As the mother of a twenty-five-year-old traumatic brain injury survivor, I find myself reflecting on the effects of the injury that changed our lives three years ago. In the beginning, medical staff frequently reminded us, “This isn’t a sprint, it’s a marathon.” The message being conveyed was that we needed to slow down because this thing was going to be with us for a while. The quote reminded our family to conserve our strength, energy, and abilities to stay the course with Taylor. At the time the words provided valuable and clear direction for us.
In reality, family life involving a traumatic brain injury is more than a marathon. TBI is a cross-life trek, which is here to stay. For us, it not only defined November 2012, but it has been the strongest presence in our daily lives since. It is certainly not a sprint, but the word marathon does not fully encompass the magnitude of our circumstances. Brain injury is something that whether we like it or not, we have to move through daily. It requires endurance to the highest degree and gives words like loyalty and perseverance new depth.
Medical truths were shared with us at the onset of Taylor’s accident. I am grateful that things were communicated in a way that was not overwhelming. It was like introducing an infant to food, slowly, with great thought and observance as to what could be handled. No one force fed us or gave us something that our emotional systems were not ready to process.
During the months that followed Taylor’s initial weeks in the ICU, while at an acute rehab facility, I learned more about what might possibly occur in the coming days. The medical staff used teaching tools to whisper about the things that were ahead, partially because they knew that a brain injury of this magnitude has a way of screaming to get attention. The whispers were the gentle approach that my husband, my other two sons (ages sixteen and nineteen at the time), and I needed. Mostly, these professionals stayed present with us moment to moment.
Around month four of recovery, we abruptly discovered that seizures would become part of our routine. The surprise attacks snuck up, much like the injury—unwelcomed, unannounced, and often unstoppable, with unpredictability and a forcefulness that I had not previously imagined. Once the seizures were part of the diagnosis, we learned all that we could about them.
As more time passed, we experienced first hand that Taylor’s lack of ability to filter his thoughts and words would have a profound impact on our home and our relationships. I did not understand in the beginning that as concerned, worried, and heartbroken as I was for Taylor, I would, in time, feel equally devastated for every member of our house. Taylor’s body and mind sustained the injury, but it has taken a harsh toll on those who love him most.
Brain injury happens to a family.
I was ill-equipped for how this particular grief would play out. I familiarized myself with ambiguous loss and tried to understand it within myself. One day, almost a year after Taylor’s injury, flooding hit me with a force that was undeniable. My heart ached so desperately that I did not know if I could survive. I felt incredibly hopeless, but I knew his success in recovery was tethered to my being centered and optimistic.
The second year following Taylor’s injury was the worst of my life, and as we enter year three, I am still surprised at the level of sadness that this carries. Grief and adjustments to what we thought would be, are all a part of the race we have been called to run. I also acknowledge that some of the feelings of devastation and shock have lifted. I like certainty and closure; in this case, both are difficult to come by. I have not given up hope, but I have learned that sometimes the acceptance of certain reality gives freedom for a new kind of optimism to surface.
People are genuinely happy to see Taylor doing remarkably well. He has made terrific strides, and we are proud of his recovery. But there are times when I ache to hear, “I miss him too.” Separating the old person from the new is not hard for me as Taylor’s mother, but the feeling that sometimes I am not allowed to grieve the person we lost is most challenging. This road is not frequently traveled, and as families of traumatic brain injury survivors, it helps to let others in and educate them about what this really means for us. Not sharing our truth can feel stifling.
It has become a process to accept, acknowledge, and own my feelings. Allowing myself the liberty and freedom to work through my emotions without apology is something I address often. There is a pressure to get through this, to be happy again, and to somehow find the pot of gold at the end of the rainbow, and quite frankly, some days it isn’t there. That is okay, we are all doing our best, in some of the very worst of circumstances, and we survive it with a mix of hope, truth, and acceptance of where we are now in this lifelong race.