Caregivers, Witnesses, Cheerleaders, Coaches: Standing beside our loved ones with TBI
I am the Significant Other (S.O.), and mother, to my daughter Talbot who was hit by a car while crossing the street in front of her university over three years ago. She suffers from severe Traumatic Brain Injury as a result. She initially spent over 6 months in the hospital recovering from her injuries which were almost exclusively to her brain. She was attending a university in Northern California and roughly 6 hours after I learned of the accident, I left our home in CT and boarded a flight from New York’s JFK Airport for San Jose. She had already had one surgery to remove the sub-dural hematoma on the left side of her brain which included a craniectomy to relieve the swelling just hours after arriving at the hospital. A little over 24 hours after I arrived, they operated on the right side of the brain for similar bleeding issues, and another craniectomy was performed. Injuries to both sides of the brain, occur in very small percentages in the overall spectrum of head trauma. They are among the most severe types of brain injury.
What I didn’t know then about brain injury and being a primary care giver, I know a whole lot more about now. For me, there was a stance I took from the get go that I was going to fight for her. I think that came not so much from me, but from her. It wasn’t that she could communicate that to me, in fact it has taken over 3 years in her recovery for her to convey any emotions at all. Rather it was a fight I took on for her, because of her, instead of her, without her. When the neurosurgeon approached me a few hours after I arrived, trying to explain how grave her condition was, I knew he was trying to warn me, to tell me it was bad, really bad. I said the first thing that came into my head, you don’t know Talbot.
That early stance has been my pillar during this 3+ year rehab journey and I daresay essential to me as her S.O. – significant other, primary caregiver, mother, and coach. Early on someone said to me they didn’t want to give me false hope. I immediately corrected them. There is no false hope, I countered, only HOPE.
If HOPE could be a power energy drink, I would be the spokesperson and chief salesperson for the product launch. Without it, I would be lost, bereft and rudderless. As I walk alongside my daughter’s journey which included re-learning to breathe on her own, swallow, cough, chew, sit, stand, walk and, as of late, ski, ride horses and complete the NYC Marathon this past year, I am the historical scribe but also not so silent, cheerleader and slinger of hope messages. Even when she was undergoing multiple surgeries, I would sing ‘fight songs’in her ear as they wheeled her into the OR.
What I was in no way prepared for, (and boy that list is long), is the extent of the commitment. I don’t mean like, overtime required, or wish I could take a break, but I mean that none of that is an option. I am not begrudging the commitment, not at all. That’s not it. I wasn’t mentally prepared for it. I kept saying this is my first rodeo and I would learn as I go. And that couldn’t be more true. I am learning along the way to be her coach, her S.O., and a mother again to my now adult daughter, now 24, over 3 and a half years after her tragic accident. What I know now, and have to swallow whole, is that I have to learn what she is learning in her rehab —about the extent of her injuries, the deficits she has suffered, the strategies she needs to use to overcome them and the acceptance that will hopefully come (soon) after she mourns her previous life and reframes a new one. She has been at NYU/Rusk Brain Injury Day Treatment program in NYC since last March, and they have warmly and brilliantly teased out miraculous results making some of the aforementioned successes possible. Her journey has been jagged, long and strident. Where she is now is thousands of miles away from January 21, 2011. I stand alongside her in awe and wonder as she continues to blaze this trail to recovery.