I saw the expression on her face out of the corner of my eye, and my body tightened in fear of confrontation. Her mouth tight with anger, I could see the venom in her eyes. I knew I didn’t have it in me to verbally spar with a stranger today, but I’ve seen actual physical violence occur when my son’s name is called before others.
Many, many years ago, a male nurse was actually assaulted when he attempted to help calm an irate member of our community, who felt that everyone must loudly hear how unfair it was that my limp, pale, and vomiting infant was taken back instead of his sick wife. It scares me sometimes, the feeling of wild anger that can fill a room when dozens of people hate your guts.
I get no pleasure out of the kind of priority we receive when we enter an emergency room. Please understand that I’m keenly aware you despise me as I walk past you through the waiting room and through those double doors. I saw you vomiting into a bucket when I walked into the room, but please know I take no delight in seeing a doctor before you. I saw you comforting your child with a broken wrist as I waited at the front desk, and as a mother myself, I know every minute you wait is torture for the both of you. It makes me uncomfortable that your child’s obvious pain is not as critical as what I’m dealing with at the moment. It really does.
I see you, all of you, even as I’m desperately avoiding eye contact. You’re all sitting there in uncomfortable chairs, sweat on your brows, pain in your eyes, and tension in your shoulders as you hope the next name called is yours. Or your child’s. But I know my child’s name will be called first and that when I stand, grab his hand, and walk him back, you’re not all sending me love with your gazes. I hear the things you mutter under your breath as well as the things you mean for me to hear. I’ve heard the loud voices of others yelling about us as the doors close behind us. And honestly, I’m sorry. I truly am. As much as I’d like to be the person who can shake off the stares and glares and walk defiantly past each one, maybe tossing a few middle fingers in the air as I go, that isn’t me. I don’t delight in our quick pass to urgent hospital care.
You see, I’d much prefer to be dealing with a broken wrist or a regular old stomach flu. I’d rather sit there an extra hour with a normal complaint because in our family’s case, those minutes ticking by are minutes that could potentially mean the difference between brain damage or no damage for my little boy. I know it’s difficult to believe.
Unlike the man who stumbles in with blood drained from his face and hands clamped to his chest, you cannot tell that my son is in a crisis. He may be woozy and limp in my arms, or he may be upright, walking and even laughing. But what you don’t know is that inside of his body, right there inside of his skull, an invisible toxin is damaging my child’s brain. That toxin, ammonia, may cause him to sleep, or it may cause him to be hyper and act strangely, including odd, creepy laughter for no apparent reason. It could cause him to stumble into walls or fall into a deep sleep for hours and hours. If left unfettered and untreated, it could cause him to die. That’s not hyperbole. That’s our reality.
He has a urea cycle disorder called citrullinemia, and because of the way his body was made, missing one little enzyme, sometimes we don’t have much time when things go wrong. We have to assess and act quickly, and the good folks at our hospital know this. They know that because my 6-year-old has walked through those doors more times than any child ever should. I’m guessing, but I would say it’s somewhere around 30 ER visits at this point. He’s also walked out many times as well, concerns unfounded and relief on our faces, but we can’t see the toxin in his body. We cannot know if his brain is in danger until the emergency room doctor runs the test.
That test is only available to us by going through the emergency department because there’s not another facility anywhere near our home to check his levels, and because his blood is taken from a port implanted into his body and threaded into an artery, the environment must be sterile. That means the hospital every single time. There is no home monitor to check him and find out for sure (oh, how I wish), so after I watch him, assess him, and then make the painful decision to risk a trip in for the test, I have to hope and pray that no one decides to start a fight with me in the waiting room, just so someone can jam a needle into my brave child’s chest for a little blood.
So I know you’re angry, I do, but he doesn’t have 40 minutes to wait, or three hours during flu season. He just doesn’t. In fact, I’m literally risking his life having him in that waiting room in the first place (due to the germs, viruses, and hospital-acquired bacterias), so please know that if I walk in, my concern is real and not something I take lightly. I take none of this lightly because I cannot afford to. And because I cannot afford to, my child comes with an emergency protocol — an actual letter of protocol from his doctor at Johns Hopkins that every ER in the world takes seriously. He walks into the hospital with explicit instructions on how to save his brain should that toxin be elevated, every person working in that ER knows his name and the urgency his care requires because they’ve tended to him and cared for him for years and waved him off with tears in their eyes as a helicopter flies him off to a larger facility because he’s far too sick to stay local.
So when I walk in and the nurses recognize him, calls out his name with a smile, and they allow us to wait for a few minutes in an enclosed room separate from the virus-laden masses, when they call his name before those waiting far longer, we aren’t receiving special treatment because we “know someone.” (I’ve heard that accusation — though it’s true, we know lots of “someones” and each of them is special to us.) We’re receiving special treatment because his specific situation dictates that urgent action can save both his brain and his life. Just like the woman with chest pain is seen before the woman with a bad stomachache, my child will likely be called back before most other emergencies.
I know that upsets you.
I know it seems unfair.
But I ask that you understand I’m working against a ticking time bomb and that I’m so sorry for your suffering as you’re forced to wait a little longer to be seen. We didn’t choose this life, but we’re thankful for plans in place, doctors and nurses who act quickly, and for those of you who do not judge based on something you don’t know.
He just needs to go first, and I’m sorry.
This post previously appeared on The Mighty.