Leadership skills, it’s what I tell myself multiple times during the day when I find myself standing up to the 4 foot giant of a leader that is embodied in her tiny little body that forces it’s way into my lap most mornings. She shoves my arms up to make room,while I try to sip the last of my hot tea.

Asking for your opinion is not something that you will find her do.  She states things, clear as day.  Her statements are affirmative, no wavering.  She has come to a conclusion and is certain of her beliefs.  Don’t try to sway her otherwise.  She will not back down.

It’s not coming from a seed of superiority that some might think when they hear such confidence coming from such a tiny little soul.  Quite frankly it is because she has weighed the options, she has taken into account what could be and she has determined what she believes to be true.  She doesn’t decide things on a whim.  There is so much thought put into what she decides to speak on.  I will catch her in a packed room, most of the time here in our house. 7 people + ALL the neighbor kids that have found they are always welcome fill the place up. There she will be, quietly folded in the kitchen chair, dark black eyes surveying the conversations around her, watching how other conduct themselves.  She is quiet, her eyes move from person to person, you can see the wheels are turning at a rapid pace.  

You might miss it if you don’t know her.  You might think that she is just quietly sitting, unaffected by the room of people living their lives, but she isn’t, she has already made up in her mind what you need or how she might have said or done something differently.

She loves, she loves so well.  Like a minimum of 3 kisses at bed time, 1 for each cheek and 1 on the forehead.  Every tight squeeze around the neck is counted outloud.  Having a bad day?Her little arms will hold you tighter and they will squeeze you until you feel like you are going to pass out.  Sometimes her independence can make you think she doesn’t need you.  Sometimes you feel as though she is putting up with you, but its when you walk out of a room, far enough away that gentle conversations can’t be had, you will find her on your heels. Wondering why you left her bubble.  She gets life from other people’s energy.

They way she cares for Veil makes us want to keep her like this forever.  She is so patient, always trying to teach Veil how to be a big kid.  She helps Veil go back to bed when they get up WAY to early on the weekends.  She will fix Veil’s shoes when they are on the wrong feet, only after watching Veil put them on wrong and waiting for Veil to realize she needs her help.  She will always push her “super high” on the swing, even when Veil has had more turns then her.  She will make sure that when a snack or treat is being dished out, that Veil will not be left out.

In just the last few months there has been a shift in her.  Her eyes have been set on the fact that she is going to kindergarten this fall, how she will be in school all day like her siblings.  No more pickups after lunch by daddy and quite afternoons while Veil naps.  She has asked her family to help her count down the days until she turns 5.

She has dreams, she already knows that she is going to grow up and get married and move away one day.  Something that her siblings grappled with when they were older than her.  It’s a fact she has accepted in a way to either help herself cope or maybe help her momma cope. She recently informed me, “when I am a mom, I am going to live in Hawaii, so that you will come and visit me and take care of my kids”.

Oh Boo, you had me at when “I become a mom”…Hawaii would just be a bonus

Ya’el Ariel Ruth, you are 5 years old today.

I have not ever taken you for granted.  The little life lost, before I ever had a chance to hold them, paved a way for you to be cherished beyond all measure.   I wanted you, even though you were such a shock for us.  You came into the world, wide awake, ready to take on the world.  You slept so peacefully on daddy’s chest for weeks, making sure that he would never ever be able to deny his need for you.  You nursed like a champion and I wondered if you were every going to wean.  Veil took care of that for us.  You have always had a glimmer in your eyes, even as a baby, I knew that if I saw that look to be aware of what you would be doing in the coming minutes.  Even now, I treasure the times something happens or a family member is being obnoxious, because I look for you.  I have learned that what I am thinking is no longer carried by me and only me, I know that I can look you in the eyes and we both read each others’ souls and find comfort in knowing we aren’t the only ones who think or see things the way we do.

I hope that you always pull me into the room where the music is blasting and say “come on mom, just dance!”.  I hope that you curl up in my lap when I am fighting my anxiety about the day ahead and encourage me to just breath as you pull my arms tight around you. I hope that you always look for the ones that need help and instead of doing all the work for them, you show them how to help themselves.  You are not an enabler; you are a teacher.

Ya’el Ariel Ruth, I pray God in his goodness continues to remind me that you are so strong because He made you to rise above, to not be afraid of your voice when the world so often tries to quiet women, esp. strong women, I pray that you will choose humility in the times your truth might not be the truth, that you always remember there are always 3 sides to a story: yours, theirs, and the truth.  I pray that God will give you abundance when it comes to loving others, that you will use the gift of discernment and choose to be His hands and feet.  I pray that you will always love big, that you will always love loud, and that you will always love God more then anything this world has to offer.

Happy birthday Boo

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.

It’s been 18 days since Ezzy was diagnosed with the flu.  I had someone say after running into us (we took to her on an evening errand so she could remember what fresh air felt like that wasn’t tied to a doctor appt), they said “oh, she looks better!”  I cringed, ezzy immediately turned to me and gave me the look of “you have no clue” and she walked away to go and find the safety of her dad. I have often wondered what it would be like if she had a disease that was visible…

Ezzy’s care plan the last 18 days:

45 hrs on her vest machine and nebulizer (doing her vest 4x a day – time does not include the amount of time needed to persuade her to do them)

5 days of tamiflu

4 days of bactrium (antibiotic)

600 enzymes (to digest her food)

72 pills of orakambi (life saving CF drug)

36 vials of hypteronic saline solution (nebulized med)

18 vials of pulmazyme (nebulized med)

11 days of high dose augmentin (antibiotic)

3 doctor appts

1 chest xray

3 throat cultures (which usually bring tears because of discomfort and built up anxiety)

1 nasal swab

1 pulmonary function test

2 appts with counselor to help her process this road bump

5 consults via phone with her CF team

11 days of no school

2 missed soccer practices

3 missed soccer games

2 missed bible clubs

3 missed church services

Handful (lost count) of mental breakdowns over the injustice of having CF

 

Today we had another follow up consult with her team via the phone. Which by the way is so incredibly hard on the caregivers.  We are tasked with the sole responsibility to assess appropriately and communicate clearly what is going on with Ezzy. The constant worry “am I missing something?” “shoot I forgot to say …before I hung up?” “what if I don’t see the whole picture?”, runs at rapid speed on a loop track in my mind.

I was anticipating other news.  We were told last week if she wasnt better to be prepared for an admit to the hospital.  So what did I do? I cancelled the much anticipated solo trip I have been looking forward to for months to visit a dear friend and planted by butt down so that I could continue to assess her.  Richard tried to encourage me to go, that they could manage it. But after pointing out that it has been on me to care for her around the clock, it would be hard to have him make the judgement call.  He works fulltime, away from the kids for 9 hrs. I live the whole primary caretaker role day in and out, even when there isn’t a sick kid (and he is one of the most hands on dads I know, there is just so much that goes into caring for her).  And by the way, I am so incredibly thankful for my husband’s job that provides me this opportunity to be home, because we both said recently “it would be impossible for me to work outside the home, fulltime, because of the curve balls CF throws”.

Our family’s lives literally stopped and immediately went into crisis prevention mode the last 18 days.  Nonessential activities were cut, family members picking up the slack around the house or watching the naughty 2 yr old became the norm.  We all found the weak areas that our personal strengths could manage and we tackled them. There was constant encouragement from her cheerleaders to do her vest when they saw the defeat rise in me (knowing I was having these battles on my own while they were at school or work).  I was encouraged many times to just go sit in my room by myself and breathe.

 

You want to know what was amazing to me.  You would think that as one person’s daily life became the sole priority of a family day after day, you would have seen jealousy, resentment or frustration…

Yet I watched the siblings come home from school and get her therapies going, I heard the usually obnoxious brother invite her to play minecraft with him, I witnessed countless games of phase 10 played with Kyre and her gracefully handle being slaughtered each round, even though she is the most competitive on of us all.  I saw the babies snuggle up to ezzy as she has lived a better portion of her time on the couch doing treatments and just resting from her body fighting the infections. No tears were shed about feeling neglected, everyone has been so focused on getting her healthy.

A friend recently said “wow, that is just amazing, how all of those extra demands being placed on your family and you still can see that they feel loved and secure, while Ezzy is getting all the attention”.

I needed that realization.  I needed someone to snap their fingers.  I needed to see that God was/is carrying our family even if in the darkest moments of the battlefield of the mind, I can’t grip that truth.

Her team today said that because her lung function test came back good and her culture showed no new bugs growing in her lungs, that she can go to school this week.  ½ days only. They said the risk of being exposed to other stuff is not enough to keep her back and continue to impact her quality of life. She has had it being home, she has had it coughing and told us she is “so tired of coughing all the time”.  They are starting her on a steroid to see if it can help address this wet cough that won’t go away. We are still in the unknown. I have to call her team on thursday to let them know if we have seen any changes, the possibility of a hospital admit is looming over our heads, which is a whole other giant for our family to battle.

I do truly believe that she has been carried by many and brought straight to God as others plead and intercede to God our Father.  To those of you who have sent me encouraging words, provided dinner for our family, told me they are praying, texted asking updates on her, assured me they have prayer circles praying, and those that have asked me how I am doing. THANK YOU.  The most believable lie the enemy of my heart wants me to believe is that God has forgotten Ezzy and he doesn’t care and that we are all alone in this battle.

 

So tomorrow as my warrior crosses your heart, I am going to ask you to pray specifically for her as she goes to school, out of the safe bubble we created for her 18 days ago.  Pray that the doctors continue to have discernment for her care and that the steroids will loosen up this cough that has her worn out.

I heard a sermon from a friend today and he said “we have to trust God and not our circumstances”.  So that is what I am going to choose to do, even if it feels like groundhogs day, I am going to stop asking “God what are you doing” and instead ask him “God can you show me where you are in this”.  It has been mentally, physically, emotionally and down right draining the last 18 days. I am not perfect and I definitely don’t have this life of faith thing perfected, but I have to share that I even in the valley, I am becoming aware that he IS there and has NOT forgotten my girl.  

 

More than anything he recently told me, “sarah, she’s not yours, she’s mine”.

Here’s to day 19 and what God has planned for miracle girl that is always teaching me that a faith isn’t faith until it is tested.

Some memories feel like they were lifetimes ago, then there are the memories that feel like they just happened seconds ago.  It’s always been this way with Ezrah. I fought postpartum fog like a champion, making sure to lock in everything my exhausted brain could hold to ensure that her life would be remembered.  I think it’s been a blessing for me. Even though the circumstances have not been what I would have ever desired for her story. When I remember all that has happened in her 9 years of life, I can’t help but testify to the goodness, faithfulness and the never changing presence of God in her life.  He has always been there.

I have watched over this last year a little girl who is vastly approaching tween years.  Is it just me or are girls growing up faster than ever?!? Even in all our attempts to shelter her from a world that craves and demands girls to grow up and become things that can be used and abused, tossed and moved on to the next thing, I still see the influence the world has.  In my frustrating moments of motherhood, when her tears are flowing because of mean girls at school, awful boys commenting about her body or better yet dealing with whatever life sized emotion she is experiencing, in it all, I am thankful I have the chance to work through those things with her.

Ezrah experiences everything with all that she has.  She doesn’t go into a new situation with caution, she doesn’t gently dip her toes in, she doesn’t wait to see other’s hesitations.  Nope, if she wants to do something, she runs straight towards it with abandon.

Ezrah May, in all of her limitations, all of her detours she has to take daily to just live a normal life like her peers, has decided to take it all in, the good and the bad.

This realization is actually incredibly healthy for me to take in right now.  Because when you have a child that sees the world as an open book, with empty pages, ready to be filled in…you have to make sure to not taint those pages with your own fears and worries.

Her strength is the very thing I prayed for, it’s the very thing that doesn’t allow fear to hold her back.  To not dwell on the hurts that happen when CF holds her back from doing what she wants to do.

I watched her recently light up when we shared a meal with 2 friends during our medical travel.  It was unexpected and just what her old soul in a tiny little body needed to have. She got to sit and talk with a highschooler, who by the way is as sweet as they come.  She sat there and answered all the burning questions a brave little 9 yr old could fathom while she sat across from the person she saw as the wealth of information on the world.  It was precious. It allowed Ezzy to dwell on other things then the looming day ahead of appointments in a tiny little room.

Traveling for medical appointments is hard.  It causing stress on all parties involved, the ones that go and the ones that stay behind.  If I am the one chosen to take her, then I try my best to make it fun. To set some extra spending money aside so that a little spoiling can happen.  I try to fill the day and hours leading up to her appointment busy and light, because I have learned that those 6 hours of seeing specialists, getting poked, having a massive Q-tip shoved down her throat, her body examined and being asked a list of questions can be too much for her.  I watch the anxiety rise, but instead of her acting it out, she stuffs it. She holds it in. Not willing to show her cards. Her big eyes watch the door and she braces when she hears it open, I see her process “oh it’s that person, so this is what is going to happen…”. She doesn’t talk about her feelings.  She draws, she lets herself get lost. It’s how she has managed to walk this journey. It’s how she is growing up, seeing the world differently.

In all that, I guess what I am trying to say is that in all the things we have had to adapt to, due to CF, I am so thankful that she has is having normal growing pains.  There will always be mean girls and I will talk to her about them until I am blue in the face, because let’s face it, they never go away, even in adulthood, am I right? I will listen to her break down in tears over the stupid boy who can’t help but pick on her because he doesn’t have the skills or awareness to address his own feelings, because in a few years those tears will be different tears, over a stupid boy.  I will concede to her daddy, the little girl whisperer, when her emotions are bigger than my adult body and thank the Lord he gave him to us, because in it all, Ezzy is having a chance to experience life like any other 9 year old girl.

I am thankful that she hasn’t let the hard parts of her story overshadow the parts that are shining right now.  She may be growing up in a broken world that wants her to fit into a box because of her gender, that wants to put unreasonable expectations on her, that wants to exploit her innocence, that wants her to be a slave to comparison and question her self worth.  But let me tell you about my girl. She won’t be anyone’s pawn. She won’t bend just because she is told to. She won’t compromise because you want her too.

And for that, for all that is part of her story, I am thankful.  Because the world needs strong women in it. Women who aren’t dictated by their fears, worries, or concerns.  Women who aren’t held back because of another’s opinion about them. The world needs more courageous women who look at their story and don’t wallow in self pity, but instead smile and say “that won’t break me, just watch”.

Today Ezrah May is 9 years old.  She has one of the best senses of humor in our family.  She is so witty. She sees the world differently and in return can read you faster than anything, so don’t try and hide your story from her, be honest with her, tell her where you are at, you will be surprised how much she already knew.  She loves fiercely, but needs you to show vulnerability in feelings, because she has spent 9 years stuffing vulnerability… If you tell her she can’t, she will prove to you she CAN. Her memory is one for the books, so don’t think you can get away with anything.  She dreams of being an illustrator and author one day. She can’t wait to be a teenager so she can have her own phone. She talks about college and looks me straight in the eyes every single time, because she NEEDS me to know she is going.  I watched her be the smallest one on the court and she never once let that define her ability to play ball! 

Happy birthday to my miracle baby!!!

“Oh her freckles…she is so beautiful!”

I have gotten so use to people commenting on the little army of spots across the bridge of her nose and cheeks that it doesn’t phase me anymore, even when it’s a stranger.

I have watched her quiet demeanor be something that attracts attention from only the most attentive people.  She doesn’t walk in a room and command it.  She doesn’t make sure that she is the loudest voice to be heard.  She doesn’t expect to lead the group of people she is around.  She would much rather stay in the background, observing.

I have shared before in past birthday blogs on how life with a big family, being smack in the middle or having an older sister with a fatal disease has naturally stolen any chances of having the spotlight.  But I have watched in these years to see how all those things are developing her character and helping her see the world with empathy.

Dinner preparations will be at the height of chaos, with little sisters “quietly” playing at my feet with cooking utensils, my face is most likely making a frustrated scrunchy face while I attempt to carefully read the newest grainfree/dairyfree/sugarfree meal.  That is when she decides to make her entrance in the kitchen after a long day at school.  To her its finally quiet enough to garner my full attention.  Her older brother and sister have hammered their rounds at the day at mom and looked past her divided attention, so now its her turn.

What I have found if I don’t quickly change the look on my face or for goodness sake just put the preparation on hold, her response will be “oh, I can see you are busy, I will come back later”.  Yet, I am finding, rarely she does.  Rarely she comes back, eagerly telling me her day.

The last few months of my life have been immersed in a brand new way of thinking.  I have been blessed to be a new student in the soul formation academy.  It has challenged every part of my being and how I see God, but also how my soul has been shaped through my environment and more importantly, how do I get it in line with the heart of our heavenly Father.

I am thankful for the opportunity to change my thinking and acting patterns.  Kyrene Grace is definitely a benefactor.

If I can’t pause dinner, due to the countless activities we have going on every night of the week, I will come to her, I will find her in her safe tucked away space in the house, decompressing the day of people in her face nonstop.  I will sit with her and ask “ok kyre grace, what did you want to tell me about school?”.  I will sit next to her on the couch while there is loud chaos going on in the kitchen with dad and the older siblings, the littles racing down the hallway, I will gently probe her with questions that will help me understand what is going on in her mind that keeps her not always present with us.

She is always thinking.  She is always processing.  She is always watching the world around her.

Recently she sauntered up next tome, it actually made me think of the way a cat would come to their owner that finally came home after hours of being away, only to wait a good 30 mins to show affection because they didn’t want their owner to think they “needed” them.  She tucked into my side and said “momma, do you know I am a missionary?”  Eyes twinkling on a bed of freckles, smile spread across her face so that her dimples sink in farther, assurance and joy wrapping the statement she just made.

Kyrene Grace Harney, has it already woven in her soul that she has the gift and the world needs it.  She has found that she is loved and enough in the eyes of the one who knit her together in my womb and she wants everyone to feel that same way.  She told me that she tells her classmates about Jesus, that he loves them and she asks them to come to church with her.

When walmart was all out of costumes and the normal, make them ourselves wasn’t an option, she ended up coming home with a witch costume.  Without me scolding her daddy, something they all knew I was capable of doing, she walked right up to me and said “I told Jesus, I still love him the most”.  Her conviction is endearing.

I find it so amazing that the child I questioned the Lord the most with “why?” would be the child that I have heard him tell me, “don’t hold on to tightly to her, I have a big call on her life, you need to trust me”.  Interesting, right? Given the diagnosis of her sister.  Yet God in his providence is preparing me for the work that he has for her to do and my heart for letting her go and do it one day, work that is probably going to scare this momma’s heart.

Today, my little missionary turns 7.  Today she gets to go and spend it with her best friend.  We are going to have a fancy lunch at a restaurant, play at the toy store, get frojo and later open presents with her family that is always learning how to love her in ways that she needs the most, even if she fails at times to tell us how in her little 7 year old ways.

Kyrene Grace, you are 7 years old today.  Thanks for reminding me that everyone needs to be loved uniquely, that they deserve it.  Thank you for reminding me that God loves to show his glory in people that don’t fit the mold.  Thank you for loving others that the world deems unworthy, I am touched by every single teacher you have had telling me that you are partnered with the challenging kids because of your consistent patience with them.  Thank you for your sneaky smiles that always catch me off guard and turn my hard days around.

Happy birthday Gracie

There is something about when you get a chance to tell your love story…

Am I right?

Colors, outfits you wore, smells, deeply rooted feelings that may or may not make their appearance often come pouring out.

Over a recent meal shared with another couple, the chance to walk down memory lane came.  We were actively trying to get to know this couple, welcoming them to our church family and just be Richard and Sarah, nothing else, no show, just us.

Richard, in his best attempts gave his immensely short version of our story.  I couldn’t help but intrude on his memory. He was leaving out the best part.

So there I was unashamedly telling my side and sharing the details that he so quickly glossed over or failed to bring up.

You see, because of one person’s bold choice, our love story continued, even though it should have ended in August of 2004.

I was done, just done.

His childish lifestyle with his brother and their friends had reached a capacity that I no longer could tolerate.  They were more interested in planning their classes, lives, work schedules and weekends around things that were leading nowhere.  

I on the other hand was faced with the alarming reality that nursing school was not going to be part of my story (the lowest GPA they accepted the year I applied was a 4.0).  I was sitting at a 3.8 and had no hope of pursuing a calling I thought was my destiny.

Failure, defeat, dreams crushed and a relationship that seemed to be going nowhere led me to make a uncharacteristic choice.  I decided to leave the small private school I was attending, near my boyfriend and move far away, to a place where the sun shined everyday.  In the deepest parts of my soul, I believed this was how I was going to make a clean break. He wouldn’t have the gumption to follow me, he was too content not growing up and making choices that didn’t say to me that our future mattered.  I really believed that was the end to our rollercoaster relationship the last 4 years.

Little did I know…

October 2004, the same month that we started dating in 2000, he asked me to marry him.  

How did we get there from where I said we were heading?

In those months of self realization as well as the wake up call that he had been given, he began to change.  A good paying job, saving account to build, breaking away from his youthful surroundings began to be his norm.

Even in the weeks leading up to our marriage, heck even our wedding day, I had people fully questioning the decision I was making.  They couldn’t let go of the Richard they had watched “grow up” and not really change. I saw something. They couldn’t yet see it, but I saw something change for him.  

Flash forward to October 31, 2018.  We had our first date, on this day, 18 yrs ago.

18 yrs ago.

Somehow, we managed to convince my mom to take the kids for us earlier this month.  We ran away for 6 days. When my favorite uncle found out, he asked us “what do you think you will do with yourselves for 6 days without the kids to bother you?”. Richard and I nervously laughed, knowing that we knew full well that we didn’t have a clue what it would be like. All we have known for the majority of our relationship is a love story woven in with 5 little lives.

He then told us, “you will either be running back home because you missed the kids too much or you will not want to come back because you had too much fun without them, lets hope its the latter”.

You want to know the truth?

We didn’t want to board that plane home.  We didn’t want to pack up and leave the little sanctuary we had lived in for the last 6 days.  Free of responsibilities, free of meals to make, bottoms to wipe, fights to referee, life lessons to teach, discussions on who’s turn it is to deal with whatever bomb just went off or speaking in fragmented sentences. We missed their little faces and wanted to squeeze them for a few minutes, but we would have turned right back around to be alone again in a heart beat.

6 days of hand holding, exploring new places, eating ridiculously good food, going to a concert, getting tattoos, connecting and yes at times, just sitting in silence with each other.  I don’t know if you could have pried us off each other, we were in constant contact with each other.

we couldn’t get enough of it.

That thing that drove me to walk down the aisle, down the aisle to a broken soul that had yet met Jesus, had yet to show me what he was really made of under deep soul crushing circumstances, had yet to transform into the God fearing man he is today, the thing that no one else could see was what led me.

He was the echo to the cavern of my heart, a heart that was fiercely cautious and unwilling to give it over freely to anyone. My self preservation didn’t scare him off and I knew that if he could see past all that walls I had built and still want me, there was something in him that I needed.

I have witnessed marriages struggle, break and not repair, because both partners in the equation forgot to put each other first. Somewhere in between raising the kids and dealing with life, they forgot to ask their best friend to come along with them, they forgot to come running home and tell each other about their day, just like they did in the early dating years, where they would share every detail with each other. They forgot to make each other the most important part of their day.

Many kind people have told richard and I to be careful, be on guard for the coma that the enemy wants to put marriages in.

To be honest it is the thing that we have agreed since day one that we would be vigilant about.

Without any chances to experience what it would be like without kids for the last 11 yrs, we never knew if there were cracks forming, we were unaware if we were letting our marriage dance with the looming chance of forgetting each other in the chaos of the Harney 7.

It is with joy and encouragement to anyone who takes the time to read this (lets be honest the blogging world is starting to die as people’s patience to sit and focus on one thing for more than a few seconds or even minutes is where we as a society are at), its my hope that you and your spouse in the midst of the hard years, say no to the world’s desire for you to hook up to the anesthesia and sleep your way through your marriage.

It hasn’t been easy.  We had many chances in the last 18 yrs to say “peace out”.  We had opportunities to say, “this crap is too scary or hurts to deep, so I am just going to cut my ties with you and find someone else”.  We had to physically say to each other “I don’t care what you say, I am not going anywhere, I would never break your trust no matter how much your fears tell you I would”.

By the grace of God, I am blessed to say he is my best friend.  There is no other person on the earth that I would want to spend every single moment with.  No other person I would want to see me at my lowest and weakest points of my soul and to celebrate the victories or highes that come as I learn what it means to be me.

6 days wasn’t enough.  But it was long enough for me to see that we are going to be just fine when the last little harney flies the coop.  Enough for me to dream about what it will be like when it’s just me and him. Back to the basics.

If you haven’t had the time to get away with your spouse…btw it took us 12.5 yrs to finally have a honeymoon, 11 yrs since having kids to go away with each other, so no judgement .  I would encourage you to find a way to break away. Go stay the night at the hotel, ask for someone to watch your kids for a full 24 hrs. So you can enjoy 3 complete meals, go to bed, rise with just each other.  

Go have your health screen check, don’t fall asleep.  Your marriage is the most important human relationship you will EVER have on this earth.  

Where is your love story at right now?  How do you want it to end? What are you doing to make sure it has the ending you hope for?

18 years later and he still makes my heart beat faster when our eyes lock in a crowded room…

As I held her close to my chest this morning, locking eyes with her, letting her read me and all the things going through my mind, I recalled the day I first met her.

The sharp pain that woke my exhausted body, caused me to drag my swollen pregnant body to the gym, to ensure that the gestational diabetes that had become my normal would not jeopardize her health. I could barely get through my two mile walk. The pains were regular, I was timing them, slowly embracing that she would soon be in my arms. Even though a quick grocery store trip had to happen, I somehow managed to push the cart up and down, grabbing the items that would be needed by my mom and kids while I was in the hospital. I knew it was D day.

Laboring at home, something I wanted to experience like I had with Ya’el was my goal. What I found was that its alot harder to labor at home with little ones. Especially a 2 yr old that just wanted to be held and couldn’t understand why sitting still snuggling her was something I could not do.

When I walked into the hospital, with a calm yet nervous husband, I forced myself to find balance between being present and also going into the sacred mental space every laboring mother has to find. I wanted to remember the shine of the waxed floors, the smell of the coffee that had being brewing too long. I didn’t want to forget the yellow strip that would hold the heart monitor around my belly. I made sure to glance at the empty bassinet and accept that I would never see another newborn Harney baby in there after that day.

Knowing and coming to grips with the fact that Veil Eden is the last baby I will ever grow has been a beautiful dance my heart has experienced.

Every milestone has been treasured deep within in my soul. They aren’t recorded in a baby book, like the rest of them. I learned after Ya’el that baby books with a family of more than 2 kids was unrealistic. I may not have a paper trail to give her one day, but I can tell you that I imprinted so many of her 1sts in my soul. Colors, smells, weather, who was around all filed away in my mental camera. I pray that she will understand and accept the words I write each year on her birthday.

Veil Eden has shown me yet again how spiritual of beings we are.

There is this quote in a movie I loved watching in high school, college or days when I had a crappy day, that use to make my husband roll his eyes at.

“That doesn’t even make sense” is always what he use to say.

Yet it always made sense to me. The longing, the empty cavern needing to be filled, the ache to be in relationship. All of that I experience with my heavenly Father, God. I long for Heaven, for eternity with my King Jesus, I long to experience sitting in the throne room of God and having every weight of the world stripped from the fear, pain, hurts I carried. Yet I have never physically met Him.

This best describes how I felt the moment I learned about Veil Eden. I see it in the way people have made space in their heart for her, knowing she needs to be in there, tucked in safely.

I have heard from countless people about her gentle demeanor. How they would just sit and wait for her flip a switch and turn into the at times “demon possessed” toddler they expected. But majority to this day still says “she is just the sweetest thing”.

And it’s true.

Veil Eden makes sure to say good morning to everyone the moment her feet hit the ground. She runs to the couch, calls each family member by name and says “hi”. If mom is running late from the gym or taking too long in the shower, she will patiently sit with the sibling who won the battle to get her morning snuggles.

She sings, especially if momma or Ya’el are belting out one of their favorite songs. Missing out on raising her voice in song is something she won’t let happen. If kyre is lost in a song, moving her body and flowing the way that only she can, she rushes to her side to learn a crash course in creative dance.

Even though her demeanor has been gentle, patient and quite frankly peaceful, she still has been particular about who she has let into her trusted circle. But once you pass the mark, boy watch out, she has your number and will walk right up to you and raise her arms to be picked up.

As we are nearing her 2nd birthday, it comes with another delicate dance between joy and sadness. I have successfully fed her for 2 years, from my body. The longest stretch for me, something that I didn’t achieve with the older ones. I am ready for her to grow up, yet I have cherished holding her, nursing her whenever she wanted “num nums” and choosing to stay present for my caboose baby.

As upcoming travel requires her and I to be seperated for multiple days, now is the time to begin the final days or possible week (s) of our journey as nursing child and momma.

It’s crazy to me how many times I thought that I had had my “last” baby. How I experienced a bonus baby 3x now. Each one showing me that we actually were missing a puzzle piece to our unit. I would daydream, pray and wrestle with how this bonus baby would fit into the chaos of a family that wasn’t prepared for them.

Yet if I had to be honest with you, Veil Eden never was a “lets hope we have room for her”. Instead from the moment we learned about Veil, weeks before I was traveling to run a half. Both Richard and I knew we needed her. That deep down there was a longing, a desire to be woven together to another soul. We had just been denying it, thinking we couldn’t make space for a 5th child.

Today we get to celebrate another year of having her in our lives. Another year of holding her when life gets to much and fighting over who gets her snuggles that bring immediate peace to the restless soul holding her. Today we get to thank God for always being a good Father and giving us what we NEED, not what we think we need. Today we get to welcome our caboose into the toddler years, saying goodbye to last Harney infant stage, but we get to do it with great joy.

Veil Eden, we love you so much. We don’t know why God thought we deserved you, but you really are the completion of our story. You have helped us see God’s goodness and favor in so many ways. How you love, how you comfort those who need you, how you read people so closely and are always watching and assessing the mental health of your family amazes me. I pray that you will always gently pry past the facades and masks people wear and instead take the time that you do to truly know a person’s heart. I can’t wait to see why God was so persistent in creating you and blessing this earth with your gentle soul.

Happy 2nd birthday sweet bean

There is something about your mid 30s.

The number never use to worry me, I always believed in my soul that aging wouldn’t be something that I feared. That it would be something that I would embrace, each grey strand found in my hair, each extra crease found in my skin would mean that I was still alive, still going after life.

The fear that came around “the 30s”. Happened when we stood with Dr. Death, as he gave us the cliff note version of Cystic Fibrosis. We were standing on opposite sides of Ezzy’s hospital bed. I had just celebrated her very first feeding from my body, something that the doctors said I would never experience. “Lucky to reach her 30s”, that rang through my head and continued to haunt me as I aged.

Aging became something that I mourned. Feeling guilty that I was experiencing something that specialists told me would be a miracle for her to experience.

I will admit, it forced me to go down the crazy train in my late 20s. I was 26 when I was given that picture of no hope of aging for my newborn baby girl.

The performer, the perfectionist, the achiever in me when into autopilot. Something that God had broken in me just a few years prior.

If I couldn’t control my baby’s future, then I was going to do everything I could to control my daily life and its surroundings.

I started running half marathons. I strived, I trained, I reached goals, never ever feeling enough though.

I put distance between myself and friends. If they were achieving things that I wished I could, then I put up walls. If they weren’t daily dealing with the prospect of losing a child (which none of them were) then I couldn’t handle being around them and their healthy kids. I couldn’t handle feeling like a failure in their presence. I was a slave to comparison. Denying that somewhere deep down, they were doing the same.

Compare. Strive. Compete. Perfect. Perform. Achieve.

ON REPEAT. EVERY DAY.

Then something happened in my 30s.

I somehow in my mess of trying to figure myself out, found myself smack dab in the most beautiful village. A village of fierce woman, who in their failures and success, carved a space for a broken hurt soul. They love me. In ALL MY STUFF.

Today I turn 34.

The other day my husband lingered too long as he hugged me goodbye for work. I looked up at him and asked him what he was doing. His reply, “counting your grey hair”…

Today I woke up to my workout alarm, set for 5:14 am, like it is every M-F. But today I turned it off, grabbed my face mask and told myself, “its ok, go back to sleep, you have nothing to prove”. This summer, unlike the last 7 summers, I haven’t even reached my usual miles. I am slower then I was when I first started training for halfs. I put on a few extra pounds this summer too. Why? Because I was too busy staying up late with my husband having late night couch dates, because I hit the dismiss button too many mornings. Because I enjoyed way to many good meals with friends and family. Because I am learning that this is the only body God gave me and I need to thank him, by not depriving it.

I opened presents that made tears form, tight hugs to be given and honestly they just made my heart explode.

And because the husband couldn’t leave me out of getting my age in pancakes 😂

I now drink the same tea my mom drank as she was raising us in her 30s, and yes I am so excited to get my own collection of ceramic figurines I remember playing with as a child 😂

34 its going to be a good year. I am not going to fear age any longer. Aging has brought wisdom, discernment, an amazing village, deeper love for my spouse, awareness of higher callings, peace and contentment. I am not afraid of growing old. I don’t know the future for my baby girl that isn’t promised these years, but I hope that as she embraces her journey and sees a mother that isn’t bound by fears, but instead one that is embracing life as it comes.