We can do this.

2:45 AM. I am torn from sleep. My heart is pounding trying to determine if I am out of my nightmare and into reality. Adisyn is close to my chest. I let in a deep sigh of relief. I tell myself what I always do when I wake up from nightmares of the NICU turning blue in my arms. "Adisyn is fine. She is here in my arms safe. She already beat that. She's a tough girl. That battle is over." But it's just then where it knocks me breathless and pain becomes yet harder. She has another battle. The toughest one yet. I know my statistics. I know what she's up against. I feel tears threatening to burst. But I hold them hostage not willing to give in.
3:15AM. Adisyn moves restless. Her quiet cry stirs my heart. I look at her. She's beautiful in every way. Everything we've been through flashes through my mind. Which only causes more pain. She's just been through so much. I have a moment of jealousy. To babies and mothers. To families who never have to go through this. To parents who take their life's and that of their kids for granted. For them not knowing what it's like to have to fight for your babies life. To literally watch your baby fight for her life... Time and time again. I am suddenly mad. At myself. Because I REFUSE to do that! Adisyn grabs at me calling my name. I start to sing to her. When it hits me. We needJesus MORE. This week I've thought twice on everything I believe in. Everything I stand for.... But that seems so ridiculous now. I know if she...If I can make it through this. We need Him. There is no alternate route. No second plan. We NEED Jesus MORE.The baby moves which only makes me realize I've been singing worship songs. I take her in the living room. Wrap her in my arms. I cry out to God. Half singing at what all I have. Half prayer. Then going between the two. I didn't know I had this left in me. Bu I am determined to find more. Because its God who made Adisyn possible when Drs. Said no. It's been God! Time and time again. Broken voice. Broken heart. I give it to God. Adisyn is in His hands! I do the only thing I can. I sing out to God. I know that it's in these times if I can just find it. If I can just find that place. If I can just find that moment. If I can just find that secret place! I NEED to meet with Him. More then a prayer feeling alone. I demand. I won't leave this spot till He is here. Till I know he's got my girl. Till I know we can get through this. So I sing. It hits me hard. I am knocked down. My guard has fallen as I know. This is it!! There is no other explanation. I am there!! Relief is sweet! I cry out. With out hiding my heart in any way. I cry out "I am scared."I don't even hate to admit to Him. I can't do this with out Him... I need comfort. I NEED to know we can get through this. I NEED this pain to ease. I can't go on any more. I NEED him. I am exhausted. Everything I have, all that I am carrying. He takes. I have nothing else. I am empty. But then he fills me. You are brave. Your stronger then you think. You CAN do this with me. I'll give you all the comfort you need. You CAN keep going. Adisyn needs you. I chose you for a reason. I love you. Your not in this alone. I believe in you.
6:00 AM. I can do this! I take a deep breath. It's not painful any more. I know I'll have to do this over and over... But it's ok. I know we can. I am ready. Time to get everyone ready. It's going to be a long. Hard day. There's no turning back. We're ready for answers. She's ready to start healing. But we're not alone. We have the God who threw the stars across the sky leading our way. It's not that it will be easy. I know it won't. But I'll always have God, Ady is in safe hands.
Sorry for the rocky writing. This isn't really me to put my heart out there. Admitting this. But people should know. We're raising awareness. Even if its the most awkward thing for me to post. This is what families with Neutropenic and SDS kids go through. This is what the diagnosing process is like. This is what the pain is. Adisyn goes in this morning for her first bone marrow aspiration. I know it won't be her last. This is how it will be for me most mornings. People should know. My hope is that people won't have to go through any of this to know how precious and costly their child's life is. Hold your babies extra close today!!
Love,
Jess