I still feel really off today.
Erik's appointment went fairly well. Today was the first appointment I didn't feel like Brian needed to go with us for any sort of education or support. There is no longer any point. Unfortunately, this doesn't make it easy. I dressed Erik in a pair of good jeans without holes in the knees, a nice shirt, and a denim jacket, skipping his plastic leg orthotics in lieu of socks and his black suede Vans. I figured there was no point in sticking out any more than we would, anyway, in the waiting room. We checked in, and Erik smiled at the girl at the desk, telling her that he was going to see the doctor. We took over a seat in the large waiting room next to a playground-sized jungle gym type setup and waited. The other kids ran in bee-like swarms, whizzing past us and missing us by centimeters on nimble legs, seemingly failing to notice our presence at all. Suddenly I felt like Jane Goodall, peeking in on another foreign world through a layer of jungle foilage. I felt a rush of adrenaline enter my bloodstream as I glanced around the room, stirring up hot, poorly directed fury at the other parents with perfectly typical children. I let the emotions wash over me and enjoyed the evil heat of them for once in a public setting. I felt angry and high.
I noted all day that Erik experimented with sound. He repeatedly clapped his palms over his ears to listen to the radio, the television, and my voice, asking me to repeat certain sounds or phrases. In the waiting room this continued, only he kept his hands sealed firmly over the openings of his ears to block the sounds coming from the other children in the room. He laid across my lap, stiff and motionless like a pale bundle of kindling. I tried to reposition him so he could at least watch the other children playing in the room, but upon being lifted into the air, his legs stuck out perfectly to the sides like metal prongs and then quickly wrapped around my chest. I felt frustrated and annoyed. He clung to me like a parasite and refused to move. He simply buried his face in my neck the remainder of our time there. A father stared with me with eyes the color of molasses as his wife spoke fussed with a baby in a car seat, and an adorable collection of bundled-up newborns were carried in from the wet afternoon by their shockingly young mothers. I smiled at them but felt my stomach turn.
A nurse propped the metal door with her small tennis shoe and called out Erik's name. I pried him off of me, and we walked slowly through the doorway into the nurses' area. We tried to stand Erik on the scale, but he promptly began wailing, his face transforming that familiar ruby red. We finally resorted to sitting him on a layer of tissue paper on the infant scale. Stiff and screaming, he weighed 32 lbs, 9 oz. He absolutely refused to stand against the wall to be measured for height, even though I made a complete ass of myself measuring the length of my own body. The blood pressure measurement turned out to be a complete disaster. I began wondering why we were in this place at all.
We were escorted to a room where we answered a myriad of questions about milestones. Thankfully, I no longer need to answer them all negatively. Yes, Erik can jump. He can speak in short sentences. He eats protein. He drinks milk. He sleeps well. He knows the names for things. He can count to 5. In fact, he can count to 20 if he wants to. Yes, he eats a very minimal amount of fast food. He is fond of the seven-layer burrito at Taco Bell. For the first time I felt like I appeared like a healthy, put-together mother who slept regularly. Although I was on edge in this place, I smiled. I have come a long way in a year. As she went to inform the doctor we were ready for her, I pulled out my cell phone and played the new Britney Spears song Erik loves and I detest. He asked me to play it again and again. I obliged him and laughed as he said, "Again! Again!"
Dr. G came into the room and greeted us. She said she was thinking of us recently and was delighted to see us on the schedule. After some initial pleasantries, she attempted to examine Erik's ears and listen to his heart and lungs with her sthetoscope. If she did glean any information from this brief examination, it would be miraculous indeed. He absolutely refused to let her touch him, despite an impresive offering of stickers, which Erik doesn't know what to do with, sweet talk, and her own examination of my own heart, lungs, and ears. The good news is that I am completely healthy and do not have any variety of otitis media or a heart murmur. We did manage to get Erik's pants off and his diaper unfastened enough to examine his manly bits, which were reportedly fine. He continued to wail the entire time.
Once the screaming subsided and Erik began carefully examining the lights in the ceiling and the floor vents, which seem to blast air the temperature of the deepest level of hell, I asked about an orthopedist, and she began filling out paperwork to refer us to a pediatric rehabilitation physician in town. She asked about Erik's hippotherapy and if I was frightened to see him on a horse. I laughed loudly and immediately answered no. It always surprises me that even most physicians don't really have a grasp of what my life is like. I told her to recommend our physical therapist to other parents, and she took notes. The nurse returned with a fistful of Erik's immunizations, and I held his struggling body down while she deftly stabbed his muscular thigh with the loaded needles. Overall, I was impressed by her speed and technique, and she was impressed by Erik's brute strength. As we packed up to leave, she mentioned the other person in town who has WS, now an adult, and how beautiful the starbursts in her eyes are. When she realized I knew of this person, she looked slightly alarmed and said she could not disclose any more information because of a potential HIPAA violation. The trouble is, there aren't other people like Erik in this region. I informed her I knew whom she spoke of and that we had yet to meet but that I knew she was doing quite well. As we left, Erik began to wail again, upset that he could not examine things on the way out. As I reminded the nurse to update our immunization card over the screaming, she commented to me how patient I was and what a great job I was doing with my child. I felt like laughing, crying, and bitch slapping her at the same time. I said goodbye as she held the door open for our departure and next poor pediatric patient.
I came home, sat Erik in his chair with a giant sugar cookie and a serving of our freshly-baked brownies, and poured myself a generous whiskey and Diet 7-Up, refreshing it just halfway through. I ruffled his hair as he quietly munched on his treat. Wet snowflakes began smacking the ground outside the kitchen window, and the sky blackened.
I smiled and felt the alcohol enter my bloodstream, numbing everything I felt earlier.
Our next appointment at the pediatric clinic would occur in 2009, as Erik turns 5.
There is simply not enough whiskey or sugar cookies in this world.