All posts by psalm139momma

I am married to my high school sweetheart. We have 5 beautiful little children. Our 2nd born child has Cystic Fibrosis, a fatal lung and digestive disease, it has shaped our days and how we live day to day life. We live in southeast Alaska. Our days are filled with all the chaos that comes with raising a family that is bigger then societal norms. We love to hunt, fish and have embraced the urban homestead lifestyle, thanks to farmer Harney, aka daddy. If there is anything you learn from this blog, I hope it is the fact we love God, each other, and are trying to be the light in a world filled with darkness! Happy reading my friends!

A Decade of Living

After a year of hard hard hard things to face, endure and somehow still find the courage to keep going, I chose to interview my girl for her birthday.  Christmas morning when I walked into the bathroom, I immediately had a smile on my face, a smile because I recalled Christmas morning 2009.  6 am I had walked into the bathroom with the awareness that I was in labor.

Memories of that day and many of the days after have not brought a lot of good feelings.  Instead, they have been hard, hard to relieve, hard to forget.

This year, this Christmas, instead of painful memories, God gave me a really good one.  One that was full of excitement, hope, and joy as I realized I was getting ready to welcome a new soul into the world.  I am thankful that is what He gave me.  Because I want to believe that is the new chapter we are getting ready to write as we leave behind this decade and getting ready to start a new one!  Goodbye sorrow, hello JOY

 

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Ezzy May, I hope that as you read these blogs when you are older, you see that in my openness, in my willingness to say things/write things out loud and on paper that you will see I was and am a work in progress.  Your story has been the greatest driving force to help me face my fears, find help when I couldn’t do it on my own and more than anything grow my faith.

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Thanks for letting me interview you on your 10th birthday!

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Here we go:

  1. Describe yourself?
  • A smart kind friend, I have CF, I like reading, I love my friends, I like helping people who need help
  1. What are you thankful for this year?
  • My best friend always being there for me (when I was in the hospital, taking care of me at school)

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  1. What do you want to be when you grow up?
  • Author and illustrator (want to write about my stuffed animals, my friends and my life with CF)
  1. What is really important to you?
  • Friends and family
  1. If you could go anywhere, where would you go?
  • Phoenix, Arizona. Go see my aunt Jana, Uncle Ronnie, and my cousins and go swimming in their pool
  1. Who do you admire and why?
  • Heidi Bauer, I want to be friendly and kind like her…and crazy and not shy

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  1. What are you afraid of?
  • Clowns, (not Lbow because he is kind and funny) because of the way they look and act

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  • Friendships when I get older, don’t know what it will be like with them when we grow up
  1. What is one of your favorite memories?
  • Ice skating at Ward Lake with my family right before I got sent to Seattle Children’s to live for a while and going to the movies to see Frozen 2

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  1. What is something you want to learn?
  • How to sow sea otter fur into clothing like aunt Suzy
  1. What are you looking forward to this coming year?
  • Changing into a big girl and learning how to do stuff the right way and not act like how I did this last year. For a White Christmas hopefully
  1. Bonus: (anything you want to say)
  • I want to be better at taking my pills (enzymes)

 

Ezrah May Harney, you are 10 years old today.  There was a day 9 years and many months ago that I was unsure you would even get to this birthday.  The things the doctors said early in your life ripped all the hope of reaching even the simplest of milestones.  I am so thankful that you have reached this day.  I can’t wait to celebrate you with friends and family.  You have been my greatest opportunity to constantly reframe my thinking and try to find the sliver of good in all the hard.

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Keep defying the odds baby girl, keep holding onto big dreams, keep letting others in as you learn how to trust them even if they can’t or don’t understand all the things that you are going through.

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Happy birthday 10 yr old, here’s to a new decade of memories to make!

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Love you

 

Just Like a Snowflake

Dear Kyrene Grace, I was talking about you and your birthday blog with your dad. I told him that what I had originally wrote that day didn’t feel right. Something was off. He asked me, “as you long as you wrote it to her and no one else, then it doesn’t matter”.

IMG_3144After some reflection I realized that I was trying to write about you, trying to help the world see you, the way that I see you, the way that gets lost and missed by others because you can be just like me too often. But God was faithful to recall many conversations that I have been blessed to have with people who have seen YOU, the real YOU, not because of things I wrote about you or how I talk about you, because they had their own unique experiences with you and you carved a special place in their heart. So, this letter is to you, yes others are reading this on your birthday, but it’s because I want you to be celebrated. I want those who don’t get to be near you to still get a peek at Kyrene Grace Harney.

IMG_3326Today you are eight years old! While driving in the dark, cold, side ways rain I was brought to the memory of the two days before we met you. Your god-parents had gone in to have their special little boy. Knowing that they were holding him in their arms, witnessing the miracle of life wrapped in a tiny 6 lb. soul made your father and I so anxious. The doctor admitted us, even though your due date was 2 weeks away. The fluid that had kept you safe the last 38 weeks was too low. After the dreaded Pitocin for 12 hrs straight and no results, the team decided to give me a sleeping pill and told me to rest and we would try again in the morning. 2 hrs later I was in full blown labor. You needed to come on your own terms, not forced. Nothing has changed 8 years later. You came out crying, covered in vernex and we couldn’t believe we had such a tiny little bean to call our own.

IMG_6005You were easy to calm, easy to hold, easy to be around. That was your story for years. You were always patient, waiting to be fed, waiting to be changed, waiting and waiting. That role was yours and you owned it. You learned that there were two others before you that were louder and more demanding.

IMG_6013Over the years I watched you become the very friend and constant companion that Ezzy needed in her 4 years of isolation as we did our best to protect her. God often reminded me that you were created against all our attempts to not grow our family because Ezzy needed YOU.

IMG_6007When the school years came, you couldn’t contain your excitement. You were so ready. SO ready to experience on your own this whole leaving mom and making new friends. I smile that when we sat down and asked your pre-k teacher to speak plainly with us about you, she laughed and said, “oh I will”. You were competitive, always wanting to be the first, always wanting to get things right, so driven. You made my momma heart smile because I was so thankful that your ability to embrace who you were was something that you embodied at such a young age. Even though you love school and friends, ever since pre-k and still to this day, you come home and very quickly escape to somewhere quiet away from everyone else. Your soul needs to introvert to recharge after being in a world of extroverts. You know how to advocate for your mental health and you do your best to always make time for just you and yourself 😊 I wonder why we all find ourselves asking “where is Kyre” even though we know the answer.

IMG_6014I love hearing teachers that don’t yet teach you tell me that you are one of their favorites they look for. Because they know you will always give them a quick squeeze and go on your day, not asking for anything from them, but instead searching for them and loving them when they need it most. I recently learned that your sarcasm is loved as well. After questioning a teacher about walking with scissors and then praising them for not hurting themselves when they finished, still shocks and makes me smile. When you made the decision to get baptized this fall, I questioned it. I was raised that it was typically something that took place in the older years of childhood. But then when I sat down with you and your dad and asked you why you wanted to be baptized you replied very matter of fact, “because this is the next step after asking him in my heart and I want to be a new creation”. You confessed your love and need of a Savior and I heard the Lord tell me, “Sarah, she KNOWS me, don’t limit her understanding of who I am according to your adult understanding…childlike faith”. We rejoiced watching you make the bold choice to enter the waters of baptism.

IMG_4146Your courage to handle a new class this year with none of the close friends you have had the last few years amazed me. It wasn’t easy, seeing them all continue on without you, it was hard to watch you process the change. Yet you have thrived and made friendships with new people. I commend you, knowing its hard making new friends, trusting new people when you are an introvert. Its hard to find friends that accept that alone time is not rejection, it actually makes you a better friend. How putting thoughts to words instead of letting them take residence in your head can be exhausting. I love seeing you shine and let more people in. More people to realize how tender and caring of a soul you are.

AFFD4013-497B-4F02-9838-6C579133ADE2Thank you for always being there to hug me when I am struggling. The first to pray when something happens to one of us, you are quick to lay hands on us, pray over us with a solid faith that God is always listening for your sweet little voice. I love how animals are still drawn to you, that even the timidest of creatures are pulled to you. I often wonder what color you put off for them to see that you are safe (it’s a real thing…study epilepsy dogs. They see people’s auroras). I love that you are embracing your freckles, something you use to hate. You now see they make you unique and it brings the biggest smile on your face when someone mentions them.

A8D5FD5C-6D9F-4CD9-888C-7252283B56CBMy most favorite memory I want to share with you happened last Friday. You were finishing up your last day of swim lessons and had been so discreet when sharing all the fun you had when Ezzy was around. You would come and talk quietly about what you were learning, making sure you weren’t crushing her heart because she will never experience them. You lit up when you told me you jumped in the deep end. You are not a daredevil. Trying new things doesn’t come easily for you. Yet you did it! I came and watched you, wanting to see it for myself. I watched you with your new peer group and saw you fit in perfectly. I watched your quiet tenderness with your classmates. Watched you be the first one to turn their shirt into a floatation device. I couldn’t stop smiling. You were shining.

5466DD80-587C-4BA8-B80C-03EB8D885E17Kyre Grace, I pray that this coming year you continue to find peace in who God made you to be, that you continue to lean in and let others in your space. You are one very special kid. The world needs you in it, even though it can be taxing to be in it. Your awareness of others’ needs makes me relieved that you are in this world because you see lack and believe that you can help them find wholeness. Your love for God will ground you when you question your worth or where you fit in this world. He will remind you that just like a snowflake, he created you to be unique, to not be something that is copied. Happy birthday sweet girl, we love you Gracie

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A reflection of His Love

Early summer mornings were filled with listening to little feet run down the hallway in frantic steps.  She figured out quickly that having accidents was not the way she wanted to start her days.  We would stumble out of our room, bed head, only able to see with squinted eyes.  There she would be sitting on the toilet.  “I had to go potty, I don’t want to go in my bed”.  With the same hurried feet that led her to the bathroom, she would race back to bed and tuck in.

Veil Eden

We go places and I have people ask me her age, after listening to her have a conversation with me or her siblings.  Usually there is a perplexed look on their faces.  I am use to it and most of the time, I can’t help but smile freely.  I quickly inform them, “well, she is the youngest of 5 kids, she learned if she wanted to communicate, she had better talk clearly”.  

This little turkey did so well at her preschool screen at the ripe old age of 2.5 that when she finished, I was told, “she did really great, she is really smart”.  Which meant, don’t get your hopes up that she will be in need of early preschool programs.  She didn’t qualify for any speech help…

Its been such an interesting balance with her.  I have found in the 3 years of being her momma that I was blessed to really embrace the tender years of infancy and toddlerhood.  She didn’t have to fight for space, she didn’t have to be set aside so I could run and attend to another baby.  When she turned 2, I felt like I was experiencing a phase that was so foreign.  Every time I had a 2-yr. old since 2010, I had a newborn baby.  But this last year, Veil Eden has remained my baby.

She has been held longer on school mornings, many times after nap time I can be found curled up in her bed with her, waiting for her to wake up and start the second part of her day.  When I am trying to cook dinner and her little arms reach up to be held, there is no one else in line, in front or behind of her.  Truth be told, the majority of the time she is the one that I look for when I first come home from running errands, work, etc.  Who wouldn’t want to be greeted with “hi momma!” followed up with a running start to land in my arms?

Veil Eden, she sees the world with JOY filled sunglasses.  So many times, throughout the day we hear her laugh to herself.  It could be at the dog, the blue jay that has flown on the tree branch that hangs over our dining room table window, but the absolute best is when she laughs and we can’t see what it was, because she has just witnessed something that we were too busy to stop and see.

Always the first one to point out the bird flying over the ocean water, the cruise ship sailing through our small town, the salmon berry on the branch, the fish jumping in the stream.  God’s creation hasn’t lost its majesty to her, she doesn’t take those things for granted.

I have watched her be the buddy that each sibling needs.  

For Cayden she is his adventure buddy.  He is always taking her to experience something new, at times I get nervous, but then I watch how he fiercely he protects her.  He never leads her to harm, but instead is wanting to show her the big world, but deep down he wants to see it through her eyes.  I don’t know if he has ever loved someone as much as he loves her.

Ezzy searches her out when life gets too much.  When she needs an excuse to work out what she is facing though playtime.  She will find dolls, get out art supplies or turn on baby cartoons and hold her tight while they both laugh together.  For Ezzy, Veil has become therapeutic support.

Kyrene, the name that Veil only knows to use, in all these years of being around us, she refuses to call her Kyre, but instead always by her full name.  Kyrene can be overwhelmed with the placement of family members and fighting to believe she has a place.  When those days come, I find that Veil is permanently attached to Kyre’s hip.  Going all the places that Kyre wants to go and not be alone.  Kyrene finds comfort in caring for her, offering to shower her, get her dressed, put her down for bed with a book.  Veil has become someone that Kyrene can serve and love when she doesn’t feel loved.

Ya’el doesn’t for a second let Veil forget that she is the big sister placed in Veil’s life to teach her ALL about the world.  There are constant instructions on “this is how you get ready for school,this is how you put away the silverware, this is how you put your shoes on, this is how you brush your teeth…”  Their friendship is so deep, I can’t tell if the love is because they are siblings or if it is because they are truly friends.  They do everything together.  I need to worry if I don’t see Veil with Ya’el, which means Veil has found something to explore and is finding trouble.  Ya’el has coached her through potty training, through weaning, through sleeping through the night.  Ya’el has big plans for her sister and is making sure that she doesn’t forget that she is capable of anything she sets her mind on.

If you dare to enter into our home and sit your body down at our breakfast bar and blend into the background or better yet just sneak in (we probably wouldn’t even notice – we have yet to have a day without extra bodies in our home) you would see that we can’t stop smiling when she talks to us.  Her voice is so gentle, so sweet.  She can carry on full conversations with you and you will wonder how she learned to talk that way.  The other day she told me “I wasn’t expecting you to do that”. 

You will find her on the counter when brother is loading the dishwasher.  She will sit on the toilet and have early morning conversations with daddy while he showers.  Her favorite spot to sit at the table will always have spilled milk and some remnants of cereal left behind.  Her clothes never match, but they are at least put on the right way 85% of the time.  If she is in my arms, its because we both need our heartbeats to sync and settle each other, leave us be, just give us 5 minutes and we will be able to keep going about our day.  Music will bring out her artistic talents and you will WANT to watch her little recital.

Veil Eden, today you are 3 years old.  I haven’t blinked, I can’t even say where has the time gone?  You have filled each day on earth with this all-encompassing awareness that you were the perfect soul to end the baby years with.  

You have been loved by so many in your short 3 years.  Your tender smile is something that makes grown men stop and talk to you at the grocery store.  I will never forget when an old nana stopped and saw your gentle eyes and she couldn’t help but stop what she was doing and come over and tell you that you were the most precious little girl she had ever seen.  Peace, peace that others crave can be found just by being in your presence.  God is so good to grace this dark world with your gentle soul.  

I pray that you will continue to marvel at all that God has made and find comfort that you are one of his beautiful creations.  I hope that you never lose your JOY filled sunglasses, life is too short to go without laughing.  I pray that God will always give you the gift to love others just the way they need, that you will be the reflection of His deep love for them.  I also pray that God will watch over you, placing His angels all around you, because this world can’t stand bright lights and always tries to take them out.  I also pray that because you have been given the gift to communicate so clearly that you will be one that can speak for those who don’t have a voice, that your words will be heard and taken seriously. 

Veil Eden, sweet bean, love doesn’t seem like an adequate word to use when I try to convey how I feel for you.  But it will have to do sweet girl.  Happy birthday, can’t wait to see how God continues to reveal His deep love through you this next year

Her new song

I was stalking up on camp food essentials.  Ran into a friend, they asked what I was up to for the Memorial Day weekend.  I admit an eyeroll most likely was attached to my follow up answer.  CAMPING…in the great outdoors…with campfire and smoke…bugs…air mattress…no showers…nature…

After she saw and heard my heart, without missing a beat and a huge smile on her face she said, “oh you are a princess”.  Without missing a beat, I said “you do know what Sarah means? Princess”

I am not shy about who I am or how God created me.  Some he made to love the great outdoors, getting dirty and stinky, cooking food over a fire pit, finding critters in your sleeping bag or having a gun or bear spray on you when you want to walk in the woods.  Some he made to love hot daily showers, pillow top mattresses, a straight iron, electricity.  Each to their own.

This year we had accepted that we were not going to church camp.  There were reasons that came and we adapted and moved on.  Then a month out, we realized camp was going to happen.  It was hard to spend months with the idea that we would not be enduring 5 days off the grid to then all of a sudden have to accept it.  I even quizzed the kids, asked them if they REALLY wanted to go, already knowing the answer, but still wanted them to have the out, praying they might see it in the same light as me.  But as each little set of eyes lit up, as memories came flooding of the last few summers at Naha and as God was quick to remind me of what he does every time we go, I found myself developing the packing list shortly after.

Anytime that I have to do something that I am not all that thrilled about doing, but still see that it is through God’s master plan I am doing it, then I ask myself what is the WHY for me?

It was cold and rainy on our first day, I was given the opportunity to kayak in with bean and avoid the 2+ mile hike with 50 plus people.  We got soaked.  We saw seals.  She ate Cheetos so that I could carry on a conversation with our kayak buddy.  

When we arrived and saw the green cabins with the massive green lush lawn, I literally felt my soul leap with anticipation.  Wait, what? Could it be, my soul actually longed for this place that has bats in the ceilings, mice running in the kitchen?

Veil and I walked up to the main cabin and met smiling faces that seemed like our own little welcoming party.  The place was just as I remembered it.  It provided a strange comfort to me.

When the campers all arrived from their hike, we all began to unpack and get settled in our new lodging for the next 5 days.  Just like riding a bike, I watched those of us who have been coming to Naha find our well-known rhythms.  It was like a dance, the camp was filled with laughter, kids running and at times hopping because they were so excited.  Camp staff’s reactions matched if not were larger then the kids. This place has such a unique hold on one’s soul.

Leading worship, watching kids sing with abandon, unashamed of their heart’s cry, are the moments any worship leader will make a point to embed in their memories.  There was one worship service that the kids were literally shouting “JESUS” at the top of their lungs that I thought to myself, not even the rocks have a chance to cry out.  Child like faith.  We “mature” believers must witness it from time to time to remember what it was like to have enough faith to move the mountains.

Richard and I signed up to do the nature hike with kids.  Each group was different.  Each we gave them different assignments as we encouraged to look for God in nature.  But a few groups we taught to listen for God, away from the noise, away from the distractions. We asked them to say “speak Lord, I am listening” and then sit in silence.  When the silence ended, we asked them what they heard.  Oh, my goodness.  The youngest group and the oldest group had concrete things, specific words that God spoke over their individual hearts.  It was surreal to witness.

The days were filled with little bodies beginning to tire from the long days of playing and late nights.  Their little minds and hearts were being challenged to understand who God is.  Our camp director said that camp is equivalent to a year of Sunday school in 5 days.  Wow.  Watching groups of kids holding bibles in their hands, hear little voices read his Word, watching how the souls entrusted to the counselors were doing a work within the counselors themselves was inspiring.

I realized that camp was coming close to ending, I in my heart still was asking God, why did you send me?  Did I feel used?  Did I feel like I came and reached his purpose?

I was standing back, listening to our camp director deliver one of the most powerful salvation messages I had ever heard.  Memories of my years going to church camp were weaving in and out as she shared.  All of a sudden, I looked and saw that the wiggling bodies, the chatting mouths, the kids that always had to be separated were stone still.  You could have heard a pin drop.  I heard the Spirit say “PRAY NOW!”  so that is what I did, I prayed for seeds to fall on fertile ground.  I leapt to lead them in worship, couldn’t wait to give God glory with them.

When the kids were dismissed, I went to put my uke away, when I all of a sudden recognized two little feet that were standing close by.  I was met with a soul that was at the brink of breaking.  With tears fighting to fall, a lump in their throat, they uttered these words.

“I know you are studying to become a pastor one day; can you please tell me what is going to happen to you guys when I go to Heaven”.

“what do you mean, Ez?”

“when I die and go to Heaven, what are you guys going to do”

 

There was not enough air in the room to fill our two sets of lungs.  There were not enough words to form to answer her searching heart.  I stumbled over my words.  I talked about Ken.  How he is in Heaven and we are on earth, still living life, trying to live out his memory and looking forward to seeing him again. I reached for her, she kept her distance.

She nodded, tears waiting to fall and quickly left my presence.

The world was spinning, my heart was racing.  I ran to our Children’s leader/Camp Director.  My words were laced with grief as the tears fell from my face.  I told her what happened and without missing a beat, she told me she would go and talk with her.

After collecting myself, I witnessed my little warrior cry as she faced her understanding of mortality and what her family will do when she goes to be with her maker.  I realized in that moment that was my WHY.  Camp this year wasn’t because God wanted to do something in me, it was because God wanted to do something within Ezzy.

I know that her talk with our Children’s leader changed something in her.  I saw the heaviness in her soul lifted and she had joy about her.

Sometimes we can be so focused on ministering to the kids that are lost, who need to find Jesus.  Sometimes we can forget the kids who have verses memorized in their hearts, have accepted Jesus is Lord, can be in need just as much as the others to understand the concept of salvation and eternity with God.

The fears of life going on without her, the fears of how her family will cope when she is gone all came spilling out of her.

Spilling out of her in a place that has been revealed to me as a touch of Eden.

God orchestrated every detail.  He met her little heart that has been asked to face so much the last few months.  The weeks spent in the hospital, the scary procedures, the months of school missed, the daily reminder she is different then everyone she knows.  It all came crashing.  It all came bubbling up in a place where she was removed from the loud world, we live in. The reality became apparent that each of us in our family went straight back to normal life after crisis hit, leaving no time to wrestle with the hard stuff that happened for each of us.

I am ever grateful for the chance that our family had to go.  Ezzy can’t go to camp without me, I have to be able to do her therapies with her, get all her extra care done on the sidelines, things people don’t think about, I also know the warning signals when things are going to go bad with her.  Which means her little sisters have to tag along.  We are blessed that there were many hands and willing laps that didn’t find her sisters a bother and actually told us they are so glad we come each year.

I read this psalm the other day and it has been sitting with me as I process what took place less then a week ago.  I believe it is a testimony that Ezzy will be able to sing.  I believe God did a work in her and met her in a way that has grown her faith and understanding of what eternity means with Him.  She sees the world different then others and in return God met her in a way that she could receive his truths.

Naha, yet again you hold a special place in my heart.  I know without a doubt that my girl will look back on this summer and recall the time that her fears of the future, the fears of her life with CF were met with HOPE.  How her soul has a different song to sing now. 

“When I open up in song to you, 

I let out lungsful of praise,

My rescued life a song”

Psalms 71:24

 

In sickness and in health

I struggled, wrestled and cried in the early morning hours of our wedding.  I had been out late the night before with my girlfriends and thought that I could stuff all the rumblings inside.  I learned that they had a sneaky way of pouring out in the early mornings.  So instead of waking some of the bridal party that was sharing the same room with me by my tossing and turning, I decided to slip out quietly to the living room.  The rain was pouring.  On my wedding day.  How quickly the sun that had shone the day before disappeared.  I remember asking myself “was this a sign?”.  Ha!  I wasn’t raised to believe in signs.

I pulled a raincoat over my pjs, found my running shoes by the door and snuck out.  The thoughts coursing through my brain where to big and too loud that if I wasn’t careful would wake a sleeping house.  I walked all over the neighborhood.  In fact, as I am sitting in my house now, I am recalling walking past this very house that morning…how crazy to now realize I am living in this house.  I remember flicking away the heavy branches, dripping with rain, away from my face just across the street

4:30 am I found out was God’s hour to get my attention. Something I would be reminded of many years later.

I was going against everything I had been taught.  I was choosing to marry an unbeliever.  I was walking into a situation that some could say was doomed before we said our vows.  But even in my running from God, even in my disregard to make Him a priority in my life, I was never far from His Spirit.  Even as a child, I can recall specific times the Spirit has led me.

That morning was no different.  I was told I was free to make the choice, that God knew the deep love I had for Richard, but that I had to fully admit to myself and God that I knew it was not going to be easy, if I chose to marry him.  There would be no running back to God and blaming him if things fell apart.  You see, God is God, but He is also a Father of free will.  He showed me this that morning.

June 17, 2006.

We said our vows in a room packed full of friendships from our childhoods, people who had known us when we were babies, family from afar and friendships we had made in our adult years.  

I was calm, quiet, I didn’t have a lot to say.  Richard on the other hand couldn’t stop chatting, had tears flowing from his face, but when it came time to say our vows, we said them to the best of our abilities not knowing the depth of what they would truly mean years down the road.

Today, we celebrate 13 years of marriage.

By God’s grace and His alone.

I won’t go into the history of our marriage, there are other blogs you can look up about our marriage if you want to.

Today I want to share what hit me a few nights ago.  We crawled into bed, after our nightly date on the couch.  Babies tucked in bed, big kids still playing in their rooms enjoying the freedom of summer nights.  I was tired, not feeling well.  I had shared with him in a prior conversation that I felt like some of the old symptoms I have dealt with on and off for the last year were beginning to come back.  But this time, there was a self-awareness attached to the situation.

You see, April 2018, on good Friday, I found myself getting a CT scan.  Excruciating pain that was keeping me up at night and a found myself barely able to walk without feeling like I was going to vomit led me to that point.

A nurse called later with prescriptions to be picked up and confirmed that I had kidney stones.  The chronic heart burn that I had been dealing with a few months’ prior wasn’t getting any better either.  So, I was thrown some meds and hoped things would get better in time for our Easter service.  For all you men that say you know what childbirth is like because you had stones…well, coming from a woman who has delivered 5 babies…NO you don’t.

What I didn’t realize is that things were just getting started.

A few months later I was diagnosed with ulcers.  I lived in a chronic state of pain.  I could point with my eyes closed the spots where the pain resided.  My diet drastically changed.  I soon realized what my body could and couldn’t handle.  I was angry, frustrated.  How could this be happening, I worked so hard to be healthy.  My purse looked like a mini pharmacy, I never knew when I was going to be plagued with pain and also lived in fear that more stones would show up.

Then something broke in me.

Like completely broke.

I found myself, hyperventilating in my front yard, vision blurred and wanting to crawl out of my skin.  I couldn’t gather my thoughts and most of all felt like a foreigner in my body.  I called Richard and work and told him something was wrong.

For the next 6 months, I learned what it meant to have a panic attack.  I learned how debilitating they are.  I learned that they are real.  I learned that they were not going to go away.  I learned that after years and stuffing and stacking trauma in my life, my body/mind said ENOUGH.  In my journey this year, I also found its common for caretakers of chronically ill family members to have PTSD.

There were nights I just cried on the couch next to Richard telling him, I don’t know what is wrong with me.  At first, I recalled him looking at me with an investigative approach. This was not the bride, the woman he had married.  He was the one to show emotion, he was the one to be irrational, he was the one to flip flop.  Instead the black and white, calm, reality driven woman he married was replaced by a fragile broken soul.

Anxiety became my companion.  I literally learned to survive on less then 4 hours of sleep a night.  4:30 being my mind’s best time to spin like a top.

A few months later came the diagnosis of a hernia in my stomach.  More meds, more changes, more side effects to deal with the meds.  Nothing was normal anymore.

I was barely keeping it together.

Through counseling, through meeting with my spiritual director, through talking with my pastor and through going through the School of Soul Formation, I have been learning how to quiet my restless soul.

It has not been easy.  I was ready to walk into the doors at behavior health and get over my pride and say, “I don’t care what you give me, just give me something to make the anxiety go away”.  It was through walking with a small group of people that I could trust, that I was able to start to find help.

As of now medicine has not had to be part of my story.  But I am also going to say, that if it had/has to be part of your story or a story of someone you love, its ok, God gave medicine for a reason.

What I did realize a few nights ago, is that Richard is part of my healing journey with my battle with anxiety.  That the man that God told me, it was up to me if I wanted to walk a hard road, has been the very man to help lead me gently back to health, back to me.  The road we walked has been very hard, things could have been very different had Richard not responded to his own personal call from God.

After months and months of little sleep, he watched the normal lively parts of me die, my capacity to handle the simplest of things, became the very things that left me white knuckling my day.  He had to carry me and yes at times, my duties, while working his full-time job.

Some of you might be reading all this and saying, “what?” “how” or “I would see you and you looked just fine”.  That’s the thing about anxiety, anxiety is hidden so well, especially in a society that sees mental health as a taboo topic.  I learned to hide, stuff it even more in public settings, which usually large groups of people sent me in fight or flight on a regular basis.

Prayer has become the only thing that was holding me together.  To say that my prayer life with God has changed is an understatement, it has transformed.

But what I do want to say is that in all this, the man that I pledged my soul to has held me together as well.  Has loved me even when I was not who he envisioned when I said I do.  He has served me when I was unable to pull myself together and be present, while fighting the battle field of my mind.

I wish I could tell you my battle with anxiety is over, its not, but as I am doing the soul work that God has asked me to do in this desert season, as I am facing trauma that I told myself that I would never deal with, I am learning that even in this CRAPPY season, God is still in the midst of it, caring for me.

How do I know?

Because last night, like all the other nights the last few months, my Husband, my partner, my lover, my best friend, my companion, my protector, my dreamer, my silver fox.  Last night, he laid in bed next to me, read scripture over me and prayed for me. As he makes sure that the word of God is the last thing my mind processes, as he entrusts my soul to God, I am finding minutes that were stolen from me over the last year slowly come back to me in my sleep.

This is part of our story we never thought we would have, but then again we didn’t think we would be living in Ketchikan, we didn’t know we would have 5 kids, we didn’t know Cystic Fibrosis would shake our foundations, we didn’t know the ministry field would be a calling for me, we didn’t know that he would be where he is now in his career.

But if this has to be part of our story.  I am really thankful to have found someone who has taken his eternal vows seriously.

To love me in sickness and in health.

13 years with this man!

A leader in the making

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

A man of prayer

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

His ending, not mine

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.

Piece By Piece

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.

Faith isn’t Faith until it’s tested

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…

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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

 

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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.

 

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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.

 

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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.  

 

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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.