Erik Quinn: The Heart of a Family: June 2007

Saturday, June 30, 2007


Entering yet another post from my blog in the "This Blog Blows My Dress Up Contest." If you are funny, you should do the same!

Labels: ,

Friday, June 29, 2007

Quote of the Day

You have to open your eyes and see us for who we are, not what you want us to be.

-- Jean Ann (an adult with Williams syndrome)

Labels: , ,

Wednesday, June 27, 2007

Story Time

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

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

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

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

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

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

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

Labels: , ,

Tuesday, June 26, 2007

What is Williams Syndrome?

These cards I made serve as a quick answer to a question that is still difficult for me to answer. I have been looking for a standard script to spread awareness without becoming emotional or stuttering out a lengthy explanation and find this is the best method for the time being. The curious and concerned can look additional information up later themselves using this card, yet this method is anonymous enough that I can give them strangers who, heaven forbid, treat either of us rudely out of ignorance. I purchased a pretty silver cigarette case in which to store them in my purse so I will have them with me at all times.

Labels: , ,

Sunday, June 24, 2007

National Champions!

I had a long, lonely weekend, as Brian left town with three friends to camp in the wilderness. I still managed to get to my parents' for a backyard barbecue and had a couple friends over this afternoon to watch the Oregon State game and barbecue lunch. Sammy was here to spend some quality time with Erik, and he seemed more relaxed than ever around her. She played a little harder to get as well, except for the time she embraced him from behind as he stood eating his lunch and they went over backwards. Erik simply stared at the ceiling and kept right on chewing, which made me laugh. I barbecued shrimp and some chicken skewers served with spicy satay peanut sauce and a nice fruit salad. Brian's friend Ben will stay with us tonight. He is down the hall in the guest bathroom showering off the thick, protective layer of dust the desert left on him now, and Brian is downstairs packing the fish Ben caught in freezer bags and preparing a load of laundry. I have sorted and packed away their collection of leftover light beer, sausages, cookies, and chips. I made certain the Doritos and chocolates were immediately stowed away out of my sight, as last time I checked I was down 12 pounds! The boys looked homeless in their unshaven and absolutely filthy state from three days in a makeshift camp with no other humans in sight, but they were grinning from ear to ear like teenagers when they arrived. They are already talking of making this a new yearly tradition. There is nothing like having friends with a history that stretches back for decades, and I am happy to say I am lucky enough to have friends like that of my very own.

Now I must wait to hear the tales of their adventures. I am happy they didn't encounter any of rattlesnakes on this journey, but I get the impression there are even better tales to be told over our morning coffee tomorrow.

Wednesday, June 20, 2007

No Singing the Blues

The following is an article I received from our dear family friends in Iowa. Thank you so much!

No Singing the Blues

By Fred Love
The Gazette

Article published: Jun 10, 2007

CEDAR RAPIDS Several audience members wept as Gloria Lenhoff sang a selection from the operatic masterpiece “La Boheme.”

A few minutes later, with an accordion on her lap, she wowed the spectators again with her take on Elvis Presley's rockabilly classic, “Blue Suede Shoes.”

Gloria, 52, a renowned classical singer with a repertoire of thousands of songs, has Williams syndrome, a rare genetic condition that causes severe mental disability.

She has an IQ of 55, a crystal-clear voice and charismatic warmth - a combination that stunned a nearly full lecture hall at Coe College's Hickok Hall on Saturday.

Howard Lenhoff, Gloria's father, explained between songs that many who have Williams syndrome possess extraordinary musical abilities.

To prove his point, Carol Malerich, 13, of Marion, who also has Williams syndrome, took the stage to give a solo piano performance. Carol has taken classical piano lessons since she was 3 and learns all the songs she knows by ear, said Leah Malerich, Carol's mother.

The Lenhoffs visited Coe as part of the college's annual alumni reunion held every June.

Howard Lenhoff, who received a chemistry degree from Coe in 1950, is a professor emeritus of biology at the University of California, Irvine, and an adjunct professor at the University of Mississippi.

The author or editor of 13 books, including “The Strangest Song: One Father's Quest to Help His Daughter Find Her Voice,” Lenhoff and two others were to be presented with Coe's Alumni Award of Merit last night.

Lenhoff said he encouraged Gloria to focus on music, where she knows she can excel, rather than focus on areas where her disability would hamper her.

“Take the positive things and get training in that and do it,” he said. “Don't try to be a jack of all trades.”

Gloria Lenhoff has taken professional voice lessons since she was 11, and she first picked up an accordion at age 12.

Since then, she has performed as a guest artist with the Los Angeles Opera and the Boston Lyric Opera and continues to perform at Opera Memphis.

“Whenever I perform somewhere, I say to myself that music is my first priority,” she said Saturday.

Labels: , , , ,

Tuesday, June 19, 2007

Flip Flops and Lemon Drops

I'm not sure what the deal is lately, but I sagged back into a pretty severe emotional slump. It's strange feeling this way when the weather is so incredibly gorgeous. I will give myself some time to see if this cycle passes before I panic or run to the doctor for happy pills. I'm sleeping, exercising, and eating well, so there is not much else I can do. Looking at the last couple of weeks, I suppose the end of the school year and the major transition we are making are catching up with me. I feel slightly lost. We have no home visits or school for a few weeks, and I actually miss them. Our private physical therapy continues. This week we hit the pool. I believe Erik and I are bored, plain and simple. I find myself isolated here at home these days. Brian is working on his truck in anticipation of buying a little travel trailer, and I hope we can take the comforts of home with us and escape at the same time with our friends.

I am happy to report I have lost nine pounds with the help of Weight Watchers. Sadly, this puts me back to my baseline, before-baby weight, where I should have been this entire time. I have approximately 13 more to go from here and am confident I will be there soon, as I have never really put much effort into actual weight loss. The key is learning to eat like a girl again.

The 22Q13 (Phelan-McDermid syndrome) fundraiser last weekend was a fabulous affair. I found a pair of black capris at Macy's, but the blouse I had in mind never materialized, so I retrieved a little number I had yet to wear in my closet, gritted my teeth, and bared more skin than I usually do. I finished the ensemble with the black platform flip-flops I purchased in Hawaii. I picked my mother up, who looked equally smashing, and we drove to a gorgeous lodge atop the hills for the event. The "Welcome to Holland" poem and some photos of my friend's daughter were posted just inside the door. Seeing this triggered some unexpected emotion in me, and I was relieved to see my mom's eyes were watering and threatening to spill just like mine. Whew. We shook it off and were immediately welcomed by my friend, who gave us the rundown on the layout there, and I felt instantly comfortable. We ventured into a room containing tables of silent auction items, from free hair removal sessions to extravagant gift baskets wrapped in layers of glossy cellophane. I bid on a two-night stay in a cabin in the woods south of town and a dark bottle of cabernet sauvignon.

We spotted baskets of brightly colored flip-flops overflowing onto the dark floor as we made our way further into the lodge, and we were encouraged to select a pair to take home. Tables showcasing the culinary talents of five different local restaurants greeted us, including glossy pastries, fresh fruit, and tightly rolled sushi. Once we dished up, we were very efficiently provided martini glasses containing cloudy, chilled lemon drop cocktails. We headed out to the patio to join milling schools of women relaxing there. We found seats at a metal bistro table in front of a polite trio of young men playing jazz. Tucked discretely in the back corner of the patio were women enjoying pedicures and massages. Bartenders from the local martini bar poured what seemed to be a constant stream of lemon drop cocktails into glasses with sugar dust clinging to the rims.

It was a delightful way to spend a sunny afternoon, even though the two of us never seemed to really forget the reason we were there. The people I have met through our son are wonderful, and I am so very thankful I can call them friends. It was a nice opportunity to share this particular experience with my mother. My friend's little girl has attended Erik's special education class, and Erik is especially fond of stealing her little metal walker. Amazingly, this little girl is only one of approximately 300 people in the entire world with this particular genetic deletion. I had the honor of meeting my friend's sister-in-law, who sat down at our table, and her mother-in-law, who told us she was gearing up to run her very first marathon, the Portland Marathon, in her granddaughter's honor. From heartache comes amazing strength from everyone, including grandmothers. Watching my mother connect with this particular grandmother was wonderful, and it reminded me how difficult our journey has been on my entire extended family and friends. They need support, too. Amazingly, there is a nephew in this family with Williams syndrome as well. He lives in New Zealand and is reportedly doing well, living on his own and attending a technical school there. The updates on his life have provided me a great deal of hope.

We each selected a pair of flip-flops on our way out the door and said our goodbyes. I hugged my friend and made sure her daughter would be attending summer session with Erik. She will be there. After that, we may go different directions, but I am truly thankful for the special connection we will always have.

As we drove home, we both agreed we would attend this event next year.

I better start looking for that blouse.

Labels: , , , ,

Monday, June 18, 2007

A Look Into My iPod

I'm not in the mood to write much today, so here's a random meme for your enjoyment.


"You Get What You Give" by the New Radicals. I like this song because my son has the "music in him."

But when the night is falling
And you cannot find the light
If you feel your dream is dying
Hold tight
You've got the music in you
Don't let go
You've got the music in you
One dance left
This world is gonna pull through
Don't give up

"The Sweet Escape" by Gwen Stefani, my favorite singer of all time. I'm always in the mood for this song. It's my little sweet escape.

"I Just Want You" by Ozzy Osbourne. That's hot.

"Head Over Heels" by the Go-Go's. Memories.

"Cumbersome" by Seven Mary Three. I just like how this song makes me feel. It's a dark song about wanting someone but not meeting up with them somehow in a relationship...feeling awkward and not being able to do anything right and just throwing up your hands. I play this one when I'm in a dark mood. I saw this band in Portland and learned all about the concept of a mosh pit.

"U + Your Hand" by Pink. In sharp contrast to my dark songs, I play this one when I am feeling full of it in a happy way. It makes me feel like I'm up for anything.

"Slipped Away" by Avril Lavigne. For the babies I just couldn't hold onto.

I hope you can hear me
I remember it clearly
The day you slipped away
Was the day I found
It won't be the same

"Ode to My Car" by Adam Sandler. The language in this song is horrendous. With that said, if you are ever having a bad day, go to iTunes and download this song immediately. Try not to laugh. I dare you. One of the most hilarious songs ever written, especially if your bad day started with car trouble. One of my all-time favorites. It's my personal tribute to my 1980 Volkswagen which ran when only when it felt like it and in which a member of the Idaho State hockey team threw up his 7-11 nachos (don't ask).

"Don't Worry Baby" by the Beach Boys. Soothing and calming song about a young relationship where there are no more serious worries than cars and feeling insecure. Ahhhh.

"Juicy" by Better Than Ezra. If you see me bee-bopping in my car sitting in traffic and Erik's lips mouthing the word "juicy," that's what we are listening to. This is, by far, Erik's favorite song from my collection.

"Close to Me" by the Cure. Jim Carrey once said this song made him feel like he was being tickled. And it has the same effect on me. There is a little of everything in this song, and it is a surefire mood lifter.

"Better Days" by the Goo Goo Dolls. Sums up how I feel right now. Sure, life can be incredibly crappy, but there is always hope. Right? Right?

"A.M. Radio" by Everclear. If you grew up in the 1970s, this song is for you. I have a weakness for these guys because they're out of good old Portland, Oregon.

"Sweet Emotion" by Aerosmith. Sexy, sexy, sexy. I love the way this makes me feel. Best at full volume.

That's all for now.

-- N

Friday, June 15, 2007

Of Course

You know you're old when the teenagers next door are having a rip-roaring party and you look at your husband and say, "How can they possibly have a decent conversation in that house with all of that racket?" Brian just walked up the lane to investigate. I told him to let them know I would either like them to turn the music up to a level where I can hear more than just bone-rattling bass or down to where I can't hear it at all. We were cool enough to wait until 10 o'clock to put in our request. I would go over and join them around their bonfire but fear some of the kids' litigation-happy parents or the fact I will look like the father who used to hang out with us in the dorms drinking beer and inevitably ended up sobbing, telling us that college would be the best years of our lives. Shudder.

I am a bit of a head case. I stood on the back porch today and screamed at the landscaping trucks from the business next door going light speed and sending up clouds of desert dust to drift through my open doors and windows. When they ignored me and my giant gestures, I only yelled louder, wishing I had taken a Spanish class instead of four years of French so I could curse accordingly.

Things have been going well this week. I have upped my workout regimen a notch and am feeling good. I am actually finally getting smaller with a major tweak in my diet and find myself fairly content emotionally with a new reserve of energy in the evenings. I was in the middle of my workout this morning when I realized Erik and I needed to be at the stables. After a light myocardial infarction, a quick shower, and a fresh coat of pink lipstick, we arrived just one minute late for our appointment. Erik insisted he would rather ride an ATV instead of Foxy-Horse, but he didn't have much of a choice today. As I pulled into the parking lot by the barn, I saw Ms. S, my "Earth Angel," and her little girl with Rett syndrome. Of course. God works in mysterious but less than subtle ways. We waved to each other, and I went to meet her inside the barn to chat. She informed me that the young woman helping lead Erik's horse today was actually the first cousin of Mary, the girl with WS that was mentioned in the editorial I recently posted. Of course. Apparently she saw WS in Erik's face the moment she saw him and asked questions about him. She thinks he looks just like Mary did when she was younger. As it turns out, Mary will be heading off to school back east in the fall. Ms. S informed me that Mary's mother knows about me and would like to speak with me, so I swallowed the lump in my throat and gave her my last name and phone number. Now I just wait for the call.

I'm very happy I am making connections here, and I have heard a lot about this woman lately that has alleviated my fears. I was reluctant to meet her at the beginning of this, but now I wonder if it's because she seems to be a lot like me. She is a shoot-straight-from-the-hip, tell-it-like-it-is sort of gal. Today was positive but still made me feel raw and vulnerable. That's not necessarily a bad thing, but I am glad that feeling is passing now that the sun has set. After all, it's a pretty intense way to feel for any extended period of time. My mother and I are headed to a fundraiser tomorrow for the little girl in town with 22Q13 syndrome. The party is exclusively for women, and flip-flops are mandatory to fit the "Flip Flops and Lemon Drops" theme. There will be a jazz trio, bartenders mixing up vodka lemon drops, five different fancy restaurants catering the event, mini-pedicures, and chair massages. I have to run to Macy's tomorrow to find some pretty but summer-casual attire, as I usually dress like a bit like an Amish woman, even during the summer.

Brian is now back from his mission next door. In a likely very half-hearted gesture of goodwill, I was apparently invited to drink beer around the bonfire with a small group of pubescent girls while 30 people do God-knows-what inside the house. I imagine that they would be more comfortable keeping an eye on at least one of us at all times so we don't ruin their little games. I noticed the scent of pungent but sweet smoke floating through my office window earlier, but that seems to have ceased now. At first, I told Brian that someone was burning garbage and voiced my concerns about the wind and dry grass. I finally identified the vaguely familiar scent and smacked my forehead with my palm. Of course.

Boy, I really am getting old.

Labels: , , , ,

Wednesday, June 13, 2007


The following is an editorial from the "other WS mother" in town. Again, I find it strange I am now receiving signs like this that gently remind me of this other family's presence in town when I heard and saw nothing of them for two years. Maybe my eyes, ears, and heart are more open than they used to be.

Anyway, it's a beautiful piece of writing, and I would like to share it with you.

Note: For the purposes of anonymity, I have very reluctantly removed her name and identifying information. I wish I could give her credit and say thank you for giving us all hope. Hopefully, I will be able to in time.

-- N


Last week, (this paper) reprinted a story from The New York Times about the efforts some families are making to persuade others that having a child with Down syndrome is not the end of the world. That story's been on my mind ever since, in part because of my own family's experience with a similar issue.

Thanks to simpler, earlier genetic tests, it's now much easier to determine if the fetus a woman carries has the chromosomal irregularity that causes Down syndrome, a condition that generally causes mental retardation and with which most Americans are at least marginally familiar. In fact, the American College of Obstetricians and Gynecologists has begun recommending that all pregnant women be offered the opportunity to screen for Down syndrome, a dramatic shift from the previous position that saw the offer come only if a woman were 35 or older. Of those screened, 90 percent who carry a baby with Down syndrome have chosen not to see the pregnancy to term.

I can understand why. Most people have no real understanding of what it is like to live with a child with intellectual and physical problems, and it scares them. Kids with Down syndrome often have heart problems; families worry that they'll spend too much time, too much money and too much love on a child, only to have it slip away in the end.

They worry, too, about such things as "quality of life." How can a kid who may or may not ever learn to read really get much out of being alive, they may ask themselves. If life is a constant struggle, they may believe, it might well not be worth living. They worry about the future - how will a child with Down syndrome live as an adult, and what will happen to him or her when the parents are gone.

And, perhaps most important, they worry about their own ability to do right by a child who comes into the world with built-in disadvantages.

Each one of those issues is worth considering. I know, because my youngest daughter, Mary, has a genetic defect that causes Williams syndrome, a condition that, like Down syndrome, comes with medical and intellectual challenges that never go away.

I also know, however, that each one of those issues can be larger in imagination than it is in reality. Mary is very lucky medically. Her health problems have been relatively easily dealt with, and we've kept up with them as they've cropped up. We have not had to face heart surgery or any other major health crisis, and I'm very grateful for that.

When Mary was diagnosed at age 3, we were told she would be able to make her needs known but not much else. She was unlikely to read or to engage the world around her in any serious way. We went home devastated.

The intervening 18 years have proven the doctors wrong on a daily basis. Mary reads, and she reads darned well. She is fully independent in such things as personal care and can prepare her own meals if she must. She makes her own appointments on Dial-A-Ride, manages her own medications, takes classes at (the community college) unaccompanied, and so on. Yes, she needs help with finances, but, then, sometimes so do I.

And, most important, she's a delight to be with. Going to a restaurant with Mary is a treat - we almost always run into some non-disabled young man or woman who attended (high school) with her and wants to chat. She's warm, sympathetic and capable of deeper insights than you might expect. Her reactions to the ups and downs of life are normal, though her way of expressing them might strike some as quirky on occasion.

Rearing Mary has had its challenges, to be sure, but, then, so has rearing her non-disabled sister. They've been different challenges: I worry more about Mary's ultimate place in the world than I do Anna's, but I worry more about Anna's ultimate happiness than I do Mary's.

Children, disabled or not, do not come into this world with guarantees, the way cars do. Rather, we discover as we go just what arrived in that squalling little package, and most of us learn when we must how to deal with the differences that make each child unique. For a kid with an intellectual disability, those differences are written plainly on their faces; for others, the discovery might take more time and effort.

Mary and those like her make the world a far richer place, I believe. They have lessons to teach - about patience, about the value of work, about perseverance. They have love to give, and laughter, and, yes, tears. I cannot imagine what a gray old place this would be if all kids with discoverable problems simply were never born. I do know we'd be a poorer world for it.

Labels: ,

Monday, June 11, 2007


There is something about talking to my parents that makes me feel like I'm 12 years old all over again with no control over my emotions whatsoever. Over the years, I have cried to them about everything from junior high school gossip to my career choices. Strangely, it doesn't seem to matter why I have called or stopped by to see them in my childhood home. If something is bothering me, I look into their faces and it all spills from me, whether it's something I intended to share or not. I could call to ask my mother about how to best thicken gravy and end up sniffling into the phone and talking about something much closer to my heart. However, when I step out their door or hang up the phone after visiting with them, it seems that I never fail to feel better and am usually smiling. I don't know what I would do without them.

For the first year of Erik's diagnosis, it seemed that every time my parents came to our door, I was in the middle of a big, ugly cry. It was part of my daily routine. This went on for months and then almost a full year. A few months ago when my mother came to pick up Erik, she said it was nice I wasn't crying all of the time anymore. Now that I think about it, I'm not sure why I didn't succumb to simple dehydration. I did cry a lot, and it was probably very difficult for her to see me that way.

Strangely, I now find myself in tears less than I ever have in my life. My sloshing reservoir of sloppy emotion seems much lower than it used to be. However, I won't worry about this phenomenon unless the tears stop completely, in which case I will declare myself completely dead inside and will check into a facility with a soothing-sounding name and baby blue paint on the walls. I'm simply a more seasoned, weathered version of my former self. There's good and bad that comes with this. I'll never be the same. However, I don't sweat the small stuff so much anymore when it comes to my child. The other day I was checking a label on something I was about to share with him as a treat. My eyes quickly scanned for the words "aspartame" or "saccharine" when I suddenly thought, "Oh gee, Nance, one spoonful isn't going to kill the kid. He's missing 25 freaking genes for Pete's sake. I think artificial sweetener is not his biggest problem. Let it go." How awful is that? I haven't worried much about terminal cancer or the normal variety of sudden death in my son. The usual worries that accompany motherhood are still present, of course, but I hardly feel them. It's sort of like trying to tend to a paper cut in a web space between your fingers when someone walks up to you and suddenly kicks you as hard as they can in the shin with the tip of a steel-toed boot. Oh, sure, the cut is still there, but you sure as hell aren't thinking about it anymore. All you can think of is the throbbing pain in your leg.

Now that the tears have dried to an acceptable level to where I can enjoy time in public without rivers of snot running down my face, I find I am actually thinking clearly and honestly. At least, that's my perception of myself. You may think I'm crackers, and I'm okay with that.

Today I was talking to my mother as Erik made us laugh over and over fetching books for his Boppa to read to him and showcasing his wonderful personality. As I was talking, out came the thing that was bothering me most at the moment. Amazingly, my eyes remained desert dry. I confessed to her that I was terrified because the time was coming when Erik wouldn't be cute anymore. In short, I asked her, "Then what?"

There was no hesitation on her part. She said the perfect thing to say at the time, which was, "I don't know. He'll be different."

Neither of us know. Since cute is pretty much what he is and does best at this point, the thought does indeed terrify me. Yes, I keep telling myself I will always love him, but I can't imagine myself loving him any more, and I'm now questioning my own capacity to love him in the future. After all, motherhood wasn't the most natural thing in the world for me, and it took months to bond with him as a baby. I have always wanted to give this kid the moon, but sometimes I just don't know how.

This is the reason I fear meeting other WS adults. This is difficult for me to write, but it's the truth, and I refuse to pull any punches here. I have to face my fears, as my boy is growing like a weed. At a BBQ we attended last weekend, he was easily taller than a fellow partygoer who was 3 years old.

I'm afraid of losing cute.

Will it happen gradually, or will we look at him one morning over the breakfast table and see a lanky stranger? I believe Brian and I have been quietly mourning the passing of Erik's baby phase. I sat on Erik's little bed the other day with the blue box I keep on the top shelf of his closet that holds a random collection of things I put there for safekeeping. This includes the notebook in which I recorded each hellish feeding for three months. Okay, so that's not a good memory, but struggling along with such a precious, tiny creature is a powerful memory I don't want to let go of. I want to keep the memory of me and my baby locked together trying to survive yet more wee hours of morning, both of us in excruciating pain with tears on our cheeks. I returned the notebook to the box and retrieved the powder blue pacifier that was always in his mouth as he slept and kept the burning acid down in his throat. My fingers passed over the worn leather slippers with the smiling monkeys on them and the jagged holes from crawling and dragging both of his big toes, the cards we received around the time of his birth, and the little photo book my mother made to document that first year of his life during which we were steeped in ignorance and before I set foot in this strange, new world. It was hard to close the box, but keeping it open was even more difficult.

I came to the conclusion that these kinds of changes generally happen gradually and mercifully. After all, that's how my baby disappeared. His legs began to lengthen and his hair began to darken. The chub in his cheeks began to drain away, and he began bonking his head on things around that house that were formerly safely out of range. Now there is very little baby left to see. There are times I creep quietly into his room and watch him sleep, when I catch just a glimpse of my baby boy with his lips slightly open and his body curled up next to his stuffed animals.

I have been thinking a lot about change lately. For example, the whole concept of pregnancy, while it was something I wanted desperately at one point, created in me a gigantic case of the heebie-jeebies before my personal experience with it. I read about the weight gain, the fact I would have 50% more blood coursing through my veins, and how my baby would compress various internal organs, causing me great discomfort and trouble breathing. I went into it knowing these things and was very pleasantly surprised. Because these changes were so gradual to me, I hardly felt a thing. Getting up 10 times at night was perfectly natural and acceptable. People I hadn't seen for weeks were amazed at my increasing girth, but the changes were indiscernible to my own eye. When I answered the phone gasping for oxygen after a trip down the stairs, someone asked if I was okay, and I had no idea what the caller was referring to. A friend of mine found it quite amusing when he told me I didn't look pregnant at all and I enthusiastically agreed with him. Apparently, he was being sarcastic! Because of the gradual nature of these massive changes, there was very little discomfort, and I was able to enjoy a full 41 weeks of pregnancy. I am so thankful for every moment of this experience.

I imagine the changes that come as Erik grows will continue to occur slowly, too, allowing us to adapt to any new challenges that come with having a growing boy who is different. I imagine that even at this point, challenges that likely look massive from the outside are likely much less overwhelming to me, as I am accustomed to them. I anticipate many new challenges for us to face and adapt to. In the meantime, I will face my fears as best I can. What is most important is that looking at this kid makes my heart swell with love.

I just pray that I never lose that.

Labels: ,

Saturday, June 09, 2007

Facing the Future

As most of you know, I'm a big chicken when it comes to meeting an adult with WS. I'm technically quite ready now, but it's still not something I'm excited about. Why? I have been thinking about it lately, and I have concluded that even with the therapy appointments, home visits, and special ed, living in complete denial is still an option at this point. I have grown accustomed to these things, and they are normal to me if I don't stop to think much about them. Erik can initially pass as a typical, adorable toddler quite easily if his orthotics aren't visible and he is on the quiet side. As he ages, however, WS will become more apparent in several ways. I admit that the fact WS will become more apparent in his facial features used to rip my heart into pieces. The fact that he will look less like us and more like the face of Williams is hard to bear, but I have come to terms with that, for the most part. I am comforted by the fact that he will retain his personality and sense of humor. He will, of course, likely always look a lot like me and Brian, too. I keep telling myself that he will always be Erik, through and through, and that my feelings for him will only intensify, if that is even possible.

My friend Shaena carries a photo of Erik in her wallet, and when she was on vacation, a member of her extended family whom I have never met saw it. Without knowing our story, she immediately knew Erik had WS. It was the first time someone had "read" Erik's face since I did the very first time before our diagnosis. However, she was quite familiar with this face. Her 1-year-old brother died of severe complications of WS. From Shaena's account, it sounded like this girl felt almost as if she had seen a ghost and that it was a little bit of a shock to her.

The WS convention is next year, and I am going to be there. The thought of being surrounded by those with WS and their families is more thrilling than anything I could imagine, yet there is fear in me, too. I have no doubt it will be a completely overwhelming, bittersweet, emotional experience I will remember for my lifetime. By that time, I'll be as ready as I will ever be. I will hopefully meet some of the wonderful families I have grown to love on line and be able to put my arms around them for the very first time. I think if there is one thing we have learned in our blogging neighborhood, it's that it is indeed quite possible to miss someone whom you have yet to meet.

My friend Aspen met a young adult with WS recently, and she wrote a beautiful post about the experience that has haunted me for days now. She mirrors a lot of the feelings I have about the possibility of experiencing this for myself, and I hope she doesn't mind me sharing her experience with you.

I miss you, Aspen -- and I can't wait to meet you.

Read about her experience here.

Labels: , , ,

Friday, June 08, 2007

Aches, Pains, Teeth, & Gains

Don't tell me how to live my life
Don't tell me how to pray
Don't tell me how to sing my song
Don't tell me what to say

Cuz I believe that miracles
happen every day
I don't care what you say,
I'm gonna do it my way

-- "My Way," Los Lonely Boys

I have to make this short, as my job has given me a moderate case of tendinitis, the likes of which I have not experienced since my days of shoveling pizzas in and out of an oven at my job in high school. I will purchase a brace today. I haven't had to wear one since I started transcribing 10 years ago. Hopefully, with TLC it will improve slowly. I hope so, as I have a short story in my head to write for another contest in San Francisco (Thanks, mom!).

The transition meeting went well. We chose Erik's preschool class and met the new members of Team Erik. I loved all of them immediately, of course. I sometimes feel like we do not have much support in town, but if I sit down and think about it, we have what we need. These folks are highly qualified and caring. They did the appropriate amount of oohing and ahing over Erik's photo and seemed to be curious about his syndrome, asking if there were videos, etc. One had even worked with someone with WS. I stalled a very long time chatting after the meeting because Brian left early to take Erik to the dentist, and I didn't want to witness that. The exam was reportedly very rough and made Erik cry very hard, but his teeth looked so good that no coat of lacquer was required. Glory be!

I spent an hour in the grocery store during Erik's pool therapy yesterday. As soon as I put him in the pool with Ms. G., he said, "Buh-bye, mom!" I was free to go. I bought a new oxygen-filled dish detergent and apple-scented candle for Erik's bathroom. I love my time in the grocery store. If loving Mr. Clean is wrong, I just don't wanna be right.

Lastly, Erik's language skills are sharpening. For instance, I was pouring some lemonade into a glass when he walked by this week, and he said, "Yellow water." Later he was in his chair threatening to tilt his glass over instead of drinking its contents as he enjoys doing. When I tried to take it away from him like I usually do, he glared at me and said, "Let go, please."

It was a hard week, but it was good.

Labels: , , , , , ,

Wednesday, June 06, 2007

Roller Coaster

It's too early again. I believe the first time I squeezed my eyelids together in order to see the red numbers on the dark face of our alarm clock, it was four-something, and it's almost five now. I have made it two nights in a row without Unisom, but I'm tired without it.

Yesterday Erik graduated from the Early Intervention Program (EIP). We stopped at the grocery store for juice and muffins on the way across town and headed to the end-of-the year party at his little school. The street there was lined with cars, as if there was a wild party going on. Apparently the event included the children and parents of both weekly classes. Brian had left work for the party and appeared around the corner of the Jeep as I unloaded Erik. As he saw his father, his hands instantly began flailing about -- a cross between jazz hands and an impression of a cockroach trapped on its back. I call them "happy hands." As he ages, I see them less and less, and I smile when this kind of pure joy manifests itself physically like this. We made our way into the building and up the hallway to the classroom, where pastel-colored balloons hung from the ceiling on limp strips of lavender curling ribbon and tables were set up for the children to gather around and put their hands in sand or decorate paper gift bags filled with small toys. Brian and I retreived Erik, who ignored the other children and began pushing a toy mini van around the room, sat on the floor, and went through the motions of coloring a bag with a brown Crayola pen, despite the fact he had no interest at all in this activity. After he pushed a doll stroller around, stole a classmate's toddler-sized walker, and spun every wheel he could get his hands on, we moved further down the hall to the gym, where more parents stood around looking junior-high-dance awkward and children ran back and forth across the padded floor. I finally saw the familiar faces of my parent group in the corner and made my way over to say hello, eyeing the counter loaded with Jell-O cups, cookies, and pretzels. A tiny girl with spiky, white-blonde pigtails made her way into the room holding onto a metal walker, slowly and deliberately putting one perfectly white tennis shoe in front of the other. Suddenly I remembered why we were here again, and the disabilities that aren't obvious to me anymore sprang back into focus. I saw painfully thin, awkward limbs, temper tantrums spilling hot, adult rage from tiny bodies, a deformed limb encased in a plaster cast, and a boy who smiled but never spoke. As for Erik, he allowed his father to place him atop a toy with a sticker that said "Roller Coaster to Go." It consisted of a plastic car atop a bumpy ramp, and Erik rode down it several times with Brian's help. Brian and I both had a laugh about the dubious safety of such an item, but Erik seemed to like it. Beyond that, he showed little or no interest in the table filled with water and toys that most of the children found irresistable and steered clear of the other children when he could, although their squeals of delight did not upset him like they used to. After I shared a very dreadful, store-bought chocolate chip cookie with Erik, the three of us went outside to the playground to watch children dip giant plastic wands into bubble solution and spin, creating soap bubbles as large as our heads. Again, Erik showed only slight interest and instead found a plastic bulldozer, which he silently pushed around nonstop until his physical therapist finally took it away from him so he would be forced to find another activity. His face immediately turned tomato-red, and his bottom lip stuck out in a silent bawl. We managed to coax him up onto the play equipment, where he backed away from the other children or skillfully used the slide as an escape ramp as if he was evacuating the burning wreckage of a plane, only to have us place him back atop the structure. Finally, we went back inside with the other children to receive our diplomas, sing our goodbye songs, and gather our things. I reassured myself by thinking about all of the transitions and changes our son will go through as time goes on. This is just the first of many, and I am thankful for that. I just wish sometimes I wasn't so freaking nostaglic about it all. I detected genuine emotion in a few of the therapists there, who said they would miss Erik terribly and thanked us for allowing them to work with him. One of his therapists was obviously quite relieved we would at least be in the same building in the fall so they would see him in the hall occasionally. At the beginning of this, I wanted people to love my child, but I find that Erik is indeed very special with some amazing qualities that surpass all of my expectations. I can see that now. He is simply wired to love people and be loved, never seeming to forget a name or face, even at his young age. In fact, although he didn't speak much in this noisy environment, when a beautiful little girl toddled by, he quietly murmured "Angie" before he went back to playing with his toy. As I didn't recognize this child and concluded she was likely a sibling of one of his classmates, I became curious as to whether he was correct. I crossed the room and asked another bored-looking mother sitting in a chair what this little girl's name was. She said, "Oh, that's Angie. That other mom babysits her during the day." Amazing.

In two hours, Brian and I will go back to the school alone and meet with the panel for his first transition meeting. One hour after that, my own father will bring Erik to me and Brian in the parking lot down the street at the dentist, where my favorite silver fox, Dr. Mike, will instruct us to hold our screaming child down so he can put a protective lacquer on Erik's teeth. I will most likely fight back tears as I do this. Pool therapy is tomorrow, and I am looking forward to Erik greeting the physical therapy staff by name and then having an hour in a nearby grocery store to be alone in the cleaning products aisle.

This week has been a "Roller Coaster to Go" for me as well.

Monday, June 04, 2007

Dip Recipe

This is a recipe for my favorite layer dip I'm posting especially for Erik's Auntie Cinnamon today.

Festive Chicken Dip

1-1/2 lb boneless, skinless chicken breasts, finely chopped
1/4 c lime juice, divided
2 garlic cloves, minced
1 tsp salt
1/2 tsp ground black pepper
1 can (16 oz) refried beans
1-1/2 c sour cream, divided
1 pkg (1.25 oz) dry taco seasoning mix, divided
1 Tbsp picante sauce
1 avocado, chopped
1 Tbsp olive oil
1 cup (4 oz) shredded sharp cheddar cheese
1 small onion, finely chopped
2 tomatoes, finely chopped
1 can (2.25 oz) sliced black olives, drained
1 bag (10 oz) tortilla chips
Fresh cilantro for garnish

Place chicken in a bowl. Sprinkle with 3 Tbsp lime juice, garlic, salt, and pepper; mix well. Set aside.

Combine beans, 1/2 c sour cream, 2-1/2 Tbsp taco seasoning, and picante sauce in a medium bowl. Spread bean mixture in the bottom of a shallow 2-quart casserole dish.

Combine avocado and remaining 1 Tbsp lime juice in a small bowl; sprinkle over bean mixture. Combine remaining 1 c sour cream and 2-1/2 Tbsp taco seasoning in a small bowl; set aside.

Heat oil in a large skillet over high heat until hot; add chicken in a single layer. Do not stir. Cook about 2 minutes or until chicken is brown on bottom. Turn chicken and cook until other side is brown and no liquid remains. Break chicken into separate pieces with fork. Layer chicken, sour cream mixture, cheese, onion, and tomatoes over avocado mixture. Top with olives. Refrigerate until completely chilled. Serve with chips. Garnish with cilantro.

(Makes 8 cups of dip)


Sunday, June 03, 2007

City and Country

I'm back from a very full day, yet I'm actually fairly relaxed. This morning I picked up Kathy fairly early, and we headed downtown to participate our community's annual 5K walk/run to support the fight against breast cancer. We were two of 2700 people there. The crowded event was beautifully coordinated and, except for some serious technical difficulties with the announcers' microphones, everything seemed to go very smoothly. Before the race began, we were instructed to kneel down on the ground to allow all cancer survivors in our midst to stand and be visible. Pretty powerful stuff.

As an air horn blasted and we began the race, we slowly lurched forward like a pink sea of zombies. There were many tennis shoes sporting fresh coats of pale pink spray paint on the feet around us. One group of ladies carried signs that proclaimed, "Save the Ta-Tas!" There were women in marabou and sequins and men wearing photos of their wives and mothers around us. The sunshine beat down on our skin right away, surprisingly hot for any sort of morning light, and we walked through the beautiful west side of town through tidy, ancient craftsman-style homes, sparkling office buildings overlooking the river, and clusters of cheery California poppies. Over the course of the race, we managed to fight our way to the front of the walkers and made decent time for not being in any real hurry. After our glorious finish and a quick drink of water from paper cups, I dropped Kathy off and headed home for a quick shower before I gathered my own family and met her yet again up at her family's campsite on the lake.

The lake was, as usual, gorgeous. The meandering streams I remember from my childhood were swollen, full of water that was quite recently snow. We set up chairs in front of their camp trailer, and Brian chased Erik around, who played in some very tiny snowbanks that shriveled under the sun before our eyes and manufactured dark mud puddles the other kids found irresistible. Alan barbecued hot dogs for lunch, and we enjoyed some quality time just hanging out with our friends and their family. We played with fat little frogs hopping over the marshy ground. Erik took a low-speed spin with Alan on the little orange motorcycle and got a ride in the paddleboat before he had sunscreen and sweat in his eyes and decided he needed some sleep. We loaded Erik's Tonka and our chairs back into the Jeep and drove back to town, where I enjoyed a trashy movie with a surprisingly depressing ending and Brian and Erik took naps. It's a sweltering evening, and the sky is full of smoke yet again. I was enjoying some couch time and discovered a glossy beetle crawling in my sweaty, campfire-scented hairdo, and my hysterical screeching and spastic dance of disgust awakened Brian from his slumber on the love seat. We are now all in the upstairs office. Erik just watched a video on You Tube featuring construction equipment operating to Fanfare From Also Sprach Zarathustra From 2001: Space Odyssey for no particular reason. I giggled at this bizarre specimen of manly cinema. Erik smiled and said, "Awesome" at the end, asking his father to play it again.

It will be a miracle if I survive the next week with all that is scheduled, but at least I'm as ready for it as I can be.

Watch Erik's favorite "awesome" video HERE.

Labels: , , ,

Saturday, June 02, 2007

Grand Total

This year's Valentine's Day fundraiser and donations made in Erik's name from the wonderful awareness generated by Sophie's Run came to a grand total of $1320. One hundred percent of this money was donated to the Williams Syndrome Association and will help fund research and provide better resources for our children with WS.

Thanks so much for support and generosity. For those of you who were not aware of the fundraiser and would like to donate, please e-mail me (see my profile), and I'll tell you how and hook you up with a bright red and black TEAM ERIK bracelet. If you donated and did not receive a bracelet, or you are a WS parent (no donation necessary), let me know and I'll send one your way.

Thanks again for your amazing support.

Labels: ,