The Mighty Logo

The Far Reaches of Traumatic Brain Injury and Grief

The most helpful emails in health
Browse our free newsletters

While my thoughts should have been carefree during our summer vacation at our favorite North Carolina beach, each day as I took in the vastness of the ocean, I was reminded of the far reaches of traumatic brain injury (TBI) and grief.

Our carefree days came to an end on Aug. 13, 2012, when our sons — Aaron and Steven — were involved in a fatal car accident; an accident that took Aaron away from us and left Steven with a severe TBI. Upon receiving the horrific news of the fatal accident, we had no idea at the time how double trauma would impact the world around us. Not only would we forever grieve the earthly separation from Aaron, but we would also be faced with navigating the foreign soil of TBI and the many layers entangled within this life-changing, invisible disease.

We learned very quickly that instead of fearing words such as “TBI,” “epilepsy,” “PTSD,” and “complicated grief” (just to scratch the surface), we had to become educated advocates. When speaking of “far reaches,” there’s not enough blog space to cover all the territory touched by our journey. It’s not just about us; it’s about our family, friends, employers and community. At some level, they also felt our gut-wrenching blow. They rallied around us, allowing us to draw strength from their hopefulness, which we needed during our darkest of days when we felt anything but hopeful.

Once the initial shock started wearing off, we desperately wanted and needed to piece those first minutes, hours and days back together. Seven years later, we still find ourselves trying to fill in gaps of time where dismal fog set in, leaving us with amnesia. We were truly operating on auto-pilot, doing what needed to be done to be there for Steven and somehow managing to plan Aaron’s life celebration, hoping and praying that we honored our firstborn son in the beautiful way that he so deserved.

“Far reaches” also means letting go of pride, the same pride that in the past would have caused us to say no to help. We’re beyond thankful for every individual, healthcare provider and organization that was there to say, “Yes, we will help!” Many remain in our lives today, cheering us on!

Some of the unpleasant “far reaches” include helping Steven navigate the chaos of Social Security, insurance denials, the never-ending hospital bills, not to mention encounters with people that don’t understand that it’s OK to ask about Steven’s disabilities instead of avoiding or reacting as if TBI is contagious! Those are a few examples of the uglies you don’t want your 29-year-old son subjected to, ever. Being a Mama Bear that has been by her son’s side as he fought his way back to life, it’s natural to want to protect Steven from anything painful. But, oh, how well I have learned…that’s just not possible. So each time I witness Steven’s patience and grace as he handles heavy burdens at his young age, my ears hear the loud, melodious message of hope…Steven’s got this!

I never imagined facing a crisis of this magnitude, one that has changed me physically, emotionally and spiritually. Trauma is two-sided. While I don’t ignore the painful side (as I endure the side effects of trauma each day), I prefer to focus on the positives. I love more deeply. I embrace hope like never before. I hug tighter. I don’t rush, which helps me appreciate the here and now. I hurt for those that hurt. I count every blessing. And I’m not ashamed of my tears.

As parents, it’s only natural to think about your child’s future. We find ourselves in “what if” conversation about Aaron on a regular basis. Would Aaron be married? Would we be grandparents? Our conversations are different regarding Steven. Our hearts hurt knowing Steven has physical and emotional pain that he deals with each day, without complaint. Due to Steven’s TBI, he had no idea until weeks following the accident that his brother, his best friend, didn’t survive. Steven didn’t get to be a part of Aaron’s life celebration. Whether that’s a blessing or a curse, it’s still a part of Steven’s reality. Our reality. Those are the kind of “far reaches” of TBI and grief that feel like a vise-grip around my heart.

Professionals say there are seven stages of grief. I agree with the written seven. But trust me, there are so many more, especially regarding complicated grief. Until I became a mother that heard the words, “Your son didn’t survive,” I thought all grief was complicated, but the most complicated of all is truly child loss.

On my most challenging days, I purposely remember the far reaches of Aaron’s love, his passion for the great outdoors, his smile and compassion for everyone. Those treasures, coupled with Steven’s sheer determination to continue honoring his promise to Aaron to never give up, are the memories and moments — past and present — that keep me showing up to be the wife that Carlan needs, to be the mother that keeps Aaron’s beautiful memory alive, to be Steven’s faithful cheerleader and to be there for our family, friends and community, like they are always there for us.

 

A version of this story originally appeared on brainline.org.

Photo credit: m-gucci/Getty Images

Originally published: December 4, 2019
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home