Dream Date

Everything's gonna be all right!
So, woman, no cry;
No - no, woman - woman, no cry.
Woman, little sister, don't shed no tears;
No, woman, no cry.

-- "No Woman No Cry" (Bob Marley)

I had a great day with Erik.

He has been feeling better now since a trip over the mountain to see my grandmother Saturday. When I went in to greet him this morning, he was so distracted by the ominous presence of Gracie-Cat just outside his door that forgot to refuse to let me take him into the bathroom and place him on the commode, which he then used as if he had been completely potty trained for years. Usually, his borderline violent protests make any sort of potty-related activity completely impossible. He asked for waffles and ate two of them before allowing me to work out on the treadmill and shower while he watched his favorite shows (Super Why and Sesame Street). After that, he asked if we could go to the playground. It was a perfect morning for that kind of thing, and I decided we had better get out while it was still a little cooler. The filthy house could wait.

We went across town to a park we don't usually visit. It's near the trendy shopping district and a group of expensive homes and condos perched on a rocky bluff overlooking the river. A couple mothers stood in the shade next to double strollers, bottles of sunscreen sprays, and an array of interesting snacks in clear plastic bags. They smiled at me, and I smiled back.

Erik wore his AFOs today. I have been pretty bad about employing them lately, but his rapid growth has made his Achilles so tight that I have been forcing myself to strap them on him, even in the heat. However, I regretted putting them on as soon as we got out of the Jeep at the park and he began moving as if he had segments of stovepipe over each leg. He didn't seem to mind, though. We passed the fence and entered the play area, which was only being used by a handful of children. Erik walked stiffly up the ramps to a surface riddled with small holes and then held onto the railing for dear life with both hands, shuffling his feet forward until he could adapt to his new surroundings and determine the stability of the surfaces he seemed to have trouble visualizing. I walked before him over a little bridge and stomped my feet to show him how to feel things out. I could feel the other mothers' eyes on me. I suddenly felt a little like a mother bird teaching her hatchling how to fly. He stomped along behind me, and we made our way to the top with only one little fall temporarily shaking his confidence. We stopped to watch the traffic glide by, and he greeted each vehicle with a hoarse, hearty, "Hello, motorcycle!" or "Hello, car!" He was most thrilled by the deafening equipment two men in orange vests operated nearby on the grass, including a weed trimmer, a riding lawn mower, and a leaf blower. I sat to let the sun bake my nearly bare feet and shins and enjoyed the look of the dark green tops of the pines in the distance against a postcard blue sky. The birds sang, the lawn maintenance equipment farted in the distance, and everything seemed to hum in unison, making air feel almost electric. After Erik was finished observing the world from our lofty perch, he sat down on his bottom and took the slide to the blond-colored wood chips below. He found a steep set of metal stairs and informed me he wanted to climb them. After my encouragement and a slightly shaky start, he mastered them. He even seemed to listen to me when I suggested holding on differently. We were completely in sync. He continued to explore everything, and, amazingly, I was able to sit close by, relax, and watch him play fairly independently for the very first time. Once the sun rose high in the sky, dark, linear shadows of metal railings cast themselves over the surface of the ramp we previously took. Erik froze in his tracks, seemingly unable to see where to step. I asked him if the shadows were freaking him out, and he answered that they were. I offered my hand to him, which he gripped tightly, and we stomped together back to the top through the shadows. We passed one of the put-together mothers, who was now holding a chubby, drooling infant wearing a frilly sun hat in her arms, and she said, "Boy, the ramps and things here seem to be really good for him."

I didn't really know what to say.

For once, I wasn't thinking about physical therapy, really. We were just in our normal, perfect little world, set apart from everything and everyone else. I prefer it that way at the playground, which is a difficult place for me to be. This woman's voice snapped me out of my trance, and everything around us seemed to crash into me. I can't remember if anything came out of my mouth in return or not. This was a first. I have never had a stranger comment on anything except perhaps about how cute Erik is. I felt defensive and slightly confused. She certainly didn't seem to mean anything negative, but I felt slightly off balance. I smiled, nodded, and continued up the ramp.

And then I saw her son running in front of us in the sunshine.

Hooked over each ear were bulky pieces of grayish plastic with wires snaking from them to spots on the back of his skull. They looked to me like they could be cochlear implants for deafness, but I couldn't be certain, as I know next to nothing about this kind of thing. Suddenly, Erik's plastic leg braces didn't seem so obvious or strange after all. I took a deep breath and exhaled the last of my defensiveness into the humming atmosphere, attempting to absorb the energy around us even more for the reservoir of strength that I need to dip into from time to time.

When we left the park, we were covered in a light sheen of perspiration. Erik's cheeks were covered in a happy, exhausted blush. I assigned him the job of holding my water jug while I drove, and he seemed delighted with this job. As we made our way back across town, we sang "No Woman No Cry" at the top of our lungs. I felt wonderful and didn't feel like going home quite yet. I decided to run through the drive through at Taco Time. We returned with our little paper bags and enjoyed our bean burritos together at the kitchen table. I even poured Erik some sparkling orange pop, which I something I rarely let him have.

It just seemed like a special occasion somehow.

Hold the Cheese

The doctor Erik saw recently called me this morning. She sounded two thousand years old on the phone, but she was very encouraging and assured me that his stool studies were completely normal. As for his symptoms, they continue but have improved. Every other morning I have to wash all of Erik's horrendously soiled bedding and pajamas. It may take another week or two to really determine if dairy is indeed the problem, but I was instructed to continue the strict discontinuation of dairy for now. The soy cheese has worked very well, although he tires of the milk. We'll try rice milk next. Erik is now successfully using the toilet sporadically, although it does not amuse him in the slightest and he usually refuses.

As for me, I continue to watch my friend with ALS suffer. He is slowly losing the function in his hand and will begin treatment with a BiPAP machine soon to assist with his breathing. He admitted today that he finds it more and more difficult to get out of bed in the morning. He coughs excessively throughout the day, finds it difficult to swallow food, and endures bouts of pain and spasms that are so intense I witness his skin turn lobster-red and his shirt soak up buckets of hot sweat. He is virtually unable to even talk through these episodes anymore. He puts on a very brave face, but things seem to be worsening every day. Last weekend as I flipped through the channels on television, I found a movie about Jenifer Estess, a woman who helped launch Project ALS with her sisters after being diagnosed with the disease. It was really difficult to watch, but I'm glad I did. She died in 2003 at the age of 40.

I took Erik to see his friend Samantha today. Shaena and I drove to the next town to take the kids to McDonald's for lunch. I ordered Erik a Happy Meal. He loves french fries and let me feed him torn pieces of an entire hamburger, although he had no part in putting any of it in his mouth himself. When we are out, I usually feed him by hand, as he freezes up around strange noises and other children. The french fries, however, were a different story.

After lunch in the play area, we took the kids to the gaping hole that houses the stairs to the Playland slide. Erik had no interest in entering this dark orifice, so after a brief comparison of the tunnel's size and the width of my buttocks, I sighed, took my tennis shoes off, and crawled up inside, encouraging him to follow. He wasn't buying it. I disappeared up the little spiral staircase, and he followed only because he was out of attractive options. We found ourselves at the top near a plastic tube that snaked out of sight down below. Thankfully, there were no other children using the equipment to complicate matters. Erik was anxious enough. I decided that I certainly wasn't going to cram myself back down the stairs and prayed that the grease trap in the restaurant wouldn't burst into flames while we knelt inside this gayly-colored death trap. I gently shoved a protesting Erik down the stairs, feeling like the most horrible mother in the world, and the tennis shoes capping his plastic orthotics made his horrific ride down the tube slower than molasses, prolonging his agony. Weighing several hundred times more than my son, my descent was much more rapid. I tried not to run him over and managed to gently shove him through the length of purple plastic tubing. The static from the friction against the slide raised my hair at the roots, and with everything being bathed in a purple glow, I felt as though I was moving through Grimace's lower intestine. Finally, we emerged. I was crazy enough to try it once again with Erik. He was even less amused this time. He looked at me, and his bottom lip quivered. His face reddened in alarm. He said, "Go home, Mama?" as he burst into tears. We were done. After I forced him to slide down one more time, we gathered our things, said goodbye to our friends, and drove home, enjoying the scenery and even driving through a farm supply store parking lot to admire the shiny, red tractors. I would consider the entire outing successful, although I wish simple things like play didn't feel like such a struggle. Or more therapy. I suppose every experience is therapy, no matter who you are, if you think about it.

I have attempted to utilize play areas and playgrounds with the help of my girlfriends more and more over time and have noticed Erik's general reaction is greatly improving. He still struggles with tripping, falling, and running into things and drops to his hands and knees to crawl over simple, unfamiliar surfaces that his brain doesn't define well while other kids zip past him without a second thought. The last time we loaded into the car after an hour on the playground, he told me he wanted to go back. That's a first for him. Now if only I could muster the same enthusiasm.

Instead, I still fight tears.

Disability

This movie was shot at the park near my parents' house. You can hear them in the background cheering Erik on with grandparent gusto. I couldn't believe this was my son when I saw this the first time. Erik still struggles greatly with ascending and descending steps and will just crawl on them to get from point A to point B when there is no hand to hold onto for support. My heart breaks every time his therapist works with him on our stairs. It's just normally very hard for me to watch. Imagine my surprise when I saw this! Go, Erik Quinn!

From watching this movie, you might be able to tell that Erik has a hard time determining where the edges of things are. The little spasmodic step up he does into thin air at the top of the slide illustrates my point. He does this a lot. For this reason, he is generally not completely comfortable being atop a platform like this. He knows the edge is there, but the information his brain receives from his eyes seems to be confusing. He will stop miles short of any unfamiliar edge and slide along on his bottom instead. This kind of thing is something I described earlier as one of his newly-emerging skills to compensate for the weaknesses that go along with Williams syndrome. His brain does not process things the way we do, so he simply learns another approach in order to accomplish what he desires to do. It works!

I readily classify Erik as disabled for medical purposes and to qualify for the services we receive. I do not have a problem with that word. However, I believe the following story speaks volumes about what I see when I look at Erik. A couple weeks ago I parked a healthy distance down the street from Erik's school and was walking him down the sidewalk when a therapist spotted us and said, "We leave parking spaces open for you guys in front so you don't have to park so far away!" Without thinking, I blurted out, "Erik's not handicapped! We like to walk!" I laughed long and hard about this later. There I was walking down the street with Erik, a little boy going to special ed class who has no clue where the edge of the curb is and staggers along in plastic leg braces while muttering on and on about wheels and threatening to take a digger every fifth step. What a sight we must have been! To me, we were having a perfectly normal, happy morning. Any handicap he demonstrated at the time was completely invisible to me. Every week I arrive plenty early so that Erik and I have that walk together and he can drink in all of the sights of the vehicles and life around us. Once he is concentrating on heavy equipment operating nearby or watching birds streak across the sky, he lurches along at the speed of molasses in January and sometimes repeatedly crashes to the ground. However, I compensate for this as well by arriving early so we can enjoy the journey. We get there -- and on time! As my pain recedes, the way I visualize Erik and how we fit into the world is definitely shifting into something more positive.

Yes, my son has a truly devastating disability, but I use that particular word to our advantage when it's appropriate and pretty much put it away when we are living our lives. I'm thankful we have a genetic test result to tell our story to insurance companies and medical facilities so that there is little need to explain anything. I'm fully aware of what he has trouble doing, and I now watch him learn to use what he can do to accomplish what he needs to in his own time. If there's one thing Erik has taught me, it's that good things come to those who wait! Erik is much more than a test result or a handicap to me. He's my ERIK through and through, and most of the time that is all I see!