Today has been...well a day. It's been a very emotional day for me today. It all started last night when I decided to open a book that I bought last week. It's called Notes Left Behind. It's about Elena, a little 6 year old girl, who died from a DIPG (Brylee's same tumor). It's her parents journal as they were traveling down the exact same road we are now. I got three pages in and immediately started sobbing! I don't know what I was thinking when I picked up that book. I guess I'm longing for someone who gets why I feel the way I do. I'm angry and bitter, sad and lonely, humbled and spiritual. But most of all I'm lost. I don't get it. I don't understand why my sweet little girl and family have to go through this awful trial. I like to think that I get it and I often say wise words about why this is happening. Something along the lines of she is here to teach people how to serve and care. Teach how to take each day a second at a time and actually live life to the fullest. But in all reality I don't understand. I feel like my heart is getting ripped out of my chest daily. I get so wrapped up in the pain that sometimes I get offended too easily by something someone said out of innocence. Or I get offended by something no one said at all! I know there are many people that have offered their shoulder and I've taken some up on it, but sometimes it doesn't help. I need someone that knows what it feels like. I need someone that knows what it is like to watch your own daughter go from bouncy, and chattery to almost nothing at all. Yes, radiation and chemo helped her symptoms like swallowing and being able to smile, but it also took away her innocence. She has no drive to be here on this Earth at all. If she's hungry I'll put food in front of her and, even though she can feed herself, she'll just stare at it. There is no drive to meet her own needs. She would literally starve to death staring at a plate of food. It's absolutely crushes my whole soul! Twice today she picked her lips till they were pouring blood because she was having anxiety about the nurses at the house. I thought coming back home would be good for her and make her come back to me. It completely failed. This book talks about how Elena hide notes everywhere for her family to find after she had left this world. The notes always had a heart on the front that said how much she loved them. Brylee won't even look at me when I tell her I love her. Does she know that I will always love her? Does she know she's dying? Does she know how much I hurt? Does she know I long for her even when she's sitting right next to me? Does she know?
Brylee Olson was diagnosed with a DIPG, an inoperable brain tumor (infiltrating brain stem glioma) on Wednesday, March 6, 2013. This is a blog for her and her fight to be in the 5% who survive 3-4 years. Or the rare chance of complete survival.