Erik Quinn: The Heart of a Family: November 2006

Wednesday, November 29, 2006


It's strange to be part of a family and have laid eyes on very few members of it. I have only met two kids with WS and their families. In the WS family, we miss each other terribly without having met. We communicate through blogging, e-mail, and phone calls. We hear news through a surprisingly efficient WS grapevine, most of which is based on the WSA message board. I read the message board less and less as time goes on and my need for it diminishes, but I check it probably once a week. My closer WS friends just reported the news of a 2-1/2-year-old little boy named Gage, and the news shocked us all, as it's pretty hard not to look at our own kids and face what WS means to us all in even a purely medical sense upon hearing it. It's absolutely terrifying.

Gage went in for a cardiac cath this month, as his aorta was becoming narrow, an extremely common defect in Williams. The doctors were checking to see if surgery was required. His blood pressure suddenly dropped, and his heart stopped. He responded to resuscitation, but his heart stopped two additional times, requiring shocks and life support. After a couple of days, they tried to take him off life support but were unsuccessful. Open heart surgery was performed while Gage was on life support, a risky but thankfully successful procedure. He developed bilateral pneumonia after the surgery from being on his back for a week, and I am assuming treatment for that was successfully initiated. His parents noticed that his left side wasn't moving, and a CT scan revealed that he had suffered a stroke. His mother reports that he had just taken his first steps before they entered the hospital, and now he is partially paralyzed, so, even in the best case scenario, they must start over in that sense. Because he is heavily sedated, the damage to his brain is an unknown at this point in time.

This news makes me question the medical care we have received here in this small town, and my trust in the medical community as a whole was shaken long ago. Even under the best of care like Gage is receiving, things go wrong. For 17 months we were told that Erik was "normal" when his calcium levels were probably sky high and frying his kidneys from this undiagnosed syndrome. We have never had his kidneys checked, and now I wonder if there is permanent damage there. His doctor talked of calcium supplementation at one visit, the last thing you would give a child with WS. The report of his heart and vessels being reportedly normal came after much study by his physician and didn't seem very reassuring to me at the time. We were told that there was possibly some narrowing in one area. My God, what does that mean? She told us that things were fine but that she couldn't guarantee things wouldn't worsen, either. When I smile and tell people that Erik's heart and vessels are fine, I know that these defects often worsen and that we have no idea what the future may hold. For the most part, the doctors here seem to have no interest in keeping tabs on Erik's condition or checking blood levels for any reason. Again, I am told that things are "fine." I have seen my friends go through heart caths and surgery in their children. I am reassured that our next echocardiogram will be performed next year. I suppose what bothers me the most about this story is that this little boy is about Erik's age, and I can't fathom the pain and suffering they are enduring right now.

It's just upsetting to see people suffer like this and realize it could all happen to you. I think that's where a lot of us are right now. I am beyond thankful our son has been healthy to this point, but I always have the fear of the unknown in the back of my mind and wonder if there is enough being done for him.

We are all holding Gage and his family in our thoughts and prayers. Hopefully, we will receive good news soon about his condition soon.

A photo of Gage (he's adorable):

Tuesday, November 28, 2006

Cookie Time

Going to Erik's school on Tuesdays for his class and my parent group affects me quite differently than it did a few weeks ago. I've come a long way, baby! I don't feel like vomiting in the parking lot anymore. I rarely cry on the way home. I am excited to see the children making real progress each week and look forward to seeing them. However, I still feel slightly raw afterwards, and something small and unexpected has the potential to throw me off balance and upset me, but I think that's because many of the feelings I shove down inside me to survive are brought to the surface to talk about with the other members of our group. These feelings remain on the surface for the remainder of my day as I deal with them and put them away, one by one. I'm not sure that will ever change, and I'm okay with that.

It snowed last night and will likely not reach 32 degrees today to melt. Luckily, my Jeep does well in the snow. Erik and I left 30 minutes early to get across town and begin his walk from the car to the school. I'm pathologically early to nearly everything I attend. Tuesdays are all about Erik, and I don't rush him in any way once we get loaded in the car. It is nice that I don't have to rush, either. When we arrived, I set him down on the sidewalk, and he said "WA WA" before he suddenly plunged his big, bare hand into the snow. Boy, was he surprised! He brought his hand back up and studied it intently. There were fluffy clumps of snowflakes stuck to his fingers. I relish watching him discover the world. We then slowly began making our way to the building over the slippery pavement. His pace is quickening every week, but we still had to stop to watch the heavy equipment working a couple lots down. Since Aspen sent Erik a tractor for his birthday, he has been on the lookout for the full-sized ones out in the world. When he saw a grader working, he craned his neck to see its knobby wheels turning in the snow like giant powdered donuts and yelled, "DACTOR!" As it turns out, we arrived in the classroom a full 5 minutes early and had the opportunity to relax to some classical music that was softly playing before the other children arrived.

Our parent group was moderator-less this week due to illness. Even Bev, Erik's therapist, was absent. Brenda, the angel that she is, came in to make us coffee. Group consisted of me and the two other mothers I now know. Another mother came in to join us toward the end of the session. We didn't run out of things to talk about. What I found quite helpful was the fact that Ms. R, the mother dealing with Phelan-McDermid syndrome in her daughter, readily admitted she got emotional during parent group and found it difficult to attend sometimes. What? I'm not the only one? She asked if I attended every week, and I told her that I have given myself permission to skip but that I haven't done so yet. When I remarked at how easy it seemed for the other parents to attend, she reminded me that most of the other parents are playing a different ball game than we are and probably have an easier time with the emotional part of things. In other words, there's a big difference between a developmental delay and a genetic deletion. It's nice to have someone speaking the same language as I do. There doesn't seem to be anybody else in town who can truly understand my thoughts right now. We both explained our respective syndromes to the mother who arrived last, and she seemed to listen intently. Her daughter has ASD NOS (autism spectrum disorder, not otherwise specified). That has to be very difficult. I am thankful what we have is "specified" and shows up on a tidy little test when they paint chromosomes with dye and see a blank space where there should be genes. I know precisely what chromosome is lacking and where the deletion is located on that chromosome. That gives me some comfort. There was a lot of talk about the program here in town for autistic children, and I feel a little weird because although Erik's syndrome is classified as an autism spectrum disorder, he can communicate fairly well, so he doesn't seem to really fit into that program. I'm sure that if he attended, he would get a lot out of it, but the more I hear about it, it doesn't feel right to me like some of the other programs available do. I was excited to learn that Ms. R took her daughter to the therapist in town who works with horses and that they have a swimming pool they use for therapy as well. Her daughter is 20 months and will likely ride the horses when she is old enough at 2 years of age. She gave me the news that one of her relative's sons, who lives in New Zealand and has Williams syndrome, just graduated from college and that she would get more information for me about how and what he is doing. That was very good news.

Now that I am home, I have shoveled the walk and emptied the dishwasher. I sang Erik the "Cookie Song" (formerly the "Binky Song"), gave him graham crackers and some cheese, and put him into bed.

("Cookie Song" -- By Nancy)

It's cookie time!
It's cookie time!
Everybody scream and shout!

It's cookie time!
It's cookie time!
Get your little cookies out!

Hmmm. That's funny. I used to make up a lot more songs when I wasn't getting much sleep. Being rested stunts my creativity a bit, but I'm not complaining.

Sunday, November 26, 2006


I thought I would share what Brian and I heard and saw in church today. I tried to write a little about it, but all I can bring myself to say is that by the end of the story and the video, I had tears running down my face, soaking the neck of my blouse. Below is the story and the video. I hope you find it as encouraging as I did.

This weekend I came to the realization that all of the dreams I originally had for Erik are slowly but surely fading into a numb mist. I profoundly mourned the loss of them at the beginning of all of this, but the pain of that loss has subsided greatly day by day. I imagine there will always be pain there. However, there are so many possibilities open to Erik, and I am looking forward to the future with newfound anticipation and hope. When I dared to stop and feel what is in my heart today, I could almost feel the presence of new dreams forming there, the details of which I know are not mine to visualize yet. They are no longer my dreams. Only Erik can show them to me as he grows.



Team Hoyt
Sports Illustrated, by Rick Reilly

I try to be a good father. Give my kids mulligans. Work nights to pay for their text messaging. Take them to swimsuit shoots.

But compared with Dick Hoyt, I suck.

Eighty-five times he's pushed his disabled son, Rick, 26.2 miles in marathons. Eight times he's not only pushed him 26.2 miles in a wheelchair but also towed him 2.4 miles in a dinghy while swimming and pedaled him 112 miles in a seat on the handlebars--all in the same day. Dick's also pulled him cross-country skiing, taken him on his back mountain climbing and once hauled him across the U.S. on a bike. Makes taking your son bowling look a little lame, right?

And what has Rick done for his father? Not much--except save his life.

This love story began in Winchester, Mass., 43 years ago, when Rick was strangled by the umbilical cord during birth, leaving him brain-damaged and unable to control his limbs. "He'll be a vegetable the rest of his life," Dick says doctors told him and his wife, Judy, when Rick was nine months old. "Put him in an institution."

But the Hoyts weren't buying it. They noticed the way Rick's eyes followed them around the room. When Rick was 11 they took him to the engineering department at Tufts University and asked if there was anything to help the boy communicate. "No way," Dick says he was told. "There's nothing going on in his brain."

"Tell him a joke," Dick countered. They did. Rick laughed. Turns out a lot was going on in his brain.

Rigged up with a computer that allowed him to control the cursor by touching a switch with the side of his head, Rick was finally able to communicate. First words? "Go Bruins!" And after a high school classmate was paralyzed in an accident and the school organized a charity run for him, Rick pecked out, "Dad, I want to do that."

Yeah, right. How was Dick, a self-described "porker" who never ran more than a mile at a time, going to push his son five miles? Still, he tried. "Then it was me who was handicapped," Dick says. "I was sore for two weeks."

That day changed Rick's life. "Dad," he typed, "when we were running, it felt like I wasn't disabled anymore!" And that sentence changed Dick's life. He became obsessed with giving Rick that feeling as often as he could. He got into such hard-belly shape that he and Rick were ready to try the 1979 Boston Marathon. "No way," Dick was told by a race official. The Hoyts weren't quite a single runner, and they weren't quite a wheelchair competitor. For a few years Dick and Rick just joined the massive field and ran anyway, then they found a way to get into the race officially: In 1983 they ran another marathon so fast they made the qualifying time for Boston the following year.

Then somebody said, "Hey, Dick, why not a triathlon?" How's a guy who never learned to swim and hadn't ridden a bike since he was six going to haul his 110-pound kid through a triathlon? Still, Dick tried. Now they've done 212 triathlons, including four grueling 15-hour Ironmans in Hawaii. It must be a buzzkill to be a 25-year-old stud getting passed by an old guy towing a grown man in a dinghy, don't you think?

Hey, Dick, why not see how you'd do on your own? "No way," he says. Dick does it purely for "the awesome feeling" he gets seeing Rick with a cantaloupe smile as they run, swim and ride together.

This year, at ages 65 and 43, Dick and Rick finished their 24th Boston Marathon, in 5,083rd place out of more than 20,000 starters. Their best time? Two hours, 40 minutes in 1992--only 35 minutes off the world record, which, in case you don't keep track of these things, happens to be held by a guy who was not pushing another man in a wheelchair at the time.

"No question about it," Rick types. "My dad is the Father of the Century." And Dick got something else out of all this too. Two years ago he had a mild heart attack during a race. Doctors found that one of his arteries was 95% clogged. "If you hadn't been in such great shape," one doctor told him, "you probably would've died 15 years ago."

So, in a way, Dick and Rick saved each other's life.

Rick, who has his own apartment (he gets home care) and works in Boston, and Dick, retired from the military and living in Holland, Mass., always find ways to be together. They give speeches around the country and compete in some backbreaking race every weekend, including this Father's Day.

That night, Rick will buy his dad dinner, but the thing he really wants to give him is a gift he can never buy. "The thing I'd most like," Rick types, "is that my dad sit in the chair and I push him once."

Can World's Strongest Dad

Saturday, November 25, 2006

Giving Thanks

On Thanksgiving Day my parents came to our house with teriyaki steak kabobs, twice baked potatoes, and fresh bread. My father fired up our barbecue up on the back porch out of the bitter, snow-scented wind and managed to keep the fire under our dinner lit. We then enjoyed a wonderful meal in front of the Dallas Cowboys game and had a great time.

Friday Brian headed over the snow-covered mountains to the Civil War game, where he and his little friends enjoyed the dead ducks he brought and fried in effigy. The ducks were apparently joined in his deep fat fryer by jalapeno poppers, chicken nuggets, and mozzarella sticks. While this delightful little ritual took place, Erik and I joined my family at Gramma and Boppa's house here in town. My grandmother, aunt, uncle, and aunt's sister met us there. We watched the Beavers beat the Ducks but had a pleasant evening anyway. I took Erik home at the end of the evening and put him to bed. I turned on my crime shows and waited for Brian to get home safely, which he did.

We celebrated a belated Thanksgiving today with my family. I prepared cranberry salad and poured it into a cut crystal bowl that was a wedding present. This morning Brian and I created the yam balls we saw on the Food Network (Paula Dean) last week. We baked some yams, mashed them, seasoned them with orange zest and nutmeg, wrapped them around marshmallows, and rolled them in coconut, sugar, and cinnamon. We took our goodies over to my folks' house. Everything was going swimmingly until my mother's normally reliable 30-year-old oven decided it had cooked its final Thanksgiving dinner. Things were a little dicey after this point. The yam balls were whisked outside and ended up on the barbecue. The rolls found a home in the convection/microwave oven. The turkey temporarily went from bake to broil. There were beads of sweat shed, an unanswered distress call made to the neighbor, plan Bs hatched, and whiskey poured. I saw my parents giggle in the kitchen like I haven't seen in a long time, especially in face of culinary disaster. My father took several alarmingly aggressive axillary readings of the poor turkey's temperature while my mother wondered aloud how much heat was escaping each time the oven door was opened. Finally, seeing looks of approval and relief from my parents after one final temperature check, I glanced at the clock and called time of death.

Thanksgiving was officially ON.

The yam balls came back inside, the rolls emerged out of the little convection oven, and the cranberry slurry was presented (one year the gelatin in the cranberry salad did not solidify, and we have called it "slurry" ever since). After working hard to entertain everyone present, Erik sat back and enjoyed mashed potatoes, yam balls, and bread with the family. However, he immediately ejected a bite of turkey and made a stinky face. Maybe next year.

After our afternoon feast, most of the group headed back over the mountain after hugs and goodbyes. Brian and I picked up the debris field of toys and were given a generous portion of leftovers to enjoy at home. I have since been napping under a blanket with my feet on Brian's lap in front of the USC/Notre Dame game while Erik does circles around us with his Fisher Price corn popper. Just a couple months ago he couldn't even pick the thing up by himself and maneuver it around. Now he will use it for 30 minutes straight and make a loop through the entire house. It's loud. It's obnoxious. It's music to my ears to hear that toy being propelled by our son. He pushes it so fast that his head bobs up and down like an old black and white movie that was recorded at an unnaturally high speed.

I read a blog today about celebrating the holidays for the first time after innocence has been stripped away. This woman's daughter had cancer last year, and she is seeing the holidays in a new light. It really struck a chord in me, as I have been thinking a lot about that lately. Everything looks and feels different now, especially the holidays, which are a time of reflection for me. With the new dreams that are slowly replacing the ones that were cruelly destroyed by Erik's syndrome comes a sharp-toothed fear that bites into me, especially when I am alone, and makes me feel like I am 10 years old all over again. I realize how temporary everything is and that absolutely nothing is guaranteed, fair or not. I realize now that the schmaltzy saying that "each day is a gift" rings true. The holidays, including potentially difficult family dynamics and failing appliances, are no exception. It's all good. No matter what happens tomorrow, I hope everyone around me near and far knows how thankful I am they are in my life today. I am especially thankful to have the privilege of being Erik's mother. His life is a miracle in itself, and I will never take a single beat of his heart for granted.


Wednesday, November 22, 2006

Civil War

Ah, college. You couldn't come remotely close to convincing me to repeat those years of my life for all of the money in the world. Saying I hated it would be an understatement. Frankly, the parts I have the misfortune of remembering I have tried quite unsuccessfully to forget. If I have to say something positive about it, I would state that a lot of what shaped me as an adult came from that time period and the years surrounding it. However, what happened during those years comprises another long, horribly painful, almost unbelievable story, parts of which I have shared with only a couple of people over the years. I have never shared the entire story with a living soul and likely never will. I would much rather think about Brian's more pleasant college experience than my own, and I do so on a regular basis, especially around football season.

Brian and I attended the OSU Civil War Dinner and auction last night benefiting the athletic scholarship fund. This Friday my college team, the Oregon Ducks, play Brian's college team, the Oregon State Beavers. This is an ancient tradition by Northwest standards, as this rivalry was born in 1894. I have a very difficult time enjoying the Civil War game because I attended the University of Oregon but readily cheer for Oregon State now, having a season ticket available to me when I feel like traveling with Brian to see them play. Being born into a Duck-oriented family, I admit it was difficult to get my mouth to open and any sound to come out to cheer for the Beavs at first, but I have become accustomed to it. I am now a great fan of both Oregon teams.

Last night Brian and I both dressed up to the best of our ability and dropped Erik off at Boppa and Gramma's house before heading to the country club for the event. There were many tables of wonderful items to bid on in silent auctions, including art, baskets of beer, fly fishing trips, and quilts. Brian bid on a day of golf. I was one of about three Duck fans in attendance. There was a booth set up in the dining room with three large wooden nutcrackers dressed in tiny Duck basketball jerseys to be knocked over with bean bags for prizes. My studmuffin husband easily knocked down two of them and won a flashy orange and black Beaver watch. We chose places to sit and were eventually joined at our table by some other older, slightly annoyingly higher maintenance Beaver alumni. Almost everyone was wearing bright orange and black and sported obnoxious but festive orange lapel pins that flashed incessantly. We enjoyed plated dinners of beautifully presented chicken breasts and thick, slightly bloody steaks (no duck, thank goodness). The live auction was a riot. Brian bid on a framed photograph of a local mountain lake, a free Porsche rental, and a stay at the casino, although we were far too cheap to actually fight for and win anything. We also bid on after-dinner sweets in something called the "dessert dash." The table who raised the most money had first pick from a long table of delicious desserts, including glossy pumpkin pies, gorgeous pastries, and cupcakes grouped together and frosted in the shape of a turkey donated by local merchants. The rest of the tables would be called one by one by highest to lowest donation. The table who bid the least would receive the last choice booby prize, a basket of America's favorite non-biodegradable desserts -- Twinkies and Ding Dongs. As they called out tables, a representative from each table literally ran up to select an item. Being chock full of meat, sprinting to grab a rich dessert wearing kitten heels was the last thing on my mind. Brian ran for the benefit of our table and successfully avoided the Twinkies/Ding Dongs with our very modest contribution, although one table actually ended up fighting for the Hostess delicacies. Different strokes, I guess. There was a short video featuring the OSU coach talking about preparing for the game, a speech by a thankful scholarship recipient on the baseball team, and a wacky auctioneer who called his wife on his cell phone during the sale and had the entire crowd scream "GO BEAVERS" (she's apparently a Duck, too).

(Cue the harp music and Nancy fading into an unrelated daydream)

As I sat watching the festivities in this beautiful hall, everything swirled into a black and orange blur. I realized the last time we were in that room together was the day we got married. Brian's hair was hardly gray back then. I remember the balloons...the cake...the beautiful tables...the butterflies in my stomach --

And then I realized Brian was talking to me. His lips were moving, and he had obviously asked me a question.


Uh, sorry...what?



Brian may be gray, but I'm apparently going deaf with age and cramming headphones in my ears on a daily basis for work (plus, I hide my gray, so that's hardly fair). I stopped to explain to him what I was daydreaming about, and we both laughed. Life is certainly different now than the day we walked down the aisle. We seem so much older now in many ways.

After the auction wrapped up and the food was consumed, we headed home through a weak, slushy snow flurry. We arrived just in time to see Erik off to bed and liberate Boppa from his babysitting duties. All and all, it was a great evening, and I enjoyed myself immensely, but I'll be glad when this Civil War nonsense is over! Brian will head off to the game Friday with his newly-purchased deep fat poultry fryer and two poor ducks to put in it for his tailgating party menu. It's hard having a mixed marriage sometimes, but I have learned to roll with it, dead poultry and all.


Civil War (college football game)
From Wikipedia, the free encyclopedia

The Civil War is the colloquial name for the annual college football game in the U.S. state of Oregon between intrastate rivals Oregon State University (the OSU Beavers) and the University of Oregon (the U of O Ducks). First played in 1894, it is the oldest college football rivalry on the West Coast of the United States, and the seventh longest in the nation.

The game is played in November, alternating between Reser Stadium in Corvallis (home field of Oregon State University) and Autzen Stadium in Eugene (home field of the University of Oregon). It has been contested 109 times as of 2005. The University of Oregon holds a series lead of 55-44-10. The game was not contested in 1900, 1901, 1911, 1943, and 1944.

The Civil War briefly had a traveling trophy, an abstract maple-carved statue of a platypus (a creature which resembles a cross between a duck and a beaver). The Platypus Trophy was awarded from 1959 to 1962, after which it disappeared. Rediscovered in 2005 in a closet at the University of Oregon's MacArthur Court, there is a move to revive the Platypus Trophy as part of Civil War tradition.

Other athletic contests (most notably, men's and women's basketball) between the schools are also referred to as "Civil War" games; however the term is most commonly used to refer to the annual football game.

The 1983 contest between the two teams produced a scoreless tie. Played during a rainstorm (and pitting two mediocre squads against each other), the game is commonly known as the "Toilet Bowl", due to the poor quality of play exhibited in the game (it was not a steadfast defensive struggle). No NCAA Division I football game has ended in a scoreless tie since, and due to the recent introduction of overtime into NCAA football (which eliminated ties), it is unlikely to ever happen in the future, unless a subsequent rule change allows tie games to once again occur.

All Civil War games since 1997 have resulted in a victory for the home team.

Tuesday, November 21, 2006

There's My Cute Little Guy

Cleaning your house while your kids are still growing is like shoveling the walk before it stops snowing. -- Phyllis Diller

I knew today would be better.

Erik and I pulled our crabby selves together early today to prepare for group. Well, actually, only one of us was crabby. As I looked at my breakfast-coated, crack house kitchen, I realized that we had the week off from therapy for the holiday (insert forehead slap here). I decided that since we were dressed and looking painfully irresistible, we would hit the grocery store at 8:30 a.m. and pick up everything we needed for Thanksgiving as well as some spur-of-the-moment cookie baking. When we arrived, the store shelves were being stocked as we shopped but picked clean faster than the workers could put out new items. I know from experience that this grocery store runs out of everything as we approach each holiday, and I have found myself without necessities such as eggs in years past. Not this year! I was very happy to find almost everything. The only item MIA was crushed pineapple. We will have to run tidbits through the food processor for my cranberry salad. Of course, I will do that in the garage, far away from tiny, sensitive ears. As I shopped, my mood lifted. Erik greeted every stocker, shopper, and checker. An elderly couple walked past us at one point and actually began giggling like kids when Erik greeted them with a deep "HI" and surprised them. I strode down the aisles grinning like a crazy woman. I couldn't help it. When our cart was almost too heavy to push and was groaning under a load of holiday goodies, we were finally finished. It was wonderful not having to hurry. I stood in a blissfully short line and overheard the checker say, "There's my cute little guy." I realized that she was talking about Erik with the other customers. As we loaded up my shopping bags, she told me that he was perfect and that he would simply be who he was meant to be. In fact, she mentioned twice how perfect he was. What a strange but wonderful thing to say, and the timing couldn't have been more perfect.

FUNNY STORY: Last night the phone rang. When I picked it up and said hello, I heard a male voice ask, "What's going on over there!?" It was Rob, Lisa's husband, from next door. He said he had his Morse code book out and was trying to decipher the signals coming from our dining room window. After being thoroughly confused for a moment, I realized Erik had climbed up to his perch on the back of the love seat and was flipping the light switch on and off Studio 54 style. At first, this constant flickering of light was enough to send me into an epileptic fit, but I'm so used to it now that I don't even notice. Rob thought we were in some sort of distress, on the floor with broken hips or captive in some sort of horrible home invasion. When I told him it was only Erik practicing his skills, he laughed and sounded relieved. We all take care of each other out here.

Tonight we attend a dinner and silent auction at the country club to benefit the Oregon State University sports program. It may be snowing, but I am bound and determined to put on a skirt and completely impractical heels for the first time in months. The idea did not appeal to me when Brian reminded me of it at 6:00 a.m. and I was wearing a towel on my head, moisturizer, and a coffee-stained bathrobe, but now that I think about it, I'm up for it!

Gobble, gobble.

Monday, November 20, 2006


In hindsight, I should have known that Erik's cuddling last week was a giant red flag. He slept off and on all day Saturday after developing a fever of 102.5 but no other real symptoms. On Sunday he was less feverish but still not quite as delightfully Erik-y as he usually is. Brian and I took the opportunity to enjoy being able to hold him once we had his fever under control. Erik is usually much too busy for that kind of thing. By Sunday night, we felt he was well enough to briefly attend a party with folks from Brian's work. He loved every minute of it, especially when he saw there were dogs and a giant exercise ball there. He hung onto strangers and did the smile/quint face I still need to find a name for. The ladies loved him. I ended up in a comfortable corner watching plates of steaming hors d'oeuvres come out of the kitchen after taking a quick tour of the house with the hostess. I found myself chatting with a woman whom I previously met once or twice before. She became pregnant and had a baby a few months after I did. Frankly, comparing kid stories with other parents makes me uncomfortable a lot of the time. I find myself putting on a cheerful facade and hear a voice that doesn't sound like my own asking automatic questions about their kid I don't really want to hear the answers to but feel obligated to ask. It's hard to relax during this exchange. Her 17-month-old daughter weighs 27 pounds and seemed to be in constant motion. She said, "I noticed that Erik has leg braces on." I had dressed Erik in his best jeans, which cover up his braces for the most part, but they are still visible, especially when we pick him up and hold him. His pants ride up, making his legs look a lot like those of a Star Wars stormtrooper from the back (we hum the stormtrooper theme sometimes). Before I knew it, I had launched into a quick lecture about Williams. It was the first time I really did that without thinking. Unfortunately, because I haven't had much opportunity to practice what to say, I had some difficulty putting my thoughts into words, although I am almost certain she couldn't tell. She responded quite appropriately and asked questions without overreacting, blowing it off as nothing, or seeming to feel sorry for our family. Because I was trying to be brief, I sounded too blunt and probably colder than I intended. I could have said that his heel cords needed to be stretched out and left it at that, but I truly wanted someone at Brian's workplace to understand what he has been going through over the past couple of years. He is quiet about it, and only a couple of people know what he has endured. Looking back, there were some things that I wish I had worded differently. I sucked all of the emotion out of the words I chose in order to get through it. It probably sounds strange, but I would really like to sit down and think about some sort of short script to carry in my mind that I can follow until I'm more comfortable. I imagine things will go a little more smoothly next time. I do feel good about giving it the old college try and making it through it. I'm obviously ready to talk about it outside of my blog here and there with people outside our regular social circle when it is appropriate or questions are asked. It felt good to talk it with Brian on the way home, and he was very supportive.

It's hard seeing typical kids at what should be happy gatherings for us. It still REALLY bothers me, and I feel last night has thrown me into a little bit of a funk today. There are no tears to cry today, but I just feel like being alone. Most of the time I don't know I'm bothered by something WS-related until the next day, like a time release slap in the face that stings for a day or two afterwards.

Because I have been thinking about the one-year anniversary of our diagnosis coming in the next few months, I went to my file cabinet today and retrieved a copy of the e-mail I sent to most of my friends and family the day after we traveled to see the geneticist. I thought I was ready to handle it, but it ended up making me feel really lousy, so it is back in the file cabinet for now. It remains a very detailed record of the worst day of my entire life. Quite truthfully, I wasn't sure if I kept it and was searching for it out of curiosity.

Tomorrow will be brighter.

Saturday, November 18, 2006

Bulbs and Babes

I just got back from my yearly holiday extravaganza with my zany neighbor Lisa. Erik is coming down with something, and I left him home with his dad for some TLC and male bonding. We drove to the next town to attend the holiday fair at the county fairgrounds. It's never a cheap trip, but they ply us with thimble-sized plastic cups of hot spiced wine and gourmet foods such as chunks of bread dipped in flavored vinegars, jalapeno jelly on crackers, Danish pastries, and pieces of chicken coated with samples of spicy barbecue sauces. To die for. The first booth we hit, of course, was the wine booth, where a very salt-of-the-earth wine expert gave us an informal lecture on his vineyard and wines which seemed to have a rather kitschy flying saucer theme and claimed to be "out of this world." The whole booth had a little bit of a creepy Heaven's Gate cult feel to it, but his shameless flirting, very specific compliments on our eyes and embarrassingly identical attire, and generous samples ensured that we each walked away with a decent bottle of merlot and brochures on his vineyard. I located my favorite vendors from last year and emptied my purse in each of them. We toured all of the booths in an hour and walked out with bulging sacks, the handles of which cut into our fingers and turned them white with lack of circulation. Still, we both agreed we could have gone another two hours. I also discovered a brochure about a ranch here in town that provides therapy for the disabled using horses, of all things. They claim that being with and riding their horses (using adaptive riding equipment on horses in a lighted, indoor arena) has physical, cognitive, emotional, and social benefits, and I previously heard rave reviews about it. It was suggested to me long ago by a therapist at Erik's school, but I was in a teensy bit of denial about ever needing it and threw away the information provided to me. Why I discovered this neat little stack of brochures in the chaos of twinkling lights, premature Santas, sizzling foods, and a massive crowd in that place is a complete mystery, but I took it as a sign and a nudge for me to find out more.

After loading the Jeep with our loot, we drove downtown in this little city I rarely visit anymore, parked, and walked down the main drag to explore quaint antique shops full of dusty treasures. I have a horribly rampant lamp fetish that has mushroomed out of control over the years. I don't know why. I adore beaded boudoir lamps, torchieres, buffet lamps, chandeliers, night lights, track lighting, sconces, lava lamps, and Tiffany lamps big and small. If it lights up, I want it. Most girls have a closet full of shoes or purses. Not me. I love lamps. We saw some fabulous items today, my favorites including a bejeweled pink chandelier, jumbo-sized, illuminated purple grapes suspended from a hook by a rickety chain, and a seemingly gravity-defying glass cocktail table skewered by a massive lamp supported by a stack of crystal orbs with a giant, satiny lamp shade. The cocktail table looked like something that would be quite comfortable in the living room at Graceland. Having a gigantic imagination, I always fantasize about the homes where these pieces formerly resided and wonder if the rest of the furnishings were as fabulous. I can touch a piece and visualize beehive hairdos, cat eye glasses, family gatherings, and domestic disputes. I suppose I'm a furniture psychic of sorts. An antique whisperer.

Our next stop was the sports bar at the end of the main drag. The nicer restaurants within walking distance were limited, and our stomachs would take us no further. This particular joint featured a giant television screen as big as one wall and too many smaller screens to count featuring every football game being played in every American hamlet. I know from radio spots advertising this particular establishment there is sometimes a mechanical bull that bikini-clad contestants ride in a delightful little contest by the name of "Bulls and Babes." However, on this quiet afternoon, the bull was nowhere to be found, and only a handful of affable football fans and silent cowboys enjoyed standard bar fare. We split a hamburger, fries, and a chicken salad with our respective reduced-calorie cocktails of choice as we discussed Lisa's recent sweet victory over her husband playing Golden Tee and our favorite vacation destinations. It was a relaxing end to a very fun, adult afternoon.

Time to extinguish my new swing-arm wall lamp with faux cracked leather shade and tend to a tired, hungry husband and a progressively feverish little boy.

Thursday, November 16, 2006

Great Balls of Fire!

Glissando (plural: glissandi) is a musical term that refers to either a continuous sliding from one pitch to another (a "true" glissando), or an incidental scale played while moving from one melodic note to another (an "effective" glissando).

Last night I drove through a developing storm to Gramma and Boppa's to get Erik after work. The wind sounded like a freight train, and a giant, dried up ball of Russian thistle the size of a gazelle suddenly blew out of the darkness in front of my Jeep on probably a 40 mph gust. It was briefly illuminated by my headlights before it struck my grill and bounced harmlessly to the side of the road. It was awesome weather. After almost having a coronary event and then navigating through some exceptionally horrendous traffic clogging our tiny streets downtown, I was more than happy to relax a bit at my parents' house. My mother and I had just settled down in front of the evening news with wonderful little glasses of red wine when Erik decided to play the piano for us. Mom seated him on the bench at the keys, and I turned down the volume on the television to listen. Since we don't have a piano here at home, I haven't heard him play for months. The last time was quite brief, and at that time he preferred to play Jerry Lee Lewis style standing up like a little wild man. I was really moved by it this time. I suppose it was a little thing and my wacked-out hormones currently have me in a very vulnerable state emotionally, but I couldn't help but melt when he explored the keys with his amazingly strong but gentle hands. He first pressed both palms down into the white keys and put his forehead down low to the backs of his hands for a moment as the random jumble of notes faded. My mom smiled and commented, "So much emotion." After he returned to sitting upright and carefully pressed one of the black keys with a finger, his mouth opened, and he actually attempted to sing the note with my mom. I haven't seen him do this before, and I certainly haven't heard him really sing much of anything yet. He did this a couple of times. He sat at the piano much longer than I expected, and after some initial trouble successfully executed a couple of beautiful glissandi with the black keys. The whole thing was heartbreakingly sweet to me for some reason.

As I mentioned before, we don't know what the future will hold for him in terms of music. WS does not guarantee innate musical ability, although it does usually bring a great appreciation for music and in some cases great talent as well. He is born into a music-loving family with a Gramma who plays in the symphony and an uncle who can play the trumpet quite well. The rest of us just truly appreciate music of all types (my marching band bell bottoms and water buffalo hat have been retired long ago). My mother said that she played opera for him the other day, and he just froze in his tracks. I'm not sure how it struck him, but it apparently really made an impression. Music will likely be a big part of his life, although this seems to be only just beginning to develop at this point. Once again, I was skeptical about his interest in music until recently, when moments like this remind me of its potential to be a powerful tool in his life to comfort him and better connect him with the world.

I am very excited about spending the holidays with my favorite toddler this year. I am happy to say I found the perfect Christmas gift for Erik. My mother and I have been discussing keyboards, and Brian and I looked at some Yamaha electronic keyboards at Costco. Now THAT will be fun to wrap.

Erik and I snuggled and watched part of Sesame Street this morning after some quality time with Play-Doh, books, and trucks. He is all boy and rarely snuggles with me anymore unless he is feeling poorly. In fact, it's usually a red flag heralding some sort of developing illness. However, the show was all about babies today, and he was fascinated by it. He has been talking nonstop about the babies in his life for a couple weeks now. There is something new happening in him that is slowly but surely forming strong connections to familiar people in our lives besides just immediate family, and it is amazing to watch his memory and affection for them develop, even the ones who are a little scary to him. He will start reciting names of people he knows without warning, especially Baby Sammy, Cousin Brogan, Cousin Brayden, and Bev (BEF!). He sometimes goes to the window to look for them. He is smiling at his buddy Dominick now, although saying that many syllables has yet to happen.

We have (you guessed it) therapy today. What keeps me motivated is Erik's enthusiasm for the therapists and the fact it is still mostly play to him. Erik already knows Bev is coming because I told him this morning, and, from what I can tell, I believe he has remembered all day so far. I'm off to download bone scans to transcribe and be a productive member of society today. I hope everyone has a wonderful weekend.

Wednesday, November 15, 2006

Toy Review #1

On my desk sits a pair of Christmas gifts for Erik. Of course, they were purchased after carefully assessing their educational value and determining which halves of Erik's brain would be appropriately stimulated from playing with them.

These include a set of Melissa & Doug wooden lacing beads (Package reads: "Plus Two Laces!"), which I will open before Erik does and replace the strings with plastic tubing, which is easier for any 2-year-old, let alone one with motor skill difficulties, to manipulate through the beads. But wait! There's more. I also purchased a stacking shapes pegboard. I'm not going to even bother capitalizing that. It's from a seemingly reputable company called Learning Resources. What is a stacking shapes pegboard, you ask? Well, It's a board with holes in it very unenthusiastically impaled by pegs holding up "5 shapes in 5 colors!" I find it interesting companies make no effort whatsoever to give a painfully boring toy a name with just a little more...something. I'm no advertising executive, but these toys are in need of a serious makeover. The "laces!" in the one box only remind me of John Wayne Gacy's infamous rope trick, which is definitely not a very effective selling point for the 2-year-old set, and the pegs leave just about everything to be desired. They are the kind of toys a kid might open on Christmas morning and immediately start weeping, thinking Santa hates him. At least coal has the potential to keep a kid warm as he sobs himself to sleep. Even cuddly but seemingly uninspiring toys like Elmo gain the dubious honor of occasionally having methamphetamine packed in their furry, Muppet-y orifices and smuggled across the United States border. I guarantee that these particular toys will never make the news unless they pose some sort of choking hazard or mysteriously spontaneously combust and are recalled. Sadly, it would be difficult to even hurt yourself on them (I checked into that as well). What kind of fun is that?

Unfortunately, I feel it necessary to purchase these items as Erik develops upon the recommendation of his therapists. They do him a lot of good. However, it is going to be really hard for me to wrap them in festive paper, put them under the tree, and call them gifts. I even chose this particular pegboard because Erik will have a hard time rolling any of the pieces (he'll still try) on the hard floor and going into his happy-wheel-trance. I am requesting a wheel-less Christmas this year and a very silent night in terms of battery-operated items.

On the other hand, Erik and I have discovered the joy of Play-Doh. Actually, I have rediscovered how wonderful it is. It's nothing like the homemade dough with glistening squares of salt granules in it tinted a sickly pink by red grocery store food coloring. I hit the jackpot with the "Chomp 'N Chew" diner on eBay. It comes with a plastic diner featuring realistically uncomfortable booths and a miniature grill. There are molds to make all of your favorite classic diner foods, like spaghetti, corn, and fish (What the...?), and it comes with three tiny tubs of Play-Doh in three fabulously artificial, bright colors. The whole set seems kind of random if you don't have the whole town. You can decapitate each of the little figures and cram their craniums with clay so that when you return the heads to their torsos and push down on them, their hair grows. I'm not sure what kind of wacky diner this is, but apparently they serve gigantic doses of prenatal vitamins. I like chopping off a single strand of freakishly thick, dough hair and placing it atop the adjacent patron's plate of pancakes, whereupon the recipient picks up his plate and hurls it toward the kitchen and curses the chef. SPLAT! You can also pull their heads up slightly and cram the crudely molded food in their mouths. It's alarming but strangely adorable. Unfortunately, when they settle the check and get up to leave, all of the food they enjoyed rolls out their plastic bottoms, leaving colorful piles of dough where they once sat and instantly explaining why you never see the same busboy in Play-Doh Town.

Oh the fun that Erik and I have. At the end of our "therapy" session, there is quite a mess. It's funny -- I don't remember Play-Doh sticking underneath my fingernails and discoloring them for three days. It makes one wonder about what we are doing with our nuclear waste these days. It still smells delightful, though!

The heck with therapy today. I feel a gluttonous melee at the Chomp 'N Chew coming on.

Tuesday, November 14, 2006


I'm not certain where to begin today. Erik and I just returned from school this morning. He now smells a lot like Italian dressing for some reason but seems happy and animated. We braved the ice-glazed roads and sidewalks but made it to school and home safely. It was a fairly noisy day with a full class, but Erik reportedly did just fine. He apparently retrieved a bottle of catsup from the refrigerator upon request for a therapist. Erik's motivation is often fueled by the possibility of enjoying a delicious snack. Whatever works!

The mother I met this summer who has a little girl with Phelan-McDermid syndrome switched classes and was able to join our parent group for the first time, which I enjoyed immensely. Her daughter looked great today. Since the last time I saw them, she has grown (her syndrome causes accelerated growth for a time; i.e., 5th to 75th percentile in a mere two months). She also looked so much stronger. I was amazed. She is learning to use a tiny walker and seems to love it. Although she has not mastered turning it yet, she seems to be quite proficient at moving forward and enjoys her new independence. Although I feel a very real connection with her mother, Phelan-McDermid is very different from Williams, and the range of how severe the effects of this syndrome will be varies greatly. When I can almost bank on any progress Erik makes in terms of development being a permanent, solid stepping stone to acquire more skills, she will always wonder if her daughter's progress is temporary, as regression in motor/speech skills is common and sometimes permanent. She has very different challenges than we do, but our worries, grieving, and joy we feel from our kids' progress seems extremely similar. I have every reason to believe that her daughter will excel and thrive, especially after seeing her today for the first time in months. Seeing progress like this always sparks new hope in me for Erik and renews my faith in general. I have begun to realize that Erik's school is a unique place progress can be visualized and measured. It's not as depressing as it used to be for this reason.

The meeting with the associate pastor went well yesterday. We talked for almost two hours, so my worries of having nothing to say were completely unfounded. She recommended a couple of books which I will hopefully have an opportunity to review and recommend. We talked of pain and grieving. We talked about the individuals I am trying so hard to forgive for blaming Erik's problems before and after our diagnosis on gargantuan deficiencies in my mothering skills/common sense and those who continue to judge me on a daily basis in grocery stores when they see that something is wrong with our son. This has been absolutely brutal on my confidence as a mother. I hope to become deaf to those words and blind to those stares, but if that is not possible, I would at least like to let all the anger and resentment go, as it serves no purpose whatsoever and was never really about me or Erik at all to begin with. I believe most people mean well. In fact, most of the looks and questions we get are from people who simply curious and would like to know why Erik has to wear braces or acts differently from a purely scientific standpoint. Being a part of the medical community and having studied a number of syndromes and disorders in college, I am completely comfortable with this kind of curiosity.

We covered many more subjects, but in the interest of keeping part of my life private and the risk of boring you to tears, I will cease my report here. I am happy that I didn't shed one single tear. Looking back, I now know why I reached out when I did. Our church will be the very first place we "mainstream" Erik. It doesn't sound all that scary, I suppose, but it is a pretty big deal to a parent like me. All of our firsts are going to be very wonderful and very scary. It's nice to have a safe place to try it for the first time.

I had a nightmare about Erik being a fabulously talented pianist but not being able to make it up the steep stairs to the front of the church to the piano. After all, I had enough trouble ascending the steps wearing a ridiculously fluffy gown on my wedding day, perfect depth perception and all (Exhibit A: Wedding video of Nancy lurching up steps like Herman Munster). Ms. T. in parent group (The Woman Formerly Known as Rickets Girl) offered that her church has only one step to a much lower altar. Of course, switching churches for that reason would require a great deal of additional paperwork, so I'll stick with being a Presbyterian, at least for now. I am now confident that if he needs help in any way, he will receive it in a kind and discreet manner.

For parents in doubt: John 9:1-3

Sunday, November 12, 2006


We made it to church this morning. That might not sound like something to toot one's horn about, but it was a major accomplishment for our family. A churchy girl I am not, although my spotty relationship with organized religion has played a major role in my developing spirituality as a child and as an adult. On Sunday you are more likely to find me playing darts at a local tavern watching football than sitting in a pew wearing pearls, but today I found myself doing the latter, pearls and all.

And now for today's confession: We have attended church twice since Erik was born over two years ago. We dressed in our Sunday attire and got ourselves to the church on another occasion only to find that the regularly scheduled service had been moved to a later time that particular day. Our already exhausted child made it impossible to wait. It has been very difficult to go to church for a variety of reasons, the primary one being that Erik still naps in the morning for three hours, usually starting between 9 and 10 a.m. In addition, I was not close to being ready to leave him in the nursery at least a year after he was born, even before our diagnosis. Something told me it wasn't time yet.

Leaving our son in the nursery now is a complete snap, as strangers are friends to him and there is a nice selection of toy vehicles there for his amusement. It had been months since we dropped Erik off in the nursery the first and last time, but the woman working there definitely remembered Erik and commented on how tall he had become. After we got him settled and we began walking into the sanctuary, I was relieved that nothing burst into flames upon my return. That was a pleasant surprise. I felt like a ghost. I saw people smile at me and then do a double take to make sure I was still there, including the associate pastor. I felt like saying, "What? I've been here the whole time."

During the service I thought about Erik and how I want to make an extra effort to make him feel like he belongs and he is accepted as much as possible. Brian and I strongly believe his spiritual side needs to be cultivated and encouraged. However, I am now only just ready to take a leap of faith and let go of him a little to trust others to care for him and treat him kindly, even in a church setting.

The associate pastor preached about the Red Sea parting for the Israelites, who were fleeing the Egyptian army. She explained that some believe it did not part all at once, as it is often depicted doing in the movies, but opened just wide enough to take one step forward as they advanced -- step by step. It took a great deal of faith to take each step forward. Okay, okay! I see the obvious theme here. One day at a time. One step at a time. The hard part is having enough faith to move forward and move on. Faith in God. Faith in myself. Faith in other people. I get it, I get it.

I told Brian I would talk to the associate pastor after the service. One baby step forward for me. I almost chickened out. In fact, I did chicken out, as there were two people in line to talk with her and I deemed it too much of a hassle. We picked Erik up from the nursery instead. On the way through the slowly parting throng of coffee-sipping, cookie-munching churchgoers, she came out the door of the sanctuary as we passed by. This woman originally hails from Syria and has been part of our church for some time now. I love her wonderful sense of humor, the way her cultural background flavors her sermons and view of life here, and her openness. She came by the house just days after Erik was born to check on me, and I feel comfortable talking to her.

I told her that we were not purposely staying away but that Erik had some issues and that I really wanted to find some time to talk to her. She literally ran to retrieve her schedule and then offered to come to the house tomorrow morning. I'm not sure why I need to talk to her, but my heart tells me it's the right thing to do. I felt the need to contact her for a year now but haven't known why or what to say. I don't want Erik to be treated any differently than the other kids at church, but he acts very differently sometimes, and I want someone to know why. If he isn't ready to attend Sunday school in less than a year, I don't want to be turned away from the nursery and need options on what to do next. I know there are other kids there with special needs, although I haven't seen any of them yet, and I don't know what our church offers in terms of services. There are a lot of things Erik also might enjoy doing eventually, including a great music program. I certainly don't want to announce Erik's syndrome to everyone who cares for him but need to determine the appropriate amount of information necessary for each situation. I have no idea how to do that but am trying to get a feel for what to say.

I don't need more support, as I have been lucky enough to have found an incredible support system in and out of "Willi World," and I no longer have the desire to hook up with more parents in similar situations for my own needs. However, I feel it is important to let our church know I'm available in case somebody needs me in some way. Just from statistics alone, I know in the next few years our phone will ring with news of the next child like Erik being born. It's only a matter of time. Erik has already brought me so many people, and we have gained a lot of strength from them. After the diagnosis, I always pictured getting myself completely straightened out emotionally before I could offer myself to others. I would be an unusually wise counselor of some kind with the perfect shoulder to cry on. I would offer perfect advice. I would have no need to wear waterproof mascara anymore and would never have a bad day again. Everything would be perfect! I would be perfect!

Yeah, right.

I will always wear waterproof mascara, as I have a sensitive heart and cry right along with people or laugh until I cry and ruin my makeup anyway. I feel sorry for myself. If someone wanted to cry on my shoulder, they would find it covered in peanut butter from Erik's morning snack and soaked in drool. I have accepted that I will never figure things out to the degree that I would like. I'm not perfect. Not even close! What happened to my plan? Amazingly, people seem to like the tear-streaked, freaked-out mess I tend to be on the bad days I have, and I have many more good days now. I find myself in a perfect place to help, although it isn't where I imagined I would be, as I need a great deal of help myself. If I waited for things to be perfect, it would simply never happen. At this point, I'm moving forward step by step, and that's really all it takes to be of some good to someone somewhere. I can't do it alone, though. I don't know how to approach church anymore, and I'm scared out of my mind for my son. I need help.

Maybe that's what I'll say.

Saturday, November 11, 2006

Baby Monitor

The house is quiet this morning. I ran to the window like a schoolgirl to check for the dusting of snow that I keep expecting, but it has yet to show itself. Gracie is curled up in her basket outside my office door, and I hear only the obnoxious hum of the computer. I didn't sleep in until 5 a.m., but I'm not complaining. Close enough. I have not taken something to sleep for a good week now. Brian set the coffee up last night to begin brewing at 6:00 a.m., as he is not conscious at this hour when he doesn't have to be, and the scent of it is drifting up the stairs. Our coffee maker is noisily sputtering out the last of Brian's caffeinated love note to me as I type.

This week I tried to get some work accomplished at my desk while Erik napped. I have a Fisher Price baby monitor next to my out box I keep one eye on when Erik is home and I am upstairs. It looks a lot like a cumbersome communication device on the old television show Lost in Space. There are four arched bars under a smoke-tinted plastic cover that light up when there is sound next to the receiver plugged in next to Erik's crib in his room. Over the past two years I have mastered reading the monitor by sight and generally don't turn the sound on unless I need to confirm what I think is happening in his room. Here's how I do it:

ONE BAR: The bottom bar always has a faint, flickering glow. If the stereo is playing in the living room, the light barely flickers along with the music like an equalizer. It sometimes picks up Erik breathing or the knock of the UPS man.

TWO BARS: Likely snoring. Watch for the proper cadence. If the first and second bars light up and then go dark in a rhythmic pattern, Erik is snoring like a freight train. There is no need to turn the knob to listen. Sometimes the light will bleed up into the third bar if he really gets going.

THREE BARS: If all three bars are flickering merrily, Erik is talking to himself. Go ahead and turn on the dial to eavesdrop, as there is no cuter sound. I now hear real words here and there, most of which he says just for the pleasure of saying them. Last week I turned the dial up and heard "HI HI HI HI HI!" There was a long, silent pause, and then I heard him say very clearly, "WHEELS."

FOUR BARS: If all four bars light up repeatedly, Erik is officially as mad as a wet hen. The madder he gets, the more likely all four bars will illuminate, stay lit as he empties his lungs, and cast a scarlet glow over my desk reminiscent of a busy night on the streets of Amsterdam. Something is wrong. He has likely fallen asleep and awakened in a foul humor. There is no need to turn the speaker up. Go!

I wonder if mothers ever cease feeling that fear deep in their gut that blossoms when their child sleeps in an extra hour. I'm not one to ask, but I doubt they do.

I remember sitting here with a very round belly just a few days away from delivering Erik. I had just set up the monitor, a new, electronic lifeline to the freshly painted, kiwi-colored room below me and found myself wondering how my baby would sound on it. I even turned it on and watched it glow, wishing he could somehow say something to me, but the bottom bar only flickered along with the noises in the empty house.

We received our newsletter from WSA yesterday. In it was the story of two children who had passed away this year. One was a 16-year-old girl who had a history of serious heart problems and died in gym class. The other child, a 9-month-old boy with WS, passed away this February. Like Erik, the problems with his cardiovascular system were minor. His first months were eerily similar to Erik's (constipation, colic, special formula). Like us, his parents threw themselves into learning about WS and cared for him the best they knew how. He began to thrive but passed away suddenly from cardiac complications that were "undetectable while he was alive."

Most kids with what Erik has seem to eventually thrive, although from my experience with this wonderful group of people affected by WS and my own child, I know too well that what sustains us in life and we take for granted is often a struggle for these kids in terms of nutrition and getting the brain to work in harmony with muscles and joints. Their bodies are missing elastin, a key component in connective tissue that when deleted can lead to cardiovascular problems. Even their brains are now known to have a different structure than what is typical. I am amazed that my child has survived such a brutal deletion of genetic material and that there aren't more problems as a result.

Erik is a miracle to me, but I will never be able to completely relax if he sleeps an extra hour, no matter how old he is. This Fisher-Price monitor will likely be one of the last of Erik's baby things I pack in a box and slide into the darkness of the attic. I have learned to feel those four bright red bars inside of me and will forever feel them flickering, whether I am separated from him by a couple of walls or a few hundred miles.

Two to three happily flickering bars. Time for me to go.

Thursday, November 09, 2006

God's Will

I have yet to listen to this song without shedding a tear, and it kills Brian, too. It's beautiful.

God's Will
Song by Martina McBride

I met God's Will on a Halloween night
He was dressed as a bag of leaves
It hid the braces on his legs at first

His smile was as bright as the August sun
When he looked at me
As he struggled down the driveway, it almost
Made me hurt

Will don't walk too good
Will don't talk too good
He won't do the things that the other kids do
In our neighborhood

I've been searchin', wonderin', thinkin'
Lost and lookin' all my life
I've been wounded, jaded, loved and hated
I've wrestled wrong and right
He was a boy without a father
And his mother's miracle
I've been readin', writin', prayin', fightin'
I guess I would be still
Yeah, that was until
I knew God's Will

Will's mom had to work two jobs
We'd watch him when she had to work late
And we'd all laugh like I hadn't laughed
Since I don't know when

Hey Jude was his favorite song
At dinner he'd ask to pray
And then he'd pray for everybody in the world but him


Before they moved to California
His mother said they didn't think he'd live
And she said each day that I have him, well it's just
another gift
And I never got to tell her, that the boy
Showed me the truth
In crayon red, on notebook paper, he'd written
Me and God love you

I've been searchin', prayin', wounded, jaded
I guess I would be still
Yeah that was until

I met God's Will on a Halloween night
He was dressed as a bag of leaves...

(available on iTunes)

Wednesday, November 08, 2006

Key Toes!

Random Thought of the Day: Rock stars should never sing the word "moot," even if it does rhyme with something else.

Erik and I went to therapy at his little school yesterday. I generally don't dread going anymore. It doesn't always poison the day before and after it like it used to. There are some days I actually look forward to going and watching Erik play. I can't say I'm in love with the parent group, but it doesn't bother me much and passes the time. We laugh more than we cry, and it's okay to have a black sense of humor about things other parents would find shocking. I know where the coffee cups are located and which chair is the most comfortable. I speak up. Erik and I have changed a lot since we started going. I confess there are still some days one tiny trigger will destroy me for the rest of the day -- something someone says, if my son reacts negatively to being there, or watching a new child struggle in a body that doesn't work like it should. For the most part, though, it's becoming part of our normal routine. Do I feel a twinge of jealousy for mothers who are spending their morning at a normal play group or at home not analyzing what their child is doing to the degree I am required to? Hell, yes. It's more than a twinge. I'm more jealous than angry, although one can lead me to the other quickly. Anger is a confusing emotion for me because I'm not sure where to direct it, so I generally feel jealousy, sadness, and fear. Outside of group, I still can't bring myself to put myself in certain situations that are known to trigger some upsetting feelings in me but am confident I will know when I'm ready for those things when the time comes. In the meantime, I avoid upsetting situations and enjoy the things that are will likely make me happy.

We arrived at school early in order to have Erik walk himself in. He is slower than molasses in January, but I always make this extra time for Erik so he can make his way on his own. Since it was pouring down rain and I don't use Aqua Net hairspray anymore, I jogged with Erik in my arms to the dry walkway in the front of the building. I placed him down on the ground, pried my hand from his, and walked to the front door without him. I turned to face him and encouraged him to walk forward. He remained in a frozen squat but smiled pleasantly at me. Distracted by some soft light in the gloom, he turned his attention to the office windows above him and peered inside to see what was going on. A therapist joined us on the sidewalk and tapped on the windows to get the office staff's attention, and Erik waved at them. We then continued to coax Erik inside, and the therapist commented on how much patience I have. We eventually got Erik up to the door, and he stopped to carefully step over the flat metal strip in the doorframe, something that always freaks him out. I don't think he can tell how high it is. He did great up the hall and the ramp into his classroom and tolerated sitting next to a disturbing, cacophonous toy that shot cheerfully colored plastic balls up into the air and sounded like a Boeing 747 taking off. Erik didn't put balls into the machine but threw them at it so he didn't have to get within a three-foot radius of the thing. I didn't blame him one bit.

I left Erik with the therapist and walked a new mother to the parents' group room. I confessed to her that for months I used to run directly out the front door but that I remain with the other parents now. I wish somebody had walked me down the hall the first time, although I don't regret waiting until I was ready.

Parent group was uneventful, except that there was a fundraiser for a 3-year-old girl who suddenly suffered a stroke and developed cerebral palsy. She is now attending Erik's school but is not in his class. They had done the fundraiser selling Krispy Kreme donuts, and we all very politely but ravenously plucked them from the box.

When we went up the hall to pick up our kids, Erik was at the tiny table in a tiny chair, eating in front of a mirror like usual. What was very unusual was the fact that everybody was raving about how great he was doing. He had a greasy beef taquito in one of his large, freakishly strong hands and was enthusiastically swirling it into a small puddle of barbecue sauce. I couldn't believe my eyes. As most of you know, Erik usually holds food in one hand and stares blankly ahead for the duration of snack time. When I walk him out to the car, he usually still has a sweat-soaked cookie, cracker, or piece of fruit in a death grip. I certainly would never consider him a real carnivore, either. A cookievore, maybe, but never a carnivore. When I approached him yesterday, however, he smiled at me with a mouthful of overprocessed meat and said, "MMMMMMM!" He apparently also had a great day standing on a step and coloring on a paper-covered easel and repeating words spoken in class (he is usually virtually silent). I cleaned him up with a wet cloth, and he ran down the hall with me. We both drove home happy.

Since we don't normally eat greasy, fried food, I am bound and determined to make Erik taquitos at home. I found a recipe on line and will try it maybe this weekend. Of course, I will bake them instead of frying them, and Erik will think they are horrid. Oh well. More "key toes" for us.

Tuesday, November 07, 2006

Human Petri Dish

My son has a new diagnosis as of yesterday. For the past few days, he has progressively developed an impressive collection of gnarly red welts/bumps that first coalesced in one spot on his trunk and then slowly but surely spread down his groin, up his neck, and onto his face. The lesions on his face are more faint and difficult to see because of his preexisting eczema. I contacted the physician on call Sunday night and explained the situation, adding as a side note that he has WS. He cut me off and snapped, "Well, that wouldn't have anything to do with it! Does he have a sore throat?"

(long pause and sound of chirping crickets while I get my knickers out of a wad)

Hold on. Let me ask him. Oh, right. Like I said, he has Williams' syndrome. My mother and I had a good laugh over that one, because if we asked Erik if his throat hurt, he would happily repeat, "THROAT!" He doesn't answer questions yet, Dr. Dorkenheimer. I also mentioned it because he has horribly sensitive skin, bumpy eczema all over his body, and connective tissue problems that might be an issue with a serious problem like lupus, not to mention slight narrowing of a major artery with possible heart problems that might become an issue if he develops a fever. I wanted reassurance but was treated like I didn't have two brain cells to rub together. He then asked me questions I knew were to rule out shingles. When he was satisfied that wasn't the case, he gave me the sage advice to just wait and see if it goes away. It's a good thing I wasn't at a pay phone, as I would demand my 35 cents back.

Yesterday morning when I got Erik up, the rash looked angry and had spread even further. There was a rubbery lymph node behind one ear, and the ones in his neck were swelling. I called the pediatric office, and they got me in yesterday afternoon. The waiting room was quite an adventure. There was a little girl with her impeccably suited, fresh-from-work father. She was pressing an ice pack to her head and had a huge, wet bloodstain on her blouse. Another little girl jammed her hand between the moving panes of glass in the automatic door, and her mother leaped to grab her while yelling the "you-scared-the-crap-out-of-me-you're-not-in-trouble-I'm-trying-not-to-yell" yell. When they joined us in line, I turned to the mother and remarked I had not seen anyone move that fast all day. I squinted at her as I realized that I was looking into the familiar face of a very nice girl I used to know 30 years ago. We went to the same grade school. After we exchanged pleasantries and I made a mental note to myself to get her address from her grandmother, who lives down the street from my parents, I took Erik over to sit down in the waiting area, where he busied himself saying "HI!" to every miniature passerby. It's quite obvious kids think Erik is industrial strength weird, which used to bother me but I am now enjoying immensely. It's good for them. Erik doesn't know how to really talk in the conventional sense, except to make noises or say one word over and over. He knows billions of words, but he can't string them together yet. When he is trying to get someone's attention, he will either laugh like a loon, say "hi" over and over, repeat what they say, or just frantically make a lot of sounds. After Erik emptied out his bag of tricks running through this entire list of these things, one little boy asked his mother, "Why is that boy talking?" Erik was trying to get his attention and was making random sounds. When his mother didn't answer him, he repeated, "WHY?" When Erik heard "why," he said the thing that made the most sense to him and would surely include him in the conversation -- "Z!" He thought the little boy was reciting part of the alphabet. I smiled to myself and didn't give the dreadful little boy or his mother the time of day.

Pityriasis rosea.

That's what Dr. G. said his rash looked like. Well, sort of. The truth is, another physician came in and confirmed that they have no idea what the hell it is. If it is pityriasis, there isn't a physician on the planet who knows why it occurs, and I confirmed this by looking in my nursing dictionary. They assured me it wasn't contagious and that Erik could go to group today. When I asked Erik's doctor if it would look worse before it got better, she just smiled at me and said nothing. I was clearly in the presence of genius. Erik collected his Thomas the train stickers from the doctor, who is obviously quite smitten with my son, so we didn't walk out empty-handed after all.

Sunday, November 05, 2006

Nancy Dearest

Oh what a difference a little time to myself can make. Yesterday I found myself free to enjoy a day with no tight schedule, and I begun the tasks I have wanted to accomplish for over a week now. First of all, Erik slept in until well after 7 a.m. Since I was up at 4:30 a.m., I made coffee and watched an hour long program on home building that had nothing to do with world news (meth-buying/gay-bashing evangelists, Iraq, pre-election mud slinging, etc). I lit candles and sat in the dark. Fabulous! When Brian got out of bed, I located my lost box of Cappuccino Splash hair color under my bathroom sink. I was officially weeks overdue and had roots the same color as a geriatric mouse. I lounged on the couch in my official hair coloring attire (XXL Old Navy T-shirt and workout tights) while the chemically carcinogenic color soaked into my hair and I enjoyed yet more coffee. After another screaming lobster-hot shower, I saw Brian off to his football game in the valley and attended to our son's morning routine. Erik seemed cheerful enough to take out for a late morning grocery shopping excursion, so I put on some lipstick and perfume and headed to Safeway with my slightly gothic-colored hair. What was beautiful about yesterday is that I didn't have to hurry Erik to sleep and could escape the house with him. Usually time requires me to put him to bed at 9:30 or 10:00 in order for him to sleep before I have to work, and I end up trapped here all morning. In theory, this sounds good, which it normally is, but it does feel isolating on a daily basis when every minute of my afternoon is already spoken for and my free time is limited to being at home.

At the store, I bought a package of sushi from the deli for lunch and meandered through the store collecting greetings and good mornings from the other shoppers as Erik began happily addressing each of them. I'm becoming accustomed to this now and have learned it is perfectly acceptable to let him do the talking. I just smile various smiles, the type of which depending on who Erik is addressing. It's easier than I thought it would be, as he does all of the work! We couldn't find a mango for the shrimp tacos I planned on making myself for dinner, so I bought a small can of crushed pineapple instead. I recently invested in sturdy, nylon shopping bags, as I think the flimsy plastic ones are pure evil, so it takes an extra few seconds for the checker to set them up to fill them with groceries. She took her sweet time, anyway, to admire Erik, who suddenly decided to be a little shy. His hair is darkening but is still blond enough that we get comments on it often. It was a relaxing, enjoyable outing, and the world seemed to be in a cheerful mood. Upon arriving home, I fed Erik his standard morning snack of graham crackers, peanut butter, and milk, brushed his teeth, and put him to bed with his stuffed doggies.

The time had arrived to give this house a serious enema.

I washed all of the Pergo floors with vinegar until there were no more Erik drool/slime trails. I scrubbed toilets. I scoured sinks. I Fabreezed curtains. I evicted spiders. I changed the cat box. I did laundry. I scrubbed petrified drool off windowsills. I dusted. I shook area rugs. Once I had everything done but Erik's bathroom, I poured myself a glass of wine and sat down to watch a shamefully trashy movie on the women's channel. Halfway through my glass of pinot noir and five poorly-choreographed love scenes, I decided I was lonely and called my neighbor to come down to join me. We drank wine, watched the Food Channel, and talked incessantly about the rotisserie she bought, on which she cooks everything now. I had to laugh, because I suddenly felt like I was a creepily overenthusiastic audience member at the taping of a Ronco rotisserie infomercial (SET IT AND FORGET IT!). I love that neighbor of mine.

I worked with Erik on kicking a little bit yesterday as well. He kicked once! Today I will try it with a ball and bubbles. I also did some research on his constant wheel spinning. I allowed him to tweak doorstops and spin wheels yesterday while Lisa and I were having our girls afternoon but interrupted him now and then to do something else. Apparently, this kind of autistic-type activity is called "stimming," and everything I read concluded it is completely developmentally unhealthy. I have now heard his therapist use this term, and she stops him immediately from doing it. There are many theories as to why this occurs. I know Erik isn't overstimulated or stressed, so I discount that theory, at least in him. I tend to subscribe to the one that states it occurs when a child has trouble with visio-spatial tasks (classic in Williams' syndrome) and finds comfort in the feeling he gets by doing a repetitive activity, like spinning things. One researcher stated that it is believed that these behaviors release beta-endorphins in the body (opiate-like substances) which provide a powerful form of physiologic pleasure. One writer even used the word "addiction." Short of taking all of his cars away and removing every doorstop, I can't completely cease this behavior. Even if I did go all out-and-out Joan Crawford and removed every wheel and doorstop from the house, he would find things to roll or turn, such as shampoo bottles, Tupperware, appliance knobs, etc. I would have to banish all round items from our house altogether. I shudder to think about what would happen next. Removing these items would result in only sharp edges in this home, and I would probably cut myself a lot. In addition, Erik would undoubtedly take up another behavior to replace stimming, such as smoking, women, or gambling.

In summary, I am formulating a plan including exercises and games that will hopefully give Erik extra confidence in visio-spatial tasks while I limit his wheel exposure somewhat. Did I mention that part of this plan will be praying really, really hard? I'll do some of that, too. I can use stimming as a reward as well to teach him to do other things or distract him while I stretch his heel cords out. Hey, I guess I'm learning to make lemonade from all of these darn lemons.

Friday, November 03, 2006

Crack House

Time feels fragmented this morning. I start one task but am easily distracted by another. The interior of my house looks like any one of the homes featured on the TV show Cops, on which they use a battering ram to get through the door to reveal a bewildered, bloated, shirtless man on the couch marinating in Budweiser and surrounded by a sea of aluminum cans, cigarette butts, dirty clothes, and stale pizza boxes. Okay, so I'm exaggerating a little. However, it feels that way to a neat freak like me. As I was emptying the refrigerator of the last of its paltry contents and throwing them into the Crock Pot, I attempted to clean up the mess on the kitchen island, a delightful mixture of campaign flyers, junk mail, and miscellaneous smudges of last night's dinner. I next planned on swabbing down Erik's peanut-butter and graham cracker-encrusted high chair. While I was in the middle of my frantic cleaning spree, I heard the dreadfully familiar, rhythmic lurching of the contents of my cat's stomach. In a move rivaled only by Bo and Luke Duke sliding their pert, Wrangler-clad buttocks across the hood of the General Lee, I quickly traversed the kitchen counter and surrounding mess, grabbed generous, fur-covered handfuls of Gracie Kitty, and gently but firmly tossed her toward the hard floor (why do animals choose carpeting to vomit or poop upon?) -- just in time to see her spew mounds of half-digested premium cat food in its own mysterious, cat-generated gravy. There are mornings when it seems I do nothing but clean up vomit and excrement, and this is one of them. Sigh.

Maybe I feel off balance because we were gone last weekend. I don't feel caught up on anything. Last night I ceased working long enough to see an old childhood friend (Dave) compete on the game show Jeopardy. It was really strange seeing someone I used to know chatting with Alex Trebek. Even weirder was that he actually won, and now I have to watch it this evening to see how he does. I sometimes miss the old gang of nerds I used to hang with in high school and college.

Yesterday afternoon Bev came for our at-home therapy session. I am in the process of locating some jumbo-sized beads for Erik to learn to thread onto a string/tubing and a peg board upon her recommendation. It is difficult to choose the perfect toy because (a) I have something very specific pictured in my mind, and (b) the parts of any toy that are round will immediately be taken to the hard floor to be turned into a rolling wheel, instantly negating any educational value of the toy I so carefully purchased. I am in the process of teaching Erik to use both hands for tasks. He did quite well with Play-Doh this morning, but he doesn't often use both of his hands at once. I also worked on learning to kick and balance on one leg. He refused to do it but seemed to enjoy watching me dancing like a spasmodic Rockette. Bev once again mentioned my joining the Local Interagency Coordinating Council, and I am seriously considering it. I think they view us a bit like fresh meat, but in a good way. It's nice to feel wanted. Maybe this is another way I can feel like I am actually doing something for Erik and the kids in this community.

I also feel off balance because I am seriously struggling with Erik's wheel obsession, as it now greatly interferes with our outings. Yesterday I felt a little bit of that old fear of isolation because I realized how difficult it is getting to take him out. After leaving the car and taking a few steps with Erik, I realized I simply couldn't walk him into the building. Every car in the parking lot, the bicycle leaning against the building, and the medical center itself crammed with spinning wheels on wheelchairs, walkers, oxygen carts, office chairs, etc. seemed to call his name in a voice only he can hear, and he began throwing a miniature fit and stomping his feet when I would not let him stop for every distraction. I found it necessary to carry all 24 pounds of squirming, angry little boy. Unfortunately, I am carrying correspondence on letterhead I need to keep pristine and unwrinkled, and wrestling a screaming toddler I am unable to set down on the ground is becoming quite a challenge. Looking professional is also way out of the question. Do I strap him into a stroller? I could, but I have to maneuver through doors with the damn thing and since I am well over 5'5", I have to hunch over to push it along, creating a horrible case of scoliosis and a smattering of bruises from doors slamming shut on various parts of my body. He also leans over precariously against the restraints to grab the wheels as they spin, creating another safety hazard. What a pain. I am praying with every fiber of my being this obsession fades slowly but surely. How is he going to learn to walk in public when he doesn't walk in public?

I just feel off balance. It's not a bad thing. I just need to get my bearings again and feel like things are once again under as much control as they can be. When things change, it takes me a bit to adjust. In the meantime, I guess I'll mop the floor. Nothing cheers a girl up like the smell of Lysol in the morning.


Here's a true-blue recipe for good, old-fashioned comfort food. I am happy to report this is NOT approved by the American Heart Association.

Nancy's Love Loaves

1 egg
3/4 cup milk
1 cup (4 oz) shredded cheddar cheese
1/2 cup quick-cooking oats
1/2 cup chopped onion
1 tsp salt
1 lb lean ground beef
2/3 cup ketchup
1/2 cup packed brown sugar
1-1/2 tsp prepared mustard

In a bowl, beat the egg and milk. Stir in cheese, oats, onion, and salt. Add beef and mix well with hands. Shape into 8 loaves; place in greased 13 x 9 x 2 in baking dish.

Combine ketchup, brown sugar, and mustard; spoon lovingly over loaves while singing a happy song. Bake, uncovered, at 350 degrees for 45 minutes or until the meat is no longer pink and a meat thermometer reads 160 degrees.

Makes 8 servings. Great with potatoes and veggies.

Wednesday, November 01, 2006


I really enjoyed seeing everybody's sweet morsels dressed up for Halloween this year, both in person and on line. It was the first Halloween I really got into the spirit as a mother. Last year Erik had an adorable brown bear costume hand-crafted by Gramma, but life was very different a year ago, as we were beginning to suspect something was wrong with Erik, who wasn't feeling great and was still adjusting to reflux medication. He was a cranky little bear. This year Erik's school invited the children to come to class in costume. Since it was 6 degrees when I got up, I decided it was a good day for Erik to wear a fuzzy bee costume. I put some black tights on him and the costume I purchased on eBay. It was a bit short, so his Lycra-clad bottom (or lack thereof) and long, skinny legs were exposed for all to see. He made people smile at school. There were a couple other kids in costume, including a tiny girl dressed as a flower, a sleepy lion, and an autistic ninja warrior (they did have to confiscate his sword). After our classes, I took Erik on my rounds to see Gramma and Boppa at work at the museum and then to the medical center to pick up work, where I got him to say "BUZZ" and make the patients in the crowded waiting room giggle. When I looked in the rearview mirror as I drove around town, I could only see the fuzzy yellow orbs atop his antennae bobbing up and down. Too fun!

In the evening, Dominick came over dressed as a lion after taking quite well to the concept of trick or treating. I am hoping Erik will know that it's Halloween next year and enjoy it with gusto right along with Dominick. Some neighbors we do not normally see surprised us with a visit to admire Erik's costume and give him a caramel apple. Too sweet! Next year will be even better. By then, I may even get out actual decorations. Life is slowly returning to normal.

I ordered Erik's new shoes on Friday. By the time we returned from our trip on Monday, they were waiting on the porch for us. Erik wore them all day yesterday without any trouble at all, and I can't say enough how much I love them. It was nice being able to fasten his shoes normally, and they are his true size, not two sizes bigger like the ones I originally purchased to fit over his hardware.