Four months ago, our oldest daughter had a grand mal seizure. It was a terrifying experience. Though she was diagnosed with deafness at birth and autism at the age of 5, nothing prepared us for this medical emergency. We felt powerless, yet we needed to remain calm for the sake of all our children. It was difficult to watch a tear roll down my husband’s eye as he held our daughter during her seizure. As he cradled her and prayed, asking God to make it stop, an array of emotions poured over me. Despite the shock of the moment, we were still focused, making sure we were calm when calling 911.
Despite the various thoughts that flooded our minds, we felt an immediate desire to make a crucial decision. A decision that would encompass all our emotions, and give way to our inevitable new reality; a long uncharted territory that was ahead of us with this new component of our daughter’s additional diagnosis. We decided to take a 15-hour road trip home to Chicago.
Our family was upset with our decision; and they cautioned against taking a road trip with her so soon after her seizure. When she was younger, before the seizure, we took numerous trips. I even earned three degrees while raising her on my own. We’ve traveled across the country, daring to try to live a normal life, a good life. However, we had never faced a major-medical issue until now. Yes, they were right, we were crazy, and we still are. Because seeing your children in pain does something to you. It changes you forever, in a stubborn yet thoughtful way. Below are three main reasons why we took the trip, which turned out very well without any medical emergency.
We Wanted to Feel Normal (Typical)
Ever since leaving the hospital with my daughter days after her birth, I knew we were different from other families. Daily we endure the countless stares and actions of others, which serves as reminders of how unique our family truly is. Until now, I was among the minority of parents whose children have autism yet had never had a seizure. I thought that we had dodged that bullet. This experience allowed us to reshape yet again how we viewed our family and other families that have special needs children. Almost all families that looks ordinary have things that make them special and unique as well.
We Were Fearless
Midway through the last 17 years of parenting my special needs daughter, I reached a point of no return. Perhaps it was the endless meltdowns or the sleepless nights. But somewhere along the way, I became fearless, unashamed, and unapologetic about my decisions. I set out to live a good life. That idea made me bold in my pursuits, passions, and purpose. There is something about the pain that comes from seeing your child hurting or suffering that makes you suddenly brave enough to make bold decisions. After going through several things since my daughter’s diagnosis years ago, after taking a moment to grieve, but then I move on, with a new sense of purpose.
We Wanted to Go Home
Since our family moved away from the Chicagoland area, a few years ago, we had yet to take her home. Once our reality was rocked, we wanted to be near our family. We desperately needed the hugs and love that would sustain us in the coming months, and keep us sane during that time. There is a certain feeling that came over us as we crossed into the city limits. It also reminded us how far we had come and that despite this latest challenge, we needed to move forward. There is no place like home. We immediately felt the love of our family and friends. We absorbed hugs from friends and relatives, some of whom were unaware of the incident. Though we are deliberate in maintaining a level of privacy that for our daughter, we wanted to share this to let other families know that they are not alone.
As the Founder of My Good Life, a resource newsletter for parents with special needs children. I am excited about providing access to resources and information for other parents with special needs children. We’re for the most adventurous parents in the world. When you are raising a special needs child your life is different.
This isn’t a regular life. It’s a good life.