Mirror Images

After I had been awake for a couple hours today, I worked out. Hard. I could actually feel my pulse in my eyeballs. I was bound and determined to sweat the blues out of me, at least temporarily. I then took a long, lukewarm shower. One of the two WS families I know in the state rented a house in a resort south of town for the New Year's holiday and had previously invited me to call their cell phone to make arrangements to meet. Because this is such a special opportunity for our family that only rarely makes itself available, I sat down after I could speak in complete sentences again and dialed their number, arranging a visit in the afternoon. Just hearing Heather's voice immediately lifted my spirits. I told Erik we were going to see Sophie, and he seemed unusually excited. I put him down for an early nap, but after he rolled around playing with toys on his floor for an hour, I went in to check on him and he said, "Go see Sophie." I sprung him from his room, told Brian we were itching to go, and loaded the car. We had to drive just 20 minutes, but the pathetic film of wet snow we have been trying to maintain here progressively thickened into a fluffy blanket with each mile and began to encroach on the road. By the time we arrived, the landscape looked like winter did here in the old days, and we located their cabinlike rental nestled in lanky, towering pine trees.

Our visit was truly enjoyable. There were two other couples and their (typical) children staying there for vacation whom we had previously met at Sophie's Run, the yearly 5K race for Sophie and Williams syndrome awareness. Because the race is so incredibly busy for all of us and our extended families, we have not had much of a chance to sit down and talk about whatever we wanted in a quiet setting. Erik was a bit edgy around the two babies present but soon warmed up and was singing and chatting, putting his hand up to feel the texture of Nate's goatee and getting his hands in modeling clay with the two older girls. It was a wonderful, relaxing afternoon. Once Erik began to wilt, we decided to head home, promising to meet again at the run in just four short months.

On the way home, we decided we were hungry and that deep-fried jalapeno wontons from our favorite roadhouse sounded wonderful. We risked a meltdown from our exhausted son, sat down at a table, and ordered our favorite dishes. Erik lasted maybe 10 to 15 minutes before I found myself walking him around the restaurant. A small cup of primary-colored crayons and a children's menu are less than tempting to Erik. When we tried to settle back into our seats, he was absolutely furious and wanted to go home. I sucked what I could of my mixed drink from its giant Mason jar through a straw like a rabid hummingbird and grabbed Erik. We jogged to the car, and I put the Scooby Doo theme song on the stereo. We listened to it approximately 12 times while Brian paid our check and had our dinners boxed up to take home. The waitress, not knowing how exhausted Erik was or exactly why we were leaving, assumed it was their fault and gave us five dollars off our meals. Score.

We are all winding down now. Erik had a short nap while we ravaged our meals like happy animals in front of the television, and I am relaxed once again. I'm looking forward to the New Year and starting anew. The end of any year just isn't my idea of a great time and never has been. I hate looking back at the year, no matter what my situation is, and would like to begin looking forward. However, I'm extremely thankful for this afternoon.

I can't believe it. It ended up being a great day after all.

Sophie and Erik. We neglected to get a photo until we were on our way out the door. Sophie is 5 years old and thriving in every way, and Erik is nearly as tall as she is! This must be due to all of the peanut butter sandwiches I keep feeding him. And the fact Erik is wearing thick-soled shoes and orthotics. Still, he's a tall drink of water.



Erik in the car in the restuarant parking lot listening to the Scooby Doo theme song. That's funny--he wasn't this cheerful inside the restaurant mere minutes before this photo was taken.

A Place for Us

There's a place for us,
A time and place for us.
Hold my hand and we're half way there.
Hold my hand and I'll take you there
Somehow,
Someday,
Somewhere!

-- "Somewhere" West Side Story (1961)


I didn't make it until 6 this morning, but I slept, and I'm happy about that. My head and my muscles ache slightly from clenching my jaw and falling into the kind of laboring, thinking sleep I used to around the time of our diagnosis when life was more intense. I certainly don't feel rested, but at least my brain has rebooted and I can operate simple household appliances without injury once again.

I spent most of yesterday on the love seat with Brian and Erik running around me doing various activities. I did not nap but managed to eventually drag myself to the bathtub, put on clothes, and prop myself up to look lifelike. By the time it was necessary to apply makeup and prepare for the church meeting on youth ministries in the early evening, I had sagged again and barely had a pulse. I tried, nonetheless, to spackle myself with undereye concealer and smooth my hair, half of which which decided to take on the consistency of brown pipe cleaners. We drove to the church and walked Erik to the nursery, where I was previously told we were welcome to leave him during the meeting despite his advanced age. As soon as he saw where we were, he began bawling, even though the room contained only one babysitter and a completely silent little girl sitting at a little table eating a snack. Erik was simply beside himself. The back of his neck flushed into a shade of angry red as his growing anxiety gripped him. Brian scooped him up and thanked the caregiver. We then went downstairs to the youth center, a large, welcoming room containing a clean kitchenette, a short stack of warm pizza boxes, comfortable, chunky furniture, and a television on which they planned to show a Pixar movie for the older kids. Two noisy, chest-high boys played a brutal match of air hockey outside the door in the hallway. Erik ceased crying and accepted a slice of pizza. He ate it at a table with the help of a teenage volunteer. I began speaking with a couple women about the meeting, and they informed us that it would be held at another location down the road. I almost backed out at that moment. I certainly wasn't planning on leaving Erik blocks away, but we got into our car and followed their directions to a cluster of tall, craftsman-style homes poking up and forming their own blocky, trendy skyline. We parked and walked to the clubhouse. To my complete dismay, I saw the exact opposite of what I was expecting--mostly impeccably dressed parents our age enjoying wine and a variety of classy finger foods in a lovely setting. I looked down at my leather sneakers, the laces of which had been replaced with ones which were approximately three feet too long and were balled into a series of intricate knots that would make any sailor proud, wrinkled blue jeans, equally wrinkled cotton t-shirt, and mismatched jacket and purse. I already felt off-balance, and the meeting had yet to start! Brian and I both winced and laughed at our plight. Our pastor welcomed us inside and offered me wine from the bottles chilling atop a marble bar. Brian located the coffee. We affixed some preprinted name tags to our chests and were invited to sit at a table to socialize with unfamiliar members of our congregation, the bulk of which admitted they had only been in town for three years or less. They marveled at how unusual it was that I was a true native, having been born here at a hospital that met a wrecking ball long ago to eventually become the proud site of the Phoenix Inn. They also seemed to realize how annoying it might be to consistently encounter people like them who swell the population at an alarming rate and disfigure this once peaceful mill town. I halfheartedly tried to retain my cynicism and aloofness but warmed up to them quickly. We met a refreshing variety of people, including those who attended different colleges, were from different states from all over the country, or were actually Catholic for most of their lives. After a lengthy period of socializing, we were shuffled around and instructed to sit with more people we didn't know. I ended up miles away from Brian. We played a game of trivia, which was fun, and I sat across from a delightfully nerdy, obviously brilliant husband who occasionally retrieved his Blackberry from his back pocket, glanced at it, and whispered the scores of both of the football games we were missing to me. We celebrated quietly after each report. The woman next to me wryly told a shockingly inappropriate story about once attending a larger, box-type church across town, her horror regarding the aggressive children's program during the service they attended, and how her husband warned her not to drink the Kool Aid on their way out out of the building. I stifled my laughter under my hand, but I felt my eyes begin to water and tears threatening to spill from the corners. I simply couldn't help myself. Hilarious. Er, I mean, totally inappropriate.

Once the meeting started, we were provided stacks of pastel Post-It notes to write our ideas down on and later attach to a large board. There was also a sheet with an impossibly optimistic number of blanks to hold the names of people who wanted to assist with different types of children's activities, inlcuding the Christmas play. I suddenly understood the purpose of the wine. Have I mentioned lately how much I tend to dislike organized religion AND children? I marveled at the fact I was sitting in this meeting at all and yet how comfortable I was. I reached for a pencil and wrote: SPECIAL NEEDS SUPPORT. (COUNSELING?) I don't feel any sort of heavenly pull to lead a children's group or spearhead a major campaign for anything, but I can't deny there is something happening in me. I'm at a point where I could be of use to a parent who has found themselves in the dark place we were in a couple years ago. Something is telling me in a less than subtle manner to leave myself open and available. As the other parents spoke of their needs and wishes, it became obvious we were likely the only parents who would simply like things to be easier for a child with special needs. We don't have the luxury of pretending things are perfectly normal anymore. After the meeting I approached our pastor, and he expressed his desire to meet with us and find a comfortable place for Erik and our family to be.

The pieces are beginning falling into place now. I am beginning to see the big picture and where we might fit into it. While I sat in the midst of these very polished-appearing parents who seemed to have it all together, I was aware of the fact I would have been feeling very sorry for myself a couple months ago. I had my moments when I felt myself slip a little bit, but, for the most part, instead of despair I very clearly saw opportunity and a way to be of use to someone. I asked the pastor just exactly where the kids with special needs are. He admitted there were some but said the woman sitting next to him during the meeting would know more about that. There's obviously a gaping hole that parents like us are falling into. It would be so easy to give up and stay home. Nobody likes feeling invisible, and I intend to do something about that. I sure as hell felt invisible at one point. I tried to reach out, even having the associate pastor out to our home, but I was obviously unable to express myself or ask for what we needed. I didn't know exactly what it was we needed, anyway. I became invisible, and we gave up and stayed home.

However, that was then, and this is now.

When we returned to pick up Erik, he was sitting happily on a teenage girl's lap watching a movie. She reported that he "did amazing." He seemed positively tickled to see us, even clapping and laughing. He giggled like a school girl. He seemed less than traumatized by the whole evening, and relief washed over me.

Why can't it always be this easy?

Aches, Pains, Teeth, & Gains

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

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

-- "My Way," Los Lonely Boys

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

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

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

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

It was a hard week, but it was good.