I just rocked and sang your baby sis to sleep after the full on muttany you and Kyre conspired to do in the room next to her. I held Ya’el close, sang a song while she nestled into my shoulder. I had a flashback of sitting in Giraffe room 3005. It’s the room directly across from the nurses station, the second room on the right after entering the secured doors that only parents or caregivers with the bright orange lanyards have access to. Many a nights I held you, Ezzy May, in my arms, wrapped in a pink hospital blanket with a pink crocheted hat snuggly on your little head. Little did I know that hat which made one of the residents say you looked like a pilot would be the only article of clothing you could wear during your weeks in the hospital. Thanks to the wad of wires that stemmed from all over your body, the little tiny outfits I had packed to bring you home from the hospital in ketchikan weren’t even an option.
Am I in denial about the big day your little heart has been dreaming of…yeah, but denial comes in many different shades. I was frustrated that our time has so quickly ended, how it seems like just yesterday I cried quiet tears in the early morning hours while the monitors beeped, pleading for God to let me see you go to school one day. God put that memory, that picture of a broken hearted momma at her wits end on the big screen for me to see, there was no running from that memory. Then I heard a still gentle voice say “Sarah, do you realize I heard you?”
I wonder if I held you enough, told you that you can do ANYTHING your little heart desires. I wonder if I built you up with enough courage and bravery to stand up for yourself. Will you move away when you notice a classmate sniffle or worse cough? Will you remind your teacher that you need enzymes that one time a classmate’s parent brings in an unexpected snack? Will you be able to communicate “what” hurts when you don’t feel good?
Dr. Redding, aka Dr. Death as the pulmonology nurses call him, told us there would be one day that we would wake as your parents and CF wouldn’t be the first thing on our minds. With a bitter heart I disregarded those words and laughed at his premonition of us. How could that be? How could I ever wake up and not think about the two letters that have become part of our waking and sleeping moments?
Well, there is another side to what he said that angered me, he told us, better yet promised us that you would get sick, VERY sick, it was going to happen NO MATTER what we did to protect you.
Tomorrow is the day, in 11 hrs and 40 minutes you will be walking through the doors to your new life away from me. I have seen you light up and tell everyone you meet that you are going to school. You love to tell people that Lexi’s momma got you a Frozen back-pack. You have laid out your clothes for the last week and insisted on the bright pink tights to wear.
You also let daddy know that the mud caked black boots with rhinestones on them HAVE to go with the said outfit and have requested them to be cleaned. Those boots remind me of this summer, the tug and pull you and I had as I learned to let you play with the neighborhood kids away from my bubble I put you in day after day.
You have made sure everything is in order. You have rationalized it all, leaving me realizing that I am the one unable to accept what tomorrow means.
Sweet girl, tomorrow you are going with a hedge of protection, a God bubble as Dorica prayed for. We have passed out prayer cards and are sending more in the mail tomorrow. It was decided that daddy will be the one to drop you off, how out of the two of us, he is the stronger one, not by much, but the one you are less likely to pick up tangled emotions on. You and me, we have been on this journey, this challenging road together for 4 yrs, 9 months, and 6 days. I have caught you lost in your own world recently when the “talk” of school starts within our family or out in social settings. I wonder what is going through your head, your daddy and I have realized that you are all to aware of what is said and many times you comprehend adult conversations. You are older then your age in so many ways, thanks to CF.
My prayer for you Ezzy girl is that you go, not feeling alone, cut off from everything that has become your norm, but instead know that you have some big freaking guardian angels around you. That there is a peace encompassing your soul as you learn to live and grow away from your family, just like every other child eventually does. Tomorrow you are experiencing a right of passage that every child gets, aside from CF you will wake up tomorrow and get ready like every other “normal” child does. Go bodly my child, go with that smile that lights up your face and don’t lose that determination God has placed in you, the one that has created you to defy the odds, the prognosis specialists so easily give. Love your classmates unconditionally, amuse your teachers with your matter of fact statements, and better yet, let your light shine, tell people about the God you have known and had in your spirit since you were 3, the God you told me gave you “a map so that you could find him”, the God who gently and lovingly knit you together in my womb. Ezzy girl, tomorrow I pray I will rise with a joyful heart, exampled by yours, focused on the fact that you ARE fearfully and wonderfully made. Amen.