Anatomy of a Medical Crisis

An Event in 4 Parts

It always starts out as an average, boring day, doesn’t it? I was home alone with my nonverbal son Jack. I flopped on the couch downstairs, settling into a Netflix binge, my dog Bubba Sue dozing by my side.

The mood shifts upstairs in Jack’s bedroom. My skin prickles, aware of the change before I do. A foreboding sound emerges, initially muffled by the show I was watching. It begins to grow.

No, I think. Impossible.

Just 15 minutes ago, 16 year old Jack danced out of the kitchen, freshly fed and recently toileted. He wanted to go to his room to sleep. But the noise increases. My heart sinks as I register Jack wailing and moaning. And then a second rhythmic sound begins, that of his clenched fists whacking the sides of his diapered hips, his soft sweatpants the only protection from the onslaught.

The hitting keeps time to the song of parenting failure that I play in my mind as I sprint up the stairs. I shouldn’t have relaxed my guard, I should have known he was hurting, I should have, I shouldn’t have, I should have. 

I run to his room uncertain of what I will find, but I must solve this on my own. Because my husband Mike is out of town.

Damn.

I brace myself. Will his face be covered in blood? A rash? Broken blood vessels mapping his entire face and skull? A seizure? All of these have happened at one time or another, but luckily Mike was there for those. I want to freeze this moment before discovery. I dread what I might find.

I find Jack kneeling on his bed, face crimson, mouth contorted, as his self-flagellation continues. My heart breaks as I wrestle his fists away from their targets and pull him to me. He sobs into my neck, his hands pull me into a tight embrace. I rub his back and croon automatically, It’s ok. It will be fine, you’re ok. It’s borne of desperation, the words I say to convince us both that I’ve got this, while praying that I actually do.

I take him to the bathroom again, because I don’t know what else to try. Miraculously, his anguish stems from post-lunch gas. Problem solved, his face brightens. His self-punching seems like something that happened a lifetime ago, save for the souvenir of his reddened hips and knuckles. He laughs giddily. I run him a bath. My heartbeat returns to normal.

But it doesn’t always work like that.

Sometimes a situation doesn’t resolve itself in 15 minutes. It can last a day or a week. Or months, off and on.

In the past few years we’ve experienced the “Jack had a seizure/stops breathing” crisis, the “inability to urinate for over 12 hours and had to be catheterized at the hospital” crisis (that one almost had a sequel one month later), or the “extremely distended stomach and hyperventilation that they initially thought required intestinal surgery but ultimately didn’t” crisis. Just to name a few.

Maybe you won’t experience any of this. Everyone’s special needs journey is different. But if you do, I want you to go easy on yourself. In my experience, the arc of any spontaneous crisis remains consistent, regardless of the particulars. Thankfully, Jack’s medical crises have not given us devastating news like a terminal illness. But they’re draining and unpredictable, nevertheless.

It’s like those Choose Your Own Adventure books I used to love reading when I was young. No matter what twists and turns you choose in books like those, you eventually wind up at a predetermined end. If I were to write a basic premise of a Choose Your Own Adventure story, it would go something like this:

Part 1: The Beginning

It is 9 p.m. on a school night. Jack, your child with special needs, has an unexpected, spontaneous, medical issue. Nothing that normally works is helping, and the event seems larger than your go-to bottle of liquid Motrin can solve, anyway.

The adrenaline gallops through your veins as your mind scans through the options. You know you can’t break down, there’s no time—you can save that for later. You actually make a mental note to schedule a good cry after all of this is over. That settled, you move farther along on your decision tree.

Can this wait until you can call the pediatrician in the morning? Or should you just go to the hospital? Or phone the 24 hour on-call nurse at Jack’s pediatrician?

Part 2: The Middle

You and Mike decide this can’t wait. You take Jack to the hospital, while Mike stays home with your other child. You promise you’ll text updates.

You blink your eyes and now you’re with an ER doctor. You’re frantic, but try to sound pleasant, reasonable and above all, not hysterical.

You advocate for Jack, yet you feel disadvantaged. Your liberal arts education doesn’t help you here at all. Maybe you should have studied medicine. It would really come in handy now. But then you remember why you didn’t study medicine—science and math were never your strengths. And you don’t like blood.

You force yourself to pay attention.

You try to focus.

You rattle off Jack’s problems, symptoms, duration and current medications and allergies. You are on autopilot. You regurgitate the minutiae of Jack’s day, hoping to find clues in the mess.

Your overworked doctor stands firm and brave as your words become an avalanche of Jack’s personal history, burying him in their detail. He offers educated initial guesses as to the cause of the problem. Because Jack’s symptoms aren’t textbook. They never are, so you’re not surprised.

He tells you next steps. I ordered tests and it will be a while until they happen. Any questions, ask the nurse who will come to check in on you. He disappears.

And then you wait. Different doctors and nurses stride in, ask questions, examine Jack, then leave, swallowed up by the hospital corridor traffic outside.

Tests happen.

Time stands still. Goes backward.

You feel numb and underwater and idly regret not bringing a warmer jacket to the hospital. It’s always cold and you’re stuck here for God knows how many more hours. How long will you stay? They can’t tell you.

You wish you remembered to bring your phone charger because the battery is low and you need to keep Mike updated. He must be frantic. You kick yourself for forgetting your charger, but text Mike what you know, warn him of battery situation and hope he gets the message as your phone dies mid-send.

And you forgot a book. But your attention span lasts as long as a toddler’s. So just as well.

You try to keep calm. Breathe and watch the clock. And wonder why, in a windowless hospital exam room with your now dozing son, you feel trapped in an eternal twilight, even though it’s dark outside.

Part 3: The End

It’s all over and they discharge Jack.

Good news! The medical staff proclaim. He seems “ok”.

And they smile and shrug their shoulders after you ask them what you could do to prevent a recurrence. You try to smile back.

You want to believe things are fine. But no one knows why it happened, or if it will happen again.

You feel fierce gratitude that Jack has health insurance, quality care and no devastating diagnosis. Yet you also feel frustrated because the mystery remains unsolved.

And it might happen again, or something else, or something worse just when you begin to relax.

Jack lets you take his hand as he starts pulling towards the exit, the gateway to his freedom.

Part 4: Epilogue

Jack is home safe and sound. Singing and letting the dog lick his hands and face. You’d never know he just spent hours at the hospital. He’s just happy you ordered pizza for dinner because you want to celebrate your homecoming. And also because you can’t get off the couch. You hug Mike and you talk to your other child. All is well. Back to normal. Your body sags in relief.

But wait.

Maybe 2 days later you experience the post-crisis letdown.

You are so mentally tired, you can’t even take yourself up on that crying jag you promised yourself when this whole business started.

This funk lasts days or longer, depending on the circumstance. You do the bare minimum to care for your family and care for yourself as best you can. Don’t feel guilty. It’s ok. You’re tired.

You just sprinted through the special needs obstacle course and now are back to running your everyday special needs marathon. You have given everything you needed to give. It wasn’t perfect, sure, but it was more than good enough.

So that’s it. That’s the anatomy of a medical crisis. You ask yourself what would you do different? What would you do better? And the unfortunate, painful truth is, you know there’s nothing you could’ve done differently to prevent your child’s suffering.

But our children are lucky. They know we love them. They see it in every action we take on their behalf. Feel proud of this. Right now you may be depleted, possibly recovering from your child’s own medical crisis. But just know this stage always passes—just not on our timetable.

You will recover your energy and maybe even cry. The medical event will stop dominating your thoughts. But most of all, you will gain an appreciation for those average, boring days where nothing ever happens.