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

To raising awareness! Because even Mama bears get caught off Gaurd!

I am caught off guard. Everything was happening so fast till I seen Adisyn and Alicia giggling in the garden. The sound takes me down and gives me a moment to catch my breath and stop. Reality hits in and it hits in hard. Suddenly a burst of pain enthrones my throat. My chest begins to tighten. The conversation with Adisyns Hematologist/Oncologist runs through quickly. I feel myself asking again are you sure? I am falling down so I repeat my thoughts as the Dr. Explained what's happening in Adisyns body. "I've been prepared for this. This is nothing new. I can do this. I can do this." The image of My sweet girl being prepped for her first surgery flashes. Then thoughts of the kids I know of that have what Ady has come into mind. Cancer. Bone marrow transplant. Even worse. I can't breath. Alicia is calling for Abraham and realize Ady has caught me staring in the window and comes flying to the window screaming at the top of her lungs "momma" "momma" arms wide open. With in minutes she's at my chest and finally my lungs fill with air. At first everything is fine. But the pain sets in much deeper. Suddenly a rush of heat fills in my lungs and nothing I can do stops it... But my eyes are now deep in fire too. Desperately calling for relief. Adisyn let's go so that I am staring directly at her face. She smiles and wrinkles her nose so that I laugh. Suddenly with out notice my body give in and my eyes are filled. I am so upset because I know for me this is not an option. I MUST stay strong for her. I try and remember that stupid mantra I was trying to play in my head that got me through the Dr. Apt and most the day. I am left empty. Nothing comes to mind. I feel my chest tighten more at the though of me losing it. I fight for a deep breath and manage to squeeze in just enough air to make the light headedness fade. Ady hops down and grabs my hand. Pulling me to her little car. Smiling saying "broom broom. Mamma." the sound of her voice melts me and I find a momentary relief. It sounds through my mind again. "you got this, you can do this, breath." So I breath and finally let a deep breath in. I don't know how long its been since I took a deep breath. Again I find myself in the conversation with Her dr. Severely low ANC. Elevated LDH. Platelets. White blood cell issues. Polymorphism. Liver function issues. Pancreas insufficiency. Shwachman-Diamond Syndrome. Severe Neutropenia... The ever more possibility of Cancer... Cancer? Some how hours pass, Abrahams tucked the girls into bed and Adisyn has found her way to my chest right above my heart and is sleeping soundly. It's been awhile for her. To sleep like this. With no waking up crying in pain. Then I am reminded. A conversation I had with a specialist. "Your daughter will also smile when she's experiencing a great deal of pain, pain that would probably cause you or I to drop to the floor. The thing that is important for you to realize. It's all she's known. It's her normal. Like a child born blind. They smile. They are happy kids. It's all they know. Could you or I do it now. No. If we had to, would we smile? No. We probably have a really hard time handling it." everything spins... The conversation ends in my mind because the thought of my baby in pain rips threw my veins and I am burning. The thought that she seems happy because it's all she's know sinks even further. Shes wrestling in her sleep. The time when her guard is down. She's starting to whimper. I stuff the ripping pain down as far as humanly possible and do the only thing I can think of to calm her down as she starts to nurse. (The thing thats kept her as well as shes been.) I don't hold back any more. I sing to her.