I can’t remember the last time I wasn’t measuring something about our lives and Hillary’s progress on this brain injury journey. Our first night was filled with them. “How much longer before we get to Western Baptist Hospital?” I asked Paul and Billy as we rushed to “get there in time”. I had been as controlled as I could possibly be then and on the phone with the ER nurse who kept calling me “Mom” as she empathetically encouraged us to “hurry …..but safely”. I knew she meant it was doubtful we would get our chance to say “Good bye”.
After arriving at the ER, our cousins Jesi and Jayla, (who is also a neuro nurse), told us Hillary was a 3 on the Glasgow Coma Scale. (I remember thinking, “Well that’s better than a 1!” (Though I now believe if you check all three levels for GSC and compile the cumulative total, nothing could “add up” any lower or any more severe than level 3.)
Within the next two hours, while on our frantic two hour drive to Nashville, I would ask Paul how long it would take Brittany to arrive at Vanderbilt’s ER. Brittany, who lives in Nashville, was taking the reins for all of us and representing our family circle by waiting for LifeFlight and her critical sister at the other end. I remember feeling so relieved that Brittany was there to “catch her”.
The next days, weeks and months would measure Hillary’s ability to come out of the coma—essentially determining her cognitive level— through the Rancho Los Amigos Coma Scale. One of my most vivid memories of measurement from those days was watching her team take a ball point pen to the bottom of our daughter’s foot so they could determine her “appropriate” reaction to pain. So many hours and days the measuring would leave us a little disheartened as she failed to react “appropriately” to what should have been so uncomfortable.
I remember asking for your intercessory prayers so Hillary might move into the next Rancho level, as she suffered from the various challenges presented by her current state. It would also be a cognitive/physical ability measurement that would determine where she would be admitted for rehab; ultimately guiding our way to Cardinal Hill. It would be those same measurements that would eventually lead her home on her 27th birthday—November 17th, 2007
And every kind of measurement continues to be an important part of Hillary’s recovery process as her therapists set and then upgrade her PT, OT benchmark performance tests. Perhaps it is the measurements for her long term and short term memory improvements that are the most exciting of all the litmus tests we review week by week and month after month. Frankly, I don’t see most of these tools for determining her progress fading out of the picture for any of us in the near future.
But there is one measurement I’ve been using for the last few months that I hope I can stop using; and I have to thank another brain injury survivor family for the relief I now feel about my decision.
When we arrived home from Cardinal Hill Rehab with Hillary, now almost two years ago, there was a book waiting on our doorstep. On the inside cover, the family who knew our path ahead much more than we would allow ourselves to see, had written a wonderful note inside encouraging us to read the book’s story of a woman’s recovery from TBI….and from her own perspective. I had tried several times to read the book, but unsuccessfully. Sometimes the words would just fly off the page; either due to fatigue or because I wasn’t ready to believe the road ahead. (I think the latter.)
But this week, I picked that book up again and began looking at my daughter’s journey with new perspective. I took a hard look at her pride, her heartbreak and her determination through the words of another woman. It was as if Hillary had written the book herself, as many of this woman’s resulting challenges were in perfect concert with our daughter’s and our family’s experience. So many of my questions were answered; and thanks to our friends’ loving gift, I have been able to talk with Hillary about things—her feelings and mine—like we haven’t done in two years.
I can’t imagine what she has been through. I can’t imagine what has been taken from her….but I am trying. And thanks to another woman’s journey, I am going to try my best not to measure Hillary’s progress by how much of her life is getting back to “normal” and who she was before her traumatic brain injury. It wasn’t fair to any of us….but most of all, it wasn’t fair to Hillary.
Hillary is never going to be exactly who she was before. I used to hear those words from someone else and it would cut me like a knife. I wanted my daughter back exactly as she used to be, although knowing that was unreasonable. Even if every single neuro pathway re-wires itself into perfection, Hillary would and could NEVER be the same based on her life experiences from the last two years. No one could! But that doesn’t mean she is going to be any less of a person—any less delightful, loving, beautiful, funny—and yes stubborn. (OK…some things ARE the same and escaped the “firewall of brain injury” a little faster than other personality traits.”)
She is still Hillary. But I am not going to insult her intelligence, or yours, by suggesting she, and we, aren’t grieving the loss of what life was like before her brain injury. We are and may grieve for pieces of that time forever! Yet that doesn’t mean life isn’t likely to get even sweeter in the future. It can—and coupled with our new changes of life and lessons of love from brain injury—I think it will. It’s just not going to be the same. And realizing the best part of where we are going as a family is ahead of us is exciting!
Starting now, I will do my best to measure everything about Hillary’s progress from the night I first began measuring things around brain injury. What is important is that Hillary’s progress from 7 PM, September 1, 2007—Labor Day Weekend—is phenomenal! It could only be God!
Her son recently talked to me about his Mommy’s progress and yes, was measuring a little bit himself. At the end of his long presentation he said, “She doesn’t get better every week…she get’s better every day!” Out of the mouths of babes…..
And here is another measurement of where we are on the journey—and still on the scenic route, (though incredibly bumpy from time to time):
For the last two years, our oldest grandson had asked us if we would make it possible for him to be the “Grim Reaper” for Halloween. As you might expect, it was JUST a little too close to home and we struggled to get out of that request. We won those two years—he didn’t.
This year he was victorious!
The Grim Reaper
Vance–Nothing scares this kid!