Ever thought in the midst of a personal storm, “that’s it, I can’t take anymore”

Ever questioned your ability to be able to recover as you watch all the pieces fall to the ground?

This last month has been challenging to say the least.  We spent countless night going to bed and would fight all through the night if we were making the right call for our girl, pleading for the God of Heaven’s armies to come and rescue her.  Pain, emotional, mental, physical were felt by Ezzy and her caregivers.  We all for lack of a better way to describe it have been holding our breaths waiting for God to breath life into her lungs and restore her to health.

We have spent the last 4 days learning to accept our new normal.  Richard at home, balancing life with kids and work, me in Seattle with Ezzy balancing hospital life with a sick kid that needs the best care possible.  I have been overwhelmed with the love and support that we have been given in this hard time for our family.  A meal plan was swiftly developed to feed my army at home, childcare has been offered by a loving couple that has been patiently waiting for the stubborn Harneys to finally receive help from them after years of offering. 

Care packages sent in the mail to my girl.  Starbucks gift cards that have been used up and helped a worn out momma talk and walk like a functioning human.  But more then anything, countless prayers going to our Abba Father.

Saturday night Ezzy and I were talking about the next day and what it may look like.  She is just like me, needs a plan, needs to navigate the day to make sure she can wade through the unknown as much as possible.  After hearing what our day might be like, she quickly said, “man I haven’t been in church since forever”.  She quickly disregarded her words and stuffed them away, accepting that it was yet another thing that was taken away from her since getting the flu Feb 8.

The Lord was very clear to me.  He was very quick to remind me that he equipped me to lead others in worship.  It has been him to equip me to study his word and prepare it for others to digest.  He was faithful to remind me that we are the church, its not a building or temple, but it’s all of God’s children.  So we woke up and I told her, “we are going to church today sister”.  She met with me confused eyes searching my smile and waited for my response.  We spent the morning singing her songs of choice and we studied his word together.  When I asked why she thought the story was picked to be in the Bible, she told me “because he wants us to trust Him”.

It was timely for us to have church, just her and I, in a small little room, tucked away on Forest level 3.  Our morning had been taken away from us when we received word from her team that we should be prepared for a 14 day admit.  When they walked out of the room, she melted into my arms and cried, telling me “I just want to go home” and to be honest, whether it was right or wrong, I cried with her.  But after a morning of worship and studying his word, my girl was smiling and finding joy where she could find it.  Even if it meant getting slaughtered by her mom in phase 10 or facetiming with her friends and laughing about things normal 9 yr old girls do.

The day we found out we were leaving; my husband took some time off and let me go for a run.  As I was talking with the Lord, waiting for his answer, expecting it to come quickly, I found myself frustrated feeling so unheard.   I kept pleading, letting it all out.  It wasn’t until I reach the end of my 6 mile run, like 30 secs before I was crossing my end point that I finally heard his answer.  He very gently and firmly at the same time, if that makes sense, told me “Sarah, I am allowing you to be broken, so that I can be the one to put you back together”.

“So that I can be the one to put you back together”…

For far too long I have been the one fighting to put the pieces back together.

I have been letting those words sink in.  Letting them find residence in my heart and mind that far too often give up space to worry and doubt and give just slivers to thinking of all the times God HAS been for me and HAS been for Ezrah.  I realized yesterday that I have been trying to hold onto 2 different trains of thought which is impossible for my brain to then determine what is true and better yet find strength to keeping walking forward.

Today was another day of curve balls.  As many of you know her PICC line was cancelled.  Frustrating as it may be, ever since realizing I had the power to decide what I was going to dwell on yesterday, I found myself saying “its all in God’s timing, there must be a reason why it’s not supposed to happen today”.

I took a quick walk today while she had a team member sitting with her, I needed some coffee and out of our cell.  It was then I saw a couple walking.  As I was approaching them, I got a better look at them, eyes heavy, shoulders weighed down with a battle I didn’t know of yet or could see.  With a quick movement, I saw wrapped in the mom’s arms was a little bald girl with a NG tube down her nose.  My heart sunk.  Within a second I heard the Lord say “Sarah, I do know your limits”.

All around me, I walk the hallways with other parents walking journeys I don’t know, yet in some small way unite us.  I see them, they see me.  We nod, sometimes we make eye contact in desperation to find someone else who is in it thick like us, sometimes we walk eyes down consumed with the battle our babies are fighting.  But we all have the same orange lanyard identifying us to be part of a club we never wanted to be a part of.

I have been shown many times, that Ezzy’s story as hard as it is.  It could be worse, so much worse.  God knows what brokenness we can handle.  It’s crazy to even say that.

Tonight, my warrior had another curve ball thrown at her.  She has IV antibiotics 4x a day.  Tonight, as she was getting her 3x dose she started to complain that it was hurting.  Prompt action by her nurse who paged the IV team and stopped treatment led them to the discovery that her IV had slipped out of the vein and the antibiotic was leaking into her tissue.

I held her sweaty hands, told her to look at me.  Coached her to breathe in through her nose out through her mouth as the tears fell and her body shook as they placed a new IV in her tiny hand.  It was surreal.  Fighting to be present in the moment with her yet lost in the reality of her strength.

Tonight, she got to play uno with her brother who found out she had a hard night and planned to be the solution.  I got to witness her laugh and shake off the stress of the day and play a card game with her brother even if they are separated by 100 miles between them.

Her lung function is down, not to be surprised since has been fighting the effects of the flu for a month, but we are hopeful that she is where she needs to be to heal and get back to the health she had before. It was eye opening to watch her “struggle” as she pushed all the air out of her lungs, something she has never done before. But our team keeps telling us that all the hard work we have done to keep her healthy has put her high above the normal CF kids that come in with lung exacerbations. They keep assuring us that she is going to get back to what we have fought to give her.

Tomorrow is a new day.  She is scheduled to go under for a second attempt of a PICC line.  She doesn’t want one, but after tonight’s experience and learning that IV’s only last a few days, she doesn’t want to go through what she did again.  So what is she doing?

Rising up.  Finding strength in God.  Finding joy in her family that will always come running when she is struggling.  Not allowing adversity to destroy her.

I am pretty sure that it’s through her story that God is going to put the pieces of my heart, life and broken faith back together.

Piece by piece.