Ten days before her second birthday, my husband and I sat across from a neurosurgeon whose job it was to inform us that she had a brain tumor. That was over eleven years ago, but the impact of that moment cannot be understated. It’s devastating, painful and scary…like someone threw you into the deep end of the pool and you didn’t know how to swim.
Nothing prepares you for your child having a brain tumor. And, no one can tell you how that will impact her future, her sibling, any plans you had for your life, your finances. Even your most basic beliefs about how the worlds works and your faith in God is shaken.
Thankfully, there is “survival mode.” It explains how moments after hearing this news parents manage to sign forms consenting to surgery, and put on pants the next day. It’s literally how we put one foot in front of the other.
The resilience of our children and the network of enveloping support got us through some very dark moments. We will forever be indebted to so many medical professionals, family members, friends, other parents with children of special needs, therapists, charitable organizations, and institutions who have helped, and continue to support us, through this journey of having a child with special medical and educational needs.
One small way to give back is to share our story and what we’ve learned in hopes that others may feel less alone and move beyond survival mode. I look forward to sharing our educational journey with you on this blog.
Basilisa Perkins is a wife and mother of two children. She was a Returned Peace Corps Volunteer and high school teacher before becoming a full-time homemaker. During that time she was also a caregiver to one of her children with special needs due to a brain tumor diagnosis that required three years of medical treatments. Her daughter is a brain-tumor survivor for which their family is grateful every day despite the struggles and issues that have impacted their daughter’s life.
She holds a B.S. in Education and a Masters in Public Health (MPH). She is a Certified Health Education Specialist (CHES) and Certified Tobacco Treatment Specialist who has works to promote community health through educational programs.