Living with our TBI survivor provides those around him with two options...to keep things real, or pretend it isnt happening. For me there is no middle ground. My dad and stepmom attended a church service in Atlanta for those who struggle with grief at the holidays. I think it is called a Blue Christmas service. My dad and I were discussing how during the holidays some people may feel an even greater battle when happiness feels like it is forced. If everyone around you seems to be having Hallmark Moments, where do you get to put your pain? I think we all know people who find the holidays a struggle. My dad and Miss Connie have attended this service since their return for Atlanta where they are free to grieve the loss of their children, Ralph and Jo. This year my nephew, Jesse was with them. Missing his mum...and yes, a little bit more over Christmas. (Many of our followers know that my half-sister, died a few years ago after due to birthing complications and prior to that my step-brother was murdered in a random drive by shooting). By the way, I hate those half and step labels, because they are no measure of love but I dont like to misrepresent when I post. My siblings are my siblings, and those words feels misplaced. I still get defensive about it, lol. Yesterday I was struggling too. I have been thinking Taylor has been seizure free for several weeks, and I have been oh my God this hurts so much I can hardly breath free for a few weeks. Grief comes in waves, and in reminders. Yesterday the flood came. I want to be clear about something, we are very grateful for Taylor, his life, his abilities and what he has. Our trip to Bryn Mawr brought back a flood of what could have been for him, and we know we are very fortunate. This kind of loss is complicated....and it will even make some people angry for what families feel. There are things that slip out in conversations that still feel like knives in my heart, because this kind of loss is uncommon and often misunderstood. Taylor is alive, but we lost so much of him...and so did he. I detest that truth more than anyone out there...but it is the truth. When people dont understand the sadness associated, it can create another unwanted layer of isolation. I had some errands to run after work and I was trying to keep it together. I had a million thoughts pinging through my head, but mainly I knew that New Years Eve would feel lonely for Taylor no matter what I tried to do. I knew that day/eve would remind him that he is twenty something and that he would want to be with friends, and not Keith and I. I understand that, and it does not offend me, it just hurts me for him. Throughout the night he said some really rough things, and then posted his heart on Facebook. There are times that Taylor wishes he had not survived. I know that can feel really hard for those who love him, pray for him, and support him...but it is where he is at and I love those who circle around him, embrace his struggle and love him through it. For someone with injuries like Taylor has, he actually does fairly well with filtering. But just like anyone else, when he hits a lonely wall, he wants to feel less lonely. Part of his sharing is how he copes. As Taylors mother I have witnessed far more rejection, isolation and even ignoring than I care to admit...but worse than that, Taylor has. It is a cruel fact of TBI for someone Taylors age...they are going to experience the loss of many relationships. More than anyone would care to count. This is not the Happy 2015 post I wanted to share...and I trust that Taylor will get through like he always does. He TRULY is determined and strong, but he is also sad. While running errands yesterday I avoided eye contact whenever I could (I had to get food and Taylors medications), but I was right on the edge. The tears were leaking out, and I had no control over them. As I rounded the corner in Weis, I ran into some old friends. Avery grew up playing baseball with their son, and we know each other well. They did not seem surprised at my sadness, and they embraced it and me right away. Their message to me was so much has changed, and that has to be so hard. You have a right to your feelings. A lot of times I feel like I cant share how rough I am feeling and yesterday my head kept telling me that I did not have a right to my grief. Taylor was alive, and no matter what, he was here...we did not lose him and to feel in anyway like we did would be disrespectful to those whose children are no longer here. For me one of the biggest challenges is that there are days when the brushstrokes cannot create something lovely. There are moments when making the best of things is simply living through them. And there are times when I feel like people resent our struggle, and grief because they cannot get in it (thankfully) and they want us to move on. And there are days when people resent what Taylors injury has done to him and their lives as well. So this stuff, this minutiae around TBI, it is complex...it has many layers...some are the joy that Taylor brings, and some are the sadness, some are the fight and drive inside of him, and some are the fact that he wants at times to give up, some is that he is especially loving, but he can cuttingly cruel, some are that he is here, but even the sweet old spark in his eye is gone...and yet, there at times is a new one.... For those of you who love a family with a TBI survivor in it, know this....they need you. They want to be less alone on this road. And they want for you to hold their hand, stand by their side and accept what you may not understand. If matters of the heart are complicated, matters of the brain are a million times more so. Either way we can let love win...but it is going to require grace, patience and the knowledge that feelings often dont fit into a box. I wish all of you the best in 2015, and more of the good stuff..passion, love, acceptance and joy. Part of our journey is accepting what cannot be changed and being our best in it, while being honest about it.
Posted on: Thu, 01 Jan 2015 13:14:32 +0000