Taylor and I were on a walk yesterday and I was flexing my arms in an attempt to show him how big (or small) my bicep muscles are. This reminded me of an interaction we might have had when he was younger, perhaps age ten or eleven.
He laughed as I exaggerated the movements of my arms while grunting, to entertain him. The exchange between us felt easy. We were a mother and son having an ordinary moment.
As our walk continued we passed some horses and ducks in a neighbor’s pasture. We stopped and talked to the horse, and again the moment brought me back in time. Taylor then suggested we walk together every night. I felt as if he was a little boy, wanting to connect with his mom without the need being too obvious.
As we took in the sunshine, the gentle colors bursting forth from the flowers, the green fields and the spring breeze, one word kept coming to mind …
Taylor is still with us. I am proud of him. I continue to hold a space of dreams for him and adore him. Yet within all of those emotions, there lies a longing for somebody I used to know.
Traumatic brain injury has caused our relationship to shift, and it has forced me to accept changes in Taylor — and to release parts of his former self.
In fairness, we’ve both changed. Some changes are admirable. We are stronger; we have an honest vulnerability that is amazing. We are resilient, and we are warriors to the millionth degree.
There are also changes that cause frustration. We deal with depression. We get angry more frequently. We experience ups and downs. Our joy can disappear faster than we’d like. And sometimes it can feel as if our emotions are too intense and hard to manage.
I say “we” because — while we are on different sides of the spectrum, as a caregiver and a survivor — we experience some similarities emotionally. We grieve the same thing, but our grief is unique to each of us.
The list of changes in both of us is extensive. I want to refrain from labeling the changes as being positive or negative. Brain injury has shifted the way both Taylor and I process life around us. It has also changed the way we view ourselves. At times both of us feel quite remarkable, knowing what we have gone through in a day. Then without warning, that feeling can come crashing down and suddenly we feel invisible. Desperate. Lonely.
For a long while, I bucked against our reality. I found myself caught between what I had once known and an uncertain future. The in-between caused marked turmoil. As much as I didn’t want to accept Taylor’s brain injury as part of our lives, it is. As much as I wish it didn’t affect Taylor and our family … it does. And as much as I try to manage and wish away the stress and sadness it offers, the hard parts remain. It feels more healing to accept where we are in a given moment, rather than fight against it.
I share the next thoughts with great difficulty. It makes me sad to acknowledge them. Brain injury plays an enormous role in our lives. My son not only has a brain injury, but he lives with brain injury. He survives. Some days he thrives. Other days he merely exists, with countless battles to fight. We live there with him. We not only see his joys and his sufferings, we feel them too.
The results of Taylor’s injury may change over time. But the injury itself is not going to resolve or disappear. There is (currently) not a cure or remedy to repair the damage Taylor suffered. The ramifications of what happened 2,387 days ago continue. As Taylor’s mother, I must accept what took place. It is not healthy for me to keep wishing it didn’t. I will forever hate the evening of November 22, 2012. I’ve tried a million times to rework that night, and the truth is I don’t possess that kind of power. What I do have the power to do is to accept what took place.
Acceptance does not equate giving up. They are two entirely different concepts. However, there are outcomes, which I must accept, and moments when I must put down the fighting sword, and work with what is in front of us, versus denying reality.
I miss Taylor every day. I struggle with that concept. There are times when I think, “What the hell, Nicole. Stop missing him! He is here.” Recently I was sharing with a close friend how my heart was aching for my other sons and the complicated loss of their big brother. She said, “You lost him too you know.” I explained away her reasoning, but I appreciated her compassion. One of the most monumental things I’ve had to accept is that I am allowed to feel my grief.
I’ve heard and truly listened to survivors who have said, “How do you think we feel? We miss ourselves and our lives, too.” Taylor has expressed this feeling. I want to be gracious towards myself and Taylor in knowing there is room for BOTH of our emotions; and as a family, there is enough room for ALL of our emotions. Without judgment, blame or accusatory statements, such as … “You don’t understand.”
Those living with brain injury, caregivers and survivors, are walking the same road, with millions of different paths. There is room for us to feel what we feel, without shame or harshness towards another or ourselves. And there is time and space for us to work through the multiple layers of ambiguous grief. Accepting what happened to Taylor has taken time and hard work. I know I will still wake up and be shocked at our reality. But for now, it feels as if acceptance is the way to have some sort of peace. And I value that.