So often I have found myself get caught up in the little things, the annoying things that disrupt the normal flow, I guess, truth be told the flow that I THINK should be a certain way.  Life has not gone the way that any of us would have liked, many things have had to be let go of, cancelled, adapted and required loads of flexibility from the rigid Harneys.  Our lives work on a synchronized rhythm.  I a rhythm I created when they began to outnumber me.

This weekend has proven that when we get off our rhythm, the controlling nature that many of the Harneys’ posses is challenged.  We are stuck with the glaring reality that things are no longer going according to our well maneuvered plans to maintain structure and instead succumbing to utter chaos.

As I was thinking about my first born, knowing that this day was coming, accepting two days ago that it would be another thing that would be sacrificed while we faced Ezzy’s decline in health yet again, I felt sad.  I went down the train of empathy and then moved to sympathy.  I told God it wasn’t fair.  I wanted today to be about him.  I wanted today to be filled with our family’s tradition of numbered pancakes matching their new age, watching them all huddle around him and open the gifts they hand picked just for him, experiencing sighs of relief when he gave the ok to the clothes we picked out, now that he is so particular about them, I wanted to sing happy birthday to him as he blew his 11 candles, I wanted to hear the prayer that would come from his father’s heart and mouth, a prayer of blessing that he gives each growing Harney.

BUT…

Before long, I was met with such a firm voice, one that comes from a loving parent when they are trying to help their child reframe the current hard situation they are facing.  I was told from my Abba Father “11 yrs ago, when he drew his first breaths, I knew 11 yrs later on this day he would be facing this”.

You see, when he realized his sister didn’t come home from the ER that life was going to change. He quietly and in passing said “I am not having my party this weekend, am I?”.  It didn’t take a lot of explaining, he knew his sister was critical.  He ran after my car as we were pulling away to head to the ER, fighting tears and telling her he loved her, even though his friends were all standing nearby.

When he woke this morning, he had a cloud over his head.  I asked him, “can I make you your pancakes” (something daddy usually does).  His response came with tears in his eyes, “what’s the point, everyone isn’t here”.  I reminded him that he still had 4 women who would love to celebrate him and he finally allowed me to do the honors of helping him ring in year 11.

Shortly after we received word his sister’s NG tube fell out and that she would have to go through it again, a hard slam of his dish hit the counter, met with furry that overtook his little body that is housing such an old soul.  He let it known that he was about to go and have a talk with the hospital staff.  He was going to tell them his sister has had it, tears came down his face, he said “it’s not fair!”.

It was then that I realized in a whole new way what this is doing to his soul.

How it is shaping the very fabric of his character.

11 yrs ago when he drew his first breath, God knew 11 yrs later he would be facing this.

Thanks to the upcoming half marathon in May, Cayden and I are in training season, which is forcing us to run even when we don’t want to, because our emotional fatigue is now claiming our bodies.  Thanks to Ezzy’s hospitalizations and my travel for school/work, its even harder.  But today we went and pushed our bodies and attempted to free our hearts and minds of the different perspectives we are carrying as we navigate this world of being Ezzy’s support crew.

I held him closely, before our run and prayed with him.  Something I do every run we have.  I prayed the blessing over him that I knew he wouldn’t have over his birthday dinner, because his sister can’t eat and specifically asked that we didn’t bring food tonight during her visit.  I asked God to give him a vision of the things he wants him to do.  I asked God to speak clearly to him and tell him all the good things he sees in him.  I thanked him for the caretaker that he is to his sisters, mom, and nana.

While running and coming to a corner that is questionable to our safety, he squeezed words out in between the breaths that were working overtime while we pushed our selves through our pain.  “mom, I always pray for us when we turn that corner”.

I was caught off guard.

I took sometime to digest his words.  I let them sink in.  When a scary situation comes his way, he doesn’t run down the “what if trail”, like me, but instead he prays.

After my head caught up with my heart, I told him I was so thankful that he was covering us in prayer, I admitted to him that I am always so focused on watching for the cars that I don’t even think to pray.  I again, thanked him for covering us in prayer.

I have to believe that everything that he is facing and has faced is shaping him into a man of prayer.

He has had plenty of opportunities to be angry with God, angry that his life many times lives in the shadow of his sister, angry that MANY things have been taken from him due to CF, angry that his parents have been tapped out more times then I want to admit the last 6 months with the ebb and flow of Ezzy’s healthy.

Yet.

When faced with fear.

He prays.

Dear Cayden,

I know one day when you read these blogs you might be upset with me, for being too honest, for being too vulnerable.  I will never forget the day when you told me you googled your name at school that a ton of blog posts came up with pictures.  I truly hope that when you stumble upon these, that you will see how much we love you, how much you are the steady rhythm of my heart, that you have a space larger then you can fathom in my soul.  I am placing my trust in God over your story, over the call that God has given you to defend the weak, to fight for injustice, to cry for those who are hurt.  I hope those parts of your soul never change, I hope that God keeps using the brokenness of this world and makes you one of the most powerful threats to the kingdom of darkness because of your boldness to surrender to your King Jesus.

Thank you for loving me, thank you for waking every day and asking “mom, what do you need me to do?”.  Thank you for always looking for ways to serve me before I have a chance to ask for help.  Thank you for loving the babies and tucking them into bed on the night’s daddy can’t.  Thank you for giving up your bed each night Ezzy is away to comfort the heartbroken Kyre so she doesn’t have to sleep alone.  Thank you for trying to run the house and keep it in Mom’s OCD standard even when I am away and can’t appreciate it.  Thank you for finding ways to let Ezzy know that she is your priority, that nothing matters more then her, even if it costs you your street cred with the neighborhood boys or not making a big deal out of the tube hanging out of her nose, only to fight tears after seeing it.

William Cayden Harney, may God always be your source of strength, may He always prove himself faithful as you face hard things.  You were created for so much more, he is going to entrust you with more then you can even imagine, this I know.

You know the way.  God first and you will change the world.  And I get the best seat in the house as your story unfolds.

Happy birthday, my one and only son

Today makes day 9.  9 days being away from home.  9 days living in the hospital.  9 days of just her and I.

I left with a heavy heart.  Knowing I was leaving a fever ridden baby behind and another child recovering from the flu was the worst way to leave for an unexpected curve ball thrown our way.  We did what we had to do.  We didn’t wallow in the crap thrown our way, instead we accepted it and told ourselves “it is what it is”, a motto that we have found to be describe life with Cystic Fibrosis.

It is what it is.

We can’t change our family’s story.  We can’t heal our daughter’s fatal disease.  We can’t control when and how sickness will impact her little body.  Lord knows we would if we could.

I have logged many miles walking up and down the hallways.  I found out it is .8 miles, round trip from our room to the cafeteria.  One evening when we were given the okay to walk the hallways, we tested our limits and explored every nook and crany in this hospital until our time was up and had to return.

Have I been frustrated being here, yes.

Have I been sad being here, yes.

Have I felt alone in the battle being here, yes.

Have I felt abandoned by God being here, no.

It’s crazy to say that now, because when I first got here, I was struggling with this truly being part of his plan for Ezzy.  I took it personal.  I started to spat off all the things I have done to keep her out of the hospital, as if I was the only one responsible for her health.  Basically, removing God off of his throne and not accepting that he is the one that holds her in his hands.

One day, while we sat playing cards, she asked me a question in a hushed tone while she looked at the group of people standing in her room talking.  She said, “when you were in the hospital, did you have a bunch of people in your room like this?”.

It hit me then how crazy it must be to have a revolving door of adults in your room 24/7.  I was immediately amazed at how well she was handling it all.  On average, she sees over 20 different faces a day walk into her room.  I lost count of how many different people would come in and say “Ezzy is it ok if I take a listen to you?”.  At first she would engage with them, atleast make eye contact, but now she quietly obliges with a head nod and doesn’t even engage.

She woke this morning and didn’t even want to talk to me.  I asked her what was wrong.  After a while she said, “what are we going to do today?  Oh wait, nothing”.

Its those moments that I have wondered how this is shaping her.

If I am not careful, I will just look at the obvious or more loud reactions to our life here in the hospital and miss out on the quiet and life-giving moments that have happened.

I can’t recall the last time I just held my girl, like I do now each day.  We got to see a tiny little baby, with an NG tube up her nose outside our door.  The nurse practioner has heard Ezzy mention her siblings and how much she misses them so she brought the baby up to our door so we could look safely through the glass and melt over a sweet little baby.  Ezzy’s squeals brought joy to my heart.  I told her stories of when she was a little baby, living in the hospital, tube up her nose just like the one we saw today.

I can’t recall the last time I had hours devoted with just one single child, like I have recently, especially an older one who doesn’t need me as much or is in full time school.  We have spent every moment together for the last 9 days.  She has learned to read me and catches me when I go deep into my thoughts, more times then I want to admit.

She made me the most precious banner after we had spent the morning making her one. 

She calmly talked me off the ledge when my perfectionist soul was throwing a tantrum over the stupid crab origami we were making. 

She has asked me hard questions when team members would come and sit with us, (after they would walk out of the room) showing me she has my talent to be immersed in something and still be able to follow conversations happening around you.

Its been 9 days of little sleep, thanks to the demands of night shift.  She asked me this morning if I would grab her a coffee and informed her doctors that she wants to go home where she can actually get some sleep, ha!

This absolutely wasn’t part of my plan.  I didn’t want this to be part of her story.

But.

I will never be able to get back these 9 days where it was just her and I.

We have sang together.  We have cried together.  We have laughed together.  We have prayed together.

She may have woken up discouraged by yet another day here, but as the day went on, as I listened to the gentle nudge of the Holy Spirit and how I could help her reframe her day, I saw her find joy in the midst of the storm she is facing.  She mustered up the courage I have been in awe of and is being the warrior that I have always known her to be.

If this is what God wrote long ago, then I need to trust our author and realize that his stories always have a better ending then the ones that I would write.

Warrior on Ezzy may.  Warrior on.

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.