Thank you so much for sharing this beautiful piece Sarah... I read it and felt every word. Despite the fact that my boys have somewhat different challenges, all the feelings and things I too wish I knew and am learning/have learnt are very much the same. Family and friends please follow the link and read this story for a very real and powerful insight into the roller coaster that is our lives. Or you can just read the one I was compelled to write below. -------------------- I found myself awake in the middle of the night recently. My eyes were flooded with uncontrollable tears as I lay there in the silence considering Christmas - which this year we are spending with some of our truly beautiful and amazing family. Yet instead of the excitement they were all feeling and sharing, I could only feel overwhelmed in that moment lying there in the darkness, quietly sobbing and furiously wiping at my eyes with a head full of negative self-talk - Why did I feel this way? I should stop being so silly! Life isnt fair! etc. It took me a little while to realise that what I was being overwhelmed by was grief. You see unlike my amazing family who were all gushing with ideas and overflowing with excitement, completely unaware, I KNOW that Christmas is a very difficult time for me. Because Christmas is a very powerful and sobering reminder of how lucky both Dominic and I are to still be here and how dramatically our lives have changed since that Boxing Day almost 7 years ago, when we both came very close to a tragic end. This thought made me cry even harder, thrusting my face into the covers in an effort to stifle the audible sobs and fight the seemingly never ending flow of tears that were heating my face in the darkness. I felt my heart break all over again. But there was also a fainter voice in my mind, whispering to me beneath all the difficult memories. The soothing voice of reason telling me that it was ok to not enjoy all the fuss and fanfare that comes with the Christmas season. That it is ok to not feel the fuss is necessary because feeling grateful to be alive despite all the ongoing challenges really IS enough. Its ok to feel that anything more than the simplicity of this, the simplicity I crave in an effort to not be reminded, IS a little over the top. At least for me it is. But then came the anger, the jealousy, the pain and with that all the sadness. How I wish this time of year didnt fill me with dread. How I wish I too could get into the Christmas spirit and that doing so didnt pain every fibre of my being and leave me feeling so exhausted. Exhausted and overwhelmed from having to pretend and put on a brave face for the sake of others. How I wish Christmas didnt overwhelm me AND Dominic and that it didnt leave us both so exhausted that celebrating his birthday on the very next day, Boxing Day, didnt hurt us both. Because although its for very different reasons, celebrating it feels more like a chore. How I wish I could move on. How I wondered if I ever would, or if Christmas would always feel like I was suffering from PTSD? I lay there in the dark wishing away all the challenges. Momentarily dismissing and ignoring all the positives. All our many strengths. I laid there and grieved as hard as I could in the darkness. I lay there remembering every surgery, every procedure, every missed milestone, every moment of fear, pain, hurt and isolation. I let only the memories of all the sadness I had felt over the past 8 years, as a result of becoming a mother, completely wash over me. And in that moment I let it ALL consume me at once. Then came the guilt. Guilt for not being stronger. Guilt for not paying attention to the strengths and the positives and for CHOOSING to completely ignore them in that moment. Guilt for the silent hurt I felt simply because those around me, those I love, felt excitement. Guilt that hey unknowingly planned Christmas around me with all my sadness and dread. Guilt for wishing they wouldnt, despite their right to do so. Guilt because no matter how hard I try, I could never match their enthusiasm and celebrate Christmas in the same way or for the same reasons. Guilt for letting myself be overwhelmed by it all. Guilt for not being able to share what I was feeling, even after all these years had passed. Guilt for lying their in the darkness and sobbing silently. Guilt for the guilt. Guilt and shame. It has taken me a few days now to pull myself out of the depths of despair and to finally come up for air. To regain my peace, where grief is that part of me that is silent. Although grief is always with me. Sometimes I can feel it creeping up on me and I can take better care of myself to reduce the aftershock effects. Sometimes it sneaks up on me and takes me time to work out why my grief is still able to take me by surprise like that. But my grief is my friend too. Because my grief reminds me to savour every moment. To celebrate every milestone and achievement. To break down the barriers. It makes me capable of reflecting on how very far we have come. This is why I dont think I will ever stop grieving and allowing myself the space and time to feel it. To wallow temporarily and let it all spill out in the darkness like that. It is my grief and its accompanying darkness that helps the light to radiate so brightly into my life. Most of the time the light and love glows so brightly that I allow it to envelope and blind me. I bask in its warmth and wrap it around myself and my family for protection from the darkness. Darkness constantly tries to seep into every interaction, memory and experience. But the light and love protects me from the sideways glances, the disapproving stares, the poorly thought out comments and the general lack of understanding, acceptance and awareness the world has to offer for those who are different. And when my blanket of protection becomes thin and the light starts to fade, I simply start the grieving process all over again.
Posted on: Tue, 04 Nov 2014 01:10:21 +0000
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