Real-Life Stories of a Disabled Mom: A Tale of Two Surgeries or How to Talk to Your Kids About Procedures

Posted by Kieran O'Brien Kern in Life After Paralysis on October 06, 2021 # Health

Kern family posing together while sitting on a bench outsideGrowing up, I was the kid worried about everything and everyone and went out of my way to nurture them to the best of my ability. When close family members were sick, my worrying went through the roof. My family’s very 80’s and 90’s solution to this scenario was to curate my knowledge.

Fast forward 20 years to the fall of 2020, I was planning a minor bilateral leg surgery and didn't want my kids worrying. I went with my family’s methodology of minimizing everything and distracting the kids. My surgery was equated with a trip to the doctor that would help me walk better. I spent little time discussing it and most of my time planning a whirlwind weekend of fun at my sister’s house with the general idea of keeping them so excited that my surgery would be the furthest thing from their minds.

The night before the procedure, my children clung to me. They wouldn't let me out of their sight and even slept with me. They had a great time at my sister's house, but I left them unprepared as to how my recovery would be. As a value-added bonus, it made them jumpy every time they heard that I was going to the doctor. This motivated me to postpone a much-needed surgery.

In the late spring, I learned that the much-needed surgery I postponed had become more serious. My injury had progressed and now involved my spinal cord. In truth, one fall could have left me paralyzed from C3 down after a life with cerebral palsy I didn't want to willfully risk more when I could ideally regain or preserve my functionality.

This surgery would be more invasive my recovery would be longer. So, to avoid prior pitfalls, I wanted to communicate openly and honestly, making sure to answer all questions. Before we set the date, we established that I hurt my neck and couldn't move and do things the way I had. My preschooler would very sweetly and kiss my “boo-boo” neck to make me feel better. I explained that those made my heart feel wonderful, but the surgery would make me move and work the way I did before, even if it took some time.

We consulted with a therapist on how to best communicate with the girls. My husband and I wanted to let them know we were a safe place to ask questions. We shared a timeline with them based on the evidence I gleaned from studies of people with Cerebral Palsy who have had this surgery. This timeline gave them insight into how long I could be away.

Due to a need for additional care and eventual time in inpatient rehabilitation, my time away from my children was extended. I FaceTimed into a therapy session with my husband and explained that mommy had to go to rehab to learn how to use my body better and function when I come home.

During rehab, I arranged with the Recreation’s Director to have a visit with my girls so we could see each other and hug and play. Instead of whisking them away on a weekend of fun, we kept them at home and maintained a sense of normality. My mom stayed at the house, so the girl's activities, playdates, and birthday parties stayed the same. Keeping them informed, in contact with me, and their daily life as close to normal as possible made the difference between kids who jumped when I mentioned follow-up visits and kids who asked questions knowing their mom was coming home.

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.

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.