As Congenital Cyclics its nothing out of the norm to hit ZERO. We hit it every 2 weeks no matter the dose of neupogen. However, we don't always have infection. Do you ever just feel done? You don't have to be affected by chronic illness of any kind to get there. It's often just a place you hit. Well I've been there for some time now and I'm fighting with everything left in me to get away from it. After stabilizing her breathing and being admitted into a negative pressure reverse isolation room, I sat and watched every breath this beautiful angel took. They suggested I rest while she did...ARE YOU KIDDING ME RIGHT NOW?! Is that even possible after you've seen your little girl gasping for every breath and telling you "I'm dyin, mama"? Not for me. I laid wrapped around her counting every breath and watching her sweet chest rise and fall. It was almost rhythmic. It soothed me to watch but not to listen. It was ragged and struggled. You could hear the air flowing between her vocal chords and hear the sound as she struggled to speak.
I cannot begin to tell you what it feels like to have one ripped from your arms forever...did you hear me? FOREVER! Then to have another tell you they are dying. NO! I refuse! I will not make it through that again and I am NOT saying good bye again! I don't know His plan for me or for my family but I know He knows what I can handle and He knows I cannot make it through that again.
She slowly began to improve but not without a fight. Her marrow stayed at zero but the steroids and breathing treatments were helping her breathe. She hated those breathing treatments even though she desperately needed one. I don't recall which night but at one point a respiratory therapist came in and he was a big guy. She began to protest. She didn't want the mask on her head, near her face, or that "junk blowing in her nose". She could care less that the mask looked like a small pink dragon that blew smoke. She was not amused. That was a night straight from the pits of hell to be frank. Some of you may know this scenario all too well. Others, I hope you don't. Do you know what it feels like to hold your little one down by their chest with one hand and hold their head in place with the other?! While I did this, the respiratory therapist held her arms and legs using more than just his arm and we forced her to inhale the medication her lungs so desperately needed. The tears flowed and splattered on her chest as she looked at me with eyes begging for me to stop, begging for me to let her up, begging to just be well.
It's MY job to make sure she's well, to make sure she does what's required to be healthy. To some, this scenario may sound like just a brat but you have to understand. Mileigh will hold her tiny arm out for blood to be drawn, she will watch an IM injection be done full of steroids and never flinch, she will explain neutropenia to a health care professional better than they can but that night, she was done. This is where our age difference and the fact that I am Mama and she is mine mattered not! Two people, two neutropenics, two hearts who live with hurt and do not understand...at that moment she met me at the bottom and we were two DONE FOLKS! Differences aside, I knew right where my little girl was and I couldn't blame her one bit.
Do you know your directional options from the bottom? There's just one. UP! She shows me that all the time and this time was no different. She began to respond, she began to heal, her eyes began to shine again. I knew her Joeli met with her in her dreams. I knew that Joeli was there and I know that no matter what, even when we are done, we are loved. I am in awe of the people who have shown their care and concern for our family. I am overwhelmed. We love yall! More than you will ever know. Please take a moment and share our blog. Share our go fund me www.gofundme.com/teamjomi . We are blessed by you! SING LOUD!
