Self care it’s the hot topic these days. I’m constantly hearing things like take time for yourself, put your own oxygen mask on first or you need to be the best version of yourself for your child. Moms, we are the last ones to put ourselves first, I saw this first hand growing up with a single Mom, raising three girls. Add a child or children living with complex medical and educational needs, your title soon expands from Mom to nurse, teacher, advocate and caregiver and your own needs fall even further down the list.
As a trained yoga instructor, I know the importance of self care, in fact yoga helped me cope with Reagan’s diagnosis early on. It’s the application of self care that is a true challenge.
When I started this post in January of 2020, Reagan was in a place of stability for the very first time. A place where we were not at the pediatricians office every other week. A place where the school nurse wasn’t calling me multiple times a week. A place where medications weren’t being changed every few months. A place where we didn’t live in a constant state of panic. While much of that holds true still, we aren’t in that same space of seizure freedom. The pandemic added the stress of virtual schooling, loss of services and keeping Reagan healthy.
Leading up to 2020 we pushed, we added on, we doubled up. We did all the stuff. It paid off, Reagan benefited in ways I couldn’t even dream of. In doing all this, I realized the person who fell behind was me.
My two to three days of yoga slowly started to phase out making way for more therapies, appointments and even cheerleading. The once a week yoga class I taught was replaced by swim lessons, since every other night was already booked. My weight fluctuated as I let pizza and chicken cheesesteaks sneak back in because I was too tired to make healthy meals after hours of Keto prep. My hair speckled with grays and lines have creased my forehead. My body and mind are fatigued, the emotion that lies behind all the “stuff” is draining and all consuming.
You see self care is easier said than done, especially when there are complexities to your life that take precedent.
I didn’t take the best care of myself , I didn’t do all the things I wanted to do before I turned 40, I didn’t do anything for me. And I was more than okay with it because Reagan was thriving (and even with break through seizures, still is). I was okay until I wasn’t.
In the past six months I’ve found myself in the emergency room twice and at more doctors appointments than I can count. The general diagnosis was this….”you have stress and anxiety and need to dedicate time to yourself”. Now, there are a few really fun (sense the sarcasm) underlying female things going on as well (hello perimenopause at 41), some that require every six month checkups but at the core was stress and anxiety. I think any “special needs”, medically complex parent can relate.
This isn’t “oh a pandemic happened”, this has been going on for years and it finally came to a head. Looking back I never asked for help, I just kept plowing through. Travis and I haven’t been away just the two of us for even an over night in well over three years, maybe more and I can count the amount of date nights on one hand. I didn’t ask for help out of fear. Fear of not being there for Reagan. Fear someone else wouldn’t be able to handle all the stuff. Fear a seizure would happen and I wouldn’t be there. Fear a seizure would happen and whomever was with her would experience the same trauma I did after witnessing her first seizure.
I also didn’t ask for help because I didn’t realize I needed it. Sometimes help comes in the form of letting go of what doesn’t serve you. I’ve let go of a job that caused undue stress, I’m learning to say no, I’m learning to see things as they are and not as they should be. I’m learning that self care doesn’t just happen on Sundays in the form of a bubble bath and face mask. Self care is doing the things that make you, feel more like you.
This post isn’t for pity, it is a cautionary tale for those living in this world. In the midst of doctors appointments, specialists, new diagnosis’s, therapies, IEP meetings, etc., make space for yourself, for your spouse, for the person you were before this crazy ride.
This post sat dormant for well over year, a year that I lost, don’t lose the year, don’t lose yourself.
Rea of Hope 