Well a week and a bit has passed since little miss Ezzy has been going to school. I am completely amazed and bewildered at the peace that has engulfed my heart since Sept. 2nd. I received texts, fb messages, and precious notes letting me know that Ezzy was being covered in prayer. I could envision a care package labeled “fragile” “handle with care” “urgent” “priority” being delivered on God’s door step every few minutes. As some of you know God went out of his way and delivered a message to me from a complete stranger, informing me that Ezzy was going to school in a “God bubble”. As a friend told me, my heart must be busting to realize how much God loves me, loves Ezzy to work in yet another mysterious way.

After meeting with Ezzy’s school to go over her 504 plan the teacher pulled me aside and thanked me for the letter I sent and told me to pick one thing to do everyday that Ezzy is in school. She said to especially do the things I/we have held back on because of Ezzy. My teared up eyes met her teared up eyes, we hugged and I left that meeting with a new perspective.

I was able to go to parent teacher night recently with all the other parents. The teacher spent her time informing us on how our littles spend their hours away from home. I loved to see how the kids were learning how to follow a routine and saw Ezzy’s coat hook and cubby filled with things from home. I realized in that moment that Ezzy had made herself a little piece of home and was staking her claim on her new found freedom. As I was bouncing the fussy baby in my arms in the hallway and straining my ears to hear the teacher talk, I came across a self portrait that Ezzy drew of herself.

I just chuckle and smile, especially at those round feet and toes! Richard and I think that she looks like Stitch! I’m saving this picture because it made me realize how much Ezzy needs someone else to hold her hand as she walks through life, someone to open her eyes to new things, and someone else with a big heart that loves to teach little minds. I have a special place in my heart for her teachers, knowing that they are doing EVERYTHING they can to advocate and protect her.

Today was one of those days were we got to tackle something we never get to do because of CF. Kyre couldn’t contain her excitement when we told her this morning she was going to go to the pool. Indoor pools are dangerous for CFers because there is a bacteria that lives in warm damp environments that is super hard to treat and it causes lung damage. So we have avoided the pool, only allowing cayden to take swim lessons from time to time. I found a swimsuit recently on the sale rack and stashed it away for our special date with Kyre. I had to pry said suit out of Kyre’s cheeto hands to pack it up, she held on to it so tight because I think she was so afraid that something she has been hungering for would be taken away.

We got the two girls ready and Kyre hoped up and down, up and down, saying “me swimsuit dadda, me swimsuit momma!!!” ,”me pool!!!!!”. Her shrieking decimals bounced off the walls and all Richard and I could do was smile at each other.

Our time in the pool was spent watching Kyre zoom down the slide, play with a rubber ducky, and swim with help from us. Her smile was tattooed on her face. Sweet baby Ya’el was a little shocked when we first got in the pool, but soon found joy in the ability to kick her little legs. Daddy pointed out that those cheeks of hers helped her head stay afloat and we soon found a sweet smile across her face.

Kyre was instructed to not rub it in Ezzy’s face when we picked her up from school because we didn’t want to make Ezzy sad. Kyre zipped her mouth and planned on holding on to her secret. Hers and Cayden’s short lives have adapted to making accommodations for their sisters feelings, sometimes more then they should I guess. Well, little miss inquisitive noticed that Kyre’s hair was wet and asked why. Kyre spilled the beans and had a sad face right after, knowing she had done exactly what she was told not to do. Ezzy’s heart crumbled, her face said it all and she leaned over and asked Kyre if she could smell her hair. I’m sure because she knew it was the closest she would ever get to the pill. I wanted to cry in that moment. All the joy that poured out of the four of us at the pool vanished in less then 1 minute. I felt remorse for being so excited to try something new with the two youngest, I was reminded how ugly and unfair CF was in that moment. But then I realized something so critical for our family.

We have to start navigating through the can’ts and cans of CF as a family. We have to start having conversations with Ezzy when life isn’t fair. We can no longer hold back her younger siblings. They need to have new experiences, special moments, dates with us that don’t revolve around the can’ts of CF. We have to learn how to let the kids how to figure it out with each other and stop covering for them. They need to be able to talk about it with her and vice a versa.

So with a heavy heart I held my tongue, let Ezzy and Kyre figure out how to work out a difficult conversation. Ezzy leaned over, smelled her hair, and said “hey mom guess what I did in school today?”

That’s right my girl, YOU have been built for this, YOU have been knitted together to handle the impossible, YOU have a higher calling, and YOU love your siblings so much and have told us countless times you are thankful they don’t have CF.

Thank you to those of you who lovingly go to God each day for our Ezzy. Thank you to those who check on this momma to make sure that I am ok. Thank you to those who have shared testimonies of when and how you pray for her! My favorite is the fact that I KNOW God created a bubble machine just for Ezzy, how could he not? When a child with selfless faith goes to God, you had better believe he listens! Could you add something new to the list?

Ezzy is really gunky, she has a runny nose and after talking to the teacher today, there are other runny noses in her class. A simple cold can go from small to detrimental for Ezzy overnight and sometimes just a few hours. She was winded and very tired after the short walk to school. My mind ran to the fear, but was met by the promise God delivered by the stranger last week. She is in HIS bubble. She isn’t my child,really, she is God’s child, which means that every part of her life he is caring for her, helping her become the beautiful masterpiece he has envisioned for her life.

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.

love momma