What I Realized About Self-Care in the World of Medically Complex Parenting

From the moment Emmy was born, the four words that I’ve come to dread began.

“Self-care is important.”

I’m certain that it is, but who has the time when you are working full-time, raising two kids — one medically complex, one typical — who each have their own challenges, running a household, scheduling appointments, ordering medical supplies, doing therapies, etc.?

Occasionally, I am able to take a bath using my favorite bath bombs and I consider that a win. There, OK? There is the self-care almost everyone has been going on and on about.

We recently traveled across the country for a surgery for my daughter. We were away from home for two weeks and spent ungodly sums of money to do so. During the days leading up to the surgery, she suffered a head trauma from a fall and, to be quite honest, those days following have been some of the worst of my life. This trip has not been a minor stressor.

Once we were discharged from the hospital, I booked my husband a massage at a place near our hotel. He had fallen in the accident and had been talking about really wanting one well before we left for our trip but never had time. He came home so refreshed and told me I should book one, too.

I laughed. Sure. “With everything going on, I’m sure I will find the time.”

The next day, my daughter was having severe pain issues post surgery (which the multiple doctors had refused to help her with, but that’s a whole story for another time) and we rushed her to the ER. We spent several hours there and once we had this settled I told my husband I was booking my own massage for later that day just for the brief hour alone.

I laid on that table feeling anxious and nervous about everything that had happened in the past weeks and everything coming up. I couldn’t stop worrying about whether or not we’d be able to fly home in the next days as planned.

The masseuse came in and began to work. Her hands were strong and her pressure was more than I had expected, especially for someone shorter than me weighing approximately 95 pounds. She began the ritual beating of my back and legs. She massaged my tense neck and my shoulders.
She asked me if it hurt, and I lied to her by saying, “No.” The truth is, it all hurt. Her hands were rough by design and it hurt deeply. But I never asked her to stop. I couldn’t figure out why. It felt great but also much tougher than I was used to.

When I left, I climbed into our rental car and wept.

I cried for all of the things I hadn’t allowed myself to feel for the past two years. I cried for every moment I had worried about our daughter’s life and our son’s experience in a family with a medically complex sibling. The tears fell for several minutes as I allowed myself the luxury of grief.

I realized that I had been on autopilot for so long that being in that moment, with someone massaging me in a way that would likely leave bruises, was feeling that moment intensely and focusing on my own pain. I wasn’t thinking during that time of anything but the experience.

I also realized that is what self-care truly looks like for me. For me, it isn’t the time away or even what I am doing, but how deeply I can feel it and focus on my needs alone.

I can go get my nails done every week and I am still checking e-mail and scheduling appointments. I can go out for coffee but my head is at work or wondering what ways I might have “failed” my children today.

The self-care that truly matters is when I give myself permission to be selfish and shut that all off. And if takes finding a massage therapist that will let me lie about it not being too rough once in a while, I guess that’s what I will have to do.

As parents of medically complex, sometimes fragile, children, we learn to block out the hurt and dull the emotions that come with all the medical visits and hospitalizations and diagnosis. I personally considered surviving each day the only kind of “self-care” I could do.

We shut ourselves off to that pain and sometimes we do it so well, we don’t notice when something physically hurts until the moment has passed and it surfaces— aggressively and raw.