The Agony of D'Feet

My friend previously asked me to do the ALS walk, and I quickly agreed. Because his disease is not public knowledge, I keep his name from my posts. At his suggestion, I named our team something random and ended up choosing something based on a private joke between the two of us.

We arrived at the park where it began, and Gloria Estafan music bubbled loudly from two speakers held by metal stands. We checked in and were provided shirts. I went behind a bush and peeled off the shirt I wore, replacing it with my new one. We then walked to a quiet spot by the river within earshot of the festivities and began one of our usual conversations peppered with horribly dark humor other people would likely find offensive and tried to relax. When it was time to take team photos, we remained steeped in our anonymous, private spot and continued to talk until the walk began. When my friend spotted bobbing, colorful helium balloons, he jokingly complained he didn't receive a "f*cking balloon." I quickly offered to approach a volunteer and ask for just that. And right f*cking now. He laughed at the overly sweet tone I used to express such profanity.

The Walk to D'Feet ALS is not a race. There are no numbers to pin to your T-shirt or striated, muscular legs bouncing nervously about at the beginning of the thing ready to lead the way. This is because ALS takes your ability to ambulate on your own completely from you. If you can walk at all, you are ahead of the game. There were just barely enough people to classify us all as a crowd. The T-shirt I wore said, "Walk to Defeat ALS. Because you can." An ominous string of brand new, empty wheelchairs on display lined the starting area. I tried not to look at them. I made the assumption that most of the people walking were friends or family of those who had passed away from ALS. Many wore stickers that stated they were walking in memory of someone. I only saw a few men in motorized wheelchairs, and they zipped by us with gusto. It was obviously a struggle for one man to speak. Another man sagged forward in his seat, surrounded by loved ones smiling and laughing. My friend noted that he did not see many people with oxygen tanks and ventilators to indicate they have the type that he himself has been stricken with (bulbar onset). I nodded and then glumly noted I saw nobody at all fitting that description.

Not a good sign.

It was strange attending another fundraiser for anything other than WS. Apparently, George W. Bush recently approved a patient registry for those with ALS, which is a step in the right direction. I know what it's like to grapple with something that has no cure, but I do not know what it is like to eventually forfeit the last of your hope and die from it. Amazingly, my friend still has hope most days, despite his slowly progressive symptoms. If anyone can beat this thing, he can. After all, he is the most bullheaded, stubborn bloke I know. He tells me constantly that he is a "gamer." Because of this, it is still really difficult for me to see anything but his strength. He also hides his pain from me. I am largely blind to his physical difficulties, so when they are visible to me, I am positively shocked. As the weeks go by, however, I find myself less and less shocked by the frequent trips to the hospital and the breathing treatments.

We began the walk, and it became clearly apparent I had consumed way too much caffeine. I was very edgy and felt like shooting someone. I was soon able to relax and began to enjoy the sights along the river. We passed beautiful girls clad in Lycra exercising and families lounging at metal tables enjoying juicy hamburgers at a local restaurant. We provided a running commentary of it all, as we usually do. We caught the scent of food sizzling on grills and seafood smoking and groaned obscenely. He apologized for needing to stop halfway at a park shelter to rest. He seemed to be in thinly-veiled agony, fighting one leg that didn't want to cooperate, but he continued anyway, limping to various degrees along the trail. Despite this, we were not last. One more team finished behind us, and we found this perfectly acceptable.

We finished the walk, quietly exited the park, and began our search for food, which my friend now has trouble enjoying because of swallowing and resultant lung infection issues, for which he is on IV antibiotics now. He devoured a respectable amount of food, anyway. To my amusement, the bartender was politely warned that although I definitely looked the least frightening of the two of us, I was horribly dangerous without food in front of me. He laughed at this and hurried to get our plates, which came to us hot enough to raise blisters on our fingertips. We dined on shrimp, chicken, and crab in front of a football game playing out on the screen above us. I savored the way my glass of chilled pinot gris perspired in my palm.

And I tried not to think about next year's walk.

Sorting Things Out

Erik emptied the silverware basket in the dishwasher the other day. Unfortunately, the dishes were filthy. He put each and every piece of grimy flatware and crusty cooking utensils in one top drawer of the kitchen island. I think I successfully extracted them all from the rather busy drawer, but, admittedly, this has added an exciting twist to cooking, as I have no idea whether the item I pull from that drawer will be coated with old peanut butter or not.

Last week I also caught Erik loading the new washing machine, for which he has developed a borderline new obsession. When I turn the thing on, he retrieves his favorite blanket and Stinky Dog and sits in front of it to watch it work, giving me 45 minutes of peace and quiet to work out or drink coffee. When I discovered him in the middle of loading the machine that day, I attempted to remain serious, but seeing him stooped over to hastily cram clothing and a collection of nearby shoes into the thing killed me. The horrified look on his face as I rounded the corner was priceless. I stifled a giggle and began to explain the art of laundry sorting. Surprisingly, the kid seemed to at least begin to understand.

New sentences --

"I am looking for some cars."

"Give me a high five, please!"

"Mommy, do you have to work?"

"Gracie, go upstairs NOW!"

"I need to go outside."

Pieces

(Brandon and Erik admiring a caterpillar lounging on a leaf)

I met Brandon and his family for lunch here in town today. I grab every opportunity I can get with other WS families. Brandon and Erik are so incredibly different in many ways, but they look adorable together and seem to truly like each other. Brandon now has a beautiful baby sister, just a few weeks old, and Erik did better with the baby noises that came from her, although he still clung to me and acted as if she were packed full of ammonium nitrite and ready to explode at any moment. On his list of things that give him the willies, babies are definitely numero uno. Luckily, Brandon's parents are on the same page (the one that lists the potential jacked-up side effects that tend to occur when you subtract twenty-some odd genes from chromosome number seven) and did not take offense in the slightest. What is strange to me is that Brandon seems to be fearless when Erik seems to exercise an excessive amount of caution in unfamiliar surroundings and does not seem to be bothered by sounds like Erik is. They definitely both have very unique strengths and weaknesses, despite having the same syndrome. Did I mention how cute they are together?

I read the following article on line this evening about the death of a 35-year-old man with WS named Dave Hahn. Although I did not know this man, my heart absolutely ached when I saw his photo. He has features like my son. The same eerie physical similarities that come from belonging to a very special family consisting of those who have a genetic birth defect that makes them more perfect and good-hearted than I could ever be, no matter how hard I tried. Over the years, I expect to hear the news of many more premature deaths of those with Williams syndrome, but I can't imagine it will get any easier. Each time, a little piece of my heart seems to float up into the night sky and leave a dark hole in my chest where it once was. I know that in his community there is a hole that will never be filled. It hurts.

I learned the hard way just over two years ago that life isn't fair but it is precious, and I continue to learn that lesson in unexpected ways. Every single day with my son is a gift. This ride is difficult and sometimes very painful, but it could end without warning, so I find joy in it as much as I can. Erik has changed me so much. On the ride back from the valley with Brian last weekend, I looked out my window as we traveled down the highway, and we were slowly overtaking a motorcycle to our right. Behind the man piloting the machine sat an older, surprisingly proper-looking woman. She was very gracefully enjoying a hamburger, taking delicate bites despite their respectable speed, and she looked so incredibly content that I found myself smiling broadly. She glanced over at me, and couldn't help myself. I waved enthusiastically. She waved right back and connected me that much more with the world. I used to look at the ground as I went about my daily life, but now I sometimes take the time to look up into the faces around me. It's what Erik would do, and I can thank him for that. I have no doubt that the world is a better place because of the special people like my son.

I know my little world sure is.

Godspeed, Super Dave.

Picture Chicken

I dread the process of getting good photos. I went to Sears this year, as it would save me about $500, and the photos are about the same, in my opinion. Erik heard me say, "Do you want your picture taken?" but interpreted the last two words as "picture chicken," so that is what he kept repeating all morning. As it turned out, he ended up being a little chicken. Because of his fears of any sounds the camera and lights might make, his anxiety ramped up to a new level, and it was difficult for three of us to convince him to lower his hands down from being clamped over his ears. It was even more difficult than last year, and I felt my heart sink as his face turned cherry red and he began to cry, refusing to comply with any of our instructions. As usual, though, the young things working in the studio captured almost every fleeting smile on his lips. They even shot photos of him covering his ears, working with what they could get. An added bonus was that the door was left open, and the room was a pleasant temperature first thing in the morning. That meant that even though I crawled around over the filthy floor attempting to make Erik smile, there was no river of back sweat being channeled down my butt crack this year.

At the end of the session, I felt like ripping my hair out by the roots and sobbing. When I was allowed to view the end result, though, I rediscovered how beautiful my baby is to me. My heart actually skipped a beat.

Coming Soon

Erik has his annual photos taken tomorrow! Stay tuned!

(I had another good day!)

Dandy One

(My father helping Erik blow bubbles. Erik calls the large bubbles "dandy ones.")

I had a good day today. I don't seem to have many these days. It was rather lovely.

Despite the heat, autumn is in the air. There is the scent of earth and ailing foliage baking in the hot sun. This warm mixture of death and life fills my nostrils. I roll down the windows in my vehicle and let all of it into my lungs. I drive past my old schools, one of which has recently been razed to make way for a new one, and feel more than a little nostalgic. Last week I drove past the ancient brick building that housed my fourth grade physical education class and had flashbacks of running laps over the glossy wooden floor. My gym instructor sometimes wore paint on her face that make her look like a rather fetching version of Gene Simmons. If the boys didn't behave, she would kiss them and leave black and white smudges on their cheeks. These days that kind of stunt would trigger a multimillion dollar lawsuit. Now that I think about it, she was probably the last gym teacher I had that was remotely interested in kissing boys, anyway.

Not that there is anything wrong with that.

Erik continues to do well off dairy. He refuses to consume soy milk but will eat soy yogurt and cheese. His bowel issues have almost completely resolved. He has discovered the joy of asking more complex questions. He has queried, "Are you ready to go now?" and "Do you watch Elmo?" He seems to be realizing that these kinds of questions start conversations much more effectively than random words (Boppa! Monster trucks! Wheels!) or rumbling engine sounds, which previously made strangers squint in confusion and look to me for translation. He still tells jokes that make sense only to him, and he laughs hysterically at them. He is amazing. His motor skills are still horrendous, and he doesn't show signs of substantial improvement in this area, but he gets around quite well if he is not distracted. Once he is outside in a bustling environment, he tends to stumble and fall more. Amazingly, it looks like soccer comes naturally to him. While he can dart about kicking a ball, he seems quite annoyed when the concept of passing it back and forth is suggested.

He has finally mastered the stairs in our house. I will never forget his therapist walking him up and down our stairs over and over. His legs just didn't seem to work the way they should, and I dreaded this exercise because it seemed hopeless to me. When her Subaru used to pull out of the driveway, I would burst into tears. I still remember this well and detest our stairs, although Erik now races up and down them at light speed, sometimes not even bothering to use the handrail. He has only fallen once.

I got his little plastic blocks out the other day, bracing myself for yet another disappointment, and he actually stacked the dang things for the first time. He was shaky, but he did it and seemed annoyed when I tried to help, which I was pleased to see. He obsesses less about wheels and more about sprinklers, talking about sprinklers and sprinkler-related paraphernalia each time we leave the house or drive past a park. He wants to go next door to see the neighbors' sprinklers and asks me over and over if they will be on, sometimes as soon as he opens his eyes in the morning. The last time we went to a playground, he was merely interested in playing with the drinking fountain, using the slide and equipment only to humor me.

Erik's echocardiogram is scheduled for the 18th of November. There is no way we will be able to get him to lie still for the study, so sedation will likely be necessary. I will be fine after the study but will feel intermittently nauseated for weeks until that date comes and goes. If all goes well, we only have one more year of annual heart checks. Hallelujah.

Tonight we just finished my father's birthday dinner, and the house smells like meatloaf and potatoes. I stuck a candle into the glistening crust of a freshly-baked apple pie my mother made, and we sang "Happy Birthday." Erik sang the loudest. He loves birthdays. If you ever want him to sing to you on yours, just give me a call, and I'll put him on for you.

All in all, it was a very good day.

First Day

Erik started school this week. He was less than excited to get ready to go the first day but seemed completely at home in the classroom when we arrived. He marched in like he owned the place, which was a first. Although the teachers, therapists, and bus drivers seem to adore all of the children Erik goes to school with, it has become apparent over the last year that he may be receiving more than a little bit of extra special attention. Sometimes I suspect he is on the verge of obtaining true celebrity status. I watched my kid work each adult by raising his voice slightly to an additionally adorable octave, gently reaching up to squeeze their hands, and tilting his head to achieve the most effective angle of cuteness as he greeted everyone. By the time the new bus driver came up the driveway, she was giggling and gushing over him. She admitted that she had been gazing at him in the mirror above her head during the ride and had informed him he was very cute. Today I baked a plate of cranberry-orange muffins for her and included one of the cards I carry in my purse about Williams syndrome. This is my standard awareness-raising technique. It's just impossible to go wrong with baked goods/griddled items of any sort. I plan on taking over the world by doling out one cookie at a time.

I spent the afternoon baking a butternut squash and transforming it into a spicy, Asian-inspired soup I ran through my blender in batches for my friend with ALS. I purchased extra food storage containers and a cookbook written for people with dysphagia (swallowing and chewing problems) so I could freeze him meals. He is slowly starving to death and refuses a feeding tube, at least for now. When I can't cook food for him anymore, I won't know what to do. While the squash was cooling, Erik suggested we go for a ride in the Jeep Wrangler. I haven't driven it for years but agreed to fire it up, much to Erik's surprise. I don't think he knew his mama could do that. We circled the property three times with our hair blowing in the breeze and sunshine on our faces. Each time we came to our driveway, Erik would say, "Again, Mama!"

I have pondered taking a break from writing since my personal life has taken a difficult turn and I have begun to pour any extra energy into survival, but I prefer to keep things open here. I really miss writing as often as I did and hope I will find some time to sit down now that school is back in session. I'll be back, although it may be a few days between posts at times.

For now, though, I am preparing for a child-free weekend of screaming my lungs out at an Oregon State game and a trip to the casino with Brian. I hope to experience some blogworthy adventures and hope to return refreshed.

Hummus Among Us

For nearly four years now Erik's sensory processing issues (hyperacusis) have required that I take any minor kitchen appliance that makes a substantial amount of noise to the garage or behind two doors in the master bathroom to use. Since I started Weight Watchers over a year ago, any neighbor of ours who drives past our house to work has been treated to the sight of me sitting in my bathrobe on the porch after a sweaty workout. I plug the food processor into the outlet there to grind up my hummus for my mid morning snack. It hasn't been all bad. I sit there and enjoy the sunshine to the horrific screeching of the machine and watch the surrounding wildlife startle and scamper into the bushes. There are times, though, I wish I could just do it inside. I think, boy, that sure would be handy. And the deer would be happier.

I am proud to say that I made hummus in the comfort of my own kitchen for the very first time. Erik clapped his palms over his ears to protect himself but didn't cry or even really seem to mind. At least much. His curiosity dominated any discomfort he was feeling. Now if I could get the kid to eat some of it with me...

Goooo, Erik!



HUMMUS

1 (15.5-oz) can chickpeas
4 tsp tahini (or smooth natural peanut butter)
1 Tbsp lemon juice
1 tsp grated lemon rind
1 clove garlic
1/8 tsp ground cumin
1/8 tsp salt

Drain and rinse chickpeas, reserving 1/3 cup of the canned chickpea liquid; set aside.

In a food processor or blender, combine the chickpeas, tahini, lemon juice, lemon rind, garlic, cumin, and salt. With the processor running, gradually add the reserved chickpea liquid through the feed tube and process until smooth.

Per serving (1/4 cup): 63 cal, 2 g fat, 2 g fiber = 1 point

Dental Damn

Erik and I went to Dr. Mike, the children's dentist, yesterday. When I previously scheduled the appointment, the receptionist asked if Erik needed a routine cleaning. I hesitated and answered yes. We never had a real cleaning before. Just an exam. Is anything really routine in a medical office with Erik? I knew that they would review the chart before they saw us. Right?

When we arrived, Erik and I were instructed to sit in a large waiting room flanked by doors leading to our dental office and to another pediatric clinic. I stared at the door in front of me. It had a translucent panel of glass in it, making me think of old black and white movies for some reason. I suppose it seemed to me like every good detective or private eye had a door like that with their name stenciled on it. This door, however, had a cheerful-looking giraffe painted on it. The advertisements for the office repeated the phrase, "Kids...that's all we do." I hate that. It sounds...well, like something one shouldn't announce. I bounced my knee up and down as Erik crawled under my chair to get to the wheel on a piece of play equipment that was pressed up against the furniture as the other children played with it very appropriately, pushing little wooden cars around a series of tracks cut into a brightly-painted board. I heard the wooden circle beneath me begin to spin, and Erik's stiff, long legs stuck out from beneath my chair as other patients and their parents walked by to get to the pediatric clinic. The glass door opened a few times and revealed children holding yellow balloons printed with the name of the place on them tied to little plastic bags containing cheap toys and toothbrushes. When the little girl who played next to me left to find her mother, I noticed all of the wooden vehicles she touched were left neatly in tiny parking spaces lined with white paint.

After the hygienist came to get us, we followed her back through a cramped maze of hallways and exam rooms to an open area with bright blue dentist chairs in it. Stuffed animals stared at us with unblinking eyes from the corners of the room, and Erik asked for the one that resembled Cookie Monster. We waited for the hygienist to arrange her tools on a tray, and I winced when Erik pressed Cookie Monster's stomach and the toy began to laugh, shake, and talk. Erik jumped but laughed in response. I noted that the voice wasn't right at all. He sounded more like Krusty the Clown than a proper muppet. As Erik ran his fingers over his belly, the blue creature chuckled through a voice that sounded wounded by a three pack a day habit. I shuddered. Boy, this place really tended to give me a case of the freakies.

The hygienist, a very attractive, young woman began to talk to Erik. His anxiety visibly ramped up, and he asked to go play. She yarded a length of hose towards her, and at the end of it was a rotary cleaning tool. I felt my own anxiety level spike. I felt like blurting out that we had never used these tools before, but I refrained. There's a first time for everything. Instead, I asked her if it was loud. She said it was not, like all well-meaning people do before firing up power tools and other construction equipment in small rooms with us. She used my hand to show Erik it was harmless, pressing it into my index finger (Note to self: Get manicure before seeing Dr. Mike and his staff). Although Erik did remarkably well, I began to suspect she had not seen the notes in the chart and was unaware of Erik's noise sensitivity or his syndrome. I'm not sure if it was Erik or my reaction that caused her to put the cleaning tool away, but she soon tucked it back into its holder and moved on. She let Erik drink from the little tool that dispensed water and showed him the vacuum I call "Mr. Thirsty." He was mildly amused but still squirmed in his seat, asking for wheels to spin. She held up about 14 colorful toothbrushes and asked him to pick one. He simply sat in his chair and stared at her. She said something about Spongebob, and he repeated what she said, not seeming to know what else to do. She selected two with Spongebob on the handles, and I asked Erik to point to the one he wanted. Again, he sat there quietly without moving, and I silently cursed this whole ridiculous process. My patience was waning. I wanted to scream, "Just give him the f*cking toothbrush, lady. Erik doesn't even know who Spongebob is!" But, as I am generally very polite, I did not. I smiled and quickly selected one myself. She then asked Erik if he took vitamins, and I calmly explained that I was not to give him vitamins because of the syndrome he has. I did tell her he took fluoride. She then "cleaned" his teeth with his new toothbrush and regular children's toothpaste, which Erik has also never had before. I could read his mind as he smacked his lips and tried to politely hide his disgust. As he looked up at me, I could see his thoughts very clearly (Spicy!). The hygienist finished up, examined Erik's chart, and passed Dr. Mike, who was emerging from an exam room containing a boy lying flat with a nozzle dispensing gas affixed to his nose, making him look like a suckling pig atop a dinner table. The people around the boy cheered him on enthusiastically, as if he was playing a contact sport.

The hygienist let out a whisper-hiss to Dr. Mike as she went by.

"HE HAS WILLIAMS SYNDROME."

Dr. Mike approached us next. My enthusiasm for his technique has dwindled a bit. He tends to be quite rough, although he is efficient, and uses the word "pretty" to describe everything: My hand. Erik's head. Erik's teeth. His hygienist. Hella creepy. However, he seems to know his stuff, even related to Williams. He talked through his giant, gleaming grill of white choppers, as usual, and examined my "pretty" hand for Erik with his tiny mirror on a stick. I again kicked myself for not at least trimming my chipped nails. Erik was not impressed with this dog and pony show but for the first time opened his mouth as instructed and let Dr. Mike count his teeth and examine the enamel. He said, "Wow. Good job, mom and dad." When it was finished, I couldn't have asked for a better outcome.

The dental hygienist asked if it would be okay if Erik got a balloon, and I said yes. She gave him a rubber duckie, too, and he said, "Put it away, Mama?" This amused me greatly, and I tucked it in his little plastic bag she handed me. After scheduling another Dr. Mike experience in six more months, we emerged back out into the waiting room, and I shuddered, feeling slightly physically violated for some odd reason. I said, "Erik, let's get the heck outta this place."

Erik looked toward the front door and smiled, cheerfully greeting Dr. Mike's next victims as they made their way in from the parking lot.

Stinky's Wild Ride

I finally got Stinky away from Erik long enough to place him in my new washing machine. I think this is the dirtiest Stinky has ever been. His ears were actually stiff. And the smell! Oh, the smell. When Erik started giggling, I took photos. Stinky should be good and dizzy at the end of the cycle. I am hoping he doesn't vomit on my other linens.