Constant Duality

Yesterday was just a normal day in our house. Everything basically status quo as I prepared to head to an afternoon dentist appointment-for myself, for once! As I was getting ready, I realized that I was doing something not everyone does. Well, as long as they don’t live with medical needs. I was making parallel plans. Putting on my make-up while also making a small pile of essential toiletries clearly placed on the bathroom counter. Making my bed, and also making a note about what things I would want from my bedside table. Placing our hospital ‘go bag’ on my side of the bed. I was getting ready to go to the dentist, and getting ready to possibly go to the hospital at the same time.

My husband has a cold, he has been careful around my daughter, but she woke up cranky and maybe stuffy (one of our biggest fears). Of course, our minds went to the fact that she was exposed before my husband knew he was sick. She was probably fine! (Turns out she was- so far). But this is the life we are living. We live in the constant duality of normal life and emergency preparedness. 

The Everyday vs. The Unknown

One of the strangest realities of parenting a medically complex child is how seamlessly the ordinary and the extraordinary exist side by side. It’s a life where you might be brushing your teeth, running errands, or heading to a meeting, all while also mentally preparing for an emergency that may or may not come.

This contrast plays out in endless ways:

• Grocery shopping vs. Emergency admissions: I can be picking out fruit while also watching my phone for an oxygen saturation alert that could send me straight to the ER.

• Work meetings vs. Life-altering conversations: I might be responding to emails while waiting for a specialist to call with test results that could change everything.

• Packing for a quick errand vs. Packing for an unknown hospital stay: Most people grab their wallet and keys. I bring a hospital bag.

• Dinner plans vs. Medical crises: I could be texting a friend about where to meet for dinner while also calling a home nurse to check on a fever that might mean an ICU stay.

For most, routine tasks are just that—routine. For me, every “normal” moment carries the undercurrent of "what if?"

The Emotional Toll of Dual Planning

Living in this constant state of readiness isn’t just logistically exhausting; it’s emotionally draining. The weight of preparing for two vastly different realities at the same time is something most people never have to consider.

• The mental gymnastics: The ability to pivot is second nature now, but that doesn’t mean it’s easy. One minute, I’m in a waiting room for my own check-up, the next, I might be giving a full medical history recap to an ER doctor.

• The anxiety of the unknown: Even when things seem stable, my mind is always running through scenarios, predicting, preparing. It’s the invisible mental labor of caregiving that others rarely see.

• The grief and guilt: Sometimes, I allow myself to hope for a truly “normal” day—one without backup plans or contingency bags. But then I remember that hoping doesn’t make the reality go away. 

This emotional weight can feel unbearable at times, but I have found ways to steady myself. And if you are living this life too, you can, too.

Strategies to Maintain Emotional Equilibrium

Despite the unpredictability, I’ve learned ways to manage this life-in-between without constantly feeling like I’m in crisis mode. Here are a few strategies that help:

• Pre-packed bags: One for routine outings, one for possible hospital stays. That way, I don’t have to start from scratch if plans change suddenly.

• Mental scripts: I know what I’ll say if I need to cancel an appointment or explain a situation to a doctor.

• A network of support: I have people I can call on to step in when I’m pulled in two directions.

• A balance of preparation and presence: I’ve had to learn how to live in the moment even while staying ready for what might come next. And being prepared for an admission actually helps stay balanced

• Breath and mindfulness techniques: I remind myself that just because I am preparing for an emergency doesn’t mean I am in one right now. Deep breaths, small grounding rituals, and a quick moment to check in with myself go a long way in reducing stress.

• Giving myself permission to feel: Some days, I’m frustrated. Some days, I grieve. And that’s okay. I don’t have to pretend this life is easy to be strong.

You don’t have to live in a constant state of panic to be prepared. You can be ready while also finding moments of peace within the chaos.

The Unexpected Lessons from Living This Way

As much as I’d love a life where I could just go to my own appointments without a second thought, I wouldn’t trade the life I have with my daughter for anything. And I can’t deny the lessons this reality has taught me.

• Resilience: I have learned to move through uncertainty with strength I didn’t know I had.

• Adaptability: Life rarely goes as planned, but I can pivot at a moment’s notice.

• Gratitude for the mundane: The days that stay ordinary are gifts. The times when the hospital bag stays in the car, untouched, are moments to cherish.

A Testament of Love

This life of constant readiness is exhausting, but it’s also a testament to love. Every packed bag, every contingency plan, every moment of dual preparation is born from a deep, unwavering commitment to my child. For others walking this path, I see you. I know the weight you carry, the mental juggling act you perform daily. You’re not alone in this in-between space.

There’s no perfect way to do this, no perfect balance to strike. Some days, we’ll feel like we’re barely keeping up. Other days, we’ll exhale and realize we made it through. Both are okay.

You’re doing better than you think. See you next time.