113 days Ezzy has been in school. I have gotten tons of calls, emails and texts. I have received word from the school when walking pneumonia hit the class next door. When a parent decided to bring a child in who had just been puking that morning…
Ezzy May is still standing, clean healthy lungs, and all with amazement by those who help advocate and prepped to see a very sick kid this semester of school, especially her parents. I find out from teachers, school staff and friends’ parents that she has a big brother who watches over her and makes sure she is safe too. Her brother, who she shares a room with got a lung infection over thanksgiving break. We readied ourselves, fearful of what could lie ahead for our family in the busy holiday season.
The hospitalization in May was quite frankly a slap in the face. It was a curve ball that left a bruise and concussion. It has altered our thinking. We approach things differently now. Now that we know when she gets sick, really sick, its sudden, like 24 hrs. It means 14+ days in a hospital, unable to leave, go to the cafeteria, see other people, it is a hole. It means going under to get a PICC line, it means hours and hours of therapy. It means the family is separated and left single parenting in equally difficult environments.
A lasting impact has been the psychological health of our little fighter. She has always been strong, determined, and so tough. But when she came home, an innocence of life had been taken away at the age of 5. Don’t get me wrong, she never has had a life view of unicorns that fly over rainbows and princesses that grow up marrying princes. Fighting a disease that sets you apart doesn’t allow that magical world. Ezzy came back guarded, jaded, with a chip on her shoulder. She has held me at arms length at times and quickly cut her emotions off to the rest of the family when she is unable to mentally and physically accept CF. Her battle became ever real that she is alone in the fight, she is the only one being asked to soldier up.
Those days have ebbed and flow, it can be weeks of calm seas, and then all of a sudden batten down the hatches. She is so practical, her life fits neatly in the lines, very little color and she doesn’t know anything else. Richard recently told me that I need to find a way to help her through that, that her coping resembles her mother’s way of bottling things up and putting them on a shelf. Her emotions are very sensitive and have found that one way she expresses her feelings without talking is drawing them out. I just stumbled on his picture she drew at her Nana’s house
What needs to happen for both of us, is we need to spend more time, resetting those bad painful memories with new ones. Wrap them up in the promises of God’s pursuing love for us. I am super determined to have the kids memorize a scripture each day of the week. Knowing that Ezzy’s photographic memory will soak them up. I am praying for discernment for which ones to give them, ones that will be her sword of truth when the world tries and fill her with lies. My advent study had me read Psalm 34:18 “the Lord is close to the broken hearted; He rescues those who spirits are crushed ” and this is one that both her and I need.
We look at her pictures of her birth every year around this time. Joy is woven in those pictures as we fight tears and adult emotions telling her the stories behind the pictures, trying to keep her away from them even though she has had to experience them in her life.
My advent bible study asked me one day “have you ever been witness of something profound from God? A miracle or a clearly divine affirmation of His goodness?”
Well, yes, her name is Ezrah May. I know most parents will call their children a miracle. But she really is. I remember looking out the dark windows in the NICU around midnight, talking with the surgeon, looking at the little beds filled with tiny humans, and hearing him tell us to prepare for a year of recovery. Richard and I never held one another closer then when we laid in bed away from our day old baby who was going to go under the knife and dance too closely to the other-side of life.
A van was provided for us to drive, friends flew in from a Christmas vacation to be at our side, beds at Ronald Mcdonald’s house were provided, dinners given by charity organizations eaten, faith believing hospital staff found themselves standing across from us sharing and realizing in that moment their steps were ordained by our abba father. Love offerings made. Family of friends I hadn’t seen since my childhood came to hold her to give us a break and provided my first taste of homemade chexmix. Intensive 7 hour surgery turned into a quick fix through a 3 hr surgery. A little family walked out the doors of Children’s Hospital leaving her medical team in complete amazement.
This has been Ezzy’s story though. It has absolutely been tainted, shaped and defined by hard times that required more strength then we thought was humanly possible. Then the lyrics of one of my favorite songs becomes true “like a hero that takes the stage when we’re on the edge of our seats saying it’s too late, well let me introduce to you grace grace Gods grace”. But that is how God works. Mary the mother of Jesus said “for nothing is impossible with God” (Luke 1:37) in response to the scariest thing that could happen to a young woman in that day . This has been proven time and time again in Ezzys story. Mary’s heart is one that I pray Ezzy will have, complete faith in the unknown, because her hero already won.
The days are run by the routines our busy family has adopted. It can be too fast pace at times if you ask me. But I also truly believe that all the places we have our family in our blessed and ordained by God. Good luck trying to get a hold of us at a convenient time, but we will typically respond within a few days! Living with the role of a CF support crew, is something that seems so innate at times. Her siblings know just when to step in and help her when she is struggling with the therapies or foods she can’t have or sick people she can’t be around. We don’t have to ask, they just do it. I still get caught off guard the days she tells me she is ready to go to Heaven. Nothing readies you for those statements. But she is tired, she has days when the fight is too big for a 6 yr old to fight.
So we are entering a new phase of her disease, how to protect her mental and emotional health seem to be our biggest contenders, praise Jesus, really. We will take this season of divine protection and health, we will gladly take as many seasons our Sovereign Lord will give her. Leading her to Gods amazing grace is something I am blessed to do because that I can wrap my head around. The physical fight is one that is too much for me, I can’t bear seeing her subjected to something most adults couldn’t fight holding their heads high.
Ezzy may is 6 yrs old today. She thinks her brother is the coolest person she knows and loves to follow him and his friends around at school. You typically will find a ball cap on her head, knee holes in every flippin pair of pants because she doesn’t hold back, chips all in. She knows some worship songs better then me and will give me her critique after services. Ya’el is the best secret weapon when she is in a bad mood. Kyre will ALWAYS go and get her anything she needs when doing her countless therapies, Ezzy knows she can count on her. Nana is her safe place to snuggle into when she just needs to feel like a little kid. She knows her daddy can only be so tough with her and has found his Achilles heel. Me, she comes to when she needs to say something hard, something too adult to feel at her age, but she does because she knows that I love her and won’t brush it aside. She dreams of being the sugar plum fairy still, loved being a toy bunny under the nutcracker tree, cant wait for that one day her parents might forget and let her stay the night at a friends, and is beyond excited for indoor soccer to start next month. Ask her to draw you something and you will not believe what appears on the paper!
Happy birthday miracle baby, praying that God fills this new year full of memories to replace the ones that have caused walls to be built, for our abba father to keep showing us that “God when he pleases, can make the worst of places (or pain for us) to serve the best of purposes” as my advent study states. Baby girl, may your love for writing scripture never end, your voice continue to be raised for our King Jesus, and your feet be firmly planted as you walk the journey that God has trusted you with. Fight on warrior, pray incessantly, and may God give you moments to just be a normal 6 yr old girl this year!