“J” had a headache today. He spent most of the morning asleep on the couch and his dad and I spent the morning trying not to hover. Thirteen year old boys get headaches. Everyone gets a headache now and then. Everyone feels a little run down and naps on the couch on a lazy Sunday. When that person is “J”, however, my heart sinks.
It’s an almost every day feeling I describe as “waiting for the other shoe to drop.” You know you’re downstairs and you hear someone taking their shoes off upstairs. You hear the first one drop, and then a pause and you sit and wait for the second “thud”. With “J” that “thud”, it feels, is always just around the corner. Among other serious medical conditions, “J” has a shunt. Like many kids with shunts, “J” has undergone his fair share of surgeries and complications related to his condition. He has had more than 30 revisions and suffered serious complications following more than one neurosurgery. This past year alone, “J” spent more than 11 weeks in the hospital, had eight brain surgeries, an appendectomy, cerebral hemorrhages and ventriculitis. This year the other shoe didn’t just drop, it felt more like a bomb did.
Today, it seems a headache was just a headache and aspirin and rest did the trick. Relief for the moment, but us, his parents, are still left with that inescapable sense of dread, the never-ending feeling that something is just around the corner. It’s a difficult reality to live with. The truth is there is no telling. “J” could have years and years of good health and no complications, or we could be back in the hospital tomorrow. Every time he sleeps in a little later than usual, or tells us his head hurts, or stomach feels sick we have to mentally prepare for the worst. We always have a plan in place, who will take him to the hospital? Do we have our hospital bags packed? Is there someone available to watch “K” in case he ends up needing surgery? It’s a strange reality, one that we’ve lived with pretty much since we became Jay’s parents almost 10 years ago.
Before “J” was even placed with us for foster care we had met with doctors and been educated on his medical conditions and needs. We knew what cerebral palsy was, what a shunt was and that he had a seizure disorder. Knowing and understanding, it turns out, are two very different things. Its one thing to know your child has a seizure disorder. It’s another to experience first hand you four-year-old having a grand mal seizure. Even describing what a seizure looks like feels slight in comparison to experiencing it.
The first time “J” had a seizure with me was about six months after he was place with us. It was early in the morning (when seizures like to strike most because before morning doses of meds when levels are usually the lowest in their systems) and I was home alone with him. He had come into our bedroom and was standing beside the bed just staring at me. Immediately I knew something was wrong. “Are you sick?” I asked. He didn’t answer, only nodded his head. I picked him up and laid him in my bed. I don’t know now exactly what it was about his demeanor that told me this was something different then a cold or flu, but I knew. I paged the pediatrician. Before she could return my page, “J’s” right hand started shaking. I called 911. By the time the paramedics arrived, “J” was in a full on seizure, his body was convulsing, his eyes had rolled back in his head, his lips were blue, it was a horrible sight.
This was my first ride in an ambulance. I remember it well. Since this time there have been too many ambulance rides to count and I truly don’t remember them all. This first one, however, I will never forget. I was in the front seat with the driver and I kept turning around to watch them working on “J” through the window. They seemed to be working frantically, both paramedics, then one appeared to be giving chest compressions and the other was on the phone with the hospital. When we pulled up to the hospital I jumped out of my seat and ran around to the back of the ambulance. One of the paramedics pulled me back as they rushed “J” into the hospital. “I need to explain to you what happened” the paramedic started. “Oh my God he’s dead.” I thought. It had to only be a second, or less than a second a moment really but I remember clear as day thinking he was dead. All I could think was I was going to have to call my husband and tell him “J” was dead and I didn’t know how I could do that. “We just got him” I was thinking “We can’t lose him.”
“J” of course was not dead. His respiratory rate had plummeted and his oxygen rate was dangerously low so they had to intubate him. He was on a breathing machine. The paramedic wanted to explain this to me before I went into the hospital and saw my son hooked up to a breathing machine. I was so relieved that he was alive; I was completely unfazed by this revelation.
In the years past there have been many much more trying times for “J”. He has been in much worse conditions; we have been given much worse news about the state of his health. I have sat next to his bed in PICU’s and surgical recovery rooms and I have never been more scared than that moment 9 ½ years ago. That set the tone for our life together. The threat of losing him has always been real, and constant and sometimes almost overwhelming. It is a daily challenge to live in the moment, to trust that there will be plenty, a lifetime even, of moments to come and still except that there will also be a constant threat lying in wait, a shoe that hasn’t yet dropped.