I remember talking to a nurse in the hallway after Callie had her second open heart surgery.
I literally was dead on my feet. I hadn’t eaten or slept in days. She lost a ton of blood during the procedure and had some complications. The emotional turmoil was like a roller coaster, one moment she was managing her pain well and the next we were literally in tears because they want us to make her walk the hallways to get her endurance back. One tiny step might as well has been a mile. Alerts and alarms were going off every five minutes. Sleep was non-existent. Callie refused to take some of the medications because they tasted disgusting so we were trying to work with the childlife specialists to figure out ways to help her take her meds without actually inducing even more trauma on her. We literally watched them remove two huge ports out of her lower torso (I threw up in the trash can) and she had a new (giant) scar cutting across her small chest.
“You’re going to look back on this in a few months and be amazed at how far you’ve come,” she said and awkwardly patted me on the shoulder.
I wanted to punch her in the face.
I couldn’t even imagine a month from now let alone making it to the end of the day. We were living our life in a minute by minute interval at that point.
When we left the hospital after six long days, I still was on high alert.
Triaging the deluge of a high impact surgery, continuous medical issues, post op duties, and recovery plans is enough to land anyone in survival mode. With your brain jumping from task to task trying to separate the urgent from the super urgent, it’s no wonder our bodies revert to the primal fight or flight response.
Fight or flight mode happens when stress hormones put our bodies on high alert, causing physical reactions like rapid heartbeat and increased blood pressure. Existing in this prolonged state of high alert—as parents of medically complex kids often do—can take a severe toll on our health and wellness.
I’m by no means an expert on anything. But here’s a round up of things I’ve done in the past that have really helped me transition out of survival mode and get back to the present moment.
Nourish Your Body (Well).
While entrenched in long stressful hospital stays or juggling a myriad of doctors appointments, too often we end up subsisting on extra large iced coffees and stale hospital vending machine snacks. Erratic eating patterns and sugary foods can cause blood sugar to fluctuate, which triggers stress. Caffeine can also ramp up the nervous system. When I’m trying to get out of survival mode, I focus on eating regularly throughout the day and reaching for healthy choices like minimally processed food that’s high in protein so I can help regulate blood sugar and maintain energy. I make sure I’m drinking enough water and add things like electrolyte packets to ensure I’m hydrated.
Ground Yourself in the Present Moment
When you feel your adrenaline start to kick in, focus on your five senses. Look around and name the things you can see: a blue hospital chair, a pink shirt, a yellow curtain. Press your hands onto the counter, your car dashboard, the bench outside, or whatever is around you and notice how it feels. Take several slow, deep breaths and notice any scents around you. Close your eyes and focus on what you can hear, whether it’s traffic noises or birds chirping. Pop a mint or a stick of gum in your mouth and savor the taste it creates. Focusing on what your senses tell you about the state of the world around you can ground you in the present moment and prevent fight or flight mode from taking over. Sometimes, I’ve had to excuse myself to do this in the family waiting room of the hospital or by taking a short break and walking outside for some fresh air. I’ve found that the hospital, with it’s harsh fluorescent lights and constant beeps, can be quite overstimulating for me, so taking an “outside” break for some sunshine and fresh air is key for stabilizing my equilibrium.
Find Ways to Move Your Body
When Callie is in the hospital, exercise is my absolute last priority. Even though I know the benefits are vast and I know that I can’t take care of her if I’m not taking care of myself.
Where I can, I’ve found time, even as little as twenty minutes of walking, so I can get my heart rate up and get the much needed experience of the release of endorphins, the so-called “happiness hormones” that can counteract survival mode. I pair this movement when I need to get some “air” and get out of the overly stimulating environment–a quick walk around the block gives me a much needed hit of Vitamin D and a boost of endorphins.
You don’t have to be Wonder Woman or Superman–you don’t have to go it alone. Seeking help with meals or rides to and from the hospital can lighten your load, and leave you free to focus on where you need to be. Be specific for what you need–do you need someone to help with walking your dog while you’re at the hospital? Do you need help with shuttling the other kids to their activities because you have to take your son to a surgery follow up? Do you need someone to come up to the hospital so you can take a much needed break?
And pro tip–the rise of online therapy has also made it easier and more accessible to talk to a professional if your mental health is suffering. The stuff we go through as a parent of a child with disabilities can be HARD–there is absolutely no shame in talking with a professional when you’re having a hard time.
Finally, I think you should extend as much grace and compassion as you can to yourself. Give yourself time to feel all of the emotions, navigate all of the big feelings, and let go of any guilt you might carry. You are doing the absolute best job that you can with the resources you have. Let go of any standards or judgement about what you “should” be doing and focus on taking care of yourself and your family.
We see you…..and we’re rooting for you.