Veil Eden

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“BEST day EVER!!!”

I didn’t realize a day that I would have deemed “subdued”, was not the word that I kept hearing my tiny utter.

Waiting for the day that she would turn 9 and finally open presents that she had requested was not as easy as she thought it would be.  But that is life as the youngest of 5.  

Our little caboose

Veil has spent her days watching everyone else do things that she is told she is “too small” or “too young” to do.  She watches her sisters be able to do ALL the things that she wants to do.  How hard it has to be to watch 3 older sisters do things before you.  She is 9 going on 16 if you all ask us.

Her request for her birthday day was to play at a friend’s house, go to open swim, shop at Silly Munchkins (our local toy store) & eat crepes with her family, every single sibling’s presence required (summer months with 3 teens…our dinner table shrinks and ebbs and flows every night…)

Her requests sum up how Veil loves and is wired to be loved in return.

A playdate with some friends at their house, not a huge gathering, but an intimate, familial setting, where you can play dress up, do crafts or simply have a tickle fest.  Her cup gets full when she has a few close people near her to play with.  

Going to the pool was a reminder of the way that Veil will face her fears, because she has found out how being brave makes her feel so confident.  So often Veil’s strength or ability to do hard things will get questioned or not offered a chance to display her abilities.  I think she needs to wear a shirt “Tiny & tough”, so people stop assuming.  Veil talked about the diving board and wanting to go off it, we talked for days about it.  She wanted to know that it would be ok and fun and what to do as soon as she hit the water.  We talked about how brave she is.  Watching her big brown eyes lite up and look at me as I spoke life over her, “you are brave” “you can do it” “it’s going to be so fun!!”, was a gift for me too.  Watching your last child hit milestones…be still my heart.

Crepes and family, informing me that we would not be going to a restaurant, because she just wanted to be home with her people, that’s Veil.  Made my heart smile.  Her siblings, all of them around the table, it’s her happy place.  She will move from one sibling to the next.  Interacting with them each differently.  While watching each of them torment and baby her at the same time makes the table plenty full for us all.  Her world is about to start shaking up as the first sibling is graduating this year and soon the table will start to have less older siblings there.

Veil, she is the gatherer of the family.  Once she finds out the plans for the day or what we are having for dinner or something that needs to be done, Veil goes on mission as the family communicator.  Not because anyone asked, but because she wants everyone to know so we can all try to be together and on the same page.  

When present time came, Daddy surprised the little bean with probably one of the best presents to date.  If you don’t know, our tiny LOVES pandas.  She sleeps in a sea of pandas every night and they continue to overflow in her room.  One day, running errands with her dad she locked eyes on a life size panda for her.  After view the price tag she was informed it wasn’t going to happen.

We then spent WEEKS hearing about this said panda.  Finally, we presented her the option.  It would be her one gift from her siblings.  Not multiple gifts from them.  I saw the little wheels turning in her head.  I thought the conversation would end.  BUT then, a few days later, that little tiny walked up to me and said it was worth it, she wanted the panda and she already named it.

Richard bought the panda and hid it at my work, because where else would you hide a life size panda?!? When she visited 3 Bears a few days later and saw that it was gone her whole world was crushed.  Little did she know.

Watching her surprise as she watched videos of the panda following her dad through town and eventually making it home, sitting shotgun in our car…priceless.

Her other request was a sweatshirt from the concert we attended in April, it was sold out and she reminded me on the regular to order it for her.  If you ever want to be reminded of something, just ask Veil, she’s like an elephant.  She also can sing all the words to most of Forrest Franks’ songs.

Veil is the best cuddle buddy and has made it a nightly ritual to curl up in our laps.  You won’t find her sitting alone if she can help it, if you’re sitting watching TV with her, you are absolutely going to be in each other’s business.  She runs the home and makes sure that people take their medicine, leave in time for appointments and the animals are fed and disciplined appropriately.  She has decided that she is going to be a singer like her mommy when she grows up.  

Veil Eden,

My caboose.  I am reminded how tiny you are when I hear your voice on the phone.  I look forward to your soft voice in the morning, greeting everyone with your gentle spirit.  You have each of us wrapped around your finger.  Heaven help the person that tries to ever cause you harm, because the 6 bodyguards you have, we got you.  We pray that you always find comfort in knowing that God is the one who makes you mighty, no matter your physical size.  I pray that God protects and cultivates your tender-hearted mercy that you have for people who are mistreated and animals.   Veil Eden – we never knew how much we needed you until we met you.  Thank God He gives us more than we ever think to imagine or ask for.  We love you 9 year old.

Ya’el Ariel Ruth

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Ya’el Ariel Ruth

Ya’el – Hebrew meaning “mountaint goat” (In Hebrew culture, the mountain goat is a symbol of agility, bravery, and independence)

Ya’el…boo as many of you know her by, Ya’el, my not so little mountain goat is 11 today.  I watched her walk up to her Naani last night and listened to amazement at how Ya’el is looking at her at almos eye level.  

I had to remind Richard recently when the selective listening, the glossed over eyes when being told to do something for the 40x or just the rapid changing of emotions Ya’el can display in a day…we have a tween on our hands.  I had to remind him and yes me too, that we have done this 3 other times and we CAN do it again…

The mountain goat – is known for its agility.  Now I have never had the chance to be up close to see a mountain goat’s agility, bravery & independence,  but I have been able to see them through binoculars one time Richard dragged me up a mountain.  

1. Agility – the ability to move quickly and easily

Over this last year, I watched my girl gain more and more confidence in her favorite sport.  Her coachability as well as her innate God-given insight to move quickly, has garnered her lots of respect from other coaches.  There were a handful of times I would hear the group of dads and others who have their eyes on her groan, cheer, challenge the refs calls and stop her after the game and tell her “good job!”.  There is something about watching this young girl in motion

2. Bravery – courageous behavior or character

I once heard someone say that the bravest people they know are the ones that deal with anxiety on a regular basis…I didn’t know that would be something I needed to start reminding myself of.  To watch a child that conquered the steepest waterslide in the Bahamas (before her dad or older siblings) all of a sudden not be able to play soccer or go to school or no longer want to eat at a restaurant this last year has been challenging.  Yet, as we have been using all the tools, prayers, mindfulness & therapy.  I have been challenged to see that it was in her BRAVERY to be honest with her Dr & therapist about the things she can’t control thinking or feeling…that she is one of the bravest people I know.  How many times have you adults…not been honest about your struggles?  I watched her state her needs and I watched her bravely start going to therapy.  Be still my heart.

3. Independent – free from outside control

Oh boo…independent is definitely a word I would use for you.  My child who isn’t afraid to not need the crowd.  Who can see when friends aren’t loving well and decides to not get involved.  My child who when she is peopled out will go and disappear in her room, filling her song book with more and more songs to sing on her ukelele or just sitting in the quiet play by herself.  Ya’el knows the importance to know herself – before she tries to know others.  Because Ya’el is an empath…she is going to need this skill to know when to tuck away, after caring for others and their needs.

Ariel – Hebrew definition “lion of God” (signifies being a strong, powerful, and courageous individual who defends their beliefs and is a protector of the righteous)

If you want to know what it feels like to be protected by boo.  Just stand in her presence.  God has gifted her with discernment & mercy.  This are Holy Spirit empowered gifts and when she uses them, watch out.  Cold hearts will melt when she holds your hand as you grieve bitter tears.  Wounds of abandonment and neglect start to be tended with healing oil as she hugs you tight.  Her prayers – remember, “The earnest prayer of a righteous person has great power and produces wonderful results” (James 5:16), they go straight to the Father.

Ruth – Hebrew definition “friend” or “companion” (The term “friend” in Hebrew is often associated with concepts of loyalty, affection, and mutual support).

1. Loyalty – loving kindness & faithfulness.  If you have earned a spot in Ya’el heart.  She will carry you with her.  She doesn’t let others get in the way.  Even if she sees others doing the opposite.  She remains loyal to those she loves.  She also doesn’t leave you behind if you’re in her pack. 

2. Affection  – if you haven’t yet received her hugs…then you are missing out.  If you want to know what a snuggly boo is like, just create space for her to lean up on you and she will be in your face in a matter of seconds.  Personal bubbles are just a suggestion until she knows that you will receive her affection. 

3. Mutual support – you are not alone when you’re with Boo.  She doesn’t sit back and watch others struggle.  It’s in her very DNA to show up and give what she has.  She will hold your busy child so you can talk after church with your friends, she will come and rub your back after a long day and say “thanks for all your hard work”.  

Somehow, my 4th born has entered in into the tween years.  You will see her hanging at the ball field with her friends and not her family, you will see her trying all the current styles until she finds her own and you WILL watch her flourish and grow this next year as she cotinues to be the person we have known her to be.

Ya’el Ariel Ruth, I pray a blessing over this year to come, that you will continue to walk in the paths of righteousness that God has for you, sure footed in all that He directs.

Just One More Year

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“What is it like, now that your baby boy is 17? Just one more year mama…”

The first question that Kyre asked me when she saw me this morning.  I hadn’t quite registered the day, I was still trying to get past the normal Sunday morning wrestle of quieting my introverted soul.  Sundays are so peopley…

“Just one more year”.

I remember reading this obnoxious book that a college friend got me for Cayden’s baby shower.  When I opened the present there was a collective sigh when other attendees saw the title of the book.  However, this was a book that had never crossed my path.  Which was surprising given how much time I spent in early childhood development, in my college years.

I was reassured countless times that I would love this book.

I remember reading the book and tossing it to the side.  Richard was perplexed with my dislike for a book (I have been known to become a shell of myself for days when I have a book in my hand).  This book, this book rubbed me the wrong way.  How could anyone love this book, let alone think that I might like it…?

Richard laughed after he read the book and I decided to put it to the side.

It wasn’t until I had a day with my curious, problem solving, independent 2 year old Cayden, that I found myself with the book placed in my lap.  His big brown eyes and his chubby little hands were not giving me any other options.  I sat down and pulled him into my lap and read the book to him.

The book that I decided was ridiculous…now had a deeper meaning to me, something my soon -to-be mama heart, couldn’t understand 2 years prior.  But now my veteran mama heart, with 2 under 2 could get.

Just one more year…

The dreams we’ve listened to, the conversations he would have with us about the intense vocations his little soul thought would be cool to do. The things he wanted to do when he grew up and no longer lived with mama and daddy.

Those are no longer childish conversations; they now require us to stop and treasure the moments he comes to us.  When he opens up his ideas and dreams to us, we are fully aware they don’t come like they use to when he was 7.

Now how to invest, the economy, politics, “how to” videos or logistics of where he will live next year are happening.

It’s not a Tonka Trucks that he asked for this year, instead it was a real truck that he drove away in, after placing the check in the seller’s hand.

When asking for forgiveness in a major mess up on my end and to be honest, lack of self regulation, I got to see the man he is, the man I prayed he would be.

I couldn’t believe it, how quickly he extended forgiveness.  Verbally and emotionally.  I sat in a moment of disbelief.  It took me by surprise.  I had acted at my worst, I was ready for him to let me know my failures, to give me the silent treatment.  (Things from our past that creep in when we parent, right?).

When I asked “why are you not going to hold this against me?”

His response was “we forgive, we are family and that’s what family does”

So simple, yet so healing for me to experience and see it be a truth formed in him.

There are a lot of things to still sit and listen to, we have one more year. But if this next year is like the prior ones, it will be over before we know it. We are doing our best to pause and take these moments in.

Richard and I recently talked about goals and things that we want to leave behind for our kids.  Like any parents, we would love to leave behind generational wealth.  As we have invested in their cultural wealth, by choosing to raise them in their culture, we will leave behind clan bearers and clan protectors.  But more than anything, we want to see a spiritual legacy.  What will our children do when they raise the next generation.  What values will they take from us?

Raising kids in a small town is a gift, we always get reports of our kids.  Good and bad.  But man I sure love the good ones, when I get to hear about who Cayden is in the community.

Cayden your quiet demeanor is a gift.  I know it’s part of who you are as a native man, but I see it as a gift God has given you.  Because when you speak, you hold the room, because you don’t waist words.  The natural favorabilty with people is because there has been an anointing over you have a heart like King David, a man after God’s own heart. 

You cast a big safety net every where you go, because you bring the light.  Walking with you in the dark after a Zach Bryan concert to find our ride, never made me question my safety.  As much as the cheer girls drove you crazy, I know how much you earned their respect by how you treated them.  Listening to Veil call you while you were gone this last week and how sweet you were to her…I know I am not the only one who sees your tender side. 

Even your surprise tattoo was well, you being you.  A legacy maker. You are a good man Cayden Harney, even if I told you that I didn’t want anymore ER visits and you still didn’t listen…I swear son…”

Happy birthday William Cayden, 17 years old!

I’ll love you forever, I’ll like you for always, as long as I am living my baby you will be…

Grace

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Gracie

I sat across from you yesterday and for what felt like eternity…I dug deep to those frantic, jumbled and tender memories of your tiny soul.  As pictures of your scrunched up little face, with piglet tucked in your arms from our Disney trip or the countless times I would find you in a princess dress and heels, I couldn’t fathom that you are 13.

I can’t help but wonder what you will say to your therapist one day, as you decompress the family of origin stuff that adults need to face, to find healing.  You are smack dab in the middle of 2 sets of siblings.  When I read birth order books, you yet again fit into the mold of the middle child, demeanor, attitude, wit…angst.  But something I think we take for granted is that you are the younger sibling of a child with a chronic fatal disease…which has shaped so much of who you are.  To top it off, you also had a mama that went from being home all the time with you, to me starting to work outside of the home, while working for the church and going to school.  

The gift I am learning is that looking at the formative years, they explain so much of who we are as adults.

I get a front row seat to watching you, Kyrene Grace, grow into a woman.  Not just any woman but an emerging woman that God sent my way to heal some of my wounds.

It is safe to say Kyrene, that you and I are different when it comes to expressing ourselves.  I wonder if you get frustrated at my calm tone when I am talking, because you speak with so much feeling.  When I need to tuck away and process inside myself, you on the other hand need to verbally say all the things, to find out how you really feel.  You love to perform and a crowd can give you life, I tuck away in my room most Sundays and recover like a true introvert does after being front and center.  You will boldly go up and say what needs to be said to someone, when I will fumble over my words.  Your compassion meter is ALWAYS up and running, when mine comes from daily surrender to God because my “suck it up buttercup” mentality can get the best of me.

In parenting you and your siblings, I have spent many hikes bringing you all to God.  I am painfully aware that I have wounds from my childhood that have shown up in my parenting.  I remember lamenting to God one day about the complexities of having so many emotional girls in the home. Being a person that tries hard to not ask people to manage my emotions ever.  On that hike, I heard a tender whisper.. “Sarah, I gave them to you, to heal you”.

The Lord recently showed me this, through an interaction with you.

It was a tense morning of delightful miscommunication with you.  You were operating at the best of your 7thgrade brain’s ability and I was operating at my default rushed morning mood.  We collided.  You expressed loudly, I simmered inside.  The ride in the car was painfully silent.  Why would I describe the silence as painful?  As someone who LOVES silence, this was painful.  I was all too aware that I had modeled something that I wanted to break the generational cycle in.

Pride…my companion that comes when I am faced with admitting that I did something wrong.  My fear of being perceived as wrong is what will drive me to shut down and not say anything.

But then there was God…whispering, not shouting at me.  Inviting me, not demanding my compliance.  Leading me down a new path, instead of dragging me.

But then God gave me you, Gracie, to yet again learn what grace really means.

By the GRACE of God, I leaned into the painful silence.  I realized that I had caught you off guard, because you have grown accustomed to seeing me shut down, when your feisty self gets the better of me.  When I asked a clarifying question, regarding the situation that set the bomb off in our home, I soon realized that I was to blame.

I read into her words and tone.  I let my own junk cloud what she had tried to convey in the beginning of our interaction.

When I realized that I had misunderstood her.  I quickly apologized.  She then explained what was happening inside of her that caused her to communicate in the ways that she did.

When the ride was over.   Apologies were exchanged.  Eye contact was made.  I love yous were given, followed up with a hug.  But more than anything, that day Ky, I felt a piece of healing enter my heart.  I was met with Grace, when I admitted my shortcomings.  From you a child.

God was right, He gave me you and your siblings to heal wounds in me that have been around since my childhood.  

By Gods GRACE, He gave me you.  Someone who has been given the gift of discernment – who can see people beyond the outer shell and get to their core.  Someone that loves to be silly and laugh and I will often have to close your door when Junie is over because the volume you ladies hit is unreal.  Someone that already has the hunger for righteousness and studies your bible in the morning, because you have found that is where true strength comes from.

Kyrene Grace – we are so thankful for the unmerited favor that God has shown us, not just through giving us Jesus, but giving us you.  

Yesterday morning, I woke up with this song on my heart as I thanked God for the 13 years of life He has given us with you…

Grace, grace, God’s grace,
Grace that will pardon and cleanse within
Grace, grace, God’s grace,
Grace that is greater than all our sin

Happy birthday 13th Birthday Gracie

Boos in double digits!

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Do you ever have pictures that stand out in your mind?  Maybe it’s a picture of a big moment, a painful moment or just a moment where you knew life was going to be different after it…

I have some pictures that stand out so clearly when it comes to this little soul…who I probably need to stop calling little since she is officially in double digits!

Ya’el Ariel Ruth is 10 years old

My best friend was there to document her siblings meeting her in the hospital and we still can’t get over how awake and alert Boo was then…taking the world in around her, feeling, sensing, exploring

Boo was seriously our sucker baby.  The easiest transition to our chaotic home.  She entered in and found her spot.  She was complete and utter Joy and she had her daddy wrapped around her chubby fat fingers.

I will never forget when she sat up in her rocker, showing me that she was no longer going to sit back and wait to grow up.  She had 3 older siblings to catch up with.

Her laid back personality, mixed with gentle playfulness made our days, months, years pass by, with the full awareness that we all rely on boo for different things.

For daddy – boo is his reminder that human touch is good.  Human touch is needed.  Boo and her love language of physical touch can get on her daddy’s nerves…who does NOT have physical touch as his love language.  However, I have watched her go to him and touch his back when he has had a hard day at work.  I have watched her lay her head on his shoulders when he is stressed out traveling and I can see his tension go down.  Boo makes sure that his love cup gets full whether he wants it or not.

For Cayden – boo was his first real baby.  Boo was the baby that he would take from me and tell me to go and get a shower or to keep sitting at the table with my bible study and coffee, because “I got her mom!”.  Boo is constantly helping Cayden remember that feelings are real…they are felt deeply by people and that being sensitive can be a good thing.  Boo will challenge Cayden to practice the softer side of him that we all know is in him.  Oddly enough…Cayden will stand up for her when he thinks I am being too harsh on her…not something he will do for every Harney sister!  Our layover in Seattle, from our recent Bahamas trip, had the two of them twisted together like a pretzel.  Cayden had us all laughing as he told us that he woke up to boo twisted in his legs and she had him in a full headlock…while they were both sleeping…too which Veil responded in perfect timing… “now you understand why I tell her to stay on HER Side of the bed”.

For Ezrah – boo and her carry an important part in our family.  They are the 2 little mamas.  Ezrah and boo will sometimes knock heads over how I should be parenting Veil, how I should be dealing with the naughty dog or what I am making for dinner.  I have watched boo challenge Ez to do new things.  Ezrah has had to face so many scary things, but when boo leads the way in a new scary thing…Ez will follow after her…case in point the “leap of faith” slide, that I swore off and never tried.  Boo helps Ez remember the importance of having fun, even when things are scary or hard.

For Ky – boo and her…well they are still a work in progress.  Boo stole the throne that Kyre Grace was proudly sitting on.  Boo’s cuddly, easy going spirit, has challenged Ky’s intense, passionate, self-reliant spirit.  I think that Boo’s easy-going nature, that is so sure of herself, has helped Kyre realize that its ok when things don’t always work out the way they should.  Boo helps Kyre still be a kid.  Boo can get toys out, craft stuff and entice Ky to sit with her at the table.  

For Veil – boo is her best friend.  Veil loves Boo more then me at times…and honestly I am ok with that.  I have seen Boo parent, correct, love, cook, dress, help with discipline SO many times when it comes to Veil.  Yes, I have even had to tell her to back off and please not tell me how to parent Veil…  Boo creates imaginary worlds for the two of them to play in.  I will find them laughing till 11 at night, they will be building couch tents on rainy days or just singing funny songs while they swing on the deck.  Boo is a true testament of “greater love has no friend, than a friend that is willing to lay down their lives for another”.  This is boo.  She loves Veil so fiercely and the best part is that veil KNOWS it.

For me…where do I start?

Boo – my rainbow baby.  The little soul that would come after a heartbreaking loss.

I had more moments on our recent family vacation – where I realized boo and I are so similar.  My mom tells me that, as she spends lots of time with them in the fringe hours of Richard and I working.  Boo needs quiet in the mornings, she doesn’t have a lot of words to say, but don’t think her mind isn’t going.  She is just trying to form sentences from all the thoughts that are happening.  Boo loves the water and sunshine, it was hard to peel us away from the pool. Boo needs time to process changes so she can adapt and make plans.

Boo thinks it is hilarious that she is the darkest Harney…and lives to point out that she is darker than me and even though I am more native than her. 

Boo will give you the tightest hug and when she lifts her head and looks up at you with her dark black eyes…you melt.  Really…there is so much love in her eyes for you that it can take your breath away.  Boo…thanks for hugging me and holding me when I need it the most and can sometimes be too prideful to ask you to hug me in my broken moments.

If you are hurting, the weight of the world seems like a lot…boo can see it and feel it from you miles away.  I still to this day get stories of how Boo comforts even adults when they have had bad days just by the way she interacts with them and loves on them.

Boo is so serious and I should know…she is just like her mama…However when she is ready to have fun…she is just like her mama too.  Watch out, she loves to play tricks on you, get your attention so you will respond back to her and she will laugh in ways that make you laugh, because its freaking PURE JOY!

Ya’el Ariel Ruth

You’re kind of a big deal…I hope that you know how much you are adored by us and many others that have discovered what an amazing human you are!

Happy BIG 10 Boo

Make A Wish

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When you wish upon a star…I can hear the little green cricket singing to Pinocchio, just like I heard it the first time as a small child.  I would continue my childhood believing that a wish is something that you have to have courage for. Courage to hold hope in a wish.

In my adult years, the term wish would change in language for me, but not in its meaning.  A wish now is an act of faith.  Faith – the act of believing something is possible even without any assurance.  Faith has been such a painful journey.  Learning to walk by faith would come in the most heart-wrenching ways 14 years ago…

Cystic Fibrosis, 2 words that forever changed our lives.  The emergency life-saving surgeries, the hospitalizations, the IV scars, the missed ballet recitals, the 504 plan, the dealing with nonstop medical paperwork, the weeks of IV Meds, single parenting, isolation, countless DIOS (bowl obstructions) episodes, NG tubes, the hours of chest physiotherapy, the “sick” plan, COVID…I could keep going

Little did I know that this last year would be a a year of firsts as we journeyed as parents of a 14-year-old beautifully, headstrong, competitive, smart, and sassy young woman with cystic fibrosis.

TRIKAFTA

A gene therapy medication that Ezrah started taking a year ago has changed so much of her story

Ezrah has not been in the hospital or had a major lung infection since starting this gene therapy.  We have had countless colds and sicknesses in our home, that would normally knock her out for months, making her miss so much school and deal with rounds and rounds of antibiotics.  But what happened?  Nothing?  No infections.

Her lung function has increased.  

She is growing and no longer stalled out on the growth charts like she was for 2 years before starting TRIKAFTA.

We haven’t had to follow a sick plan in school in over a year…ask all her teachers in elementary school…they will all tell you of the months Ezzy missed school each year in their classes.

We found out last year that Ezrah was approved for her wish, thanks to the Make-A-Wish Foundation (MAW).  It was something we had known ever since her diagnosis of Cystic Fibrosis.  But it was something we felt she should wait to do until she was older and understood the gift that was being given by MAW. We felt it was time to finally do this experience.

Last week we returned from our trip to the Bahamas.  Atlantis Island to be exact.  Ezrah’s wish was to go visit their outdoor aquarium and waterpark with her family. Some of you might remember the weeks every year she has had to sit out while her class had swim lessons (a vital program for our coastal island kids).  

Every single moment of the trip to Nassau was magical and God orchestrated and ordained.

Our MAW rep Dorothy was there to help us every step of the way, getting 7 Harneys passports.  She assisted us along the way when we ran out of space to put all the family members’ names in documents…because you know…the standard family isn’t larger than 5 people…she was just a phone call away when I misplaced our lodging documents during one of our many legs of our journey.

Veil made sure that the family was given a daily report of how many more days till we left for the Bahamas.  Being the youngest of Harneys, she feels the pain of people coming and going for work, school, and fun trips.   Veil’s excitement was everyone’s focal point as we traveled with our pint-sized boss who kept us all in check as she was waiting to see what the Bahamas looked like in real life.  

Alaska airlines and their stewards and stewardesses were so kind to our family on each of our flights.  It was a day and a half of travel…red eyes still suck, even when you don’t travel with babies anymore, btw.

To say that the resort took our breath away is an understatement.  You couldn’t even walk to the pool outside our window without walking through a cave that had the cutest turtles swimming in it.  Each day we would find the tiniest turtle, which we named Veil and each evening we would say good night to the tiny turtle.

Our kids in true Alaskan fashion closed out the beach.  We had to grab our stuff and start walking away to finally get our 5-pack out of the warm 8 pm water.  They eventually met up with us on the trail back to the hotel.

The water park did not disappoint and we all knew that it would be impossible to peel Kyrene out of the slide that took us under the water with the sharks.  When we couldn’t find Ky…we all knew where she was.  Ky was in heaven, the animal whisperer…I have heard countless times since we have returned that she is going to be a marine biologist.

Ya’el showed us all up and went on the scariest slides before her older siblings…yes…before Cayden, Ezrah and yes even me…actually boo deciding to do the slides I swore off, made me face my own fears and scream my way into the abyss.  Ya’el also showed me how much of a sweet tooth she has thanks to the buffet and the endless amounts of sugar she shoved in her face.

The lazy river was our favorite ride and the one we started and ended our days doing.  It would be the only ride tiny Veil was approved to do with the whole family.

I didn’t know I could squeal and laugh like a teenager again with my 16-year-old son as we tackled rides like the surge or the drop.  Cayden became the 3rd parent and often gave Richard and I the chance to go to rides together like 2 teenagers.  I hope that Veil can look at these pictures of her and her brother and see how special it is to spend time with him as his years at home are quickly passing by.

I forgot how touching it is to see my 5 pack inseparable, a unit, playing, laughing, and loving each other

The Bahamian sun is intense and we went through so much sunscreen that we had to buy more…2 bottles of spray sunscreen were $68, and I laughed out loud when the cashier told me the price…Harneys didn’t waste a drop!

Finding shells and snorkeling with the fish was our most peaceful morning spent on the beach while we waited for the water park to open.  We got to meet with locals on each beach trip.  We tried fresh coconut, got our hair braided found out how incredibly salty the Bahamian sea is to our eyes!

Our playtime with the dolphins was an encounter, not one single Harney will ever forget.  Did you know that Dolphins are good at giving high fives?

As our quick 5 day stay at the resort was coming to an end, I saw the sadness start to creep in.  We had been spending each day to the fullest.  I would reluctantly set my alarm each night to ensure we didn’t sleep the sun away.

On our last night I  walked close to my daughter who has become a woman overnight.  I asked her how she was processing the trip.

Thankful we had someone come and help us process as a family before we left, the significance and magnitude of this trip.  It gave us language, so that when we found ourselves in moments that cause big emotions, we had words that one another could understand.

My daughter’s words shocked me.

“Mom, I feel like this trip wasn’t just for me…it was really for you and Dad”

“Um…ok…can you explain”

“Well, you and Dad had to deal with a sick baby, you guys were the ones stressed out with trying to keep me healthy, trying to be in the hospital with me and take care of my siblings…I can’t imagine what that would be like”

Kids are so resilient.  I am constantly in awe of how kids persevere and face hard things.

Ezrah, when she looks back at the hard, she is thinking about others, her parents, and not how hard her journey was.  She has told me since “It was all that I knew – I didn’t know a different way”.

Some of the hardest seasons, I wrote about here on our family blog.  I couldn’t see the light at the end of the tunnel.

Some of those really hard seasons…I worried they would scar her heart, just like the scar across her stomach that reminds us of the quick action the Seattle Children’s surgeon took.

Today, so many parents like us with children with Cystic Fibrosis are facing a future that looks very different than the one they said would make us “stand over their grave” .

Ezrah’s recently had appointments with her team and they had tears in their eyes as they sat across from a young woman who now runs her doctor appointment, while I sit back.  She gives a thorough explanation of her health and brings up her things to discuss with her team.  She has become her own advocate.  

Ezrah is thinking about college and seriously hopes she can get a scholarship to play ball.  

I never knew that when I wished…when I dared to have faith that God could take my daughter’s story which started in fear and tears, He would turn it into miracles and wonders.

Ezrah’s fatal disease still has no cure.  TRIKAFTA has not been approved for all gene mutations of Cystic Fibrosis.  Ezrah has the most common genetic mutation.  We know someone who had to stop taking this life-saving medication because the side effects were too extreme.  Ezrah is monitored regularly to make sure the side effects don’t cause any damage.

We are rejoicing in the gift that TRIKAFTA has given our girl this last year and can’t wait to see what other parts of her story will change as time goes on.  We are going to continue to rejoice in this year and half of health!

We so many times said out loud “Thank you Make A Wish” on our trip as we got to experience things we would have never been able to do.  

We are the recipients of a blessing because people care about children who have to face fatal and chronic illnesses. Ezrah may not remember all of the hard parts of her disease, but I do hope that she remembers how incredibly resilient she has been through this all.

Because of people and their generosity and love for others, Make A Wish happens for so many families. This trip was a blessing to us that a small blog post will never fully be able to convey.  But I hope that you can sense what we all felt and still feel today

GRATITUDE

The First

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William Cayden Harney

I recently heard of a new little soul growing inside a soon to be family of 3.  

“The First”…it’s not overly hyped up.

“The First”…it’s going to break you even when you try your absolute hardest to not break.

“The First”…it’s going to forever reframe how you look at everything else that comes after.

“The First”…it’s going to show you what healing can only come when you face your fears.

Whether you are having your first baby, your first day of highschool in a new city, going on your first date, trying to sleep the night before your first job, after graduating college or it’s your first day of retirement.  

“Firsts” are a super big deal…right?

In 16 years Cayden, you and I have faced SO many “firsts”together.

No one was more shocked than me to see the double pink lines that hot Arizonan July morning.  We were going to a pizza place that our friend Dani worked at.  It was our weekly “family” gathering with our college friends.  There would be adult drinks there…and your mom was use to having a good time being a young 23 yr old…

Those lines propelled me into a never-ending series of me facing my “first” as a mother.

I recently returned from a concert in Seattle and when I was telling you about it, a memory flashed before me, of me sitting at the computer, playing a Matisyahu CD, with big headphones stretched over my belly and feeling you respond to the music.

I was in constant awe of the miracle I was witnessing, growing inside of me.

That hasn’t changed in 16 years.

Recently someone mentioned seeing you and they were as speechless as I was at the man-child, your father and I are trying to continue to raise. In these rapidly face few years left with you at home.

There are times you startle me because I forget there is another man living in my home and not the little 7 year old boy that would dress in camo from head to toe.  You wanted to be just like your favorite Duck Commanders.

The girls laughed at me when I was in the passenger seat of our Burb and you climbed in the drivers seat…I had reached out to grab “who I thought” was your dad and was surprised to find you there in the drivers seat…

Cayden…I am in another season of facing my firsts with you.

Raising a man.

Some thoughts I have gathered in the 16 years of getting to be your momma…

I am amazed at how much of your personality was being lived out in your early years.

You were a child of few words.  Serious by nature and would come alive when we were outside playing. Those are descriptions I would use to describe you now.  Growing up in Alaska has been your greatest playground.

I can see how being an older sibling of a child with cystic fibrosis has impacted how you view the world and how it “should” act to those in need, who are marginalized and those who need compassion.  I will never forget you wanting to buytennis shoes for a fellow classmate in elementary school because the kid was being picked on for their ratty shoes.

I should have realized that when I was training a 9 year old to run his first ½ marathon, that it was going to reveal the grit, determination and endurance that was formed in you by our Creator.  I am still trying to learn how to differentiate when I am being asked to be a “wrestler’s” momma.  Your perseverance in competitions is so fun to watch.

I would often be surprised at the “grown-up” conversations we would have when you were a child.  Having your Sunday school teacher tell me that you were struggling understanding the Trinity of God at the age of 7, still makes me laugh today.  I love getting to sit and talk to you about adult things and hear how much you understand of the world and those around you.

These next 2 years are not for the faint of heart.  I have had a few mommas prepare me for the next of “firsts” I will be going through as you enter into adulthood even more.

Just 2 more years of high-school, the reality that you have a big wide world out there of “firsts” waiting for you is staring me in the face

My prayer is that you will remember how you were Created by God, who loves you and knows you more than me.  He has given you what you need to face this world, and what you don’t have, He will always give you when you lean on Him.

William Cayden Harney,

God has given you a love of the outdoors, because it’s there that He wants to connect with you. People are safe, protected and advocated for, when they are in your circle.  I can’t wait to see how God is going to continue to put you in places of leadership and responsibility.  Caring for those in need, is being the direct hands and feet of Jesus – don’t ever forget that.  

I can’t wait to see the things you are going to go for and I get to be your biggest fan as you stretch the limits, chose your hard, lean into the things that make you face yourself.

Thankful for my First time being a momma happened 16 years ago today

Happy Birthday Cayden  

Love you buddy

Hey Boo

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Dear Boo

Do you know how special you are? I have to ask because it is so rare for you to draw attention to yourself. You are one of the most capable new 9-year-olds that I know. Adults will tell me how grown up you are in your conversations. I watch peers look to you as a measure of what it means to be a “big kid”. Kids younger than you all know that you are safe and will treat them no differently than kids older than them. It doesn’t take me long to find you on a Sunday morning. I just need to find the trails of giggles and look for the new gymnastic competition you have set up. Your confidence makes me smile. You are who you are, you never make any excuses, I think you see the world in a different way, holding the balance of your youth with the maturity of your soul in a delicate dance.

Ya’el Ariel Ruth, you are 9 years old today!

You told me last night, it’s my last year in the single digits. You said it so matter of factly. I love it when you make statements with no emotions behind them. There is no need to make a fuss over something. You came into this world wide-eyed, calm, taking everything in, letting those brain cells process everything around you.

I have to remind myself that when we are getting ready to do anything as a family, you need me to give you the rundown. I use to get slightly irritated at the list of questions you will grill me with. But then I realized, it’s because you have kept track of all the unique needs of the family and you want to make sure I haven’t forgotten what they might need. You are the first to be ready, packed, and then follow me around the house making sure I don’t forget anything.

When there is an outburst from a family member, I will quickly find you next to me, whispering to me what that person needs to understand or how to diffuse the situation. You have studied each family member. You know ways to calm people down, how to make them laugh when they are sad, how to serve them when they need care, how to comfort them with touch when they don’t have the self-awareness that they need physical touch.

Your wit keeps me on my toes. I am surprised at the upper-level jokes that your brain gets. How you can watch a movie and understand what is happening that will sometimes go over your sister’s head. Your ability to laugh at sarcasm makes your daddy love you so much. You don’t dish it out, but you laugh and smile back when it’s given.

I have learned to let small things go. You came into a family that was in utter chaos. Your daddy was working a new role in his job, I was finishing my 1st year of my master’s program, while serving at the church. Your siblings were 2,4, & 6. We didn’t know the meaning of a slow pace…hmmm…we still don’t.

Your go-with-the-flow attitude was such a gift to me. I will never forget the day I loaded you up in the mobi and walked your siblings to McDonald’s for ice cream on a beautiful summer day because they needed to be outside and I had to suck it up. Your chill little soul let me pack you up and take you to so many places I didn’t think I could handle, yet had to because your siblings needed it.

Ya’el, your daddy dreamed of having a little baby girl with big dark brown eyes and dark hair, a little girl that would look just like your momma. We laughed in awe of God’s perfect design as we studied the curly black hair you had and found quickly that we could get lost in your big brown eyes.

There is always a look of love in them.

I love hearing from your teachers that they wish they had 20 Ya’el’s in their classroom. Because I know exactly what they mean when they say it.

I love it when you get tired of people saying your name wrong, so you go up to them quietly and say “You can call me boo” (so they don’t feel any embarrassment at their failed attempts)

I love it when we have to clean up a conversation quickly when you mention your best friend is a 43 yr old male…ha! Yay for Uncle Bri Bri

I love it when you pack an extra treat or drink for your little sister when she swears up and down she doesn’t need it, mainly because she doesn’t want to pack it…just for you to pull it out for her when she is in meltdown mode.

I love it that you tried out for the talent show at school because you realized “I figured it was a good way to get over my stage fright”

I love that when you show up late for a soccer game…yeah, I am sorry Boo, indoor soccer season with 4 other Harneys with 4 other soccer schedules sometimes gives you the shaft…I love that your whole team cheers and tells the coach to get you in ASAP.

I love that we can be in a public place and you will see a classmate from school and you will shout out their name and say hi…I wonder how many times I don’t say hi because I don’t feel brave enough to.

I love that when we got to the outlook of our hike yesterday and everyone else wanted to get down from the mountain for their special post-hike treat that you stood there and said “Can we just stay here and enjoy the view for a moment?”.

Ya’el Ariel Ruth – what a treasure you are to us all. The name you were given from your Naani, it has such a prophetic telling of your story. She prayed over you like she has done with every Harney baby, but this was different. She sought God, she asked Him, “who” you would be.

And this is what He told her.

Ya’el: God’s strength

Ariel: Lion of God

Ruth: compassionate friend

Sweet Boo – your ability to stand in chaos and speak peace is the strength of God. Your quick intuition to care for those who need help makes you a protector, a lion of God. Your gentle heart leads you to always think of others, making you such a compassionate friend.

Boo, we sure don’t deserve you, but wow are we thankful God gave you to us!!!

Happy birthday my 9-year-old. Now to get ready for the birthday hike you requested for your special day

The one I love…

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I have experienced often over the last few years people wanting to know exactly what I do.

Saying “I am a spiritual director”, causes a lot of confusion, perplexed looks, and thoughts stirring…watching and waiting to see if they will ask clarifying questions usually happens.

Over the last few years, I have had the immense privilege of sitting with people as they process past, present, and future events in their lives.  Past events full of pain or questions so often get stuffed down in the moment and then we rarely take the time to unpack things.  Current events that challenge our internal and external lives, we can run to coping mechanisms to numb the pain…how is your jammed-packed schedule…have you ever asked “Do I busy myself to avoid what is going on inside of me?”.  Future events, and wondering what will happen, bring enough anxiety to paralyze us when we don’t wait to reflect that God is the author and perfecter of our faith, of our stories.

I once had a teacher say that spiritual direction is “watching the one I love, love another”.

I couldn’t hold that statement when I first heard it.

My own story, my own pain, my misplaced feelings of worth, my worry that I would always be overlooked, they challenged this simple statement, “Watching the one I love, love another”.

Would God run out of love by the time He got to me?

But then God through His kindness began to invite me to face my trauma.  To let Him gently grab the boxes on the shelves of my soul and bring them to the ground so we could open them…

How did He do that?

He gave me a spiritual director to help me unpack the past, present and future parts of my story.

Then He began to send me people who needed a spiritual director, people who had walked similar paths that I did and needed someone who could empathize, listen & more importantly look for where God was/is/will be in their stories.

He began to heal me and He showed me how He was in their stories, just like He has been and will continue to be in mine, fulfilling His promise “Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; he will neither fail you nor abandon you” – Deuteronomy 31:8

Maybe you are like me, maybe it is hard to understand experiencing love by watching someone you love, love another, maybe you have asked, will there be enough love left over for me?…

I realized the other day that I was going to have to make sure a tradition took place this year, a tradition that I haven’t had to prepare, plan and implement over the 15 years of being a mom.

Egg dying

Every year my momma has bought, boiled, cooled, and brought everything known to man to decorate Easter eggs for my babies. Working in the ministry field, often Holy Week is a busy one, which means that the days leading up to Easter are packed with making sure people have moments to reflect on the greatest example of Love being displayed.

This year my momma is in Oregon, visiting her Ocho, my Squish, my niece.  She is busy taking her on many adventures.  She spent Palm Sunday with her, they have explored the zoo, eaten their way through Portland, and more importantly will be dying eggs together.

And you know what?

My heart is overflowing.

Why?

Because my Squish is getting to experience extravagant love from her Naani. She is finding out what it is like to hear my mom giggle when little fingers drop eggs in the bowl too quick and crack the shell. She is going to laugh when Squish debates trying the dyed water or when she spills it. She will bring out the worst candy known to mankind, peeps, and let Squish eat them until she is full.

I am thankful I have been able to experience the one I love, loving others.  As I sit and listen to stories that leave me with tears of sadness and healing.  As I get to ask questions, given to me by the Spirit of God alive in me, that lead them to the gentle awareness that God’s fingerprints are all over their stories.  As I ask and get to pray and hold them up to the God that gave up everything for them and me.  I am experiencing the love of the Father.

Tomorrow we will be celebrating the resurrection of our Savior.

“I was once lost, but now I am found

I was blind, but now I see”

I am sitting here amazed that I have gotten to know what healing feels like, and looks like and yes still am waiting to experience it in other areas of my life.

But guess what?

As I get to watch the one I love, love another, my hope is renewed.  My heart is made glad.

Just like I get to smile and laugh at each picture and video my mom is sending me of her and Squish, I can’t wait to experience that Love tomorrow and the days to come. 

I keep hearing God whisper “Do you want to get well?”

Do you want to experience healing?  Do you want God to resurrect areas in your life that you thought was dead?  Do you need emotional, relational, physical, and spiritual healing?

Are you going to Jehovah Rapha, The God Who Heals?

Tomorrow we will celebrate the Savior that defeated death and the grave and in return gives abundant life to all who call on Him, “But everyone who calls on the name of the Lord will be saved” – Acts 2:21

Do you want to get well?

Do you want to know what extravagant love is like?

Do you want to know what it is like to get JOY watching God love others?

Run to the throne room tomorrow

“So let us come boldly to the throne of our gracious God. There we will receive his mercy, and we will find grace to help us when we need it most” – Hebrews 4:16

Don’t worry Mom…Richard is on his way to Walmart to get the egg dye…

We love and miss you, fill up Squish’s love cup in the ways you have done time and time again with the Harney 5 pack. Thanks for being a tangible example of God’s love for His children

Need a place to go tomorrow? Join us

376 Old Homestead Rd  or watch LIVE on stacalaska.net

9:30 – family pics and brunch

10:30 – service

12:30 – egg hunt

I will leave you with our family pics that our church does every year! One of my must do traditions ❤️

Sunday is coming!!!

oh my Ez

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Today snuck up on me

I was walking the dog, feeling the fall breeze hit my face that made my eyes water a little, when I realized something.

Ezrah May, today is a really big day!

We have been anxious for almost a year when we knew you were leaving behind your safe little bubble at your Elementary School. For 8 years you were around the same faces, countless people took trainings so they could administer your medications at school. Teachers became backup health aides and chose to be another advocate for you, sending sick kids home and increasing hand hygiene in their classes. Students would volunteer discreetly to move away from you in the classroom when they knew they weren’t feeling well. The office ladies got so many phone calls from your momma telling them you would be late to school because the burden of therapies had gotten the best of you that day.

And here you are, entering into the Middle School world. No longer will you have just one teacher and one class to adapt to your various needs that Cystic Fibrosis can bring. Now you will be spending your time around kids that don’t know anything about your fatal disease. Now you have a TON of educators and staff that had to sit in an hour-long meeting with me to discuss what it means for you to be in middle school.

My heart began to race as all this hit me this morning. The not faint memory of holding you in my arms with the dark early morning sky, listening to the machines beep, trying to not move you because I didn’t want to have to ask yet another nurse to come and help me with all your hoses and wires. It was just you, me, and the Comforter. The cries of a mother, the fervent prayers that life would be abundant for you even with the scary words Cystic Fibrosis. I would look you over from head to toe. I would study the curl of your hair, your little tiny fingernails, your soft little tummy covered with a massive incision from your life-saving surgery. I didn’t want to miss a single detail of your precious life.

It was there that I began to understand what it meant that you were not mine.  You were and are God’s child.

It was there that God began to invite me into the beautiful, scary, heart-wrenching and faith-building dance of being your momma.

“you will stand over her grave”….words that echoed in the silence, no amount of loud machines could drown it out.

Please let me see her first steps…

Please let her go to school one day…

Please let her play soccer, the sport that brought her parents together…

Please let her grow strong and big…

Please let her have friends that won’t be scared of Cystic Fibrosis…

Please, God, please breathe abundant life in her…

During my walk this morning God gave me the memory of you the night before your first day of preschool.  I was a freaking mess.  I don’t know how your dad and siblings survived me that week, really. 

You had insisted on wearing new boots that you had gotten for school before school started.  They ended up getting covered in mud because you couldn’t wait to wear them.  So, there was your dad washing your boots for you the night before school so you would have shiny new shoes again.

Sweet girl, do you know what you did last night?

You came to me at 9:30 pm with soaking wet white shoes and asked how you could dry them in time for school today because you had refused to wait and save them for the first day of school and got them dirty…even though I told you.

That memory flooded my vision as I passed your old elementary school and then I heard a little whisper.

“Sarah, its because she grabs hold of life and doesn’t take it for granted, she is fearfully and wonderfully made”

Ezrah May, no truer words have ever been spoken over you. God gave you the tenacity you would need to embrace each day like it’s the last one. Often, I worry about your inability to wait or reign it in sometimes. You want to feel it all, taste it all, breathe it all in. You don’t want to be told what something is like, you want to know it for yourself.

To my miracle girl, I am smiling and tearing up at the same time, seeing how God has been faithful. How He met a scared 25 yr old momma on the Giraffe wing at Seattle Children’s and heard her cries for you.

I am proud of you and you know what, I am still proud of you even if you make mistakes today, if you stubbornly don’t take your pills today because you are embarrassed and don’t want to explain what you are doing at lunchtime.  I am proud of you even if you shrink back and fight tears when you realize you are going to miss school because you have a nasty lung infection down the road this year.  I am proud of you for the choices you are going to have to make this year as you figure out having a new support system, and how to handle the large amounts of new germs and bugs.

You know why? 

Because you are grabbing hold of today and not worrying about tomorrow. You have been fearfully and wonderfully made. You are so loved by God. And baby girl, God has some big plans for you. I know there are some hard parts, waking up at 5:30 am so you can have your treatments done in time for a new early school start is hard, but you have got this. God has blessed you with abundant life…it’s a pretty good life isn’t it Ez?

Love you sweet girl, wow, love you sweet young woman