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?
She knows Lara! Ive heard of stories where the child knows more than wr think they do. Its like they comprehend it on a completely different level. I'm so sorry you have to watch Brylee go through this. I couldn't imagine being at that stage and soon she might be. You know that I am struggling along with you. Trying to keep a grip on things when you don't even understand how you feel. I too get really offended by things that don't.even matter.but I think that its my subconscious channeling my pain. I feel like people are constantly watching me.to see how I'm going to react or trying to get in on the”attention” my family is getting because of this awful desease. So I just want you to know I feel your pain. Just don't give up the fight! NEGU!!
I truly believe with all my heart that sweet innocent souls know and see the most, we all try and make sense out of everything and stew over reasonings as to why but at the end of the day the love that you have for Brylee and she knows and feels it, is all that truly matters. My heart aches for you and your family. When we lost our baby I wanted every answer and made myself go what some consider "nuts" searching for reasons. Then I read a book called "Heaven is For Real" and finally found peace.
Lara, I am so sorry. I really am. It is such a horrible road. Hang in there momma. Your doing great and sweet Brylee is doing AMAZING.
My name is Cindy Hansen (echansen.blogspot.com). We lost our 4 yr old son Atticus to the same horrible DIPG 11 months ago. I tell you this not to make things worse (hopefully) but to reach out to you. To tell you that although every journey is different, we have been down that road and I would love to be a comforting friend, shoulder to cry on, idea bouncer, and/or offer any tips that worked for us and our cancer fighting hero.
It is an awful club to be in. It really is. BUT... there are some pretty incredible families our there that have been down the DIPG road also and are a huge support and comfort. I am more than happy to help in any way possible if it is something that you want!! It's all about you and your family and whats best for you, and your family. Seriously!!
We love you. We will keep sweet Brylee in our prayers, and I will check my email frequently in the chance you want to talk!
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.
She knows Lara! Ive heard of stories where the child knows more than wr think they do. Its like they comprehend it on a completely different level. I'm so sorry you have to watch Brylee go through this. I couldn't imagine being at that stage and soon she might be. You know that I am struggling along with you. Trying to keep a grip on things when you don't even understand how you feel. I too get really offended by things that don't.even matter.but I think that its my subconscious channeling my pain. I feel like people are constantly watching me.to see how I'm going to react or trying to get in on the”attention” my family is getting because of this awful desease. So I just want you to know I feel your pain. Just don't give up the fight! NEGU!!
ReplyDeleteI truly believe with all my heart that sweet innocent souls know and see the most, we all try and make sense out of everything and stew over reasonings as to why but at the end of the day the love that you have for Brylee and she knows and feels it, is all that truly matters. My heart aches for you and your family. When we lost our baby I wanted every answer and made myself go what some consider "nuts" searching for reasons. Then I read a book called "Heaven is For Real" and finally found peace.
ReplyDeleteLara, I am so sorry. I really am. It is such a horrible road. Hang in there momma. Your doing great and sweet Brylee is doing AMAZING.
ReplyDeleteMy name is Cindy Hansen (echansen.blogspot.com). We lost our 4 yr old son Atticus to the same horrible DIPG 11 months ago. I tell you this not to make things worse (hopefully) but to reach out to you. To tell you that although every journey is different, we have been down that road and I would love to be a comforting friend, shoulder to cry on, idea bouncer, and/or offer any tips that worked for us and our cancer fighting hero.
It is an awful club to be in. It really is. BUT... there are some pretty incredible families our there that have been down the DIPG road also and are a huge support and comfort. I am more than happy to help in any way possible if it is something that you want!! It's all about you and your family and whats best for you, and your family. Seriously!!
We love you. We will keep sweet Brylee in our prayers, and I will check my email frequently in the chance you want to talk!
Lots of love and BIG hugs from Texas,
Cindy Hansen & family.
cindy.hansen7@gmail.com
I ordered "Notes Left Behind" and received it in the mail yesterday, going to give it a whirl and try reading it...
ReplyDelete