Not-So-Random Acts of Kindness

I was sitting at my desk yesterday when I saw the UPS truck rocket down the road, trailing a cloud of dry desert dust. I haven't ordered a thing, so I was surprised to see it rattle to a stop in front of our house. The box the driver left on the porch was addressed to Erik. Well, that explains it (not). I wonder what Erik would order if he could. Cookies? Puppies? A box full of wheels?

When Erik got up from his nap, he spotted the box and asked who brought it. I explained that the UPS man did but that I didn't know who sent it. He seemed to understand. I sliced open the tape with a nearby steak knife and opened the cardboard flaps. Inside the box was the cutest little boombox ever. You can even hook it to an iPod, which I had not seen before. There was no information regarding who sent this gift whatsoever.

Erik was suspicious but curious. He asked what kind of noises it would make. I reassured him that it would only make good noises and that I would never need to punch the thing to get it to start, although I crossed my fingers when I plugged it in and inserted a Sesame Street CD, hoping for the best. As it turned out, it's even more quiet than the other one was when it searches for the first track. Even that subtle sound bothers the Mighty Erik Quinn.

So, thank you from the bottom of my blackened heart, mysterious blog reader. I am having a really tough week, and you completely made my entire month. There is music in Erik's room again, thanks to you!

The Sound of Mucus

Random Thought of the Day

Scent of Eucalyptus = Yummy

Scent of Eucalyptus + Poopy Diaper = Nasty Stench

Erik is sick with his first chest cold. I'm not feeling so hot, either, and have been up since 1 a.m. with my usual anxious, angry insomnia. We both smell like Vicks VapoRub. I did manage to indulge in two independent films while the guys were asleep during the dead of night, and that was almost fun. Erik and I eventually went out to drop off work and go to the store, and I bought some Ben & Jerry's Cherry Garcia frozen yogurt, which is something I used to do years ago when I was in a foul humor. I wandered down the cleaning aisle and hoped to find a scented candle that struck my fancy but was too picky/olfactorily challenged to select one. I ended up with a very bizarre collection of items in our cart and couldn't remember exactly why we were there. Erik said hello to another family while we were out. They seemed to know him, but I had no earthly idea who they were. Being accustomed to his celebrity status, I let him do the talking. Later on he asked the very quiet, cranky man checking our groceries to give him a high five, which he did, much to Erik's delight and my surprise.

We did get to enjoy a family Superbowl gathering last weekend. The neighbors also joined us for some cocktails, burgers, chicken wings, and friendly gambling. Erik stood motionless in front of the television screen while Jennifer Hudson sang the National Anthem. Every once in a while a song will really seem to touch his soul. I find him in front of the stereo from time to time in a trance. Each muscle in his body seems to freeze. It is extremely unusual for Erik to be still while he is not unconscious or being held down. When the song was finished, he turned around smiling and said, "Again!"

I might need to purchase the Dreamgirls soundtrack.

Life drags on. I don't have a lot to report. My friend with ALS has been receiving IV antibiotics at the hospital for yet another lung infection, and he has horrible allergic reactions to the drugs. Erik has learned to say, "Watch this, Mama!" My feral cat and I spent Erik's nap time cuddled on the love seat this afternoon, but sleep never came for me. I'm off to drug my body into resting, and I hope tomorrow is better. I'm guessing Erik will take advantage of a rare sick day and stay home from school and therapy. We'll do this all over again. We are grouchy but really enjoy each other's company, in sickness and in health.

Erik and Brian, Ready for the Big Game

Rob, Lisa, Me, Mom, Bob, & Susan Enjoying Things in 3-D

Another Woo Hoo Moment

Meet Jim. He works at Disney World. He also happens to have WS. I have never been brought to tears by the Notre Dame fight song before. There's a first time for everything.

Who needs silly old sheet music, anyway?

Our Next American Idol

I need music, please.

-- Erik Quinn

Erik's top ten favorite songs. He now has a play list on my iPod.

Bad to the Bone (George Thorogood & The Destroyers)

Tomorrow (Charles Strouse -- From the muscial Annie)

Juicy (Better Than Ezra)

Bad Boys (Inner Circle -- Theme from Cops)

She Thinks My Tractor's Sexy (Kenny Chesney)

Macho Man (The Village People)

Hallelujah (K.D. Lang)

Car Wash (Rose Royce)

No One (Alicia Keys)

Deep in the Heart of Texas (George Strait)

Sometimes when he sings and is unsure of the lyrics, he sounds an awful lot like a German tourist attempting karaoke after too many Long Island ice teas. Especially that Kenny Chesney song.

Shh theenks my tractur's seck-sayyyyyy...eeet really urrns it aahhnn

It makes me laugh. I really need to make a new recording. He also does a superb Alicia Keys in that falsetto of his. Seriously. It's SPOT ON.

Slice of Life

I did my best, it wasn't much
I couldn't feel, so I tried to touch
I've told the truth, I didn't come to fool you
And even though
It all went wrong
I'll stand before the Lord of Song
With nothing on my tongue but Hallelujah

-- "Halleujah" Leonard Cohen (sung by K.D. Lang)

Yesterday went fairly well, although I collapsed at the end of it and was in bed by 7:30 with a headache and apparent exhaustion, as I couldn't keep my eyes open anymore. Does anybody know who was voted off the Biggest Loser last night?

Erik attempted to refuse to go to school yesterday. He yelled, "No school! No backpack! No!" I gave up on brushing his teeth, and he stomped his feet, slammed doors, and followed me around hitting me as hard as he dared. I couldn't help but think this was like spending a morning with Helen Keller at the beginning of her education, except Erik did a much better job of locating me and cursing at me than she probably ever could. After a time out failed to work, I began ignoring him at the point where I thought I was going to snap and stuff him into Gracie's car carrier in order to transport him to school. I took a deep breath and turned on the Today Show. In the middle of his outburst, K.D. Lang began to sing one of the most beautiful songs I have ever heard, an older song by Leonard Cohen called "Hallelujah," and Erik stopped in his tracks. He stared at her performance and was frozen the entire song. He was in a complete trance. I stopped what I was doing and sat on the floor behind him, putting my hand on his back to let him know I was there. He very slowly backed up without breaking his gaze and lowered himself onto my lap. It was a little moment of peace in our house, and it was wonderful.

After school, Erik was dropped off in our snowy driveway, and we made complete dorks of ourselves waving wildly at Jeff, the bus driver. We ate lunch and headed to the orthopedic building at the hospital. I drove there a few minutes early to catch my neighbor Lisa working at her coffee cart in the lobby. She dropped everything she was doing and gave Erik a tour of the lobby, including the impressive but silly manmade stream that begins with a waterfall cascading over a collection of manufactured boulders and travels the length of the registration area in a long, rocklike enclosure. The scent of wet pocket change and struggling algae brought back memories of a fountain in a mall we used to visit in the valley when I was a child.

Erik refused to ride the elevator to the second floor, so the three of us went up the stairs and found the orthotics office. Three men emerged from the back workshop as we entered to make small talk, and Lisa introduced Erik to the ones that don't know us, beaming with pride. She marveled at the wall lined with various orthotics, most of which look as if they are for sports injuries. The bottom shelf housed a collection of braces identical to Erik's with foam pads and straps in cheerful colors.

Lisa left us to tend to her customers, and Erik carjacked a toy monster truck from the waiting room to take into the back room with Jeff, the orthotist. Erik has not been in this room for almost a year and a half but knew exactly what had occurred here with the screaming saw used to remove the materials they used to cast his legs. He began to panic, but we convinced him to join us, and I pulled the legs of his sweats up and took his shoes off so Jeff could see how tiny his braces have become. I'm no expert, I told him, but I do believe Erik has outgrown his orthotics.

If there was any doubt in Jeff's mind that I was telling the truth, one look at Erik's long legs capped with the tiny, toddler-sized orthotics took care of that. He called Erik's PT to see if he still needs them, and she told him she would reevaluate him at our next session. In the meantime, Jeff replaced the Velcro enclosures around Erik's legs so they no longer come undone every 30 seconds, and we were free to go. I made Erik ride the elevator but held him in my arms and soothed him through the rude mechanical buzzes and dings that made him jump and bury his face in my shoulder.

New Dreams

There are some things that I will never have the opportunity to do as a mother. I spent the last two years digesting each of those losses like little deaths, and they have all hit home now. The moment we were diagnosed, I could almost hear hundreds of doors slamming shut. Opportunities ripped from me. Dreams destroyed.

However, I accept the fact that I will likely never jump up and down in a set of bleachers cheering for a son who is the quarterback of his high school's football team. He will likely never play on a football team at all. I accept the fact that I will likely never take him to the DMV to get his driver's license. I accept the fact that I will never have the opportunity to watch my son graduate from medical school. I accept the fact that I will likely never attend his wedding or have a daughter-in-law. Lastly, I am very slowly learning to accept the fact that I will likely live my entire life without being somebody's grandmother.

However, as I have watched Erik grow, I have witnessed him flinging doors open on his own, touching the people around him in a way I would never imagine was possible. He received two pieces of mail in one day this week. That's pretty decent for a kid who is only 3. He loves animals and is amazing with them. He loves music and seems to have the budding desire to create it himself. He still occasionally goes into a deliriously happy trance when he sings a new song. This week he began singing "Deep in the Heart of Texas" and "Old Suzanna."

Slowly but surely, my dreams for the future are once again materializing in different forms. I visited You Tube yesterday and searched for videos on Williams syndrome. Two years ago, I saw only my personal videos posted on this subject. Now I see familiar faces with button noses and gorgeous eyes like Erik's. When I find a new video, I feel like jumping for joy. Yesterday I discovered this video of a young man who can drum up a storm. While I watched him perform, I realized I was less focused on his incredible talent and more transfixed by the joyous "woo hooing" in the background.

It was then that I suddenly had a little realization of my own.

No matter what Erik decides to do with his life, it is very likely I will have an opportunity to stand up in a crowd and cheer after all. My son has a chance to do things typical children find amazing. He has a chance to follow his own dreams and will likely need to work twice as hard as other children to accomplish them. I have all of the faith in the world in him and know he will blaze his own trail to happiness. The future is one big unknown for Erik Quinn.

I now know one thing for sure. And I'm certain it's true.

Moms like me get to "WOO HOO," too.



Thanks, Devin, for sharing your talent with the world and providing our family with another hero of our own.

Erik Sings

Check out the new Gabcast recording on my sidebar. I made this particular one as we all snuggled in bed this very lazy Saturday morning. Erik and I sang over his father, who was attempting to sleep in. The children he names in the song are two of his friends, Dominick and Baby Cecilia (Ce-Ce-Ya-Ya).

Coffee's on, if you are interested!

Duets

Erik and I recently discovered the joy of singing songs in unison. He would previously immediately cease singing if I joined in, but now his confidence level and his memory of many lyrics have made it possible for him to just belt out whatever is in his heart without hesitation. He looked surprised and pleased the first time we sang an entire song together.

We sang "Happy Birthday," easily his favorite song, to everyone we could think of last night, including ourselves, over and over until we giggled and couldn't sing anymore. Towards the end of each round, he would very slowly pick his thick, strong hands up from his lap and hold them in the air, ready for enthusiastic applause and a few "yays" for each of our friends and family members as we finished each song.

I'm fairly good with words, but it's difficult for me to explain how I feel about doing this with him. The look that washes over his face while he sings actually disturbed me at first, because it almost appears as if he is suddenly possessed by someone else--an older boy whom I have never met. His smile widens, exposing the adorable collection of his baby-white teeth, including the cute little points of his incisors, his blue-gray eyes squint until they are practically closed, hiding their beautiful, lacy starbursts, and his slightly raspy voice begins to boom out with newly-found confidence, a little on the monotone side but filled with nothing but pure joy. I have not seen this particular expression on his face at any other time. Now that he has discovered he can sing along with his old mom, I feel like I am sharing something new and extremely special with him. It took me many painful months to really bond with this child after he came into this world, and I accept each and every one of these moments gladly and with open arms. I'm sure it sounds over-the-top corny, but I feel as if I am in the midst of something almost holy and magical when he sings in this blissful state. I have read stacks of studies about music and the brains of those with WS, but witnessing the connection actually happen is quite easily enough to cover me in a layer of goosebumps. I am far from the most religious person in the world, but Erik seems to be my own personal window into what heaven must be like--what it just HAS to be like. Joy like this isn't created by some random genetic accident. Or is it?

We are planning on singing "Happy Birthday" to Jesus this Christmas. If there is a better, more appropriate way to celebrate the holiday, I honestly don't know what it could possibly be.

He'll be the squinty-eyed, blond angel smiling from ear to ear. I'll be the one with tears running down my face trying to sing along.

A Look Inside My iPod

I can't sleep and I lay and I think
The night is hot and black as ink
Oh God, I need a drink of cool cool rain

-- "Love, Reign O'er Me" by The Who

Insomnia. Gotta love it. Hey, I got three hours of Zs. Here's another look at what's new on my iPod.

"Buddy Holly" by Weezer. A cheerful little song that goes horribly wrong at the end. I'm not entirely sure what the lyrics mean, but I'm pretty sure they both die a dreadful, violent death. Anywho, it rocks.

"Somewhere Only We Know" by Keane. My new favorite song. Instead of a traditional love song, as it was probably intended, I think about the parents out there like me when I hear it. I'll meet y'all at our special spot near the river.

"It's All Been Done" by Barenaked Ladies. My favorite song from this band. A humorous song that explains why we have deja vu from time to time.

"Scooby Dooby Doo." I don't know who did this song, but it sounds like the original. Erik's nickname has always been "Skooby," so I thought it was a must have. My husband asked if I actually paid $1.99 for this (I did). When I play it in the car and it ends, Erik yells, "AGAIN!" Worth every penny.

"Lose Yourself" by Eminem. I'm not normally a huge Eminem fan and certainly don't agree with his views most of the time, but his words are smart, angry, dark poetry. This song is great for working out, but most of the time I blast it in the car when I'm alone and feeling discouraged. It makes me feel as if I can do anything. One of my favorite songs of all time.

"Bye Bye Blackbird" by Joe Cocker. I think I originally heard this song in that Meg Ryan movie where she has a bit of a drinking problem. I blasted this song as I moved carloads of my belongings from my ghetto apartment to the very first house of my own in the pouring rain. If I could choose a song for my funeral, this would be it. Morbid, yes, but it's that good. Makes me feel like I can fly.

"Love, Reign O'er Me" by Pearl Jam . I feel like a bit of a traitor downloading this one instead of the original, but I love it. When we were in Idaho, we saw Reign Over Me, a wonderful movie about successfully surviving the most horrific loss imaginable. The song sounds like a prayer being screamed directly from the heart to the sky. It's in the movie.

"I Believe I Can Fly" by R. Kelly. Classic. I fell in love with this one when I followed the story of Mattie Stepanek, the little boy with dysautonomic mitochondrial myopathy. It was one of his favorite songs before he passed away in 2004. He knew he would fly away, and he did.

"Click Click Boom" by Saliva. Hard stuff. Heavy metal meets rap. Great song for lifting weights or a shift working at a gentlemen's club.

"In the Meantime" by Space Hog. Strange, ominous little song with bite.

"Lean Like a Cholo" by Down. Yeah, I'm officially the whitest girl on the planet, but I can't help but love this song. Reminds me of the old days when we would go to the nasty little club in the next town and dance until the point of exhaustion, soaked in sweat and rude splashes from passing trays loaded with plastic cups of 25-cent beer. Elbows up...side to side...

UPDATE: It's 6:35 a.m. now. I slept for an hour or so on the couch before Erik started crying. I went into his room and crawled into bed with him until he fell back asleep. He was mumbling, "Fire trucks go woo woo woo woo." I never thought I would hate fire trucks, but I do. I feel like throwing eggs at them as they pass.

It's amazing what just an extra hour of sleep will do. Yawn. Tired, but functioning. That's a good thing.

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.

Sunday Drivel

Last night a friend gave me a CD of Richard Cheese & Lounge Against the Machine. It is one of the funniest things I have ever heard. This gentleman borrows a variety of popular songs from the 80s, 90s, and today and sings them lounge style with a big band feel to them. I thought his rendition of Guns N Roses "Welcome to the Jungle" was the funniest thing ever until I heard "We Are the World," "Gin and Juice," "Baby Got Back," and "99 Luftballoons." Whew. Classic. It's an adults-only CD, as the language is a bit dicey because some of these songs are from the heavy metal and rap genres. However, in my opinion, it only makes them that much more ridiculous and fabulous.

I took the plunge and entered my first essay contest last year. I chose a topic regarding home ownership. There were over 13,000 entries, and they have been announcing monthly winners all year. The grand prize is $250,000 to go towards a new home or property. They are posting the winners on April Fool's Day. My chances of winning are slim, but it has been fun to dream all this time. According to National Geographic, my chances of winning are about the same as dying in hot weather (1 in 13,729) and better than being legally executed (1 in 62,648). Golly, that's good news! I'll miss the suspense of waiting, but a year is a really, really long time to wait for anything.

Yesterday I put together a submission for my first Pacific Northwest writing contest. I entered one of my poems this time. That was a little more difficult for me, since those tend to be gut-wrenchingly personal. It's sitting in an envelope downstairs, and I feel a little like I did when I was in my creative writing class in high school -- vulnerable. I'm getting braver when it comes to putting my writing out there, and I owe a lot of that to you. I haven't written in years before this blog. I'm hoping to get published somewhere eventually, and this is a good place to start. The only writing contest I ever entered before that I can remember was the Bulwer-Lytton fiction contest, a competition to pen the worst opening to a novel in various categories including "brown bag" (sexy stuff), "It was a dark and stormy night," science fiction, and many others. That was way fun. Now that I think about it, I should try again.

I'm hoping today is as beautiful as it was yesterday. It was over 70 degrees again. Erik was into everything yesterday. He is rebelling against his only nap now, which may disappear entirely, and threw handfuls of dirt from the planter on the landing twice yesterday, requiring me to haul the vacuum hose up the stairs. As cranky as this makes me, I can see he is a whole lot of typical 2-year-old these days. That's a good thing.

Off to shower. Have a wonderful day.

Gray

It's a quarter past cookie time, and I have turned my nose up at a trashy movie in favor of doing a little writing this morning while Erik settles down into his nap. I treasure mornings when I have some time to myself, but this morning I can't seem to find satisfaction in anything. Erik and I had our breakfast together, and afterwards I strapped on some ankle weights and did a 30-minute aerobics video. Erik rolls around on the love seat while I sweat, and his hair stands straight up from the static he generates. Sometimes he will exercise with me, standing in front of the TV screen, rocking back and forth on his feet, and counting, "One, two, one, two." Eventually he lost interest and wandered off into his room, trying the front door to see if it was unlocked on his way by. After I finished and had a shower, we moved on to blocks. He doesn't understand the concept of blocks quite yet and refuses to stack them. I tried building things myself and letting him demo them instead. He brought me some books, and when I turned the page in one about construction equipment, he said, "Backhoe." Sure enough, there was a backhoe. Color me surprised.

I believe I have a parent group hangover from yesterday morning. Truthfully, if the roads had been better, I would have driven out to the mall instead. It was icy, though, and I opted for sitting with a cup of hot coffee in my favorite rocking chair in parent group. I was a little on edge yesterday morning for some reason, so I tried to keep as quiet and superficial as possible. It went fine, but I don't feel any better for attending. I still have a bad taste in my mouth about the whole thing. I'm tired of talking in that setting.

Erik has learned to activate the drum machine feature on his new keyboard. When it begins its jaunty little beat, he taps his chest and says, "ERRWWIK!" as if he is going to launch into a spirited rap song. I believe he would if he had the words to use. Apparently, Brian has been rapping for him (hugely hilarious in itself), and Erik has obtained a little of his own flavor. Brian steadfastly claims he did not teach Erik the chest tapping thing. Scary. However, this week Erik sang, "We will, we will, ROCK YOU! BOOM BOOM." Is he going to be the next LL Cool J or Ted Nugent? Only time will tell. I call him DJ Skooby Skoob, especially when he has his truck on its side and is spinning the wheels like records. He has made great progress in language skills in a period of one week and is now using the words "gone," "goes," and "comes." He says things like, "Daddy gone." If a ball rolls away from him, he will simply say, "Goes." I kept his orthotics off this morning, but noticed that he walked on his toes. I attributed this to (1) the floor being as cold as a mountain glacier and (2) his muscles and tendons being painfully tight first thing in the morning. I'll put him in them first thing from now on and let him have the evenings unshackled.

Erik had the pleasure of meeting our local symphony conductor's mother recently. She brought him a wonderfully soft ABC throw pillow and a little truck. He apparently repeatedly said, "Neat!" and "Wow!" upon receiving these kind gifts. She left my mother's house with a copy of The Strangest Song and was quite taken in by Erik's charm. My mother also told me that the symphony conductor himself plans on reading this book. How lucky am I? What better resources to have in my arsenal for Erik's experiences in the world of music? I hope to bounce some ideas off of him in the future in terms of getting Erik music lessons and finding a suitable instructor for whatever he decides to play or sing. After finishing The Strangest Song, I believe wholeheartedly that music lessons are a must and will be as important as any of the therapy sessions we have used to strengthen his body and mind, whether he has a talent for it or not. Music seems to almost feed these children. One of Erik's most used words is the word "music" itself. It actually comes out as almost a demand.

The photo I am attaching to this post is the view out my office window at this very moment. The vegetation looks as if it has been dipped in powdered sugar, as we have had temperatures in the 20s and fog. I really miss seeing the mountains when I open the blinds in the morning. Seeing something so gigantic is missing is a bit unnerving and makes me feel a little off balance, as if I have lost an anchor.