She is a mess, she literally has to be peeled off the floor, her hair is matted with tears, her eyes longing to tell a story that would be the bridge of miscommunication taking place, but yet there she is in her room, screaming at decibels that make you feel like the piece of sanity you reserve in your back pocket was just pick pocketed from you…

The battle of the wills is in full swing in our home. So much so that Richard fully walks in the door at 4 pm and knows that he will be meet with an expression on my face that says, “welcome home!…your turn!”

I will hear the door open and then a gentle voice as the door is closed behind him. How does he do it? Maybe its because he is only around them for 3-4 hours each day, not ALL day like me. Maybe its because her emotional instability genetically comes from him. Maybe its because he fully grasps her life with CF and in return musters up the strength to completely get down to her level and peel her off the floor and hold her so tight and just long enough for her to tell him “i don’t know how to stop”.

This is our life right now. Tantrums, explosive ones that rattle you and can fully take your fun family day and chuck it out the window leaving shattered glass to pick up and cut your finders on.

We sat down last night and tried to figure out what is going on with her. As the tears and frustration finally soaked my shirt, I realized that I have been asking so much from her right now. I am aware, yes thanks to my mom, husband and the rare brave friends, that I tend to have a “suck it up and move on” way of dealing with things. Its a coping mechansim, it is the way I have dealt with stressors in my life since the time I can remember…thanks to some genetic gifts my mom gave me.

I have taken her burden and in a twisted way made it mine, analyzed it, and come up with a logical way to deal with it. Leaving her to come up against a mom that isn’t always grace giving when her 4 yr old self can’t comprehend why she has to do therapy again since it “takes FOR-EVER” or why mom is making her eat another calorie packed snack when all she wants is a bag of chips. I have made her life full of awareness of the things she CAN’T do because of CF and not focused on the things we can still do, limited, but still there.

Richard and I have realized she feels alone, different, and set apart. We wonder if she feels punished? She lets us know when she is frustrated with her to do list that centers on CF. We have failed her, even with the best intentions, we have allowed fear to dictate how we approach CF.

Fear, that ugly beast has been the one steering the boat.

Fear finds it’s way into my heart, mind, and soul. It doesn’t need to break down walls, it doesn’t need to look for shaky foundations, it knows just how and where it will find a door willingly open to it.

I found myself, lying in bed, crying, getting out the things that have been wrecking with my life. I dried my eyes, after my uncomfortable episode of emotions and went and hugged her, kissed her forhead, kissed the small of her neck, and told her I loved her, just to again be reminded as I licked the salt off my lips, that found their way on there from her body expelling it before it can do what its suppose to do, that she is different. She has been asked to fight a fight that isn’t fair and many times by her very own mom.

I found my breath taken away yesterday, I fought the nagging my husband gave me when asking what was eating at me. I fought saying the words out loud. In just a few jumbled words, my husband found out that the grief I had was because of remorse and guilt, flooding the walls of my heart because of the death of a little girl over the weekend who lost her battle to CF. Just 6 yrs old. Screw you CF!!! To see that she left behind a massive void in her two sisters, a brother, and faith believing parents’ lives, the very makeup of our family, destroyed me. Her parents called on their friends, family, and anyone pulled to their daughter’s story, to pray as she battled the many different ways CF plagues a person’s life.

Her battle began, lingered, victories came, and they praised God.

Her health declined in a blink and they waited for victories with no hope, but they praised God.

Her life ended without being able to say goodbye, and they praised God.

So this friday, March 7, as her family places her body in the ground they do it with the knowledge that their child is being held in our maker’s arms. They do it knowing that the difficult road she walked for the last 6 yrs is over and God is saying “well done”. They have asked people to wear purple on friday. In remembrance of their child and all those fighting CF. Some are going to wear purple with hearts embittered with anger, some are going to wear purple with fear dancing around them as they look at their own CF family member, and then some like the Harney family will wear CF because of the hope we are fighting to hold, the faith that is tested with each wave of CF and the promise we have that the story God has written for Ezzy is perfect.

As i drape the dark purple shirt over my head, I will begin to fervently start calling on God to make Ezzy’s story EPIC, life-giving, and so long that it would need to be a book series. As I drape the shirt over my heart, I will ask God to teach me to let it all go, to stop telling her to suck it up, since I’m sucking it up, but instead say, “I know this is hard baby, how can I help you?” As I drape it over the little life growing inside me, I will pray that God is faithful in giving her another sibling to stand beside her as she fights to be a survivor and not a victim.

If you feel it pressing on your heart to join us friday, let me know! You can send a FB pic, text me (9078210204), email me (sarahmayharney@gmail.com) or stop by if you are healthy. She loves it when we wear our “Ezzy shirts”, she smiles when we tell her its ALL for her. I want her to know she isn’t alone, I want her to know that what is being asked of her is hard, but that there are people who love her and standing with her.