kitty, so I am backing off the frozen treats a smidge. Brian said that he and Erik would eat them for me. Here's an S.A.T. flashback for you: Ice cream is to Erik like catnip is to Gracie. The boy simply went HAWG WILD. He always spits out the first bite, not expecting it to be so cold, and he then begins jumping up and down in a gameshow contestant-like frenzy, grunting and yelling, "MMMMMMMM!" It's like he just discovered the wheel or something (which, by the way, I think somebody with Williams syndrome did). I took this photo, but it doesn't begin to describe how hilarious it was. I'm not sure if any other WS moms out there have kids that grunt and wheeze like Erik does. I am told that it is because his connective tissue is loose in his chest. It is another way for me to tell if he is concentrating, bored, tired, or, in this case, excited. His lungs have checked out just fine, and I would sorely miss those manly little noises if he didn't make them. They make me smile and tell me volumes about what he is feeling. Plus, it freaks people out, and that is worth quite a lot in my book.

We are headed to the park tomorrow morning for a picnic with three of my other girlfriends (Kathy, Lisa, and Shaena) and their kids (Dominick, Owen, and Samantha). Erik and I will check out the pool while we are at the park. They have redone it with slides and other watery accoutrements. I am a little worried about Erik's eczema and the chlorine, but I'm willing to give it a try eventually. I have a cake baking in the oven for our picnic right now. Thank goodness for air conditioning. I started putting applesauce in everything now that Erik eats a lot of it and we have Costco-sized jugs of it lying about. I modified this recipe with applesauce so it isn't so artery clogging, and it is actually better than before.

(Special note to Dawnita: Please tell me that have apples in Idaho. If not, I will post a new potato recipe. Ha! Love you!)

Nancy's Apple-Walnut Cake

2 cups sugar
3 cups all-purpose flour
1 tsp each baking soda, cinnamon, and salt
1 cup applesauce
1/2 cup oil
3 large eggs
1 tsp vanilla extract
3 cups chopped apples (I peel mine, but they're good either way)
1 cup chopped walnuts

Preheat oven to 350. Grease (but don't flour) a 10- or 12-cup bundt pan.

Mix sugar, flour, baking soda, cinnamon, and salt in a large bowl until blended. Stir in applesauce, oil, eggs, and vanilla, then apples and nuts.

Bake 1 hour, or until a wooden pick inserted in cake comes out clean. Cool 10 minutes on a wire rack before inverting on rack to cool completely. Good served with sweetened whipped cream.

Wednesday, July 26, 2006

Bits N Pieces

There is nothing earth-shattering to report today. It was an enjoyable and productive day, plain and simple. I got a few things done around the house with Erik in tow this morning. I completed a load of laundry, scrubbed the shower, made some coleslaw (I gave Erik a break from the dreaded food processor and shredded the carrots with my vegetable peeler instead), and printed out work to be delivered. We read a couple truck books before Erik went down for his nap, and I worked a little bit before Bev came for Erik's home session. Bev brought over a ball that made a very loud noise when it rolled to try to further desensitize Erik to sound. He is still terrified, but curiosity now overrides fear in most cases (except for the food processor). Erik tolerated it with a little bit of shaking and backing up but no tears. Did I mention he can BACK UP now? There are so many things he is doing now that I cannot list them all.

My mother came to pick Erik up after his session, and I made the rounds at the medical center to pick up and deliver work before heading home to work some more. My parents were out and about, so they dropped Erik off around 5:00. I had just finished everything and was enjoying a nice glass of red wine with my feet up for once. Brian arrived shortly thereafter bringing gifts of raw meat and Ben & Jerry's Cherry Garcia (what a guy), and I assumed my role as reigning BBQ queen, perfecting my burger-grilling skills. Erik ate his Gerber #3 spaghetti from a jar (first ingredient: carrots), turning his nose up at even the french fries we were eating. How can you not like potatoes?

There are a couple good forest fires flaming away here, and I was hoping to get a nice shot of a blood-red sunset behind our mountain backdrop; but the wind is sending the smoke and resultant pretty sunsets up north instead. I snapped this photo of Gracie and Erik instead playing in our bathroom this afternoon. Gracie insists on drinking out of the faucet in there at all hours of day and night. She is a bit on the rotund side and occasionally finds herself trapped like a beast in the La Brea Tar Pits (still not as hilarious as when she gets trapped between the wooden bars on the banister). Erik knows Gracie weighs nearly as much as he does and doesn't touch her but is fascinated by her and smiles at her all of the time. It is funny but sort of sad, as facial expressions are generally kind of lost on a cat. Notice the Fisher Price sponsored debris/toy field at the bottom of the tub. Thankfully, I didn't find my cell phone under the cat's bottom this time.

Tuesday, July 25, 2006

Angina Pectoris

On Monday I received a card in the mail from one of the wonderful new friends I have made through our experience with Erik. It was a complete surprise, and I found myself standing speechless in the middle of my kitchen, holding it in my hands with pure happiness washing over me like a warm ocean wave and tears trailing down my cheeks. If I look back on the past four months, I would estimate that the months of April and May were filled with nothing but gut-wrenching despair for me. I was simply not capable of feeling anything but pain as my brain absorbed what had silently occurred to my child genetically during my pregnancy. I remember sitting down at our little kitchen table with my dinner plate and feeling pathetic because I was not able to cease crying long enough to even take a bite of food. Thankfully, I was brave enough to order the Fulfilling Dreams handbook from WSA and read that it was normal to "feel like a black sack has been pulled over your head" after receiving the shocking news of this diagnosis. It was strange to read that this compellingly attractive desire to lie down and never get up was perfectly normal and even expected for parents like us. In those days not long ago, when I did finally sleep, I would dream Erik was smiling, walking, or talking, only to awaken to find that they were only cruel apparitions that seemed to be manufactured for the sole purpose of self-torture. During the day, I felt I was immersed in a living, waking nightmare with no end in sight. These days, my nightmares have shifted to my sleeping hours once again. They are terrible, but they are only nightmares. Sometimes they are bad enough I have to get up, go into the bathroom, and sit on the edge of the tub with the cool tile under my feet to shock me back into my now much less horrible reality. My heart now swells with happiness on a regular basis when I am awake, and my capacity for feeling emotion seems more acute than ever. Yesterday was a day full of joyful moments. For example, I drove Erik home from his grandparents' house, and when I turned to check on him in the back seat while we were detained at a stoplight, he gave me one of his million-dollar smiles that made me laugh out loud once again. It is probably not socially acceptable to announce that your own child gets cuter every day, but he honestly does! On top of everything, the card from my new friend was waiting for me when we arrived home. At this point, there are so many emotions running rampant in me that I sometimes feel they are overloading my circuitry. Is it humanly possible to feel jump-up-and-down joy and excruciating heartache cram-packed in the very same moment? I have read about other countries and cultures labeling such dichotomous emotions and feelings with words that have no equivalent in the English language, and I wonder if this particular feeling of mine has been given a name somewhere in the world. In all of my life, I have never felt anything remotely like this. There are many multifaceted emotions in me that have no name, and I am feeling several of them at once in a bittersweet mixture that pools in the core of me. My chest actually physically ached last night for an hour or two every time I thought of all that has happened in the past few months. It was throbbing heartache combined with pure elation, and I felt like I was going to spontaneously combust. These days I feel utterly cursed yet blessed beyond measure at the same time. It is the sensation of breaking out in goose bumps while singing the "Star-Spangled Banner" at a football game and yet having a grief-heavy, crisply folded triangle of American flag from atop a coffin handed to me rolled into one feeling. Can you feel something horrible and wonderful at the same time? It is now possible for me, and I am actually grateful for this part of the human experience. Without the depth of the agony I have experienced, I would never have known the dizzying heights of the joy I feel at times. My senses now seem razor sharp for the first time, and I have a newfound capacity for enjoying life like never before. I have never felt so absolutely alive.

Monday, July 24, 2006

The Good Life

Erik and I had a full day yesterday. Brian went to work, and we headed out for some early shopping before it got too hot or close to nap time. I was determined to find some wooden puzzles for Erik. He seemed to really enjoy the ones that Bev brought over for his therapy session. Since Target didn't have them, we ended up going to Barnes and Noble and then to Wild Oats, where I finally found ones featuring farm animals and vehicles. At the bookstore, I ran into a nurse I used to work with at the clinic. For some reason, I automatically gave her a giant hug, even though I was never close friends with her. She asked me if my life was good, and I told her that it was. With all that is going on right now, it felt good to answer such a refreshingly simple question and feel good about it. I do have a wonderful life. I am so very grateful for it, although it is proving to be a much more difficult one than I ever imagined it would be. It was also really nice seeing a little piece of my old world, which I really miss sometimes. Erik was his usual, charming self. Before we went our separate ways, this girl put her arm around me and said it was good to see me. I wonder sometimes if Erik's presence in my life is already dissolving my shyness and opening me up to other people. I am so brave out in the world when Erik is with me. Saturday in the grocery store I approached a girl from my high school I didn't know very well and introduced myself! This is usually completely out of my comfort zone. I had seen an article in the paper about her working with special needs kids at her church and decided I wanted to talk to her. She even asked me to lunch! In any event, yesterday Erik and I shopped for close to two hours, and he didn't issue a single complaint the entire duration of our trip, despite the intensifying heat. I offered him some string cheese while we drove around, and he gave me such a pleasant smile that I couldn't help but giggle. He couldn't have looked more content. Later on in the day after a good nap, Brian met us at Dominick's house to barbecue. Dominick, Brandon, and Erik all played together in the back yard, and we had a wonderful dinner of hamburgers and fresh garden salad together. I had the opportunity to read books to all three boys. Erik didn't shed one tear during our visit. I believe this is due to a combination of the kids maturing and becoming a little more quiet and Erik desensitizing to normal noises. It is nice not having to comfort a shaking, upset little boy in the midst of kids having a good time without him. Did I get a good photo of the three of them together? Heck, no. It was kind of like trying to get a photo of Superman and Clark Kent at the same time.

Sunday, July 23, 2006

Good Company

Yesterday morning my friend Becky and her son Brandon came to visit us. Becky, her husband Michael, and Brandon live in Littleton, Colorado now but come back to town every summer. Kathy, Becky, and I were all in marching band and a lot of classes together throughout the years. All three of us were also pregnant at the same time with our kids. Brandon is only three weeks older than Erik. Erik really seemed to enjoy having Brandon around. The weather people here predicted it would be in the triple digits yesterday, so we went outside early to hit the swing set. Brian spent most of the day atop a tractor we rented with the neighbors and mowed down our crack house crop of noxious weeds so we aren't the scourge of the neighborhood any longer or a fire hazard. After Becky and Brandon left, Erik and I made a run to check on Kathy's cat (they are camping) and then later to the grocery store. I made a cool crab salad, and we had a pleasant dinner together. I told Brian how the morning went and that Erik did great with Brandon. Brandon could indeed do a lot of things Erik couldn't, but they didn't seem horribly different to me. I explained that I was a little jealous Brandon could point to his elbow and other body parts when asked. I then turned to Erik in his high chair and asked, "Erik, where's your nose?" I'm not sure why I did this. I suppose I like to torture myself. However, to my surprise, Erik promptly reached up and felt around for his nose. I almost fell over. Of course, I had to ask him to do it a couple more times to make sure I was not dreaming. I wasn't! So much for feeling sorry for myself! Erik has not ceased surprising me this weekend and continues his surge in language and activity.

Today Kathy and her family get back from a large family camping trip at one of the lakes, and all six of us adults and three kids will probably have dinner together. I am really looking forward to getting some pictures of the boys together. I took some yesterday, but Erik looks too slack-jawed and borderline comatose in them (it was nap time), so I will try again.

Friday, July 21, 2006

Skooby Talk

Recent conversation between Nancy and Erik --

Nancy (holding up hair brush): Erik, what's this?

Erik: Shoe.

Nancy: No, it's a brush. Can you say brush?

Erik: Brush.

Nancy: YAY! Good job, Erik! Can you say that again for mama?

Erik: Shoe.

At dining room table last night --

Nancy (singing alphabet song): Now I know my ABCs! Next time won't you sing with --


(sound of Nancy and Brian fainting and hitting the floor)

It is impossible to adequately describe how Erik's vocabulary and verbal skills have exploded in just the last one to two weeks. He will now press his palm to yours up in the air and say, "high five!" He has started calling his grandfather "Boppa." He sings fuzzy but completely audible segments of the alphabet song as we sing it (last night was "T-U-V"). He is running up to every small appliance, light fixture, and candle and telling me to turn them "ON!" I am absolutely flabbergasted at the rate of speed he is honing his language. It is quite obvious he can memorize anything. There are so many words that made the cut this week that I can't list them all. It is wonderful to be able to better communicate with my son. Maybe he will be potty trained by age 4 after all! His sense of humor is sharpening, too. There is nothing like leaning down into my baby's crib to whisper "Husssssh" and getting a slowly widening smile and tiny "Hussssh" back from him before he looks up at me seemingly very lovingly, pauses, and then bursts out laughing. It's good to see he takes his mother seriously.

Yesterday was a group therapy day for Erik at his little school. I was determined to fight the blues on my drive home this time, but it hit me like a truck anyway despite my best efforts. I will not write about that today. What I will say is that in the process of feeling horribly depressed, I got the most wonderful e-mails from my on line support group, family, and friends just when I needed them most. By the end of the afternoon, I was laughing out loud (and doing the infamous Nancy snort) alone in my office. My prayers were answered yesterday in a big way. It was the first time I had a group therapy day turn around like that so far. I am hopeful I will have more days like that.

I offer a heartfelt apology to Dawnita, my wonderful sister-in-law, who yesterday informed me that there is no "jerk seasoning" on grocery store shelves anywhere in Idaho (see previous taco recipe). Apparently, unearthing the Holy Grail is much more likely than finding McCormick gourmet seasoning in that part of the country. I was under the impression the days of sailors bringing spices to America around the horn of Africa were over, but this is apparently not the case in Idaho. Let me know if you don't find it, and I'll send you some! Thanks for making me smile, girl!

More good news: This week Erik's urine calcium came back NORMAL (Note to self: Enthusiastically screaming "YAY!" like a winner on the Price is Right in response to test results is highly alarming to medical staff).

Wednesday, July 19, 2006

Apples and Oranges

This week I finally got Erik’s pediatric urine bag taped on him to collect a sample for a calcium level. I fed him his usual farmhand-sized breakfast and gave him glass after glass of water. After 45 minutes to an hour, I had only an embarrassingly meager sample. However, I decided we had enough fun for one morning and put the kibosh on the whole delightful process so Erik could retain one scrap of his dignity. I loaded Erik in the Jeep and headed to the pediatric office to turn in our little container. While I waited at the front desk in the lobby, I noticed a little girl very gracefully straddle a large toy car and use her chubby but obviously strong legs to propel herself forward across the waiting room with ease. She stopped upon noticing a stuffed toy nearby, bent delicately at the waist to pluck it from the floor, and easily returned to an upright position. I felt myself smile, profoundly amazed by her excellent motor skills until I slowly realized that this little person, probably well under a year old, was only doing what kids her age normally do. My son, who is likely twice her age, can’t begin to do what she did. Since I have not been in the presence of children much in my life, I never knew what “normal” was to begin with. This is rapidly becoming both a blessing and a curse in my case. I don’t have another child to compare Erik to, and there aren't other kids around me most of the time, so I don’t ruminate on Erik’s differences every day. Dominick is just two months older, and I have become absolutely blind to Erik and Dominick's differences over time. Being around Dominick has never really bothered me at all, partly because Erik and Dominick have always seemed like apples and oranges to me, except for a couple of occasions before our diagnosis. Perhaps this stems from the fact I have reassured myself for so long any differences they have are due to their small difference in age. It’s a defense mechanism, I suppose, which has allowed me to enjoy being around Dominick. I am also completely relaxed around him, as his parents have made it quite clear it is safe and acceptable to feel any way I want to, good or bad, in their home. I haven’t really thought about it much until now, but I am thankful for that. Most importantly, I got to know Dominick before Erik was born and we were immersed in the frightening, gloomy world of diagnoses, feeding problems, medication, echocardiograms, early intervention, and laboratory monitoring. I have to confess that being around infants still bothers me immensely, as their differences somehow seem the most painful of all to me, but I am adjusting to the wonderful, new babies in my life quickly without too much trouble. Once I get to know them and the shock of seeing how animated they are wears off, the differences seem to fade to me. You won’t find me running a day care center anytime soon, however (if you know me at all, you know that was never in the cards for me anyway). I am also completely unable to make a remotely accurate estimation of how old children are because I never got the feel for any sense of normal childhood growth and development. My knowledge is based solely on what is normal for Erik. That is perfectly acceptable most of the time, but to say that it is a shock to open my eyes and notice seemingly advanced children all around me would be an understatement. A pediatric waiting room sometimes seems like a miniaturized Mensa meeting to me, when in reality these kids are simply normal. It is impossible not to notice that they are gigantic and have the desire and ability to do so many things without trembling or a lack of fine and gross motor control. In our new world, most of the young members of Erik’s social circle generally have all kinds of serious problems, except for Dominick and his fairly newborn friends. I could take him to a regular play group, but with our twice a week therapy and my work, I’m tapped out on time and burned out in terms of energy. I just want to be home and save some time for a nice afternoon with Dominick. I admit that I sometimes detest seeing the world through this new perspective of mine, but I have a lifetime of it ahead of me. There is simply no going back to the old way of seeing things, as difficult as that is to accept. Interestingly, I concluded months ago that if Erik and I lived in a little log cabin in the woods with very little human contact, I would never think twice about his abilities or his syndrome. However, in the real world, I am constantly being reminded that we are playing a different ball game. I confess that on days I am feeling completely defeated, I still fantasize about being in that little imaginary cabin with its red and white gingham curtains pulled closed. It's times like these I put on Erik’s favorite music, roll around with him on the floor in a lively round of WWE Baby Smackdown, and enjoy what is normal to us for a while before the rest of the world comes knocking on the door again to remind us we are different.

Monday, July 17, 2006


It has been a long day. Despite a nasty flare of shin splints from my overenthusiastic march up the hill this weekend, I managed to get my aching body up on the treadmill while I watched the news this morning. I was beyond disappointed to miss the Space Shuttle launch a few days ago after two cancelations due to thunderstorms but was delighted to discover I was up in time to see it land today. I whispered my own familiar prayer for this particular occasion as it pierced through the clouds at 200 miles per hour and began its descent into a surprisingly graceful, perfect landing. I always wonder how the men and women inside feel upon coming home. I always foster an odd sense of excitement when I see these strangers return. I suppose they are heroes to the little girl in me.

I remember my parents getting me and my little brother out of our beds in the pitch black hours of early morning one day in 1981 to witness the Space Shuttle Columbia take off for the first time on television. I was only 10. It rumbled into space after an eerie-sounding, faceless voice counted down. At the time, I did not grasp how significant that event was, although I now cherish that memory very much. When I was 16, I was sitting in my English class in utter agony with overtightened braces when another television was suddenly wheeled in on a creaky AV cart, repeatedly playing the sickening, fiery crash of the Space Shuttle Challenger. A school staff member announced the tragedy over the loudspeaker. That was another day I will never forget. Over the years, my father gathered our family on the back deck more than once to see if we could spot orbiting shuttles passing overhead, and we did indeed see them glistening as they made their way across the black, star-studded expanse of desert sky, right on schedule. Years later, Brian and I were on our honeymoon cruise in 2001 preparing to board a small boat headed to Catalina Island one dreary morning when the Shuttle Endeavour flew over and broke the sound barrier, creating an earth-shaking sonic boom. My heart pounded, and I smiled broadly up into the fog and clouds, announcing to the strangers around me, “There it goes.” I knew exactly what that sound was above the thick layer of coastal weather. One morning two years into our marriage, I grimly announced to my sleeping husband that I had just heard the news Challenger had been “lost.” We turned on the television and watched in horror as they reported the discovery of debris and human remains scattered over miles of Texas terrain. Part of my childhood was now undeniably truly only a memory. I now watch every takeoff and landing when possible, which is easier these days now that this town provides more than two grainy television channels. I am predictably afflicted with chills, goosebumps, and watering eyes each time as I watch that magnificent, macho machine thrust upward on a bulging column of smoke, gas, and vapor. I watch in silent awe until there is no further news coverage offered, well after the crowds at the launch site are headed back to their cars and the shuttle is no longer visible. I’m simply addicted. This piece of history has seemingly always been entwined in the background of my life, no matter where I have been or what I have been doing. I consider my interest in a lot of things in my life such as this a precious gift from my parents, who took the time to drag two sleepy, confused kids out of their beds to create memories they likely wondered would be appreciated in the future.

I hope I will get to drag Erik out of bed someday at some ungodly hour of morning to cuddle with his old mom on the couch and watch this awesome spectacle, our sleepy faces aglow with the flickering light of our television. Maybe he would like that as much as I did as a kid. I will at least give him the opportunity to find out. I have to admit that I am really looking forward to that.

Sunday, July 16, 2006

Beachy Keen

Look at the gut on my kid! Yesterday was a lovely day. I decided to fill up Erik's little wading pool for the first time. I placed it on the front porch because I like to keep the sun off his skin as much as possible (vitamin D/calcium issue). Looking up while I was sitting out there with the hose, I saw the familiar honeycomb of a wasps' nest above me with four evil-looking tenants clinging to it. I asked Brian to annihilate them, but we were fresh out of wasp spray. I got my workout clothes on and headed to the store to buy some, and then I drove over to the butte for a morning workout. On the trail I met all sorts of people in various stages of personal torture, most of which were uncharacteristically friendly for this region and actually said hello. There are always a couple doughier tourist-types (I call them cone-lickers) who look like they are going to require CPR momentarily and ask me how far it is to the top. When I reached the summit, I enjoyed the view briefly before descending again. There was not one cloud in the sky, and the mountains were still dappled with gleaming patches of snow. Gorgeous. I made my way back down to the Jeep wearing a thin sheen of well-earned sweat and headed back home. A friend of mine came over to visit, and we caught up on the world and the topic of having babies. She is three months pregnant and doing great. I delayed Erik's nap so she could get to know him, since the last time she saw him he was quite small and swaddled motionless on my lap. Erik entertained us both and charmed her thoroughly with his smiles. After she left and Erik completed his afternoon nap, I got him into his swimming trunks, and we headed out to the porch to try out the pool. Erik absolutely loved it. It was a bit too chilly to sit down in it (his eyes got as big as saucers when we tried), despite the addition of some hot water, but he enjoyed splashing in it and keeping cool in the stagnant, 85-degree afternoon air. A new skill he mastered playing was plunging a cup into the water and then bringing it up to dump out. It seems so simple, yet I have not been successful in teaching him this in the bathtub. He gets it now! He chattered constantly while we relaxed and played. Brian got home from work, and Erik's face turned completely scarlet with sobbing when we decided to go back in the house. I fixed the to-die-for shrimp tacos we are now addicted to, and we had a nice dinner together (Erik ate Gerber spaghetti from a jar). Erik went down for the evening without the waking up screaming thing, and we all slept well. At least I slept well until 5:22 a.m., when Gracie kitty decided I had slept enough and started screaming at me to get up and turn the faucet on in the bathtub for her (sigh).

In other news, Brian and my mom have been working with Erik on counting to three. The first time he did it was Friday night. I was in my office working when Brian and Erik came up to see me, and Brian matter of factly informed me that our son could count. After seeing the look of disbelief on my face, Brian and Erik demonstrated it for me. Brian said, "ONE," and I heard a tiny "TWO" clear as day. I only looked more confused and thought Brian had learned to throw his voice. Amazing. It was so dang adorable. He can also say "three," but it's a little fuzzier. Color me impressed.

Beach Shack Shrimp Tacos

8 tortillas (soft taco size)
24 peeled raw jumbo shrimp (about 1 lb)
1 Tbsp Caribbean jerk seasoning
2 cups thinly shredded green cabbage
1 ripe mango, peeled and diced
1/4 cup each sliced red onion and chopped cilantro
2 Tbsp light mayonnaise
1 Tbsp rice-wine vinegar

Coat a large nonstick skillet with nonstick spray; heat over medium heat. Add tortillas in a single layer 2 or 3 at a time and cook over medium-high heat 2 minutes, or until light golden in spots and softened. Remove to a plate and cover with foil to keep tortillas warm and pliable.

Sprinkle shrimp with jerk seasoning. Coat same skillet with nonstick spray; heat over medium heat. Add shrimp; saute 3 minutes or until cooked through. Remove to a plate.

Toss remaining taco ingredients in a bowl until blended.

Top each tortilla with about 1/2 cup cabbage mixture and 3 shrimp. Fold in half to eat.

Saturday, July 15, 2006


This is an interesting article that might provide a little insight as to what we are expecting in terms of future challenges. Erik will probably seem perfectly fine to the people around him most of the time. There is absolutely no doubt he is going to be a delightful person, but my desire is to bring a little understanding of what WS means to the handful of people who dimiss or minimize what we are going through by stating that Erik is perfectly "fine." I'm just going to come out and say it. The truth is that is he is NOT just fine. My son's diagnosis was absolutely devastating to both of our families. I had to actually mourn the death of the man I thought my son would be starting from the very first moment the ultrasound technician told us we were having a boy. It was as painful as any death in the family would have been. I now stare at children's clothing in stores emblazoned with "Football Star" and "Future President," knowing that my son will most likely never be these things. I am having to face the possibilities that our son will never drive, live on his own, or marry. We may never be grandparents because of this diagnosis. He may never even learn to tie his shoes. We do not focus solely on Erik's diagnosis, but it is important to us to acknowledge it because it affects how he sees the world. We generally do not treat him any differently than we would any other child. I am just asking for some quiet respect. Take a look around at some of the comments other mothers have left to read on this blog and take some understanding of what Williams syndrome means to our lives with you. Saying the words "birth defect," "disability," and "mental retardation" is not comfortable, but it is the reality we face daily. These words are hard to say, but they are simply words used by professionals to determine how best to help kids like Erik. Brian and I will not let these words put limits on what Erik is able to accomplish. He is ultimately the only one who has the power to determine what he is capable of, and he will show us in good time. However, please understand when a parent hears these words, all of their hopes and expectations change dramatically. All we can do is love our son, give him the tools to succeed in ways never thought possible, and hope to bring some understanding to those around us to make his journey easier.

From: University of Delaware (1998)
Williams Syndrome: New UD Study May Shed Light On Rare Genetic Disorder-And Normal Development

Children with Williams Syndrome are delightful and engaging, with elfin-like features and often-extraordinary verbal skills but severe spatial deficits, and a new University of Delaware study may reveal the cognitive impacts of the rare genetic disorder.

"Understanding the details of the cognitive profile in this syndrome will likely be extremely complex," says Barbara Landau, a professor of psychology and director of UD's Language and Cognition Laboratory. "But ultimately, it will shed light on how brain and cognitive development become compromised by small genetic defects. This, in turn, will enhance our understanding of how normal development occurs."

The musical and verbal skills of children with Williams Syndrome are extraordinary. But when they see a circle that is half red and half green, they are at a loss to replicate it. They may correctly select a red crayon and a green one, but their drawings will not even remotely resemble the original two-tone circle.

A recent report on "60 Minutes" described a similar grown-up who can sing nearly 2,000 songs memorized in more than 20 foreign languages, yet is unable to solve simple mathematical problems.

Such are the mystifying intellectual discrepancies of those diagnosed with Williams Syndrome. First recognized as a separate syndrome in 1961, it has only been in the last 30 years that persons with Williams have been recognized as a group with a unique cognitive profile.

In particular, individuals with Williams Syndrome have very large discrepancies across their cognitive abilities. One striking discrepancy is that between language and spatial skills: Their language is, in many ways, quite normal, but they show profound deficiencies in certain spatial skills. Landau, an expert in the field of spatial cognition, was intrigued by this riddle.

With her colleague James Hoffman, a professor of psychology, and her team of graduate and undergraduate researchers, Landau recently received a $59,208 grant from the National Office of the March of Dimes to study spatial language and spatial congnition in Williams Syndrome. Further funding from the National Institutes of Health and the National Science Foundation is pending, she says.

"We look at space and language and see what goes wrong," Landau explains. "We're looking at the relationship between the children's spatial abilities and language learning--how they talk about space."

It's quite possible, Landau says, "that you could carry on a conversation with a child with Williams Syndrome and not realize that anything is wrong. When they are just chatting, their normal interactions using language are very good. They are so personable, sweet and friendly--and so competent in many ways--that it often covers up the fact that they have a very uneven profile of cognitive abilities."

When tasks involving spatial relationships come into play, however, the limitations of Williams Syndrome become evident.

"When we ask the children to describe direction and motion, they have problems," Landau says. "For example, if a normal child watches a doll jump into a bowl (an animated video event), they might say, 'The doll jumped into the bowl.' But, when a Williams Syndrome child views the same event, they do not describe the event using the same complex verbs and prepositions. Instead, they might say, 'The doll went down.' This simplification may be due to faulty spatial perception (that is, they might not have perceived the event in the same way as the normal child), or it might be faulty language (that is, they might have difficulty learning rich spatial language)."

Most likely, Landau says, "it is some combination of the two. It might be hard to learn to talk about space if you have difficulty conceptualizing it."

Similarly, those with Williams Syndrome have difficulty describing the location of a dot, relative to a square. Explaining that the dot is above or below the square isn't easy for them, and they often make errors, unlike normally developing children.

And, while moving a mouse on a computer seems simple for children with Williams Syndrome, when they try to replicate block patterns on a computer screen they fail.

"This is very interesting, as it suggests that certain spatial skills (e.g. coordinating a mouse and a computer image) are intact, but that other skills (e.g. copying a pattern) are profoundly impaired," Laudau says.

"The children are very persistent and can tell you what they've done is not right, but they don't know exactly what's wrong," she added.

Another interesting contrast can be found by examining how the children search space for hidden objects. Although they are impaired when asked to copy patterns, they do not seem to become disoriented in space. When asked to find a coin hidden under one of several cups on a table, the children do so quite easily--even if they have moved from one place to another between the hiding event and the finding event.

The two activities "suggest real differences in the kinds of intellectual abilities that are compromised and the kinds that are spared," Landau says. "Obviously, not every spatial capacity shows a deficit.

"This is not just retardation, this is something unusual," Landau asserts. Landau and her research team have used some of the March of Dimes funding to purchase a special eye-tracker that records the children's eye movements as they perform spatial tasks. The tiny camera is hidden in a cap that the children wear, and this allows them to freely move their head, body and eyes. The purchase of this special piece of equipment also was supported by matching funds from UD.

The children in the study will wear the cap when trying to replicate the block patterns on the computer. Tracking their eye movements may yield some clue as to what is happening in their brains as they try and fail the simple exercises.

By understanding the nature of the spatial deficits, the researchers hope to understand what parts of language go uncompromised in Williams Syndrome. Such research could lead to a better understanding of how to educate people who have the syndrome.

Forty-five families who have children with Williams Syndrome, ages 7-14, responded to a letter Landau sent asking for volunteers. Names were provided by the Williams Syndrome Association in Connecticut.

Landau says the work is still in the preliminary stages, and will likely continue over a period of years.

Friday, July 14, 2006

Reality Check

Yesterday I drove Erik to group for the first day of his summer program. I carried him into the building and set him down so he could walk up the hall to his classroom himself. Unfortunately, I am usually in too much of a hurry to let him walk when we are out and about. It was an agonizingly slow process with the distractions and temptations of other people and offices, but we finally made it up the ramp to the entrance of the room. He seemed to quickly recognize where we were but kept a kung fu grip on my hand for a few minutes before letting himself loose. I stayed for about 20 minutes to chat with the therapists and watch Erik play. They had replaced the seeds and lentils in the recessed table with water and toys, and Erik joined a little girl with Down syndrome there. I have seen this particular girl a couple of times, and she has completely melted my blackened, atrophied heart. She is probably about 2 and has long, white-blond hair. She very easily offered me a couple of toys with an entirely disarming little smile. Erik, meanwhile, was so into spinning the water wheel that he didn't even notice anybody around him, including her, in his own little Erik-world. An older boy I have seen there before walked into the classroom with his mother. What was truly amazing was the fact that the last time I saw him, he could only crawl. It felt natural to begin clapping and cheering with the rest of the adults when I saw him. As the rest of the kids arrived, I decided it was time to leave. I approached Erik, gave him a kiss on the top of his head, and whispered goodbye. Of course, he didn't even begin to notice me or my leaving in the least, and my heart ached that old, familiar ache I have come to know so well. After my own long, slow walk down the hallway and out into the seemingly very inappropriate sunshine, I decided being alone was a terrible idea and called a friend to meet me at Red Robin for bottomless french fries and people watching before heading home to work. It was the first good idea I have come up with in some time.

After a productive afternoon, Erik came home with the excitement of the day having kept naps completely at bay. When he is tired, his already tenuous muscle control fizzles out for the most part, and he staggers wildly about the house, sometimes crashing haphazardly into doors and walls. For the past couple of weeks, we have been putting Erik down only to have him wake up an hour or so later screaming bloody murder (even at full volume, Erik is still very quiet compared to other kids). At first, I thought he was having nightmares, but it takes too much to console him for that to be truly the case. We held him last night when this happened, sang to him, and gave him a drink of water. He acts like his reflux might be bothering him or he seems to be hurting somewhere. I am anxious to get his calcium level back to see if it is normal, as a high level can cause agitation. However, after one episode, he is usually down again after letting him cry for a few minutes. I go into our bedroom, shut the door so I can no longer hear his sobbing like we used to do when he was tiny, and remind myself I did everything I could. I note the time and check on him in a few minutes. He is usually asleep by this time. As for me, I was awake at four this morning with the howling coyotes for some reason. Today Shaena is taking me out for a margarita, which I am looking forward to, and I plan on doing some very serious relaxing this weekend. If the weather is nice, I will fill up Erik's pool and spend some time with him in the yard. I think next week will be much easier on me and Erik once we get back into the swing of things.

I bought Erik the Curious George soundtrack the other day, being a huge Jack Johnson fan myself, and this song seems to sum up how I am feeling about my son these days. I highly recommend the CD. It's labeled as a "sing along," and the words are included in a nice little booklet.

Broken -- Jack Johnson
With everything ahead of us
We left everything behind
But nothing that we needed
At least not at this time
And now the feeling that I'm feeling
Well it's feeling like my life is finally mine
With nothing to go back to we just continue to drive
Without you I was broken
But I'd rather be broke down with you by my side
I didn't know what I was looking for
So I didn't know what I'd find
I didn't know what I was missing
I guess you've been just a little too kind
And if I find just what I need
I'll put a little peace in my mind
Maybe you've been looking too
Or maybe you don't even need to try
Without you I was broken
But I'd rather be broke down with you by my side
With everything in the past
Fading faster and faster until it was gone
Found out I was losing so much more than I knew all along
Because everything I've been working for
Was only worth nickels and dimes
But if I had a minute for every hour that I've wasted
I'd be rich in time, I'd be doing fine
Without you I was broken
But I'd rather be broke down with you by my side

Thursday, July 13, 2006

Show Off

Yesterday Bev, our EIP coordinator, came to the house to work with Erik for the first time in a few weeks. My mother came over, too, because we were both excited to show Erik off! Bev always comes over with a giant supply of toys and bubbles, and Erik went right for them. He spouted off almost all of his new words and gave me hugs a couple times when I asked him to. Bev worked to get him to squat and then go to standing correctly with his knees bent, which is something he has been getting better at as time goes on. He played with puzzles, a jack-in-the-box (a toy that I have always found personally quite disturbing), and a busy box. Erik mooed when he saw the cow in the busy box. Bev sometimes forgets about his wheel fetish, and I always laugh when he fixates on playing with one of her toy cars or he turns an innocent-looking, therapeutically correct toy into something that simply rolls. We look at each other, groan, and say, "Oh no. It's a wheel." He voiced a little frustration briefly when he was getting tired of squatting and arising, which is a good thing to see. We showed off the skills we have been working on using his big, red exercise ball. I put Erik on top of it and bounce him on his bottom. Actually, he pretty much bounces himself at this point. I can stretch him over the top of it on his back and stomach as well. I don't do a lot of formal physical therapy with him, but we do use the ball once a day. I returned his ankle weights, which I was having him use every morning for an hour or so to get his feet closer together when he was walking.

After therapy, I set up my chair in the front yard and watched Erik wash his rocks for a while. Our neighbor's tractor later rumbled into the driveway, and he asked if Erik wanted to watch him feed the bass in his pond. Brian took him over there to visit, and Erik really enjoyed seeing their dog. Brian said the fish feasted on fat, squirming nightcrawlers, which also piqued Erik's interest.

I have been thinking our house was haunted for weeks now. I turn off the light in Erik's room, and it is back on when I check on him. Yesterday I discovered his crib has been creeping closer to the light switch when he has been thrashing around, and he is flipping the switch back on. His new words are "off" and "on," so it all makes sense. I thought I was losing my mind.

Erik goes to his little school today for group. I will probably drop him off and leave. Maybe I'll hit the grocery store on the way home and hang out in the cleaning aisle for a while. Wish me luck.

Wednesday, July 12, 2006

Breaking News

Yesterday Erik clapped for the first time (21 months). My parents were sitting on the couch and witnessed this. He has been having a gigantic surge in language and activity over the last couple of weeks, and it is amazing. He usually likes having us all do the wave. He thrusts his hands up in the air like Rocky Balboa, and we all scream "YAAAAAAY!" He does it repeatedly sometimes, and we happily oblige him like trained monkeys. Yesterday he suddenly added clapping, much to our surprise. I have noticed his hands are coming to midline more often to accomplish a variety of things, which is developmentally very significant. We have been told to watch for that and have Erik cross each hand over to the opposite side of his body to get the halves of his brain to work together (a technique used by something called Brain Gym). Obviously, he is making progress in this area. I think half of what he does depends on his simple interest in performing these tasks. He seems much more interested and interactive these days. Four months ago he had very little interest in anything, and now he is walking, trying to talk, and amazing us all. Watching his hands come together and make that sweet sound yesterday made my heart feel like it would burst.

Tuesday, July 11, 2006


Erik has decided to get up at between 6 and 7 a.m. these days, no matter what time he finally settles down to sleep at night. I fear he will be an early riser like me. This morning he ate a good breakfast of a scrambled egg with cheese, a baby-sized bowl of Honey Nut Cheerios, and some applesauce spiked with his reflux medicine and fluoride. I am going to attempt to obtain a urine sample from him today for a calcium level; but after seeing him eat so heartily, I think it would be best to wait a couple of diapers before I put the bag on him. It is good to see him eat like a lumberjack these days, although I am hoping his diet will become more varied as time goes on. He can't live on cheese, peanut butter, and crackers forever. Can he? This morning after Erik vigorously plunged Brian's socks in the toilet and we got that mess cleaned up, Erik asked me to turn the fan in the office on. He walked right up to it and said "ON!" This may seem like a nonevent to most people, but Erik has not really learned to ask for anything yet. He just cries when he doesn't get what he wants, which is a difficult and unpleasant way to go about things, so he seems to want to learn to try another approach. His language is developing very quickly. The other day I was sitting on the couch and heard a tiny voice saying, "SHOE SHOE SHOE!" I turned around to see Erik wearing just one shoe, dangling the other one over the baby gate and then dropping it over onto the other side. He hurled my cylinder of blank CDs over the baby gate at the top of the stairs this morning. The other day he did this and almost nailed the cat. Brian thought that was pretty funny. He will also now announce when he is doing something he is not supposed to by saying "nooo nooo nooo nooo" with such a serious expression on his little face. "No" has stopped being such an upsetting word and is now becoming a fact of life. Bev, the EIP coordinator who comes over once a week, called yesterday to confirm we have a home visit tomorrow and school on Thursday. I told her I was beyond excited for her to see Erik's progress. The big changes he has made might not be as evident in a group setting, but I think he will blow her away tomorrow here at home. There goes my mouse pad down the stairs. Gotta run.

Monday, July 10, 2006


I am gradually able to visualize a new facet of my personality these days that I don't like very much. When I look at old photos of strangers or relatives I never knew, there is sometimes a distinctly weathered, jagged hardness in some of their faces. When I was younger, this was quite fascinating to me. While these faces said so much, it remained a mystery why those people sometimes didn't smile and what their stories were. Interestingly, these individuals of all ages were captured in different settings and decades: In front of a picket fence with a spouse in their shiny Sunday best, nestled in a neat row of fellow classmates, proudly holding dead game up by spiky antlers, tearing open Christmas presents with laughing siblings, or lounging in a back yard with a gigantic Midwestern family. Lately I have seen that identical hardness in my own face in our own photos, even behind my smile. I was absolutely horrified the first time I saw it about a year ago, but its presence was undeniable. There seemed to be a ghost in the photo, and I have seen it many times since. Even worse, I realize it has begun to permeate who I am. When I go back over the words I have spoken at the end of the day, I am mortified when I remember how negative and bitter I have been on some days. I have had a lot of experiences in my lifetime so far, and the dark, bubbling energy from them seems to pool in me, no matter how hard I try to find a way to drain it away and not feel it anymore. Believe me, I have tried. A lot of days I feel poisoned by it. It is on those days that I tend to joke around more. When I am feeling anything, good or bad, I tend to turn to humor. For example, I was lying on the operating room table having Erik emergently extracted from me almost two years ago making Seinfeld references (I called the giant, blood-sucking hose "Mr. Thirsty") when the nurse standing above me suddenly snapped at me and told me I needed to "get serious." What she didn't see is how deadly serious I was -- how terrified I was that my distressed baby had passed away or how helpless I felt being practically forcibly strapped down to a table and paralyzed with my insides laid open for all to see. There was nothing I could do but lie there motionless and trust that Erik was in good hands, so I am not sure what she expected me to do. I was also slipping into shock physically, which didn't help me behave any more appropriately. There was nothing humorous about the situation at all. Laughing is my best defense mechanism, and a lot of people probably think I'm crackers, as I could be on fire and still emit one-liners one after the other. Pain mixed with humor sometimes ends up sounding hard and cruel when it isn't meant to be. I am painfully aware that I'm a little damaged and have been for a long time. There are simply days I don't do as well as I had hoped I would. I was under the impression that I was covering up my pain with this defense mechanism; but now that I see my face in photos and listen to myself, I can see it isn't working at all like I had hoped. I look and sound exhausted, scared, and hard. I suppose some might say I need to run to the nearest head shrink or sign up for anger management classes before I start keying random cars in parking lots, shooting fluffy animals from my porch for sport, or loosening the tops of salt shakers all over town, but counselors have never done much more than make me worse. My first experience with a counselor was in high school after a friend of mine was killed in a horrible car accident. Her heart was in the right place, but I don't know how much she actually did in terms of helping me. In college, simple grief had been replaced by rage and the desire to destroy myself as quickly as possible, and counselors only gave me pills that made me vomit or feel like a brainless zombie. At age 18, I ended up being placed in group therapy with some older professional crazies, including fecophiliacs and the type of people who proudly collected 20 years of snack food wrappers, which didn't do much but make me realize my psychiatrist thought I was truly crazy. Now that I'm an adult, most counselors simply seem ridiculous to me with their soft voices, intense stares, colored light therapies, special diets, and bookshelves housing presumptuous texts by Jung and Rorschach pressed obscenely up against paperbacks by Dr. Phil McGraw. Don't get me wrong -- I have gleaned some useful information from these well-meaning professionals, but for the most part, I feel they have been a colossal waste of my time. As you can see from my writings, the last thing I need is to learn how to better analyze myself or become any more introspective. I know myself pretty damn well at this point and simply wish I could turn my brain off sometimes. It's not possible for me. I know perfectly well why I do what I do. My own theory is that if a person thinks he's crazy, he's probably fine. It's the people who think they're fine that frighten me. Ironically, in junior high I was voted "Most Likely to Become a Counselor."

It is too late to do much about the haunting apparition in my photographs at this point, no matter how funny I try to be, as the last cruel wound has pushed me firmly into a world where there is very little innocence left. I accept that. I can only do the best I can, and each day there is a very fresh, innocent face smiling up at me from a crib that makes me want to try even harder to be a better mother, wife, friend, daughter, and human being. I am surviving through what I thought I could not bear four months ago. Years from now when we are only dust and memories and our photo albums are opened, I only hope that the people surrounding me in those pictures knew how very much I loved them and how grateful I was that they dared to love me for who I was. That's no joke.

Sunday, July 09, 2006

Great Grandparents

The first photo is my parents with Erik yesterday. Erik wears his heart on his sleeve when it comes to my folks. For example, when I pulled our Jeep into their driveway Friday to drop Erik off, he took a good look around, saw where we were, giggled, and would have chewed his way out of his car seat restraints to get to grandma and grandpa if I hadn't been quick in getting him out of the car.

The second photo is of Erik, my grandmother, and her dog Katy. My grandmother came to town specifically to spend some time with Erik this weekend, and I think Erik really enjoyed her and everybody being together. As for the dog, he loved her, too. He is very gentle with animals, unlike most toddlers, and runs his hands very carefully over dogs' fur, almost like he is blind and he is reading Braille. My mom baked her famous cinnamon rolls with gooey frosting, and Erik was very sticky and happy. We had a lazy day after everybody left. It was about 90 degrees here, which is just too hot for me to enjoy much outside. We had some leftover food from the party Friday night, and Erik and I read through almost all of his book collection. He now brings me books regularly to read, and I am hoping that he will have the ability to read well in the future. There doesn't seem to be a consistent consensus on what to expect regarding reading ability in Williams from what I have studied, so I will have to wait and see. He is looking good so far, at least in the interest department. He certainly is picking up more words as far as receptive language and is suddenly able to pronounce the words "shoe" and "up" correctly (the "uh" and "ashoo" are being replaced). I am a proud mama. I am working on 3-syllable words like "applesauce," and he is at least making 3 sounds when he tries to repeat what I say. This is new as well. I am thinking he will surprise us all by talking earlier than we expected. I had to store the lids to my Tupperware in a higher cupboard, as they are often strewn about the house now, and there is quite a collection of items lying at the bottom of our deep Jacuzzi tub each morning that Erik has thrown in up over the side (socks, doorstops, toys, toilet paper rolls, blankies...). If I ever hear, "Honey, where's my ______ (fill in blank with appropriate missing item)?" I check the bottom of the tub first. I am not complaining! I never thought I would see the day that he would have the ability or interest in opening cupboards or trashing the house like the rock star he is.

After I put Erik to bed, I watched deliciously trashy movies and Law & Order reruns. Brian took off for horse racing in Prineville with friends, and Gracie and I enjoyed a quiet evening. I wrote much more about what I was thinking all day, but it seems freakishly out of place here, so I will save it for the next entry. Looking into what is going on in my brain is kind of a frightening concept, even for me.

Saturday, July 08, 2006


Happy 30th birthday, Cory! Thanks to Lisa for inviting us over for the surprise party (nice job) and the delicious appetizers and dinner. As you can see, Erik and Brian also enjoyed themselves immensely. I wish you could see more of Erik's "yay face" in this photo. I always enjoy quality time with my book club friends and their families. I finished up my work way early this morning and am off to pick up the house before my mom, dad, and grandmother to arrive with cinnamon rolls to spend some time with Erik, who is still in bed. Actually, both boys are still slumbering away. Oh to be able to sleep like that! Next week Erik has a home visit from Bev from EIP on Wednesday and then goes back to his little school on Thursdays for 4 weeks. Back to the grind! I can't wait until they see how far he has come in a few weeks. In the meantime, we are off to having a relaxing weekend.

Friday, July 07, 2006


I am still trying to adjust to the idea that there are children all over the world that look like my son. What a bizarre concept! I opened photos of a new friend's son on line this morning and was shocked to see such similarities in a sweet face I had never seen before in another country. Of course, he was GORGEOUS to me! One of Erik's smiles is a wide open one I have only seen on WS children. When he gives me that smile, I simply melt. It is my favorite smile he has. I have never seen such an expression of pure joy. I am quite familiar with the features of Down syndrome but had no idea there were other syndromes that caused children to look so similar to each other before we started this journey. Yes, Williams tends to be more subtle, but the features have always seemed quite obvious to me. I have read that historically Williams syndrome has been called "elfin facies syndrome" because of these classically "cute" features. When I diagnosed Erik myself, I had to move his photo from the wall over my desk because I could see Williams so clearly that it was upsetting. Imagine seeing your child's face on an unrelated child for a moment. It was a very eerie feeling at first, and yet it is now a fantastic, beautiful thing to me. I watched a program on Treacher-Collins syndrome (chromosome #5) last weekend and was moved by their own convention, which they call a "reunion." I was afraid that watching this show would depress me completely (my husband even asked if I really wanted to watch it), but I found it entirely enlightening and inspiring. These kids can see themselves in the other faces around them, and it seems to give them an instant sense of belonging and peace they have nowhere else. When Erik is old enough to appreciate going to the WSA convention, I think I will be ready to be there to help give him that gift. I am now myself feeling drawn to these familiar faces. Admittedly, I am still very fearful of this experience, but maybe my fear simply stems from being vulnerable to the intensity of being there.

Yesterday I heard a song on the radio and now have it in my collection. It was one of those moments in which I wondered if God was trying to tell me something. I imagine it helped me realize the diagnosis of Williams is not the end of the world, even though I wish I could change things. I am now just beginning to be able to see that Erik's future, although there are bound to be limitations, is unwritten. If I could share a copy of this song with you, I would. I would also instruct you to kick back and blast it until the neighbors complain. I think it says a lot about both WS parents and our kids. Erik and I blasted it in the middle of a small snarl of traffic yesterday on the way to grandma and grandpa's yesterday afternoon. It also struck me because Erik discovered rain this week and was amazed by it.

by Natasha Bedingfield

I am unwritten,
Can't read my mind
I'm undefined
I'm just beginning
The pen's in my hand
Ending unplanned

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words
That you could not find
Reaching for something in the distance
So close you can almost taste it
Release your inhibitions

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

I break tradition
Sometimes my tries
Are outside the lines
We've been conditioned
To not make mistakes
But I can't live that way

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words
That you could not find
Reaching for something in the distance
So close you can almost taste it
Release your inhibitions

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words
That you could not find
Reaching for something in the distance
So close you can almost taste it
Release your inhibitions

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
drench yourself in words unspoken
Live you life with arms wide open
Today is where your book begins

The rest is still unwritten
The rest is still unwritten
The rest is still unwritten

Wednesday, July 05, 2006

Independence Day

I hit the ground running on Independence Day and got a workout in before getting breakfast going for company. Andy, Shaena, Baby Samantha, Kathy, and Dominick came over to have breakfast with us. Baby Samantha packed her pink, ruffle-bottomed bikini for a day at the lake, and they headed out after our visit while the rest of us braved the traffic downtown and sought out the pet parade. We stopped in at the museum for a brief visit with my parents and then headed into the chaos of the celebration to catch some of the parade, a tradition in this town since the 1930s. At times I wonder if there are more people in the parade than there are watching it. Hundreds of people bring their pets to show off (except cats, which were excluded this year) or just decorate their bikes, pedal around, and wave. There were little aquariums in red wagons with turtles and such sloshing helplessly in them, and I saw more than one hamster in some impressive multicolored tangles of Habitrail tubes. There was, of course, the yearly favorite, Daisy Mae, the poor little chihuahua in a harness and hot pink goggles suspended in midair by many giant red, white, and blue helium balloons (apparently, PETA has not caught wind of our small-town celebration yet). Erik had a swollen upper lip yesterday for some reason, which puffed up even more in the heat. Since he has inherited my Scandinavian constitution, we both turned red and blotchy, slowly wilting in the heat together. However, I think he enjoyed watching the parade and just hanging out with the Domster. Erik liked the obnoxious battery-powered toy cars driven about by some cute, obviously very spoiled, precociously road-raging tykes the best. Next year we are considering putting the boys in a wagon and joining the parade. After the festivities we all headed home. Brian took Erik out to play with the rocks and pull weeds, and I baked a cheesecake. I kept Erik up long enough in the evening so my parents could see him before I put him to bed, and then we sat out on the porch to watch the fireworks being shot off the butte in town. Erik went down very well and didn’t seem to be bothered by the noise outside. The fireworks started off like a bad Great White concert with some fluorescent orange, propane-fueled mushroom clouds blooming atop the top of the hill, which were indeed impressive but looked a bit too bomb-like for my tastes, and then some of the most gorgeous fireworks I have seen here in town over the years. My favorites are the bright pink hearts. How do they do that? After the show we all slept pretty well, but Erik got up at 6:00 this morning, despite his late bedtime. I am currently trying to refine the logistics of processing work, dropping off work, Erik's nap, getting my hair colored, dropping off Erik, and working today. I want the weekend back! I am quite pleased it is already Wednesday, however. On Friday Erik’s great-grandmother is coming to town to see Erik. I’m sure he will like that!

Sunday, July 02, 2006


I consider myself extremely lucky, as I have met some exceptional people on line this year. We exchange e-mails regularly. We are all from different backgrounds but feel like family, as we have all have at least one thing in common -- we have children with Williams syndrome. Do we sit around and focus only on the syndrome itself? I don't think we do, although it is unavoidable to observe it affecting our kids' personalities and actions in some way every single day. I explained how it feels, in my experience, to have a child with Williams in my first entry. I described it as a massive brick in my brain that is with me constantly. It is heavy, and I feel it with me always, even if I am not consciously thinking about it. It flavors many of my thoughts with fear and anxiety. Many of my nightmares are now manufactured within it. It will never go away. However, I accept that, as there is nothing else I can do. With time, that brick in my brain is becoming part of me, like any vital organ in my body. I believe the weight of it will always be palpable, but I can physically breathe again, and the panic I felt seems to have subsided greatly, even in this short period of time. This gives me hope that the future will feel even better to me, although I expect there will be days where its presence is still overwhelming. These new friends of mine react to and deal with this situation differently, but we borrow strength from each other on days we feel weak and listen to each other's deepest, darkest confessions that nobody else would ever understand. I know there are even darker thoughts and fears that we do not express at all but all understand anyway. We have been forced to acknowledge our children's mortality and rejoice in the miracle that they are in our lives. We share our joys and frustrations. Despite the ups and downs, we are all doing the best we can with the resources we have been given, and I believe we all strive to be great mothers. These women are such an inspiration to me. One of the reasons I share what I do here is to help them as much as they have helped me. I hope that someday we can all actually hug each other and have our children see each other with their own eyes. What a day that would be! Yesterday one of my new friends asked me when Erik first smiled. I got out his baby book, which I don't open much anymore since the diagnosis, and started to read. It turns out she is having to wait for that smile much longer than we had to, and my heart broke because a few months seemed like an eternity to me. It is very important to realize that any kid has his own timeline for doing things, "normal" or not. I want my son to seem three-dimensional to people who don't know a kid with WS, and that is why I will share what I wrote in his baby book. If he is light years behind someone's child, that's okay! I am slowly learning to accept that, because it is painfully obvious most of the time Erik is on a different timeline than other kids. However, I definitely don't want to fuel the anxiety some mothers have if Erik is actually ahead in some areas. A lot of moms have half-filled baby books because they were suddenly consumed with chasing their toddler or didn't make it a priority. Mine is half empty because filling in the factory-printed blanks and timelines became so painful to me that I had to shut it and put it in the closet. Before the diagnosis, it became a horrifying scrapbook of giant red flags demonstrating there was something wrong. After the diagnosis, it has lost a lot of its meaning to me. Fact: My child will never be on the timeline outlined on the charts and graphs I have seen covering the walls in clinical settings. They still depress me to no end, but I have learned that thumbing my nose at them and writing my own"baby book" in this blog is a much more productive way to document and share information about Erik and introduce him to the world. For those of you waiting for that first smile, like my new, dear friend, it will come. If anybody understands how hard it is to wait for things, I do. And I will be right there with you cheering if you want me to be.

ERIK'S RECORD OF FIRSTS (approximations)

Slept through the night: 3-1/2 months (unfortunately, this was a very isolated incident)

Smiled: Smiled at rattle at about 3-1/2 months and smiled at each of us the very next day. Smiled at inanimate objects sporadically before this, like the hardware in his swing, but not at people. We had no diagnosis, but I felt something wasn't right. I tried to tell the doctor, who told me he was just unhappy because of his acid reflux.

Laughed out loud: 5 months

Rolled over: 2 months

Sat up alone: 9-1/2 months

Crawled: 10-11 months

Waved bye-bye: 1 year, 3 months

Ate solid food: 5 months (rice cereal)

Stood: A little shy of 1 year

Took his first step: 17 months

First word (without prompting): About 20 months ("uh" = up once at grocery store). Still waiting for more spontaneous words! He will grab the remote control and say "no no" now. He will copy most words and sounds he hears and makes a siren noise (woowoowoo) when he is going to grandma and grandpa's to play with his fire engine.

Saturday, July 01, 2006

Au Revoir Le Binky

Brian and I made the decision that Erik would quit his binky cold turkey last night. I was prepared for the worst. Instead, Erik slept soundly, although he awoke much earlier than normal. He was even unusually rested and obviously very happy. In fact, he was so darn happy he was tensing up and trembling a little like he does when he gets excited, laughing like a loon. As it turned out, I was the one who had trouble sleeping! I had unexpected twinges of guilt because I had just taken away the only thing that seemed to soothe Erik when he was small and his face was raw from his own stomach acid. However, now that I take a good look at Erik, I realize we don't have a baby anymore, and the months of excruciating pain that he endured ended long ago with the combination of medicine and time. It is now time to move on to the next stage because we survived the last one. We actually did it! Maybe I have had my head down for so long trudging along in the muck of survival mode I forgot to look up to see we have made great progress. I'm not really sure. I just never imagined the difficulty I would have giving up the binky at the age of 35! Goodbye binky -- and goodbye tiny baby of mine.