However, yesterday I was forced to approach this new wing head on as we made our way across the parking lot and allowed ourselves to be swallowed by the glass enclosure of a motion-activated revolving door. Once we were spat out into a spacious, neutral-colored lobby softly illuminated by skylights and artsy light fixtures poking out randomly from blond end tables and walls, an older woman in a navy jacket with neatly-coiffed, caramel-colored hair sprayed into place appeared out of nowhere. She approached us and asked where we needed to go. Upon my answer, she quietly led us past a registration desk and a small waiting area through an unadorned, unassuming door as if we were entering some sort of clinical speakeasy. There was a nurses' station inside. Sara, the nurse behind the counter, instantly remembered Erik from when we were seen last year at the old facility across the street. She seemed genuinely shocked at how much he had grown and made a very wonderful fuss over him. Erik was instantly fascinated by the lamp sitting on the counter which featured cartoonish fish swimming in a happy but hopelessly infinite loop. Brian and I playfully debated about the correct names of all of the fish while the nurse smiled and prepared our paperwork. After I was given a clipboard and a pen, we made our way into the study room, where the walls were painted with more glee-filled fish swimming around a few bubbles and some sort of crude, colorful, ribbony stripe that reminded me of the remnants of a toxic but cheerful oil spill. Erik played with a wooden Thomas the Train table and exhibited his bubbly personality for Sara. We were soon joined by Karen, a technician whom I used to work with eons ago, and Dr. T, who greeted us warmly. Her hair was in the same fine, uncombed tangle I remembered from last year, and I smiled at this.
Erik was given a medication called Versed to sedate him. It came in the form of a pink liquid inside the thin barrel of a translucent syringe. He was given a taste and apparently decided it was the sweat of the devil. We managed to squirt the remainder of it down his throat, and the lights were dimmed. Erik played in my lap, and his speech began to slur slightly. His activity level, however, did not cease. Another half-dose was administered. Once he was in an obviously more quiet state, I laid him down on the sheet-draped gurney in the center of the room, and he stared at the ceiling. I laid down beside him with his head in my armpit and gently held his arms down. Clear gel was smeared over his bare chest, and the technician began moving the ultrasound wand over his skin. Brian and I looked up at the monitor as his heart became visible, seeming to thrash about violently. The sound of his heart filled the room occasionally, sounding like some sort of sloppy-wet sponge. The technician clicked a computer mouse, marking and measuring the anatomy of Erik's heart and blood vessels. Sara blew a few bubbles to entertain Erik, and they landed softly on both of us, popping wetly against my bare neck and arms. After the echocardiogram, black and white stickers were affixed all over Erik's upper torso, and lead wires were clipped to them for a quick ECG. Both studies were completely over before I knew it.
Afterwards we were instructed to sit in smaller, more typically appointed examination room. Brian and I asked each other how we were doing. We both reported we were fine. Brian prevented Erik from trying to run off in his drunken state or fall over as he investigated a collection of nearby toys. At one point, his forehead softly and slowly met the carpet, and he mumbled something I couldn't quite understand. At this point, he looked like a miniature, Budweiser-bloated, pediatric fraternity boy. Dr. T knocked, opened the door, and sat down with us to go over the results.
As Erik's study was borderline abnormal last year, I was concerned that things would deteriorate, which is exactly what I have seen happen in other WS children. Instead, we were pleasantly surprised. She admitted she had no idea when we would be required to return for another study, as none of the the WS patients she had cared for during her career had ever had a completely normal study. Therefore, she would call the children's hospital in the city and talk to a geneticist there for further instructions and recommendations.
As we made our way out past the nurses' station, Sara and another nurse from Erik's last study congratulated us but admitted they were terribly sad they would not be able to see Erik again for some time. We said our goodbyes, and I drove us home while Brian sat in the back seat holding Erik's head to prevent it from flopping around. Within an hour, Erik was pushing cars and trucks around the house at warp speed, slightly unsteady but determined to return to his normal activity.
The tears came later in the afternoon with a vengeance, straight out of the blue. I could not stop sobbing. I was completely blindsided by this reaction which came with no warning whatsoever. It was at that point I realized I had not allowed myself to feel anything at all during the whole experience. I had been completely and utterly numb all morning, appropriately smiling, shushing and humming to Erik, accepting medical information as if we were watching a television show on someone else, and then going on with my day as if I had picked a dress up from the dry cleaners.
Why in the hell was I crying?
I cried because I was crammed full of shout-from-the-rooftops joy. I could now let my child sleep in an extra hour without worry he had passed away in his bed, at least for now.
Our son is fine.
I cried because I felt sweet relief. A whole year of wondering if his blood vessels were squeezing closed had ended with the best news possible. Erik seemed to be unusual within his own very unusual group of peers who carried the exact diagnosis. I'm the mother of a medical miracle.
Our son is fine.
And I cried because underneath the burden that had been lifted was yet more worry that had been exposed to the light that hadn't been erased like I naively hoped it would by this news. I felt shame this crossed my mind at all. However, there were and would always be 20 odd genes missing that would wreak havoc on his body and brain throughout his life. After all, you can't just start subtracting genes from a fetus and expect things not to be a teensy-weensy bit fucked up.
Our son is not fine.
When I sorted through it all, though, I knew I was crying primarily because I was insanely happy. Happy our kid has crushed so many odds, proving to be the exception to almost every rule. Happy he insists on thriving and seems to live to charm the pants off of this very cranky, incredibly unfair world of ours.
I cried because our son is just fine.