How Medical Parenting Rewired My Brain

Before becoming a medical parent to my youngest daughter, JJ, I was pretty happy with the way my brain operated. I juggled many work-related tasks and details of our daily life, but it never felt like more than I could handle. And although I experienced some busy moments, I had just as many when I could focus intensely—usually while at the office. I worked as a Graduate Writing Specialist at a university writing center and enjoyed the job immensely. I explored topics as varied as medieval Italian tapestries and the latest advances in bioengineering. As I edited students’ theses and dissertations in my quiet office, my mind—sharp and focused—would often enter a flow state.

Five years later, my brain feels like it belongs to another person entirely, mostly likely due to changes in my circumstances and a high amount of chronic stress. In the last few years JJ has received multiple devastating diagnoses, including that of Rett Syndrome—a rare and progressive neurological disorder. During the initial regression period common for the disease, she spent a year having violent meltdowns that left her with many self-inflicted wounds and me with lasting psychological trauma. At the same time, she became unable to rest well at night, and sleep deprivation took up permanent residence in my life. During those years, JJ also underwent two surgeries and a had a couple of near-death experiences. It didn't take long before I stepped out of the workforce to manage all of this, becoming JJ’s full-time caregiver.

I first noticed stark differences in my neural circuitry after a summer of intense stress when JJ was five. My husband and I spent three months trying to help JJ adjust to a new medication with lifesaving neurological benefits and terrible side effects. After weeks of watching her vomit multiple times a day, my heart would race whenever she made the tiniest retching noise. Her wet coughs during the night had me jumping out of bed and running down the stairs, praying I would be in time to head off the worst of the mess. It was a period of great uncertainty, high stakes, sleep deprivation, and hypervigilance. When autumn rolled around and her side effects finally abated, I returned to my normal life. But my “normal” brain never came back.

My thinking now felt hazy and sluggish. I struggled to focus on anything beyond the tasks necessary to my daily functioning. Words sat on the tip of my tongue, but refused to leave it. I cast around for the name of that one actor, that piece of gossip my neighbor told me, that funny joke I had just heard. Where was all of that information? I didn’t know, but it sure wasn’t in my hippocampus.

At first, I worried I was losing my mind and googled the symptoms of dementia. I had none of them. But when I started looking into the effects of chronic stress on the brain, it all made sense. I could now add stress-induced brain fog to the list of things I never knew existed before I had JJ. (If you are a stressed-out medical parent like me and feeling foggy, this is likely the case for you too).

The strange thing was that the fog didn’t affect all of my brain functions equally. Though I couldn’t always locate the correct word or remember things I had just experienced, I could still do everything I needed to for my daughter. When doctors asked me about JJ’s medications, I could rattle off the long list immediately. Recounting the years of her complex medical history? No problem. Juggling the ever-changing roster of in-home care workers and their multiple weekly shifts? Totally doable. Calculating the logistics involved in traveling with a child who has five daily hour-long feeds and a dozen syringes of refrigerated medication? I could do that too.

After a while, I realized that my brain was actually rewiring itself to fit the contours of our new existence. There were many skills and tasks that were no longer useful and so were pruned away. I no longer needed highly-developed verbal abilities or a memory that captured the minutiae of our everyday life. It didn’t matter to JJ’s health or happiness what we had for lunch the day before or the name of her therapist’s husband. Instead, my mind seemed only to have the space to retain truly useful information.

My brain also prioritized the mental skills that my family needed the most. Over and over again, my mind calculated logistics—how many minutes until the next feed, which supplies to put in JJ’s school backpack, the exact time we should leave the house in order to make it to a medical appointment. I found I also needed the ability to troubleshoot medical mysteries. For instance, why was JJ vomiting for weeks on end? What was making her scream at the same time every day? Why wouldn’t she stop shifting uncomfortably in her chair? These mysteries ruined everyone’s quality of life and so I harnessed my brainpower to solve them. I called specialist after specialist. I tried out different types of medications and tracked their side effects. I noticed every tiny change in JJ’s body language, demeanor, routines, and sounds. I applied the scientific method multiple times until I found a solution. (Add a new reflux med to stop the vomiting. Change her feed from formula to home blend to stop her screaming from gas pain. Massage her hips and legs to relieve uncomfortable muscle tension.)

Parents like me have a lot going on in our brains. There are many reasons why the circuitry we start this journey with is not the circuitry we end up with. Clearly, the need to calculate logistics and problem solve are a part of the equation. But there are many other explanations for the massive shift. Thanks to the toxic mixture of sleep deprivation, chronic stress, hypervigilance, and traumatic medical experiences, many of us struggle with anxiety, depression, and/or PTSD. These things never make for smooth neural functioning. And to top it all off, we also have constant drains on our attention and feel intense pressure to multitask. While we are caring for our children and completing our chores and admin tasks, we are bombarded on a daily (if not hourly) basis by messages and requests from our children’s schools, therapists, nurses, doctors, insurance companies, pharmacies, and case managers.

Of course, medical parents don’t have a monopoly on stress and brain fog. Parents of typical children have their own sources of stress and multiple details to juggle. It’s just that medical parents often have more of these sources and more of these details. The stakes for our children are also quite high—at times, literally life and death. The biggest difference, however, is that parents of typical children know that this stressful, hectic period of their life is likely temporary. At some point in the future their children will be able to function on their own. Medical parents have no such guarantee. Instead, many of us know that we are in this for the long, long haul. We (and our poor brains) will bear a heavy mental burden for years, often with no end in sight. Or if there is an end, it’s not one we want to think about.

So, the next time a parent like me stumbles over a word or forgets a name, extend a little grace. Our minds are probably a jumble of to do lists, looming worries, and medical mysteries we need to solve. But we’re not complete messes. Ask us to troubleshoot a problem, draft an insurance appeal, calculate travel logistics, or organize a binder full of medical documents, and we’ll do a bang-up job.

Just don’t ask us what we had for dinner last night because we have absolutely no idea.