It has been a long time. Too long. And it's not that I have a ton of time, because I don't; it's the therapeutic and hopefulness aspects that I miss.
When Madeleine was first diagnosed, it was before our Facebook group of AT/RT parents, before her diagnosis actually, when I was researching the many "rare" brain tumors and I stumbled across a blog (I will not mention their name). As a parent looking for hope, I felt my heart literally being tortured; being pressed through a grater and ripped to shreds as I read about this sweet blue-eyed boy and his father's immense sorrow in losing him. I pressed on, because I thought there has to be some sunlight in this very dark place I was reading. Nope... there may have been one or two small rays of light, but for the most part it was just ANGUISH. Debilitating heartbreak. I pulled myself away but clearly, have never forgotten this man's account of loss.
I made a decision. Although I too feel how this father felt, and there are times that I want or need to let something out, I need to focus on the HOPE. For me personally, if I spend too much time in the hurt, it doesn't benefit me or the living children I have that need me. There are too many obstacles in this life that command one's attention in the present to live in the hurtful, debilitating past. I see it this way: I have kept the best of Madeleine with me. I wear her memory daily and I speak to her daily; my daughter talks to her and about her daily; her smile is a focal point each and every day. I have chosen to love her and let that love warm my skin like the sunshine that she is on a sunny day.
From this sunny day in Los Angeles, I have decided to write again. I may change the name of the blog, but M will always be a HUGE part of who I am and the identity of our family. She is still very much a part of each of us, of our daily life, and who we are all learning to become as individuals. So in Madeleine's honor, we will press on.
Madeleine was born October 2, 2011. Our dear sweet girl was diagnosed at 2 months old and in 15 short months joined the heavens on January 9, 2013 after 2 relapse incidents fighting for her life with a life-threatening Atypical Teratoid Rhabdoid Tumor, or AT/RT of the brain and spine. She is greatly missed and her spirit lives on in all the lives she profoundly changed. This is the journey of her courage and resilience, and that of our little family.