Please be warned...this post is lacking some of the careful thought in regard to choice of words that I typically try to exhibit. The title is pretty accurate to me. At this point in my life the word "war" doesn't send me reeling to a civil reinactment or a time when regular people were fighting for their freedom and often losing their lives. NO! Instead I'm quickly thrown into my own battle every waking moment. A battle to be healthy, a battle to live, a battle to be positive, and even a battle to force my Joeli into existance because those who are no longer here are so easily forgotten.
Have you forgotten? I don't get that option. Period. I'm tired. I'm tired of hurting. I'm tired of feeling my heart break each time I look at my girls and she is missing. I'm tired of missing out on things because I physically hurt. I don't understand why my life has to be such a struggle, why I am required to fight so hard just for some kind of normal. When I say I fight for her people say they get it..do they? Do you????
I feel compelled to fight for your child when no one faught for mine. I'm a mama who knew full well the war she was in and shouted it to the top of my lungs and it was as if those around me, who could help her, were deaf! Maybe they only thought they knew the realness a parent goes through when they've "done all they can". How stupid! Unless they've held their own lifeless child and kissed their cold lips how in the hell can they know?! Part of me feels like I should apologize for putting these emotions into words because I know they're harsh but everything in me won't allow it. I'm not sorry and this is REAL!
I wanted my little girl before she was created and I want her now! I'm honored that her story has helped so many but for the life of me I often wonder why no one else's helped her?? I rack my brain to figure out what I did wrong and what I could've done differently and I come up with nothing but "why".....why, why, why couldn't I make a difference then? Why didn't people hear us then? Why did the world wait till her life was stolen from her and everyone who loved her before they decided to hear? I seldom let myself go here to this place...it's truly one to stay away from but it's been a long time coming.
Life vs. War...what if they became the same? They did for her, they did for me, what's your story? Cyclic Neutropenia for us was like being thrown into a war with no weapons. GCSF wasn't an option for Joeli. I often feel like it shouldn't be an option for me. How did physicians expect her to fight without equipping her?! How do I choose to equipp myself when she didn't get that option. It simply isn't fair. I know this world isn't fair and my knowledge of that comes directly from the fall of man that my Jesus talks about in His word but in the midst of this war I JUST WANT MY BABY!!!!
I want to hold her again, smell her, feel her, watch her grow! I don't want to release balloons on what should have been her birthday party. I should know what it's like to get ready for our last year of elementary school. I should already know what it's like to live with a 10 year old little girl and I DON'T! Being the big sister shouldn't fall solely on Brelan's shoulders and it does! She doesn't get to be Joeli's little sister....not for real. We all know she is and she knows she is but how is that ok?! It's not! Mileigh is a different story. She is now the only neutropenic child and she didn't have to be. She should have Joeli here with her to understand her hurt, to understand the pain of expanding bones trying to accomodate the new neutrophils, to hold her hand through lab work and hospital admissions....REALLY?!
I NEED her now. I need all of my girls right here in this oversized chair with me at the end of summer figuring what we can do today. Instead I have two little girls in this oversized chair asking "do you miss Joeli, mama"? They know this pain all too well. They know because this war is our life
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