We really know how to put on a brave face.
Our therapist asked us Wednesday if we talk to each other about our feelings. The answer, no. We just don't have the energy. We get up, go to work, come home, eat dinner, play with Addie, get things ready and have a few minutes at the end of the day to zone out on t.v. We are exhausted. Grief is physically and emotionally exhausting. It takes a HUGE amount of effort to slap on a brave face during the day. I wonder who sees the truth?
I wonder how many people realize that we are still and will forever be in pieces. This hasn't gotten any easier...in fact....it's harder. I wonder who sees the red puffiness around my eyes in the morning from a night of crying. I wonder who can tell that I start EVERY day with tears on the drive in and they usually fall freely as I sit down at the desk in my classroom each morning. I wonder if my coworkers know how much I am hurting on the inside. How many of my students notice how often, during a math lesson, I will catch a glimpse of Travis' pictures on my bookshelf and lose my breath? Or how when I point to something I notice my "Travis" tattoo and pause. Rides in the car just about kill me. EVERY.SINGLE.SONG. reminds me of what I have lost. I cry big sloppy tears when I drive. I wonder who can see my interactions with Addie and how strained they are. She is such a wonderful baby and I can't fully embrace her because everything she does reminds me of Travis. I wonder if anyone can sense the guilt I feel about that.
I smile, I laugh, and I can do a nice job of acting "normal".....but I am broken. My spirit is broken.
I met a heart family last night that have a 6 week old son who is in the NICU waiting for his Norwood. I wanted to meet them to tell them that all this pain and the constant worry when Travis was here....it was all worth the 16 months we had with him. I think it would have been worth it even if I had only had 5 minutes with him. When they started their journey Travis was vivacious, happy and alive. He was a success story. I don't know what happened. I just honestly can't believe we are in this place now. One of the ones that didn't make it. They called me brave. I think they are. I mean they sat there and looked their biggest fear in the eyes. They are just beginning this journey and trying to cling onto hope and they were brave enough to come meet me knowing that our story doesn't have a happy ending. I wish so badly that it did but the truth is.....HLHS is a horrible syndrome. People just don't see that even those who are doing well have parents who suffer extreme anxiety, worry constantly, wonder just how long they have, panic at the first sign of a stuffy nose, stay up worrying about SATs, and live with a constant, painful fear of being in this place where we are at. Nobody wants to be here and sometimes people don't even want to acknowledge those of us that are.
Someone posted on facebook today "Life is Perfect". Our life right now? Not even close. It was....we held it in our hands for a few months....our perfect. Now, it is gone. And we have no choice but to slap on our brave face.