Corey’s had a challenging day. I can’t identify the reasoning behind her discomfort. Perhaps it’s just one of those days.
We started off with a good morning. Corey was up, bright, alert and wanted to try her new standing frame. She was giggling as she prepared to stand. She actually looked excited. I’ve added two new pictures to the gallery. The sign she’s holding says, “This is Awesome”. Once she was upright, she was patting the tray as if to say, ‘let’s get to work’. We can only allow her a few minutes in the stander primarily because she’s not used to the position and we need to build her stamina. But I can tell you she was very excited about her first 3 minutes!
As the afternoon progressed, Corey became more tired and more uncomfortable. She has been having a terrible time with her Burning Mouth Syndrome. At times she will call out in pain. She writes that it’s a shooting pain. It will resonate to her head but yet she does not complain of a headache. Unfortunately, there is nothing we can do to help relieve it other than her Magic Mouthwash and frozen Ice pops. She was also very nauseous and dizzy today as well. It was one of those tired; I don’t feel well kind of days!
I’ve found the best remedy for a day like today is to allow it to happen. Sleep, hang out and enjoy the down time. There were some great chick flicks on tonight, so we took full advantage of a relaxing evening together. At one point, Corey asked me to sit next to her in bed. She wrapped her arm around mine, placed her head on my shoulder and fell asleep through part the movie. (Having her asleep on my shoulder reminded me of when she was younger. I have never enjoyed a movie so much!)
It’s difficult to watch Corey’s discomfort. When she tells me “ow” as she points to where the pain is, all I can do is ask her, “what can I do for you”? Her reply comes from a hand sign for ‘nothing’. I tell her, “I wish I could take it away for you”…she pulls me in for a hug and pats my back to comfort me.
A friend of mine forwarded an article that was written by a current survivor of TBI. It was published this weekend in the New York Times. The author’s honesty of what it is like to build a new life after a TBI is worth sharing! Her closing remarks are what resonated to me;
We’re struggling to make sense of a world that seems brand-new — sometimes wonderful, often overwhelming — with all the courage we can muster.
Corey, I watch you struggle daily to put your world back together. You manage to smile more than you frown. Your courage is evident even when you’re overwhelmed. I also agree with the author that you are not a survivor…you are surviving and fighting for your life; not the one that you’re expected to settle for. Today was a tough day and that’s okay. Rest is just as important as the daily work you do. I’m so proud of you!
Happy dreams, xoxo