Erik Quinn: The Heart of a Family: April 2009

Thursday, April 30, 2009

Taking Chances

How scary it must have been for these parents to let their children chase a dream...and what an outcome.


Wednesday, April 29, 2009

Sophie's Run 2009

(Erik, Brandon, and Cole. The "Three Amigos.")

We made it to Sophie's Run, the 5K for Erik's friend with WS, again this year. It has become a special tradition in our family. This was our fourth year. The first year we went, Erik's diagnosis had only been official for about a month, and I was in tears an awful lot. As time has passed, it has become a celebration with my friends and family. It almost feels like some sort of family reunion to me. Many of us have emotions just underneath the surface that threaten to spill here and there, but that sloppy state is perfectly acceptable in this setting. I find that absolutely refreshing. We still cry occasionally, but we don't have to do it alone, and we find ourselves laughing until it hurts, too. I did an awful lot of laughing this year.

We set up camp in a room at our favorite hotel. Brian was kind enough to get a room with a view of the river so that we could watch the university crew team practice. The men and women's teams silently glided by at amazing speed in their knife-like boats, blinding me with bodies covered in pasty skin that had yet to see sun this season. Unfortunately, our room only contained one generous-sized bed. As the hotel was packed full of high school kids and their band instruments, we were unable to switch rooms.

We headed downtown to a campus sports bar to meet my parents and my aunt for dinner and to watch the Portland Trailblazers play. We feasted on burgers and fries, and Erik watched the world go by through a large window behind our booth. From there, we headed to the grocery store for cold medicine. I have been ill since last Tuesday and figured I would need something to sleep if I would be sharing a bed with two other people who have a tendency to snore. Erik absolutely freaked out in the store. His behavior made it impossible for either of us to navigate the place with him, and he screamed and whined. I could hear him aisles away as I grabbed the items I needed. I ended up carrying him out to the Jeep to wait for Brian to pay for our things. By the time we arrived at our room, he was beside himself, screaming that he wanted to go home and hitting the bed with his fists. We were finally able to get him to lie down between us by shutting off the lights and climbing into bed ourselves, and he calmed down for most of the night. He awoke once mumbling about fireworks and began touching my face, identifying my nose, mouth, and ears in the dark with the hoarse, Williamsy tone he sometimes prefers to use, making me giggle against my will through my exasperation.

After a restless but surprisingly successful night's sleep, some of which I spent on the floor, we showered and dressed, expecting to load our things in the car, eat a continental breakfast, and head to the park for the event. Erik began to cough. I then heard his stomach make a sound much like a sloshing aquarium. He looked slightly confused. I ran to him, swooped him up, and sprinted to the bathroom with him just as he began vomiting. As he cried and heaved in my arms, I felt relief knowing there was a reason his behavior has been so out of control for the past few days. He looked up at me through his tears and said, "Mama, I spit orange!" See, Erik associates throwing up with oranges, as he had just eaten one the first time he remembers upchucking. "Spitting orange" is now the term he uses, no matter what he has just consumed.

I called my parents, who were camping nearby, and informed them that Erik was sick. By this time, Brian had taken over my post on the bathroom floor. We told them we would see them at the park. We would simply pick up our race packets, say hello, and go home.

How I underestimate the power of Erik Quinn.

The boy perked up at the park and immediately began a thorough inspection of the wheels and tires of the vehicles around our Jeep. He greeted people with smiles. I reconnected with my friends from other parts of the state. Sophie sang the National Anthem to the crowd of about 450 people with bold, beautiful confidence, and I stopped chatting with my friend in the parking lot to listen. We both had tears streaming down our faces and laughed at ourselves when the song was finished. Before I knew it, I was in the center of a large, talkative crowd at the starting line, and we all began to walk or run. Erik rode on various shoulders without hurling on anyone and even ran some of the course. In fact, he completed the whole dang thing.

Of course, in the words of Erik's favorite stuffed animal, Stinky Dog, he still "felt like woof," and after some time playing in the misty weather on the playground after the event, we loaded him into the car with his favorite blanket and DVD for the trip home, opting out of Sophie's birthday pizza party this year. We said our goodbyes and headed over the mountain. Erik doesn't ever really sleep in the car but seemed happy to ride, and his giggles sounded wonderful as he watched his video.

I smiled all the way home.

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Monday, April 20, 2009

System Failure Imminent (#2)

About 10 of us went out for breakfast yesterday morning before the local boat and RV show. Erik did amazingly well, sitting between us for an extended period of time while we sipped coffee, talked, and laughed. It was incredibly relaxing. We shared our omelet, slabs of toast, and cinnamon roll with him. I eventually walked him down to the video arcade at the other end of the restaurant to get our pinball fix, and then we loaded in our cars to drive to the next town for the show.

The remainder of the day was a different flavor. At first, things were great. Brian and I briefly got to explore the massive collection of travel trailers parked in a field under the blazing sun. These ranged from the ridiculously expensive, including models with gas log fireplaces, flat screen televisions, ATV garages, and bars, to a bathroomless, lemon yellow, tear-shaped model that could be towed behind almost any vehicle. When we got to the lineup of more reasonable models, it was difficult for me not to think about the government trailers that materialized after Hurricane Katrina. Packs of salesmen roamed the grounds, popping up out of nowhere and frightening me from time to time as I examined cooktops and commodes.

Erik became increasingly difficult to control. I was horrified when he completely ignored my shouts to stop before he ran over an expanse of parking lot after spotting a forklift. The beginning of the end was when he discovered an open space studded with gleaming all-terrain vehicles of different sorts -- bucks, and quads, and motorcycles. Oh my. He sprinted toward them without a second thought. He then flitted from vehicle to vehicle at a ridiculously frantic pace. I tried to snap a decent photo of him, but he was in constant motion, making it impossible. Brian and I had to laugh at his obvious delight. For some reason, he would lie down on the grass and insert the top of his head into each recessed hubcap. He bent at the waist to inspect each tire. He talked to them as if they could understand him. I even overheard him mumble, "What a beautiful quad."

He was in absolute heaven.

I love to do special things for my son. Knowing there would be vehicles he would enjoy at the event was the major reason we attended this show. Lately we have put a lot of thought into things we can do with him to get him out and about. The problem is, however, we have to cease doing these things at some point and go home. This always results in a major Erik malfunction, and we were about to experience the worst one in history. Activities as simple as taking him outside in the yard always seem to end with one of us carrying or pushing a kicking, screaming boy through the front door, making me wonder if even our insignificant outings are really worth it. It may seem like a small price to pay, but after this occurs about three thousand times in a row, it gets really frustrating. You can't kneel down to his level and reason with him when he's this upset. I guess that all I can really do is ask the folks who don't wear our shoes to hesitate before they cluck their tongues and shake their heads in judgment seeing a parent carrying a kicking, screaming child to the car. They just might be doing the very best they can. There are some days I am just not up for his rage, and we remain inside the house. I fully admit it.

As Erik was forced to ride on Brian's shoulders away from his beloved ATVs, he bawled and screamed. When that didn't work, he tried manipulation, begging Brian, "Let go of me, please." When that failed, he went back to screaming and crying, making the remainder of our time browsing impossible to enjoy. Our voices both took on a raised, barking tone, which only seemed to upset Erik more. We were officially fresh out of reasonable ideas, and Erik was miles beyond reasoning at all. Brian carried Erik back to the Jeep, and I went to inform my friend that we were leaving. As we drove out of the fairgrounds, Brian and I calmly explained to Erik why we had to go home, but I can never determine if he really comprehends what we're saying or not. I would think that if he did, his behavior might change, but it doesn't seem to make any difference at all so far. However, we faithfully continue our explanations, hoping some of it will eventually sink in.

The rest of the day was slightly better, but Erik remained "off," screaming "NO" at us both with great gusto and refusing to do anything we asked him to do. He spent time alone in his room with each outburst. The whole outing just seemed to rock his world for the rest of the day. After Erik took a good nap, Brian decided to take him to the store for furnace filters in the evening. Erik did well, even without the confines of a shopping cart around him.

He was back to his old, Erik-y self.

I love doing special things for Erik and will continue planning them, but there is definitely a price we end up paying. We just make sure we're up for our punishment afterwards, which hurts my heart more than a little.

On some days, it's just simply not worth sacrificing my sanity.

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Saturday, April 18, 2009


The photo above is Brian holding Erik up to ring the church bell. I can't imagine how the people trying to sleep in the surrounding neighborhood feel about the bell, but it's nearly impossible to walk by this dangling rope. It's much too tempting. Anyway, Erik's hearing continues to be very sensitive, but his spirit overrides his hyperacusis in cases like this these days. It's pretty hard to feel anything but triumphant when he pulls the thing and the joyous clanging fills the air. One more giant step forward for Erik.

It seems I'm still having great difficulty finding words lately, but they are coming to me slowly. I thought once again of hanging this up for fear of this space becoming a dippy "mommy blog," which is not what I set out to create, but I have decided to see what happens. I feel a bit lost these days. Williams syndrome and my challenges with Erik are the least of my struggles at the moment, and a lot of my writer's block comes from the shock and intensity of a couple of things that have occurred lately, neither of which I can describe on my blog for a variety of reasons. Instead, I have been very effectively shutting down my emotions, making it nearly impossible for me to continue to write, and going through the motions of each day to make it through some really tough times. I keep telling myself that this, too, shall pass, and I'll be back to myself soon. It's the first time in years I can visualize myself being truly happy. It's a goal that is just slightly out of reach at the moment. I'm not in a good place, but as long as I keep reaching, I have hope.

I spent much of the day alone yesterday working and doing a lot of little things around the house while Erik was at school and then at my parents' house. I attempted to hit the salon on my way back from school to sneak away to enjoy the feel of scalding wax on my face and perhaps a new treatment of some sort, but they were closed for another 30 minutes when I arrived, and I decided to bag it. For those of you around me, I'm not angry with you. Seriously. My eyebrows just make me appear that way. I'll get them done soon.

My neighbor has come down our dusty road each and every morning lately to join me in the workouts I have been doing faithfully for the last two years. It's the only time that feels like it's truly mine, and even Erik seems to respect that as long as I give him some extra attention when I'm through. I have always worked out alone and thought I preferred it that way, but her company has proved to be quite enjoyable, and I find myself laughing so hard I trip over my own feet quite often. There are certain movements we do with our arms that are very monkey-like, and her disturbingly realistic orangutan noises send me into hysterics, despite the fact this joke of hers is now nine weeks old. I have also ramped things up a bit and tacked on an extra 20 minutes to my daily routine, resulting in me being in the best shape of my life. Admittedly, that's not saying much, but I rarely have the headaches that used to keep me down on the couch for days at a time, and my back no longer hurts whatsoever while I am working at my computer. Generally, my sleep is also greatly improved, although last night was a complete bust. I have remained at my goal weight now for two years, and that feels good. I look back and don't recognize myself anymore for a variety of reasons.

We are planning to drive out to the fairgrounds this weekend for our local RV and boat show. My neighbor mentioned it during our sweatfest yesterday and said that Erik might enjoy looking at the ATVs, trailers, and motor homes on display, so I called a friend of mine who, as it turns out, was already planning to take her family. We're meeting for breakfast and taking all of our kids together, which I am greatly looking forward to.

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Wednesday, April 15, 2009


I continue taking Erik to the dentist every two to four weeks. The photo above is of Erik using the suction tube on Stinky Dog. I tell Erik this piece of equipment is a miniature vacuum, and he enjoys playing with it.

The dentist no longer amuses me much, as I feel like he views us both as a gargantuan inconvenience because of our requirements for a private room and extra attention. Even his pimp-like, leather-inset pants and freshly-pressed shirt quietly irritated the crap out of me. I was informed that "Ms. Nikki," the woman half my size who insisted we deal only with her for Erik's special needs, is no longer employed at that office. Our new technician was able to sit Erik in a chair and eventually convince him to open his mouth so the dentist could paint foul-tasting fluoride lacquer on a couple of his teeth. Of course, I was required to explain hyperacusis all over again to the new technician. The dentist repeatedly instructed Erik to "calm down" and "stay still," and not in the kindest tone, but Erik seemed almost shocked into obeying. As he peeled off his orange gloves and got up to leave the room, Dr. Mike gruffly told his assistant they would be using the device to pry Erik's mouth open for an extended period of time at our next visit. Knowing Erik, this likely will traumatize him all over again, erasing any progress I had made with the whole desensitization process. Weeks of work down the drain.

I then took Erik to the main waiting room the office shares with a pediatric medical clinic and let him spin some wooden wheels on a bus-shaped play structure while I gathered my thoughts. I noted how strange it was to feel angry and disappointed while wearing a bobbing helium balloon tied to my wrist. Erik looked up at me and laughed, obviously delighted to indulge in some good, old-fashioned stimming. When it was time to go, he protested and began to cry, telling me he wanted to keep spinning the wheels. I practically dragged him out the front door, as he is too heavy to carry anymore.

Fun visit, my ass.

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Wednesday, April 01, 2009

Back Soon

My energy is being diverted too many places to sit down and concentrate long enough to write lately. On top of that, I feel like I'm entering a new phase of being me but am having difficulty putting my feelings into words like I usually do. I predict a mudslide of posts once I figure things out. I have some poems and random things in my head that are trying to escape as well.

In the meantime, I'm going to take another short break and see if that helps me knock some thoughts loose.

I'll be back in about ten days.


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