Some girls are just born with glitter in their veins


Today was an undercurrent emotional day for me.

Radiation went well. She wakes up in a terrible mood and doesn’t want to leave or get dressed. When we are there she barely acknowledges or looks up at the drs. But then after radiation is done she is her bright, bubbly slightly sarcastic self. Actually the nurse that got me to bring me to recovery with her said she is the best waker upper he has seen. She fully woke up before I got back there and they asked if she wanted mommy and she said yes she is with my baby sister.

But my emotion has been brewing all day beneath the surface. When all of this started, when she just had eye problems Tony kept saying our poor girl, why so much on her. And that sentiment progressed as the information about her diagnosis did.  Fairy said last night since she has known me, I have been fighting for something.  And its true.  Fighting to get pregnant. Fighting to adopt. Fighting to stay pregnant. Fighting through difficult pregnancies. And now fighting for the life of my daughter…and to make the best of whatever time we are gifted with her. It’s hard not to feel angry about it. It’s hard not to drown in guilt over it all and what have I have done to bring all of this onto my family or what I should have done differently. She is my daughter and I am home full time with her. How did I not notice? How did I not know something was wrong? How am I not protecting her from this god damned tumor. I know the responses are its not my fault I am a good person blah blah blah so please know I am not looking for that. Today I am just treading with my head barely above the darkness of guilt and questioning myself. Today this is my truth.

I think maybe some of this stems from all the fights I have had previously. I have always beaten any obstacle. I have always found a way. But cancer might just beat me. I feel like a failure just typing that. Like I am not supposed to feel that way. I am supposed to believe in finding a cure and a miracle. But I don’t know if I do. I am so desperately trying to come to terms with all of this. To grasp how my daughter who is laughing and walking and throwing attitude and learning everyday may not be here….

We had some great alone time today at one of my brothers’ houses. She ran to their toys and just played. How a 6 yr old girl should. By herself pretend play making all the toys talk and live a story. Then the tiredness hit her and she watched a show and snuggled on the couch with me. And she cried…longing for her brothers and to just go home. But she was able to pull herself out of it and we had a great time playing school together.

And for the first time I forgot for a moment. I didn’t look at her with that ache in my heart. We just played together, mother and daughter. So then when it hits me again it’s that much stronger of a hit. We went to meet the boys and my mom. I missed them so much and so did she. I know they are ok though and happy. So a piece of me I am ashamed to admit also doesn’t miss them. I just want her all to myself. I adore our boys. They are kindhearted and loving and they are all 3 the best of friends…But I find everyday I am getting closer and closer to JLK. Our bond is getting deeper and it makes me that much more scared to not have her. I walked around with the boys and felt a bit like a shell of a mom. Looking at me I was doing/being all the right things, you never would have known how empty I felt…But I longed to have Jennifer with us. I laughed with them and played and loved them. But there was a hollowness within the time that I really can’t explain. I don’t resent the boys (something I will admit I was scared of). But in those minutes without her with me I realized how it will be. I will take care of them, I will go on autopilot with them.  I just pray it won’t be forever.

I am obviously baring my soul here. And this explains why I have shut off from most people. I am raw and I can’t do this journal (which I need to do) if I am exposed to others. I am sorry if I am hurting people by pulling in. But in order to spill this out I need to build a wall in a different way around me…around us to survive. Interesting writing the word “survive” its an example of how everything is different. It feels wrong to use that word. Like now when my cell phone is dead I choke on those words and say its out of charge…And I know other people will be the same around me….unsure what to say or how to be. Second guessing what they said and just nervous.

I don’t even know the purpose of tonights journal. I have shared nothing of the beauty that is JLK. The great moment witnessing her and Jonathan see each other and run together and hug…The joy in my husbands eyes as they shared jokes and fries together over dinner…But I think in some ways the moments from today are too personal to share just yet.

Today I am selfish and I don’t want to share her…..