That work is not over. It probably won’t be over for many years. I still panic over unresolved medical bills and disability payments. I’m still behind on returning important phone calls and e-mails. Life continues to throw us terrible disability related annoyances that eat up money and time (my most valuable resource these days). It’s not over, but it’s certainly a lot better than it was a year ago. And I know it’s a lot easier than the hurdles other families with disabilities face.
There are so many moments from the past fifteen months that, looking back, I don’t know how we survived. Among the treasures I uncovered on Friday was a notepad I used to write to TC during my visits to the rehab hospital. At that point, verbal language was a complete mystery to TC, so as I talked to him, I’d write what I was saying, either on a laptop or in a notepad. Rereading this little spiral bound book was gutting.
You’re not weird, honey. Your brain just doesn’t understand words the same way it used to.
They found the people who did this. It was a group of teenagers. They’re in jail now.
Don’t be embarrassed, but people have been donating money to us. They want to help.
I cringe, remembering the reality of our lives last November, in the days before TC was finally discharged from the hospital. Is it possible those memories are more awful in retrospect than they were in the present moment? Last week I received an e-mail from a high school student whose family suffered a terrible TBI related loss. She was writing a paper for school and wanted to know more about our experience. Do you remember TC as he was before? she asked. I told her the truth: Yes. But I choose not to think about it. For the most part, I choose not to look back at all. I want to remember, but I really can’t afford to. There’s no way to change the past. We can only go forward.
Humans are built to survive. I’ve learned this firsthand, of course, but I’ve also learned it through the incredible stories people have shared with me over the past year. Insurmountable losses, devastating setbacks, daily heartbreaks. I look at other caregivers with complete awe. Some seem to do it so much more graciously than I do. I recognize gratitude and I preach it often, but I still lose sight of how much we have been given in this life. I continue to want more and to lament what is gone. Meanwhile, TC is still here. And given the severity of his injury, he is so much healthier than he has any right to be. He gets frustrated and so do I. Like a lot of people, we want it all and we want it now. Our sense of what we deserve continues to be occasionally rooted in the flawed logic of selfishness. But I am smart enough now to recognize that what is here today may certainly be gone tomorrow. And a quiet evening of reflecting on the surviving artifacts of last year reminds me that we are still growing, still improving, even if we can’t see it in our hurried day-to-day existence.
This week I’m grateful for survival. And I’m grateful to all the survivors out there who have taught me the value and beauty of a life in progress.