​Real Stories from a Disabled Mom: Decisions Decisions

Posted by Kieran O'Brien Kern in Life After Paralysis on August 28, 2020 # Lifestyle

Just as soon as we found our daily rhythm this summer, September’s studious specter looms largely in my mind. Nightly thoughts of masks, temperature checks, infection rates, backsliding, and more reel through my mind. Top that with all my concrete plans of how to keep my child, her teachers, and the school’s staffsafe. But save for dressing everyone like they’re in Bubble Boy, I took to the inter-webs reading everything I could click on about children’s social and educational needs, viral load, and asymptomatic transmission rates. But no amount of internet research is going to turn me into Dr. Fauci. I’m a parent trying to figure out what the best course of action is for my child’s health, education, and psyche.

But with the infection rates creeping up in the states neighboring states, there is a small part of me that wants to hunker down with a large bottle of airborne and an even larger bottle of bleach-like it was the second week of March all over again. However, the rest of me wants both my kids to have a healthy school-related mask and hygiene routine in place because I want to keep them and my husband and me safe. I have asthma, and due to how my Cerebral Palsy presents, my lungs don’t expand fully.Kern family

Thankfully my toddler’s preschool was canceled. I had so many trepidations about how they were going to encourage a two-year-old to social distance. So now, I’ll be researching a preschool curriculum. I feel somewhat confident about that. But when it comes to my seven-year-old, I tend to glaze over the content... I’m impressed by anyone definitive in this “unprecedented time.”

I called my children’s pediatrician in the hopes of some guidance regarding their development. However, they advised me to do “what I felt was right as a parent.” I appreciated this no-guilt answer and found it frustrating. Now I’m turning to the other parents I know who are neither alarmist nor laissez-faire. So far, I have heard from a few friends who are definitely sending their kids back to school, with the caveat that if it doesn’t work out, they’ll switch to remote. On the other side of the equation, I’m hearing from friends who are choosing remote education or, indeed, homeschooling or e-learning options.

After slaking my anxiety in this blog to my husband and to the multitude of my parent friends that endured my round-the-clock texts, my head was clear to review what the spring felt like to my daughter. Since the school closing came out of left field and lasted until the end of the year, neither the children nor the teachers were ready for the reality of lockdown.

Loneliness was a critical issue; she had great teachers who would literally do cartwheels to get the children excited to learn. Also, there were 20 + other children in a class and her school friends to keep life interesting. Walks around our neighborhood and ball in the front yard can’t compete with kickball at recess.

Maintaining focus for a school day when toys and media surrounded her, whether it was mom as a teacher, learning alone, or learning amidst all the comfort and distractions of home, staying engaged long enough to complete the daily assignments was extremely difficult. As the new year will potentially be a hybrid or remote model, I’m setting up her classroom away from the hustle and noise of the main living area but also across from my office so I can wear a few different hats at a time. Her little sister will also have a desk and activities upstairs for the days when both have to learn, and I don’t have daycare.

It felt very isolating to go from being surrounded by 20+ peers and two teachers to two parents and a toddler. Although weather permitting, we went for walks and played ball and tag outside, it wasn’t the same as kickball during recess or hanging out with friends. Remote play dates were fun, and some were amazing even now within our small bubble of safe people, but it’s not the same. My hope is that if she does go back to school even with a smaller population in attendance that the spirit of belonging carries her through.

Our schedule was the first thing to go out the window. Pre-lockdown we were on a pretty consistent schedule: I was up first, my husband and the kids followed an hour later; everyone was dressed, fed, and ready to go by 8:10 to arrive at school on time. We weren’t exactly a well-oiled machine, but we worked well and had fun. The pressure of juggling on multiple projects, furloughing our daycare provider for her own safety, making at least 12 meals a day, and teaching first grade lengthened my already day to 18 hours on a good day. As I tried to create “memorable quarantine moments” and became more frazzled and the novelty of being home every day wore off, my daughter began to check out, along with everyone else.

So as I zipped around the far fringes of town texting my cohort for their input and thought about the mental and social well-being of my daughter, the hybrid model of in-class and remote time our school system is offering stood out as a better option. I already feel the grey hair of worry sprouting at my scalp, but I cut through my anxiety to get to the heart of the matter and choose wisely for my girl’s needs.

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.lease check out Kieran's Instagram @kierieo.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.