Erik Quinn: The Heart of a Family: August 2006

Thursday, August 31, 2006

Rachael Ray is in the Loo

I can't believe it's Friday already. I have not felt well all week, and I honestly don't know where the last four days have gone. I am thinking they have gone to that mythical place where all of the retainers we lost in junior high school and missing mates to athletic socks lying lonely in drawers reside in another dimension. Seriously, I feel like I am in the middle of a Twilight Zone episode where I am the only one in a slow motion black hole and the rest of the world has passed me by.

Upon seeing my parents in my living room this week, Erik realized he had a ticket out of this place with his favorite people in the world and clearly stated, "Buh bye" over and over, clear as a bell. He might be settled into a plateau but is honing the skills he has attained with his language. I have been warned by more seasoned WS parents that once he starts talking, he won't stop, and I am really looking forward to that. This house is too quiet, anyway.

Wednesday Erik walked right past me with a bottle of olive oil from the kitchen cabinet. I had my head down in some old photos at the kitchen table and heard him playing happily practically next to me, so I continued my project. When I looked up, the oil was merrily glug-glugging out of the bottle, which was on its side in a glistening, yellow oil slick, and Erik was slapping the palm of his hand into it. It was like the heart-healthy version of the Exxon-Valdez oil spill. Sadly, it was about that size. I calmly assessed the situation (I was screaming NOOOOOO in my head), put Erik in his chair with some cookies, and began the cleanup mission. He is into everything there isn't a lock on these days. Despite the tongue lashing I gave Parent Magazine in my previous post, I have to be fair and state that their toilet paper locks are the best thing ever invented!

Erik and I looked at each other yesterday morning while he was playing, and I almost didn't recognize him for a moment. My heart skipped a beat, as I realized how big he is getting and that through all of his infancy I probably didn't enjoy it as much as most moms because of how hard it was on both of us. I mourn because it took months to bond with him, as he was largely unresponsive, and rejoice in the fact that there is an unbreakable bond and an endless supply of smiles between us now. He is an animated, growing, laughing boy, and I looked back in time to how things were when we brought him home that first day and he wouldn't stop crying. I wish I could tell myself back then that everything would be okay and that Erik would "wake up" and grow into such a wonderful child. I remember trying to imagine what he would be like as he got older. Of course, I remember trying to imagine him doing all of the things most parents dream of their kids doing as they grow - driving a car, going to the prom, being taller than me, and doing all of the stupid little things in high school I thought were so wonderful and hoped he would, too. Back then in the darkness, I had so much trouble visualizing him growing at all. I guess now all my expectations and dreams are up in the air and I am back to not being able to imagine what he will be doing as a young adult. However, now I have the comfort of knowing my child loves me and looks for me when he needs me, and when I am blue about what lies ahead, I can ask for a hug. My fear and the pain dissolve when I look into his face and smell that wonderful baby scent he still has.

Erik's cardiologist is leaving the clinic that will no longer accept our insurance, and that makes me extremely happy. I signed a release this week to have all of his records transferred. He has his 2-year-old well child check with his pediatrician in October, and I am looking forward to touching base with his doctor. We haven't seen a therapist or doctor in a few weeks, and I am actually missing them because they provide a sense of security and a feeling that we are not on our own in this. I know I can pick up the phone and ask questions, but I'm afraid I don't know what to ask in the first place and like them to look at Erik in case I am missing something. In reality, we are on our own deciding when to take him in, what is best for him, and how to handle situations regarding Erik's health, safety, and well-being. After all, I am the one who first mentioned the WS diagnosis. However, it is just comforting knowing other people can give us guidance and advice. Sometimes I wonder if I'm capable of being this kind of mother, but so far, so good. My house plants began to die after I brought Erik home from the hospital, and these days they are perking up and looking cared for. The cat lost some weight for a while but is on the upswing as well. I think I am finding some balance!

I am feeling a little better today and am going to try to get out once for an hour or so for lunch with my neighbor. I have worked very hard for the last couple afternoons, which is good, but I need some fun. Yesterday on the way home with Erik I scored a couple extra avocados from my mother, and I decided to make some guacamole to eat while we all watched the Oregon State game last night. This involved taking my ingredients behind two closed doors and firing up the food processor on the bathroom counter in the far corner because of Erik's acute hearing. When I do this, I can't help but laugh. I did my jacked up version of the Mexican hat dance when I realized Erik wasn't crying in the other room. My gut tells me that this noise is too over the top to expose Erik to yet. There are a lot of noises he just shakes when he hears, and we slowly and firmly expose him to those, but this one is just pure torture to him, and making him that upset provides no benefit at all to any of us. Hey, at least I don't make guacamole in the garage anymore. I think we are making progress here.

Tuesday, August 29, 2006

Axl Rose & Elmo

I am feeling uncharacteristically restless today. I believe I am having a gargantuan hormonal surge, as I found myself ransacking our cupboards desperately looking for something in this house that is naughty to eat (we never have ANY junk food in this house). I ended up licking the salt off of Costco rice crackers and having an extra glass of wine because I couldn't think of anything else that sounded better without an extra trip to the store or to Dairy Queen (I am NOT pregnant, by the way). As I get older, I find that the hormonal roller coaster is becoming a bit much for me when it didn't used to phase me whatsoever. I will probably end up asking some sort of medical professional about this eventually. I sometimes feel like eating something as large as a roasted water buffalo or going on a tri-state shooting spree for no good reason. It is really no fun at all. Luckily, today this feeling only resulted in deciding to cut a couple extra inches off my hair. I am sick of dealing with it. It hasn't been this short since I was pregnant. I suppose I like it. It certainly feels better. I wasn't really even in the mood for the salon today, which is normally a big treat for me. It is quite a feat to find time to pamper myself outside the house during the week, so anything I choose to do is something I normally find quite enjoyable, but today felt like a huge waste of my time. I'm not really in a bad mood. I just feel kind of blah.

Hopefully Blogger will allow me to attach a photo or two of Erik at the park this weekend. This evening, Erik came out into the living room lugging his mammoth-sized stuffed dog and muttering "ruff ruff" before he slammed it into the ground and rolled around with it, growling and showcasing his wrestling skills for me and his dad. He has hit another developmental plateau and isn't doing anything hugely new but is doing great and is especially fun these days. Every day after breakfast I get out the Windex bottle to spritz the counters, and when he sees it, he exhales out his nose to make the same noise the bottle makes when I spray it (hifff hifff hifff hifff). So cute! Today I crawled into the playhouse in his room, where we have his electronic play table and Scooby Doo chair set up. There is a smiling rubber banana on the console of the table with a little red heart on it to push. Because his fine motor skills are shaky and he normally doesn't think to do it, he has not been using his index finger to point or push things as well as most kids, but today I reviewed the process with him, and he accomplished this feat repeatedly with a huge grin on his face. It obviously made him feel very proud of himself. I got to listen to "Banana!" and "Squishy banana!" and "Yellow banana!" four thousand times, and I laughed every flipping time. I couldn't help myself. I remember when I brought that little table home to get him to pull himself up to standing, and he was terrified of the sounds it made. I felt like I was torturing him. He has come a long way in just a few months, and I can't believe he will be two in just a few weeks. I plan on setting up his yearly photo studio visit sometime next month and will share photos with all of you.

I was up at the crack of dawn because of my furry friend Gracie Kitty this morning. I was thankful it was after 5 a.m., though, and not 3 a.m. I went on line and ordered some piano CDs for Erik. Brian and I went to a cowboy dinner show with our families when we were engaged five million years ago, and I really enjoyed the cheesy country piano music, so I ordered a CD of that variety, some ragtime (Joplin), and a piano tribute to Rascal Flatts. I spent an hour shopping on Amazon picking out just the right CDs for him. What led to this was that I was in Hallmark after book club Monday night and really liked the country piano music they had on while I was shopping. It reminded me a bit of old people but was completely soothing. The ladies at the counter didn't know what it was, but I figured it out by listening on line. I'll update you on his reaction to the music. So far, his preference is Sesame Street. He gets that from me. Sadly, the Sesame Street CDs and DVD I have were both purchased long before I even thought of having kids. I grew up on that show, and certain songs really make me misty, especially now that they are a link to my childhood and now have new meaning to me (see below). In contrast, I remember days during my college years running in the rain listening to AC/DC, Skid Row, Tesla, Dokken, and Slaughter on my brick-sized Walkman. For those of you who know me well, never fear -- my leather miniskirt and Aqua Net-scented hair may have disappeared, but those songs are appearing on my iPod again. However, I am MUCH more well-rounded in my old age, having been exposed to everything over the years. I simply love it all. I am hoping that my mother will still be in the symphony for a while yet so Erik can watch her perform. That is actually a moment I have been dreaming of. I am also really curious to see what Erik prefers musically as he grows older and if he loves it as much as I do. I have a feeling we will be swapping sound files on our computers someday. I am suspecting it will be part of the secret language we seem to have with each other.

That's all for now. I am hoping I perk up a little bit tomorrow. The cooler weather is supposed to roll in this week, and I am pumped about that.

It's Not Easy Bein' Green
Kermit the Frog

It's not that easy bein' green
Having to spend each day the color of the leaves
When I think it could be nicer being red,
Or yellow or gold-
Or something much more colorful like that.

It's not easy bein' green
It seems you blend in with so many other ordinary things.
And people tend to pass you over
'Cause you're not standing out
Like flashy sparkles in the water or stars in the sky.

But green's the color of Spring.
And green can be cool and friendly-like.
And green can be big like an ocean,
Or important like a mountain,
Or tall like a tree.

When green is all there is to be
It could make you wonder why,
But why wonder, why wonder?
I am green and it'll do fine,
It's beautiful!
And I think it's what I want to be.

Monday, August 28, 2006

Lucky Old Lady

This weekend I turned 36. I wasn't thrilled about that at first, but it didn't hurt much at all. The four days I had off were thoroughly enjoyable. I was a lazy bum Thursday, and Friday Brian decided to join me. We went to the park and met up with the gal I have been talking to on the phone who has a daughter with Phelan-McDermid syndrome. I felt really good about our visit. Her daughter was sleepy and enjoyed Erik's blankie in a shady spot while we got to know each other but woke up and explored the playground equipment with Erik later. The husband also came to join us for a brief period of time, and he told us about a family member overseas who has Williams syndrome and is doing extremely well. We all agreed that it will be nice to see familiar faces in group every week here in town. They were such a nice little family, and Erik really seemed to like them. What I found absolutely hilarious is that we encountered the most extremely colorful of acquaintances at the park during this generally very serious visit. These included a former neighbor of ours (tattooed, shirtless, semi-toothless, skateboard riding, beer-infused) and a guy Brian played football with a couple years ago (tattooed, shirtless, muscle-bound, incredibly mean-looking) that appear as if you wouldn't want to meet them in a dark alley or belong in some sort of street gang but are truly very sweet underneath their frightening exteriors. I felt myself giggling nervously a lot. Brian and I had an extremely good laugh when we got home. We know a very wide variety of people around town, which we are very thankful for, but we found it more than humorous we ran into that particular social set during such a somber time meeting new people for the first time. Even Shakespeare regularly injected comedy into tragedy using colorful characters! It kept me smiling. After our visit, we ventured to Costco to pick up Erik's medicine and shop around, which I love doing as a family.

Saturday we ate a wonderful birthday breakfast at my folks' house. Sunday I cleaned house and colored the gray out of my hair (feeling much more saucy now). Friends of mine barbecued for my birthday and even baked me a cake. I was spoiled beyond completely rotten.

This morning I am in a very odd mood. A friend of mine has been lying in a hospital bed in Portland for three days after very serious surgery on his big old noggin, and I am thinking of him. He has been unable to talk to me thus far because of tubes and medication, but I am hoping he will be home soon so Erik can crawl all over him and I can tell him jokes to make him laugh until he hurts, calls me the usual names, and begs me to stop. Erik and I have been listening to Edith Piaf and Celine Dion this morning while I cut his hair. I have a wide variety of music in my collection and love just about everything. Sometimes I think I have WS. Erik does seem to prefer piano music. I am beginning to distribute the WS DVDs to my friends and family, and it is really wonderfully eye opening to find out what they see when they watch them. Of course, they are watching from an entirely different, much less painful perspective, but they have helped me see a lot of good things I couldn't at first and still struggle to see. In fact, I was so curious about this phenomenon that I sat down and watched the 60 Minutes one again this morning and hardly shed a tear (okay, maybe one or two). I tried to watch with a more scientific, objective approach and saw a lot of things I didn't at first. I don't seem to have the emotional hangover this time, either. Erik watched with me and loved the music. It is difficult to explain, but I am never braver than I am with that boy by my side. I feel like I can do anything and face anything when he is with me. I am still definitely devastated in a lot of ways by all of this, but I am very aware how incredibly lucky I am to be Erik's mother. I am honestly looking forward to what the future holds for him. I have no doubt that he will teach me much over my lifetime. He takes very good care of his old mama.

Friday, August 25, 2006


Dear Parents Magazine Toy Department:

After weeks of careful consideration and comparison shopping, yesterday I purchased your "Young At Art" magnetic drawing board for my son, who happens to have Williams syndrome and sensory integration disorder. Kudos to your design department for the colorful animal-shaped magnet stamps, easy-to-hold magnetic stylus, convenient carrying handle, and decorative padded backing to protect sensitive pediatric laps. I was most impressed with its accompanying sticker proclaiming it to be Dr. Toy's winner of the 100 best children's products. Finally, I simply could not resist the photo of the smiling young girl creating a work of art with it on the front. In short, my son and I were eager to get home to try this toy and fine tune his motor skills.

As he sat on my lap with your product on his, my son was obviously quite taken by the easily recognizable silhouettes left behind by the animal stamps on the board. After stamping some adorable bunnies and kitties together, we next tried out the stylus, and he was mesmorized by the flowing, dark lines left on the board as I wrote his name and drew shapes for him. Well done! Bravo!

Being familiar with the Magnadoodle version of this toy, I knew to pull the jaunty-looking ladybug to the right of the screen down to magically erase what we had drawn and start over.

Might I suggest some sort of warning label informing consumers that the spring-loaded erase feature on your quaint little toy makes a two TWO BILLION DECIBEL SOUND, much like a chopsaw, when one wants to erase the drawing they have done? This sound was rivaled only by the terror-filled screams that came out of my tiny son shortly after this noise began as the spotted ladybug made its hap, hap, happy freaking way up its track for what seemed like an eternity (perhaps a turtle would have been a more appropriate choice for this feature). I'm not sure what kind of scary-ass ladybugs you are familiar with, but I am quite sure the ones around here do not sound like the clutch exploding on a 1983 Toyota Supra traveling at 76 miles per hour.

I will be returning this product to the store this weekend and spending some quality time with my son doing a less upsetting activity -- perhaps attending a Megadeath concert or teaching him to use a jackhammer at a nearby construction site.

I'm looking forward to returning more of your splendid products soon!

Yours truly,

Deafened in Oregon

Thursday, August 24, 2006

Mental Floss

My week is wrapping up nicely. As an added bonus, I have a four-day weekend starting today. As Napoleon Dynamite would say -- "Sweet!" I made Belgian waffles for everybody this morning, took care of some final work things on the phone and the computer, and had a snack with Erik before putting him down. The clouds have moved in to form a wonderfully dreary, gray canopy over the region, and there is a chill in the air. I love this weather so very much! We are lucky to live in a region where sunshine is the norm, so I appreciate all sorts of weather when we get it. Another horrible addiction I have is to candles, and my fall candles are coming out of the cupboard. My favorite is Yankee "Home Sweet Home."

I attached a couple photos of Erik pre and apres bath. It's awful, but I sometimes call him our "Buttless Wonder." I am hoping that Santa will leave a nice pair of plump cheeks in his stocking this year. The weight he is gaining is definitely not migrating to that region. It is easier for me to appreciate his little form now that he has gained some weight and looks healthier.

As for my mental state, the men in white coats haven't come for me yet (I have been watching for them), and I am doing quite well now that my brain has processed everything from the past couple of weeks. I really benefit from writing. I haven't written much in the past few years and forgot how much I enjoy it. I recently had the opportunity to talk to a woman in town who has a little girl with Phelan-McDermid (22q13), an even more rare genetic deletion syndrome than Williams. They were diagnosed not long after we were, and we seem to click as far as where we are in this and how we are feeling. We have spoken on the phone a couple of times and have set a play date for tomorrow to meet for the first time. I am pretty psyched about that. I am hoping that the weather will clear by then so Erik can enjoy the swings.

I think my boy and I will do some shopping together today. I dressed him in clothing with no jagged holes in the knees or mysterious stains with showing him off in mind. I asked him what he wanted for breakfast yesterday, and he said, "Os!" Cheerios it is, my little man. He never ceases to surprise me.

Tuesday, August 22, 2006

What's Your Emergency?

Erik made his very first outgoing telephone call yesterday. I was in the kitchen making dinner when Brian and I heard a strange man's voice in the living room. The television was off, and, for the life of me, I couldn't figure out who would be chatting away in the other room. None of Erik's toys have that deep voice! Brian looked in at Erik and then back at me with a big smile on his face. Erik had hit the Oregon Department of Transportation Trip Check number and then the speakerphone button on the phone, which I had left in the living room earlier in the day. This man was rambling on and on about road conditions. While this was quite amusing (Erik looked as surprised as we did), Trip Check is "5-1-1." Our son could have very easily hit "9-1-1" and called the police on us. I suppose I will be putting the phone away from now on. I had to call my cell phone the other day to locate it, and it was in Erik's bookshelf. Where in the baby book is the blank for recording the "first outgoing telephone call," anyway? I don't see one.

Monday, August 21, 2006

Date Night

My parents are back in town from their trip, and they offered to watch Erik last night while we went on an actual date. We had a gift certificate for a French restaurant here, but it ended up being out of business (merde!), so we ended up searching for a restaurant or sports bar with a healthy-sized television so we could watch Sunday Night Football together. I am quite obviously not a high maintenance kind of gal. Well, we ended up at Red Robin, where they were too busy to turn the game on for us and there were LOUD kids everywhere -- not exactly a fancy dinner! Erik is so quiet that I sometimes forget how loud kids can be! However, it was fun to sit and chat with my husband like we had no cares in the world over some deliciously naughty, cheese-smothered food we don't normally eat. From there, we crossed the street to the movie theatre, where we know there is a pinball machine in the mysteriously sticky, dark back corner of the cavernous lobby. I confess I have a rampant pinball addiction I normally keep under good control these days. When I was in the valley going to school and working at the drugstore years ago, I used to stop at various stores and mini marts to play a few games on the way home. At first, it was with my boyfriend at the time, who introduced me to it, but then I started doing it completely alone. I was forever hooked. The 7-11 on the west end of the main drag had The Terminator, the 7-11 on the east end of the main drag had Dr. Dude, the mini mart by my apartment had Elvira, and the mom and pop store on campus had The Creature From the Black Lagoon, complete with holographic monster. In fact, I was in the mom and pop store so often, they would often add handfuls of credits to the machine so I could play for free for hours at a time and keep the drunken frat boys from beating it to death. These days, it is hard to find a good pinball machine, but I am still familiar with where to find some in town. We got to play The Sopranos last night. Before we knew it, an entire hour had passed in that movie theatre lobby! What fun! Erik had a great time at my parents' house while we were gone and went down well when we got home. I don't know if we have ever gone out on a Sunday night, but it really left me feeling refreshed and ready to tackle the week. It is nice to have a husband who enjoys the silliness I do. It was also wonderful to set the usual gargantuan, consuming worries we have these days aside and worry instead about how to shoot the ball up side ramp to get the plastic exotic dancers to spin on their tiny poles and whether or not we would match at the end and win yet another game.

Saturday, August 19, 2006

Learning to Fly

When I travel by air, I still fight for a window seat like a 6-year-old girl flying for the very first time. As many times as I have flown over the years, I have yet to understand the people who snap the slider on their window shut and instantly bury themselves in their laptop computers or the newspaper when they have the amazing opportunity to watch the contours of the earth pass gracefully underneath the wings of the plane. I love watching the mountains slide slowly by like mosquito bites marring a checkered expanse of farmland, tiny confetti squares of cars and trucks inching along delicate ribbons of freeway, and glinting, turquoise backyard pools catching the sun's bright light like exotic gems. From the air, the earth is quiet and peaceful, and everyday structures created by mankind look nothing short of wondrous to me. From my cramped seat high in the air, it is hard to imagine anything on the ground isn't absolutely perfect and serene. When I saw this photo of our house taken from above, it was odd seeing my familiar surroundings from another point of view. In looking at this photo, one would have no idea that there was a highly irritated woman inside trying to work on the brink of phoning the authorities and wondering why the hell there was a helicopter buzzing the house repeatedly all afternoon (now I know how Madonna feels). At the time, I didn't know there were photographers hovering over various parts of town snapping photos to sell. My point is that it is not possible to see a lot of detail or many of the things that were happening in this photo, although life was extraordinarily busy that day.

After my last post, I have done a lot of thinking. I have laughed hard and cried harder in response to what everybody who responded wrote. When I was in the middle of writing this week, I felt like I was tapping into a very sinister vein of emotion, but now that I take a step back and look at what came from my heart, I see hope there, too. By watching the WS videos, I have taken a look into what we can expect in general with Erik, even though his life may turn out to be different than what we expect. It was the most difficult thing I have ever done, but I was ready for it, and I believe I am now equipped to handle meeting other WS families with older kids or adults. I can now attend the convention in a couple of years without having to grieve later, at least to this degree. I do not have to fear accidentally running into a WS family somewhere and having a complete breakdown for days afterwards because it was too much of a shock and I had no idea what to expect. I can do a lot of things I would not have been prepared to do only days ago. There is a lot of grieving left to do, and I know I have a long way to go yet, but I feel like I am making some progress. I understand that everybody is different and has their own method and speed of coping and that a lot of you are in different places emotionally, including my own husband. It is comforting to me to realize that this is not a race and that it is okay to say, "Whoa, I'm so not ready for this," and take a couple steps back, even if it means changing your mind about where you are. One of my very good friends here has taught me I have the right to feel what I feel without apologizing for it. There are days I feel strong and other days I simply don't. What is beautiful about the girls I have gotten to know in this is that no matter where they are in this process, they don't hesitate to cry and laugh with me with a general understanding of what I am going through and never seem to judge me for what I write. As for the people around me who are not in this situation, they have been wonderful, too. At the beginning of this, one of them gave me a copy of the serenity prayer that Alcoholics Anonymous uses, and this prayer, along with some of your recent comments and thoughts about where you are in your personal journey, helped me realize that looking into the future to be prepared can be undeniably useful yet, in general, the "one day at a time" approach to life is the only way I am going to get through this. When I look at what likely remains of my life and the years ahead, I am scared out of my mind and want to hide in my closet with a bottle of very cheap wine and a giant bag of chocolate-dipped Oreos. However, if somebody asked me if I could just get through today, I would not hesitate to say that I could. Not a problem! That I can do. It's simple yet powerful knowing I can very easily survive a single day, no matter how bad or good it is. My answer would have been quite different five months ago, as I was living hour by hour for the very first time in my life. These days, I can't promise you I'll make it a month, a week, or even two days in a row yet, but I am confident I can make it through one more day. I might not do it gracefully, but I can do it. I can take one day at a time forever if I have to, like rungs on a very long ladder. Now that I have the overview of what WS means, I am going to try this approach. I have been thinking of the things that bring me joy, and my generally yawn-inducing day-to-day life provides me a great deal of pleasure. Erik has given me a greater capacity for enjoying the simple things every day.

It is very nice to now have an overview of the Williams world from a relatively small window, even though it doesn't necessarily provide me with an accurate reflection of all that is true and there are undoubtedly surprises that are not yet visible from where I am at this moment. It is wonderful to be on this journey with you and listen to the description of what you are seeing with me, whether you have a child with WS or not. Thank you for your companionship and being brave enough to tell me that you are a little scared of flying, too. If you ever feel overwhelmed while looking down at the big picture, don't forget to come back to put both feet on the ground and deal with one day at a time. If you need me, I'll be right here doing the same thing.

The Serenity Prayer
by Reinhold Niebuhr (1892-1971)

God, give us grace to accept with serenity
the things that cannot be changed,
Courage to change the things
which should be changed,
and the Wisdom to distinguish
the one from the other.

Living one day at a time,
Enjoying one moment at a time,
Accepting hardship as a pathway to peace,
Taking, as Jesus did,
This sinful world as it is,
Not as I would have it,
Trusting that You will make all things right,
If I surrender to Your will,
So that I may be reasonably happy in this life,
And supremely happy with You forever in the next.


Thursday, August 17, 2006


Last night Brian and I finally sat down to watch the two DVDs I ordered from the Williams Syndrome Association. I made some tea, lit some candles, and tried to relax with an open mind. However, despite this, I felt like I was going into battle. The first DVD was Scientific American Frontiers: Growing Up Different. There were four segments, each on WS, autism, cerebral palsy, and deafness. The segment on WS was short, and I'm grateful for this, as it was my very first glimpse at older children and adults like Erik. In short, it was so painfully intense and telling, it took my breath away. It took place at a California WS picnic and in a laboratory. I was first struck by how profound some of the physical features of WS were. I recognized the familiar upturned noses, crooked teeth, and wide mouths, but in some cases, backs were horribly deformed and skin seemed cruelly tight, especially in some older individuals. I can hardly bear the thought of my son's features looking more like WS and less like us as he grows. I was also struck by how much older some of them looked than their true age. There were teenagers who looked and moved like little old people. The program repeatedly demonstrated how people with WS were often unable to copy a simple shape, add single digit numbers, or tie their shoes and yet easily recognize pictures of faces better than normal people in a laboratory setting or sometimes play multiple musical instruments by ear. I fell instantly in love with a few of the adults and kids featured, and I laughed through the tears that began to flow, especially as I recognized physical and emotional traits I see every day in my own child. What an extraordinary experience this was. The second video contained a 60 Minutes segment titled A Very Special Brain and some random news segments, presumably from the Midwest. In the 60 Minutes segment, Morley Safer visited a WS music camp in 1994 and followed up in 2004 on the children he had met who are now young adults. My heart broke into a million pieces as I heard stories of people who "know they are ill," some of whom asked their parents why they had no friends or why nobody asked to do things with them. When one parent explained how her daughter yearned for someone of her own to grow old with, even old Morley Safer's eyes began to water. I had to get up and get a Kleenex at this point. There was a story about a non-WS brother who was very angry for years because he had been cheated out of a "normal sibling." There was an interview with an older woman who expressed excellent insight as to what it is like to grow up with a disability, and she sparked the first glimmer of hope in my heart all evening for Erik. However, after we were through watching, I went to bed with a sense of dread.

After a day of looking at the big picture, I remember strange-looking human beings who were generally kind, caring, happy, and talented, yet profoundly lonely. What kind of a world is it when babies are born programmed to love other people so deeply and yet made to look and act so differently that they are often shunned? I honestly don't understand. When I stated in an earlier post that people talking to Erik probably won't think anything is wrong with him, I now understand that although that is possible, the reality is that he will likely look and act very differently from the people around him. That is a very bitter pill for me to swallow, but it is reality and precisely what I needed to see for myself. What I was not prepared for was that I knew many of the faces featured in these videos from photos in case studies I have here or from articles on line. Upon seeing these people on video, they were not even close to how I had imagined them. They were much more severe. There was simply no denying that they had a disability and were mentally retarded at various levels, and I would be lying if I said I was prepared to see this. That was a very unpleasant surprise. I envy the parents who were interviewed because they are light years ahead of me in this emotionally and have waded through much of the muck of mourning already. I wondered if they ever found themselves awake in bed at night wondering if they were being punished by God somehow or thinking what awful people they were for wishing that their child was normal. Truthfully, I think these things. I am a fairly rational, educated woman who knows better, but these thoughts torment me occasionally at this stage of the grieving process. In the dead of night, there is no escaping my nightmares, no matter how many years of school I have under my belt or how rational I am in the light of day. If there is someone else reading this who thinks the same things, and I am guessing that there is, for the love of God, just let me know somehow I'm not alone. I am sick to death of a society in which we don't talk about unpleasant things or the simple truth. In the end, it only makes a person feel isolated and like a freak show.

Oprah Winfrey talked about pain the other day. She said that being an adult simply means enduring pain that sometimes brings us to our knees, in whatever form it might manifest itself -- that's life. However, she said it was possible to take this pain and make something great and powerful from it. That really stuck with me and inspired me. I am hoping that sharing my highs and lows will give me power somehow and maybe even strengthen others. I am hoping to find other ways to do this as Erik grows. Would I change things if I could? In a heartbeat. Most of the grief I have isn't for me, although that is an undeniable part of what I am feeling. My heart breaks because of the pain and loneliness my forever vulnerable boy will endure in his lifetime, and it hardly seems fair to me that the innate sensitivity he was given genetically will make its sting that much worse. I love him even more for that and hope to provide him with the refuge and support he needs until I take my dying breath. He is my greatest love, and I would die for him without hesitation. It is my mission to ensure he has a happy life, knows he is loved every second of every day, and is safe and cared for, even when Brian and I are long gone.

Maybe I am going into battle after all.

song by Mariah Carey

When you get caught in the rain with nowhere to run
When you're distraught and in pain without anyone
When you keep crying out to be saved
But nobody comes and you feel so far away
That you just can't find your way home
You can get there alone
It's okay, what you say is

I can make it through the rain
I can stand up once again on my own
And I know that I'm strong enough to mend
And every time I feel afraid I hold tighter to my faith
And I live one more day and I make it through the rain

And if you keep falling down don't you dare give in
You will arise safe and sound, so keep pressing on steadfastly
And you'll find what you need to prevail
What you say is

I can make it through the rain
I can stand up once again on my own
And I know that I'm strong enough to mend
And every time I feel afraid I hold tighter to my faith
And I live one more day and I make it through the rain

And when the rain blows, as shadows grow close don't be afraid
There's nothing you can't face
And should they tell you you'll never pull through
Don't hesitate, stand tall and say

I can make it through the rain
I can stand up once again on my own
And I know that I'm strong enough to mend
And every time I feel afraid I hold tighter to my faith
And I live one more day and I make it through the rain

I can make it through the rain
And I live once again
And I live one more day
And I can make it through the rain

You will make it through the rain

Wednesday, August 16, 2006

Glory Be!

Erik is highly interested in climbing to the apex of anything these days -- furniture, toys, rock piles, mama, dada, etc. Yesterday the truck his sweet cousins gave him months ago had been turned on its side to make the wheels more accessible, of course. He then stood on top of it to formulate a plan to get from there up onto the back of the couch. I was lobbing the components of our dinner in the Crock Pot and glanced over the counter just in time to see this spectacular disaster waiting to happen. I went over to him to gently transfer him to safer ground before going back around to the kitchen. On my way, I turned the truck upright (I'm a neat freak). When I looked up again to check on him, he was straddling the truck like it is intended to be straddled and was propelling himself across the floor on it like he had been doing this for months. My mouth automatically opened, and I began a big old ugly screech of pure freaking elation. My arms flew up into the air and waved around like a crazy orangutan. I then did my best wobbly-kneed touchdown dance. I could not believe my eyes! I then called his father to share the news. He previously had absolutely no interest in riding this truck -- only in mindlessly spinning the wheels. When it is on its side and he does this, I call him "DJ Skooby Skoob" because he looks a lot like a guy at a rave spinning records. He got on this particular toy twice this morning, and I cheered him on again. It's strange how he decides to do things all of the sudden. Maybe his confidence level is better now that he is achieving better balance and body awareness. Maybe he is just humoring me. I'll take it!

Tuesday, August 15, 2006

Trip and Fall

Monday is in the history books. Now for Tuesday. My parents are gone on another bicycle trip, and that means Erik and I are left to fend for ourselves all week. I took him to the medical center to pick up work yesterday, and I was shocked by how much his walking seems to have deteriorated in just one week. I couldn't help but think that it appeared very obvious something was wrong with him, which is unusual. He was dragging his feet, walking on his toes, and tripping every few steps, sometimes falling to the ground. He was very distracted by the vehicles in the parking lot, so I am hoping that was the cause of this setback. He did better inside and, thankfully, was not interested in the waiting patients this time, as one of them was wearing a creamsicle-orange jumpsuit and handcuffs, flanked by a pair of bored-looking uniformed policemen (even prisoners need to see the doctor). There were a couple ladies sitting in front of the dialysis center whom we saw daily two weeks ago, and I heard one of them say, "Did you see the baby?!" We feel like friends now, and I waved at them while Erik smiled his own greeting. Inside the office, one girl had not yet met Erik and was anxious to see him. I held him up to the counter, and all of the ladies made a big fuss over him. In fact, the girl who wanted to meet him, who has a 2-1/2-year-old son of her own, said, "Oh, he's a big boy!" WHAT?! Really? Erik has grown a couple inches in four months and seems to be eating more than ever, and this made me very happy. The average height for a male with WS is 5'6", but I am wondering if he will blow the curve and get as tall as Brian and I are (5'9.5"). He is at the 50th percentile for normal height, although he is still around the 5th for weight. A mom can dream, anyway. The girls gave Erik a couple stickers, and we went on our way.

The smoke from a new fire snuck in yesterday afternoon and made my eyes water. The smog and cooler air in the morning make things feel very fall-like. On top of everything, there are now NFL preseason games on television. I am excited to see football start up again. One of my favorite things is the sound of a football game on TV. It reminds me of my grandparents' house. Years ago, I used to walk or jog my neighborhood for exercise when I lived alone. I was in a very football-crazy university town and would peek in windows I passed by (one of my very bad habits I can't seem to break). I could see the greenish glow of football games playing in living rooms with parties of chatting, snacking people in front of them. It made me ache for a spot on the couch with them in their warm homes and wish I wasn't so lonely. Now that I am married to a die hard football fan, I remember that feeling well and truly enjoy having people over to watch the games with us. It is also a good excuse to tailgate with Brian and his coworkers and cook an alarming amount of food. On the flip side, the autumn chill in the air always makes my stomach lurch the first few times I feel it because it reminds me of the nauseating anxiety I used to feel when the school year began each year, all the way into college. I have an overwhelming urge to buy pencil pouches and Trapper Keepers. I have to remind myself that I don't have to go back to school or get on the stinky old bus anymore, and that sickening feeling goes away. Being an adult has its perks! Did I hate school that much? I am looking forward to my favorite month -- October. I love my family's birthdays and Halloween. I'd better start dreaming up a new costume for Erik!

Sunday, August 13, 2006

Wild Life

I am home happy and healthy, smelling vaguely of campfire smoke despite washing my hair twice. This horrible quality self-portrait is of Chris, me, and Nadine. When I looked in the mirror this morning, my hair was very Tina Turner-like after days of my ponytail absorbing dust and sweat. Friday night I finished work and headed out into the forest. Of course, I left the instructions on how to get to where I was going on the kitchen table (DOH!). Despite this, I beat the sunset by a long shot and found my girlfriends deep in the woods. They had selected a primitive but beautiful spot right on the river down a powdery dirt road. The only humans we encountered all weekend were fishermen and their dogs motoring up the river and drifting down early in the morning and later in the afternoon. When I arrived, the ladies had just opened a bottle of Patrone tequila and were trying to be ever so good until I joined them. Nadine grilled mahi mahi and vegetables, and the three of us ate around the little table in Nadine's brand new trailer (it was only the second night she had spent in it). After dinner, it was off to sit around the campfire, try not to think about the movie Deliverance, marvel at the brilliance of the stars in the sky, drink good tequila, and smoke not-so-good cigars (coff coff). Saturday we got out the lounge chairs, books, and beach towels to lie around in our swimsuits all day long, enjoying the quiet beauty of the glassy river and whispering pines. I eventually got used to the beady eyes of the chipmunks surrounding us. One of the striped little critters was discovered spread-eagled on the screen door of the trailer trying to figure out how to get inside. We did actually lose our chocolate-covered macadamia nuts to one who successfully scaled the screen and entered through the open slider where the doorknob is. We eventually decided to take a quick dip in the river, which was much too swift to really swim in, and then we giggled ourselves just short of urinary incontinence trying to make it back up the steep bank of the river and up the hill without getting our wet bodies dusty. We did more grilling for lunch and dinner and went to bed fairly early Saturday night. One of the problems with being in the woods without laundry to do or diapers to change is that there is so much time to think. I found myself sinking a bit thinking about Erik as the girls talked about their grown kids but pulled out of my slump this morning as I built a fire and dodged projectiles thrown from the tree by cackling squirrels. We had a hearty breakfast and drank our coffee around the fire before I got in the Jeep and began my dusty, quiet drive back into town. It is a gorgeous day today, and I got to see the landscape change several times in my 45-minute journey home. I traveled along the river, lined with lush grasses lit by sunlight and the giant, reddish trunks of the ponderosas that guarded our campsite, which eventually gave way to ugly, lanky, more sparse lodgepole pines, and finally to the fragrant, sun baked sagebrush and juniper trees that told me I was home. Erik did not make eye contact with me when I came through the door. He looked like he was ready for a nap and was happy to let me feed him a snack, change his diaper, and put him to bed, although he didn't seem to notice I was ever gone. The cat, though, is another story. She is reading me the riot act as I type this and is actually going hoarse. Overall, it was a successful weekend and I feel refreshed for the week ahead. It is very good to be home.

Friday, August 11, 2006

Oh Deer

Last night a family of deer came to snack on our trees. There were Mrs. Buck, Buck Sr., and Buck Jr. The guys had horns covered in brown velvet. Luckily, anything that has survived to this point in our yard the deer have turned their noses up at. They have devoured everything else with gusto. We recently lost our wild rosebush (moment of silence please), which was ripped out by the roots by a hungry doe. Any other plants I wish to enjoy are in pots up on the porches, where deer do not grocery shop. When Erik saw the deer last night, he was very excited. He ran to the windows and looked out before frantically trying to get out the front door (if it was unlocked, he would have been long gone). He kept saying, "Woof woof! Woof woof!"

I am packing for our second annual girls' campout with some good friends from my old job at the clinic. I am planning on leaving this afternoon. The first thing I packed was mosquito repellent. I am lucky enough to have a friend with a brand new trailer, so we won't be doing much "roughing it." It will be good to get away and relax, although I will miss my baby boy. See you next week!

Thursday, August 10, 2006


Last night I was finishing up work when Brian and Erik came in from playing outside. Erik was DRENCHED and looked so pitiful. His shirt was transparent and clung to his little body like he was in a pediatric wet T-shirt contest. He had pieces of grass stuck all over him, and his hair was in a big swirlie. His chest was heaving like he had just run five miles. I laughed and asked, "What happened?!" Brian told me he turned on the sprinkler system, thinking Erik might like to play with the little sprinkles watering the flower beds. However, Erik saw the big jets of water shooting across the lawn and took off toward them. He was simply thrilled by running through the water! In fact, he cried when he had to come back inside.

I have had a headache for three days now. It is beginning to morph into a migraine, but I don't have time to be down. I have to pick up work, get my teeth cleaned, and most likely work this evening. Brian is headed to the golf course this afternoon with some people from work for a well-deserved outing. He is going to have to dust off his clubs, as it has been a couple of years since he has hit the course.

The rest of the week is going well. We have no therapy scheduled for a few weeks, as this is summer break. Erik mimicked the words to yet another song last night on the way home. I always think I'm hearing things when he does that. The photo here is one I took this morning. When Erik gets out his toys, all of the cars and trucks end up upside-down so he can play with the wheels.

Tuesday, August 08, 2006

I'm Neil Patrick Harris

Random Thought: Sometimes I feel like TV's Doogie Howser, MD sitting in front of my online journal. Remember that show?

Yesterday was a decent day. I accomplished some house cleaning in the morning and had the opportunity to talk to Amy on the phone for the first time. Although my friends and family are a critical part of my support group, it is such a luxury to talk to my new friends who understand what we are going through (Thanks, Amy!).

After work, I hung out with Erik at my parents' house for a while and then headed home to heat up some leftover sloppy Joes for the boys. Erik drank from a sippy cup for the very first time. He was eyeing the beverage I was enjoying, so I got him his own cup full of water. I sat him on my lap, and he began to chew on it but successfully drew some water out of it eventually with his lips. I have been trying to teach him how to do that for months. I had to show him how to stop before he drowned! While I am grateful he has been able to drink out of a regular cup for some time now, which is a more useful skill than using a sippy, it will be nice not to have a sloshing cup of milk when I am playing "stewardess" on road trips. What this entails is unbuckling my seatbelt and cramming myself between the two front bucket seats (giving oncoming traffic a most unflattering view of myself) to get to where he is to serve him meals as we drive down the road. The first time I did this was on the way to the hospital in Portland for our appointment with the geneticist, and I was actually surprised we didn't make a gigantic mess. I felt like Lucille Ball trying to make pies while Desi was driving in the movie the Long, Long Trailer. A sippy would make life so much easier. I am also guessing that a sippy is good for toning his facial muscles as well. I am still working on his skills with a straw.

Speaking of hospitals, at dinner Brian and I discussed our concerns about our insurance coverage for Erik. The only pediatric cardiologist in town is at the clinic I used to work for. She is someone I respect and trust with Erik's life. However, according to the local news and the letter we just received, they no longer will take our insurance because of contract problems between the clinic and the insurance company. This means that the insanely expensive echocardiograms we need on a regular basis will no longer be paid for, so we will most likely need to go to the valley to get them done. More road trips for us.

When it was bedtime, we put Erik down and headed out onto the back porch. I put on my fuzzy slippers, sweats, and two blankets to keep warm while we enjoyed hot beverages and watched the lightning storm. A black curtain formed in the south, and we watched it slowly pass by with sheets of electricity illuminating the entire thick cloud layer and sagebrush below and then brilliant, jagged veins of lightning sometimes snaking sideways or violently spiking the ground. At times it was so bright, it looked like daylight. A few of the more violent, nearby strikes made me gasp out loud. The top of the cinder cone in the center of town was cram-packed with cars full of people watching the show as well. It was almost as good as the Fourth of July. When it began to rain sideways and the lightning began to subside, I felt a little like I was on the prow of a fishing boat, and no matter how exhilarating Brian tried to convince me it felt, I decided it was time to crawl into my warm, dry bed.

Sunday, August 06, 2006

Family Picnic

We drove over the mountain to Brian's folks' house yesterday for a family picnic. We had a relaxing time out by the pond with Brian's relatives, eating good food and enjoying the warm but relatively mild weather. Erik got to meet his grandparents' dog, a sweet, mild-mannered golden lab, the name of which I don't think I ever learned. The valley is so beautiful any time of year. Everything seems to be in Technicolor. While I am thrilled to have any plant higher than six inches tall with a blossom on it the size of a dime here (you need a jeweler's loupe to see some of them), many valley residents are busy hacking at what has grown in their front yard with actual machetes to keep their homes from being overtaken by nature and enjoying fat rose and hydrangea blossoms the size of their heads. Brian and I sometimes have trouble identifying plants in the valley, as they are the distortedly gigantic, Land of the Lost version of what we are familiar with on the high desert. Brian's parents' have a large front yard with one of each of every tree known to man surrounding a waterfall, pond, and creek stocked with colorful koi and goldfish zigzagging under a layer of floating lilies and riparian plant life studded with brilliant blue and orange dragonflies. We had a picnic lunch in this setting and took turns keeping Erik from going head first into the pond or running miles down the road Forrest Gump style. The way he runs isn't close to being graceful, but it gets him from point A to point B quickly. What he lacked in grace he made up for in enthusiasm, crashing through tall grass without a real plan but enjoying himself anyway. We did let him splash in the creek a little bit, and I brought bubbles with me, which still hold a little entertainment value. He was taken with the little green lawn sprinkler that he could spin, but not nearly as much as he would have been in months past. He seemed to be more interested in the dirt, rocks, and water than anything else. He also easily chose being dirty over being social. Every inch of skin and clothing on our boy was faintly tinted dirt brown when we left, and he slept soundly most of the way home. The drive back was uneventful, and we are now settled back into the rest of our weekend.

Friday, August 04, 2006


Thanks for your thoughts, prayers, and e-mails regarding Erik's therapy this week. He walked from the car all the way to his classroom for the first time Thursday (we had to stop and pay homage to the short, yellow bus, of course). A girl in the hallway cheered him on as he walked up the ramp but eventually ran out of patience with our snail's pace, so she took his other hand, and all three of us inched up the hallway and into the classroom. I told Brian that things have changed dramatically for me since I entered that classroom for the first time. I recently tried to explain to Bev, our early intervention specialist, why going there is upsetting to me, but I had trouble expressing my thoughts in words. First of all, that building houses a horrible memory for me. It is the place where our fears were confirmed that Erik was severely developmentally delayed before we even knew about WS. Of course, I now see the facility as a place full of kind people who care about my son and want to treat what he has in order to help him achieve independence. We will use this facility for probably three more years, and it will be a big part of our lives in that time. I am incredibly thankful for the opportunity to use it. However, I will never forget that awful day of testing. One of the therapists said to us that day, "I hope what we say to you today won't be completely devastating to you." That was the exact moment I realized our lives were going to change forever. It is not the sort of place I find cheerful or uplifting at all.

Now that I have been in and out of that building a few times, I have grown to adore the kids there, even though I am not a real kid person to begin with. Maybe once I get attached to a child, I love them more intensely because of that. There is one little boy who did a lot of ear-splitting screeching at the beginning of our first session there. Like all of the other kids, I have seen him improve greatly over the past few weeks. Unfortunately, Thursday was an off day for him, and he was screaming and enthusiastically hucking toys (my reflexes are pretty quick, and I successfully avoided getting smacked in the side of the head more than once), which, for lack of a better term, freaked Erik out this week. Erik is in a small group of kids who comes weekly instead of monthly, so there are different kids there every week. This group was much more noisy than usual, and Erik went into shut down mode. I hate that. I left him there to pick up work at the medical center, and when I came back, he was sort of slumped over in the sandbox outside. The therapist working with him said he had been unusually unresponsive and just didn't seem to be having a good day. When the kids went inside for snack time and closing circle, I was provided with some instructions on exercises to do with Erik's face to help improve his muscle tone. Because his tone is mildly compromised, his mouth doesn't close all of the time, resulting in a lot of drooling. I was also given a Nuk brush, which was something I had never seen before. I couldn't decide if it looked like it came from a dentist's office or an adult bookstore. It is a spiky, cylindrical rubber brush to stimulate Erik's mouth and get him to chomp down more aggressively. I tried the exercises yesterday but found it only made Erik gag. He has a couple of very sensitive spots in his mouth when I brush his teeth, and I think I hit one of them, which triggered the gag response every time I tried to continue, no matter where I placed the brush. I decided that I would try again but would stop for the time being. I consulted the instruction sheet and saw that it listed other things I can do, such as providing foods that are more difficult to chew, including raisins and gummy bears, and having him blow bubbles. After making him gag, I decided blowing bubbles would be a good thing for us to do, but he wasn't interested in blowing them much after the last exercise (he wasn't certain what I was going to do next and protected his face like Mike Tyson in the middle of a fight).

I called Aspen for the first time yesterday. She is in our group of WS moms and lives in New Mexico. You might be familiar with her comments on this blog. She has been in Washington, DC helping her sister move there this week. Lisa, another wonderful and generous WS mom in Maryland, met Aspen for the first time there and has been helping them with the move. When I called Aspen yesterday, she and Lisa were standing in the National Cathedral on a sightseeing trip. Talk about an echo! I told her that I understood flying buttresses wreaked havoc on cell phone reception, and she called me back once they got to the car. It would be wonderful to get her son Daven and Erik together with a big box full of toys with wheels, as they share the same obsession. I wanted so much to be in the car with both of them on their adventure, but it was very good to talk to her and hear Lisa in the background. It is amazing how you can love someone you have never met.

My WSA DVDs arrived yesterday. We won't watch them right away, as we are headed to Brian's parents' house for a family picnic today. I hope to get some good pictures this weekend of Erik being the life of the party (hopefully). Ciao.

Wednesday, August 02, 2006

Another Day In Paradise

Well, there's no place that I'd rather be
Well, it's two hearts and one dream
I wouldn't trade it for anything
And I ask the Lord every night
For just another day in paradise

"Just Another Day in Paradise" -- Phil Vassar

I am fighting fatigue because this evening is so relaxing that I don't want it to end. Brian is battling killer zombies on the other side of the office on his computer, and I am making the rounds to my friends' blogs in our cozy techno neighborhood. I feel like I have had a cup of coffee with each one of them. Now that I am caught up on my friends and their adventures, it's time to reflect on what has happened in the last couple of days to our family.

I'm still in survival mode as far as work and Erik's therapy goes this week, as Boppa and Grandma are still away on their bike trip. Therapy was canceled this afternoon, which turned out to be a positive thing because Erik didn't go down for his nap until about 1 p.m. (therapy is at 1:15 p.m.). Tomorrow he goes to his little group session. He has been getting up between 6 and 7 a.m., which doesn't leave me much time in the morning to organize my day, but he has been very patient with my running around the house like a headless chicken as I make phone calls, print out ophthalmology letters, e-mail medical reports, and transcribe during his naps here and there. Brian has been coming home as early as he can so I can finish any work that needs to be done. For the past two days, Erik has successfully walked across the parking lot into the medical center, to both of the offices I transcribe for, and back out across the parking lot to the Jeep while holding my hand. My baby-schlepping arm is very happy to be in semi-retirement. Yesterday we encountered a giant Pepsi truck in the parking lot making a delivery, and we were mysteriously but definitely obligated to stand motionless for several minutes to listen to the chunky rumble of the engine. Today someone pulled up to the front of the clinic in a sedan, and Erik insisted we stop and stare at this poor woman in her shiny, blue car for a very socially unacceptable, prolonged period of time from an uncomfortably short distance away. Looking back on that moment, I am giggling. There is a new song on the radio now we hear every time we are in the car together. I am unable to name the tune or who sings it yet, but the chorus contains the words "Ah noooooo...ah nooooooo." Erik is beginning to sing along every time they play it! I imagine it's officially time to turn off the rap and death metal (hey, I love just about every type of music) and maybe program the easy listening station onto the first button on my car stereo. In other Erik-related news, I bought fresh strawberries and blueberries this week, and Erik ate them without much trouble. They are a little sour for him, but he seemed to like them despite the river of saliva they seemed to create. He is still not a huge fan of my cooking, and we still open at least a jar of baby food for dinner most of the time, but we are getting there. He hates the prepackaged toddler food with a purple passion. We are still stuck on Gerber 3s. He eats a lot of the Gerber lasagna and spaghetti, but he is eating a variety of other regular fruits and veggies in addition to his assortment of cereal, crackers, cottage cheese, PB&J sandwiches, and yogurt, so I'm not too worried about his diet. He is also saying "hi" now. I am almost certain he said "bye-bye" to my friend Kelly today, but the jury is still out on that one. I am still slightly skeptical, but after the spurt of development that has occurred in the last two weeks, I am not surprised by much. This week I also retired the infant bathtub we have been washing Erik in for almost two years. His legs were beginning to stick out the end of the thing. I retired the infant car seat for the same reason. I snapped a photo of his first big boy bath and will attempt to attach it to this post. He has also learned to open doors. Look out, world (look out, Gracie!).

As for the DVDs from WSA I ordered, they have not yet arrived. I ordered additional items on their website to give for Christmas gifts which sold out at the national convention, so there has been a delay in my order. The anticipation is killing me, and I think I'll feel better just having them here in shrink wrap for a while. I know watching them will be a very gut-wrenchingly emotional experience for both me and Brian, and I'm not even sure I can get through them in one sitting or even in one day, but I'm ready to try. I made it through the book over a period of weeks, but that was very early on, and I read it only because it was necessary to determine what this rare diagnosis would mean to our family. The information I got from the book was less than uplifting, as it was actually worse than I expected, but now that I have two feet in reality and am familiar with what we are dealing with, I am hoping it won't be such a shock to "meet" some older kids and adults on the videos. Truthfully, I am expecting a little shock, anyway, but I will watch them with an open heart and mind holding tightly onto Brian's hand.

That's the news from the Big House for now. Wish us luck at group tomorrow.

Tuesday, August 01, 2006

Walkin' the Walk

We survived day one without Grandma and Boppa. I took Erik to the medical center, and he walked from the Jeep all the way to the building and to both offices where I pick up work for the very first time. He walked on his toes the whole way, but the little guy made it! I think the sensation of walking out in the wide open blows his mind. He stares up into the sky a lot. There weren't many people in the waiting rooms, which was good, because he feels compelled to stop at every patient, most of whom are not feeling well. I saw an empty wheelchair inside the entrance to the building and winced, but he didn't seem to notice it and kept going (if he had, we would still be there). The boy is simply too heavy to carry very far anymore, especially while I'm trying not to wrinkle paperwork and drop tapes all over the ground. It is also hard to look professional lugging a toddler around, even though everybody loves him. My guess is that he is close to 25 pounds now. My left arm is going to look like it belongs on Popeye the Sailor Man soon if he doesn't start to carry his own weight. Sadly, if that happens, it will be necessary to get an anchor tattoo (I already eat the spinach). After the medical center, we headed for the grocery store. It was crowded, but it was good to get out of the house and forage for some food. Erik went into his shut down mode and was completely silent as I pushed him around the store for quite some time. He didn't even reach out for anything. I actually got right in his face to see if the lights were on in his noggin, and he didn't really respond. When I was fumbling with my purse in the checkout area, I felt his meaty little hand on my arm and looked down. He was smiling up at me like a complete angel. In fact, I began to suspect that he was working me just a little bit. I think he wanted to go home. I overheard a woman telling the checker at the next cash register that her little boy was 21 months, and I craned my neck to see this child (again with the self-torture). He was animated, smiling, and playing with everything around him, of course. I looked down at Erik and realized what a dream he is to take anywhere. He then smiled at me again. I just love the secret language we seem to have with each other.

God Sent to Me an Angel
by Paul Dammon

God sent to me an angel,
it had a broken wing.
I bent my head and wondered
"How could He do such a thing?"

When I asked the Father
why He sent this child to me,
the answer was forthcoming,
He said "Listen and you'll see."

My children are all precious,
and none is like the rest.
Each one to me is special,
and the least is as the best.

I sent each one from heaven
and I place it in the care
of those who know my mercy,
those with love to spare.

Sometimes I take them back again.
Sometimes I let them stay.
No matter what may happen
I am never far away.

So if you find your angel
and you don't know what to do,
remember, I am with you,
love is all I ask of you.