Comunidad de información y apoyo para las personas que viven con parálisis y sus cuidadores en español.
Real Life Stories of a Disabled Mom: Pandemic break getting real about what I need
“At first I was afraid I was petrified…” Everywhere I turn it feels like I am living my whole world in the first stanza of the Gloria Gaynor Dance Anthem. As a mom of two with a disability multi-threat (I lost count of how many), on a good day I’m cautious, on a bad, I’m beating back anxiety and fear with an outmoded weapon from my past anger. In earlier incarnations, tapping into my anger freed me from my fear and allowed me to “come out swinging” and accomplish what I needed to on or ahead of schedule. However, I wasn’t confined to my house worried that coming within six feet of the wrong person would render my family of four, a family of three, thanks be to asthma.
But this isn’t a fear post!
I’m an ambulatory wheelchair user with developmental disability (CP), chronic pain. My stress, anger, anxiety, lack of sleep and downtime, medicine that helps me breathe, barometric pressure, preservatives, anything can flare my pain, but the component that keeps me down is lack of movement. I am extremely lucky that I have a good PT facility within a 5-7 minute scoot from my house. We’re rounding out the first week of “Pandemic Break.” My kids are home, my husband is home, and the only place my wheels are spinnin’ to is physical therapy (do not pass go, do not collect any groceries). My chariot is detailed with an array of sanitizers, as am I. But don’t tell my PCP because I am supposed to be on lockdown due to my asthma. In deference to her warning I take the last appointment of the day. There are only three people in the office; my therapist, the receptionist, and me. I have been with these ladies for over a year and they feel like family. I trust them. In all honesty, weeks of no physical therapy could very easily stretch into months and turn me from Tin Mom who just needs a few well-placed oil cans to keep moving to a heck of an imitation of a petrified log. I could go the martyr route and say my husband and kids don’t deserve that. . . but that’s bull.I have worked too hard to maintain and raise my baseline to let it go to hell. I deserve to keep working. . . for me.
But it’s not only to benefit my body and mobility. Seeing people outside of my home is a manna to my soul. But even more so is finding time for myself during the day makes me a better member of the household. Last weekend I looked at several schedules, color coded, subject or grade specific. . .some featured yoga or lengthy walks in the neighborhoods. Nothing translated easily to our life in any way. I started to feel mommy guilt that I haven’t felt since my oldest was a baby. I combed through her backpack, her folder, every teachers’ website, and my first grader’s brain. Meticulous notes were taken. I planned within an inch of my life. I didn’t realize therapy from Monday night with my usual PT’s partner (who said I’d feel it tomorrow) would leave me reaching for my NSAIDS and that my oldest didn’t like the idea that her mom was her teacher, and that school started on St. Patrick’s Day, which is normally pretty magical here. The week was far from perfect and I can say with full conviction that the week was a learning experience for all of us. One of the greatest things I learned this week was that instead of lamenting over “when am I going to get my work done?” or “when will I get time to exercise or breathe?” was to be present in what I was doing and clearly state my needs to my family. With slightly over a week into our confinement I’ve gotten real, and what did it get me? A productive sunny afternoon in my office, while my husband helps our oldest daughter finish her homework while distracting our youngest.
I’m Kieran Bridget O’Brien Kern. Power is literally my middle name. When my husband and I became engaged, we agreed that parenthood was a two-person job. I am the primary caregiver to our children, but we all work as a team. From infancy onward, we have adapted and grown together. Every day there is a new challenge. Every new challenge is an opportunity to learn more about them and myself. Please check out Kieran's Instagram @kierieo.