When Erik was an infant, long before we had heard of Williams syndrome or knew that stomach acid was constantly gurgling up his esophagus and burning him from the inside out, he always smelled like peppermint to me. He had red, splotchy burns around his mouth. He often pulled off my nipple, arched, and screamed in agony before he regurgitated everything I had labored to feed him. Everything was so difficult back then compared to the other mothers I knew, and in the dead of the night with my screaming infant, I couldn't help but wonder just what I was doing wrong.
For a week now, the skin on his bottom has broken down into wide, shallow ulcers from a bout of new intestinal problems. It looks as though he is burned once again. His symptoms are only now beginning to improve, and the nauseating scent of the greasy zinc oxide cream I smear in a thick, white layer over his skin seeps through his clothing and into the air around him. The boy simply can't seem to form a decent callus anywhere on his body. The skin itself does not seem to know how to thicken, and his toes still leave bright crimson stripes of blood all over the floor if he wears each layer of skin over them away by crawling after his toys. In fact, there is so much blood sometimes that when I moisten it with a mop, I can detect the faint scent of iron, and my stomach lurches.
This week he saw me cry for the very first time. He seemed surprised and a little frightened by my tears. This occurred after he kicked me in the chest for the fourteenth time that day as I struggled to hold him down in order to do the everyday things mothers do with tiny babies. However, he isn't a tiny baby anymore. Before I knew it, the sole of one of his large tennis shoes flew up and thumped me squarely in the breast, and the dull pain traveled all the way to the center of my heart. To an airless, dark space I no longer visit on a daily basis and have worked to seal off the majority of the time in order to dam up the river of the tears that used to come every day. We were on our fifth hour of nonstop tantrums, and I was worn down.
I am trying so very hard. I really am. Every little thing during the day is such a giant production. I constantly stand next to him and cheerfully coach him step by step how to pick up his toys, lie on the bed so I can change him, walk in 10-yard segments to the car, and even chew a sandwich. I celebrate every accomplishment, knowing that progress is snail slow but will come with time. He does very little voluntarily, regardless of the consequences, and I still must pick him up and carry him, ignoring the way he strikes out at me and trying to remain perfectly calm without losing my mind or throwing out my back. Hearing the word "no" sends him into angry orbit, no matter how softly it is spoken. He screams at me all day, even when he is not close to being upset, and continues to throw tantrums, which, admittedly, have only been intensified this week by his horrible discomfort.
This time I quietly turned away from him, closed his door, and walked around the corner into the kitchen. I sat down on the carpet, let myself slump over to rest my elbows on my legs, and began sobbing, covering my face with my trembling hands, feeling too exhausted to tread water in this ocean anymore. I finally picked up the phone and called Brian, not knowing what else to do. He came home early and confirmed my fears that things are definitely getting worse. We both know that it is important to be consistent and hold the course, and we know that time will bring us all some relief.
For now, though, sometimes it still seems as though my child is full of acid.