I have so so so much to write about, you know me, love to capture the special moments, the changes in our lives and events that shape and mold our precious little family.  But as I sat down to write after unpacking half of our things I realized the direction of this blog is already being refined by the one who I am leaning on to guide all my wonderings of life.

Am I grateful to be back to the rock?…um…if I have to be transparent…no…

It’s not that I dislike the constant rain, walmart being the only place to shop, the ridiculous rise in grocery prices or the fact that there is little to do with your kids here, but it is the fact that I have struggled for a long time wondering if Ketchikan is our forever home.  If our family is being called to live somewhere else and we are missing the signs.

Peace to call Ketchikan home is a tug and pull that I experience every-time I live life outside of the limitations of the salmon capital of Alaska.

I grumbled with God quite a few times on our Seattle trip.  As the constant curve balls kept coming and also when I saw pure joy on my children’s faces or I myself felt the rigidness of our confinement Ketchikan brings start to lose its grip with each day away from the rock.  We were beyond excited for this trip, we gave Ketch a big “peace out” as we boarded the plane that was being hailed with our liquid sunshine.  Thankfully a very sweet friend came and grabbed us, stuffed her call full of all our luggage and necessities a family of 6 would need for two wks and drove us over avoiding the wonderful weather.  If you had asked us, we were pretty jazzed to leave, we couldn’t wait to take a break from responsibilities.  The trip started out with love offerings showing up a day or hours before we left.  People wanting to make sure we did fun things in-between Ezzy’s big surgery and all the doctors appointments.  With such a great send off, we didn’t expect to be challenged to keep peace within our hearts and cling to the joy that we had.

Our first day of travel consisted of our little man running a sudden fever and telling us his throat hurt.  It was so bad that he fell asleep sitting up outside of baggage claim as Richard tried very hard to keep his calm when we were informed our rental van reservation was moved to another company that was based out of downtown with no shuttle service.  It was a nightmare.  We apparently flew down the same weekend of UofW graduations as well as the other smaller private universities and also the U.S. open, oh yeah and the Rock and Roll 1/2 and full marathon.  There was no back up option.  So as we split to say goodbye, me with the sick fever stricken boy and nursing baby, Richard headed off with the 2 big girls in a taxi the other direction.  I needed water, badly, Ya’el had nursed non stop and I was stuck outside with all our luggage.  I begged Cayden to be a big man and let me run inside, yes run, because the vending machine I saw was a distance away.  He agreed with tears on the edge of his eyes.  I ran with the baby strapped to my back.  Just as luck would have the machine was broken and wouldn’t take my paper money.  Either the older gentleman behind me fell in love with my little bambino on my back or saw the frustration and desperation and stepped in and bought me water with his plastic money.  I smiled, thanked him and shouted why I was running the other direction, he smiled nodded his head and waved me on.

The rental van situation got even better when the husband and starving overheated girls showed up explaining we were in possession of a H.U.G.E. van.  Yup, the Harney’s were now driving around Seattle in a 12 passenger van. Not ideal

Even though our first hours in Seattle started with the realization we had a very sick little boy and a gas gussling vehicle we shrugged it off and told ourselves we were still blessed.  The holy spirit was faithful to keep our eyes on what mattered.

Antibiotics were soon prescribed to our little man and we prayed out of faith that was being taunted by fear that Ezzy would soon be sick and unable to do surgery.

Ezzy’s preop appointment went well and we managed to have enough time to stop by the expo put on by the 1/2 marathon I was running in 12 hours.  I am still in awe of the care they provided for all the participants.  I received a free chiropractic adjustment, my sore ankle was set in place,  deep tissue massage around my “runner’s knee” and kinesio tape on my tight Achilles and tender soon to be planter fasciitis.  So if you haven’t figured out from my list of aliments, training is intense and requires dedication and the ability to just keep moving.  I was nursing these lovely battle wounds with constant observation and awareness making sure I wasn’t going to do long term damage.  I left the expo feeling amazing but also thankful we had a huge van even though it made us look like the duggars as each kid filed out as we got to each destination.

That van ended up being a blessing the morning of the race, since we had to be there a minimum of 1.5 hrs before the race due to freeway closures.  The kids had a row to themselves to spread out and sleep or watch something on their ipad as mommy and all the other racers readied themselves for the moment we had all been pushing our bodies for.  I am going to write about the race in a future post. Lots of things happened, revelations, healing in a sense.

The day before surgery happened to be a Sunday.  Richard and I were determined to find a house of worship.  With a little research, little man and I found and C&MA church close by and we set out with excitement to be participants in a fellow sister church.  We were met with such hospitality and genuine love it took us back by surprise.  Everyone was enamored with our “large” family and had to come and meet us.  Worship was amazing, Richard and I were lost in it, the kids were in their best behavior mode.  We were fed immensely as the Word was delivered.  After the service ended we were approached and asked if we needed any help, meals, prayers, anything after they learned why we were in Seattle.  We were handed contact info if we needed someone to call.  Talk about being the bride of Christ.  North Seattle Alliance Church, you have a place in our hearts and we look forward to future fellowship with you!

With some restored hope that God was in the details we searched for some fun before surgery.  With less then 12 hours to spare we noticed a rash on Ezzy.  We wondered if it was contact dermititis from something on the trip, was it scarlet fever from brother sharing his strep throat?  After speaking with the oncall doctor we were told to still show up the next morning and a plan would be made.  Fear set in…frustrating how I let that take up residence so quickly

 Prayer as a family took place, we did what we know to do…

The next morning came with the fact that Ezzy got worse and was now covered in a rash from her chin down to her toes, stretching to her finger tips.  With reluctance we braced ourselves for the inevitable.  After being examined by infectious disease, a resident, two doctors, various nurses.  The 3 hour wait Ezzy and I exerienced in a small little room came to an end.  If I hadn’t found a moment to be humbled yet, it came when Ezzy asked me to pray with her.  We prayed holding each other, asked God to help the doctors make a decision and for us to be brave, to be OK with the decision.  The talk of bravery came a few hours before as we were driving to the hospital for surgery.  Out of no where we heard weeping that soon turned to sobbing as our brave little warrior finally let her walls down.  In-between the sobs she was able to articulate “I…dont…want…surgery”.  Our hearts sank, Richard and I realized we had been processing everything with each other, leaving her out of the equation.  Horrible parents…we had failed her

After quickly calling out to God, I found the words come out of my mouth with an awareness that I was not leaning on my own understandings, the Holy spirit came and was meeting the 6 souls that were driving on I-5 south.  Especially the terrified little girl being asking to be brave beyond her limits.

My little warrior asked after we prayed in the small pre-op room if we could sing “king is Among us” her absolute favorite worship song.  You know you are a ministry kid when your favorite songs are about “fire falling” or “shekinah glory”.

Ezzy came out of surgery in an immense level of pain.  I felt helpless, I watched them administer two rounds of morphine.  The alligator tears weren’t fading.  We couldn’t have Candy in the post-op area since there were so many other kids.  I reached for my phone and opened up the app that contains 1000+ pics…I know, it drives Richard insane how many pics I have.  She laid there, looking through the pics, allowed another round of morphine kick in and soon was sharing the photos of her family with her two nurses.  My battery was drained in those 30 minutes, but was such a blessing.  See Richard, I DO need all those pics!  Richard was equipped with enough patience to handle the nursing baby, the now fever stricken 3 yr old and the recovering brother the entire surgery day.  We do not doubt it was because so many specific prayers were going up on our family’s behalf.

After finally being cleared to go home and not being admitted like was planned, we headed to the hotel to rest.  We had been prepared for the bleeding, the need to be still and rest.  We however were not prepared for the level of pain she would experience.

Our always hungry, great eater of a child soon disappeared before our eyes. It is really hard taking care of a child that needs a specific diet in a hotel.  Thanks again to some giving hearts we were able to go and stock up on all her special foods while still being able to feed the rest of our family.  So, if you don’t live in a large family, then in might be hard to understand.  But our family’s biggest expense is FOOD.  Not clothes, toiletries, etc, but food.  It costs around $60 dollars to feed our family at restaurant and that is norm.  Even if we share plates, or order appetizers, or do kid meals, no drinks of course.  Those of you who wanted to help, I need to tell you, you DID.

Kyre was seen by the ENT and it was determined after her hearing test that she has “robot ears”.  She hears some sounds that most people have a hard time hearing…so yes, we just have an obstinate child.  An X-ray of her head also took place, revealing her adenoids are just as enlarged as Ezzy’s were.  It was decided she is going to start a month of antibiotic nasal spray to address the bacteria that hasn’t been responding well to oral antibiotics. Kyre will also have a daily steroid spray.  They did discuss surgery, but we told them we would discuss that in a few months.  A dairy free diet was encouraged to continue since we did see some positive changes.  We were blessed by the efficiency that was given towards a plan of care for our kiddo. Ezzy was so kind to her little sister that was thrown into an unknown situation.  There was no jealousy that Kyre was now having the intention.  Instead, just contentment that Ezzy was no longer the odd one at.  It hit me that she needed to walk along side Kyre when I overheard her say “look Kyre, we match” as they both sported their hospital ID bracelets.

We were able to reschedule an appointment allowing us to have two days in a row with no hospital visits.  The zoo was on the agenda for the first day per the orders of some friends that wanted the kids to go see all the animals.

 They had a blast!  The penguins stole the show at the zoo.

 The next day we went to the aquarium thanks to some hearts that wanted our kids to have some more fun!  A souvenir shirt was what the kids requested from their day of exploring and we were so thankful to be able to provide them the chance to do this!  We saved their christmas money knowing we were going to be traveling for surgery.

After exploring the life in our vast oceans, we took the kids to Pike Place market and were stopped almost every few feet by people wanting to see this cute little girl holding the “smallest dog ever seen”.  Candy provided opportunities for us to share our faith as we explained ezzys need of a therapy dog.  The kids picked out their own fresh cherries and we took them on a few mile walk to the big splash pad we saw the day of my race.  It was just what we needed after spending the last 4 hrs walking through the aquarium, market and streets of Seattle.  We didn’t care if we were the ONLY adults running through the water with the kids.

 It was such a special memory I will hold as Ezzy asked me to run with her through the water.  I have to fight my practical serious side a lot when raising my babies.  When it comes to Ezzy especially, I need to lay aside my silly notions and just LIVE. I don’t want a single regret with her

After 6 hrs of hauling the kids around, we headed back to hotel and was met by an old friend.

 She showed up with fresh, whole food type of meals.  After a week of heavily processed foods or eating at restaurants the Harney tummies needed a big break.  My friend was so thoughtful and kind to think about what we would need.  After a few hours of catching up and being always reminded why she is in my life, we said our goodbyes and knew that the next time we would see each other we would pick up where we left off.  She stocked our mini fridge full of meals and also assured us that every need of ours was being tenderly cared for by our abba father.

Kyre and I sadly got hit with a tummy bug and spent most of Saturday wishing we could be put out of our misery.  After asking for some prayer, we woke the next day on the mend and ready to go back to the church we had visited last week.  I was so concerned my tired kids from traveling would not cooperate.  They colored, loudly, it seemed to me.  I was caught off guard when someone turned around and looked at them…oh great…they are bothering people.  Soon a little note was passed to Cayden, he read it, smiled at the giver and he went back to drawing his picture.

 If you folks every find yourselves in north Seattle on a Sunday, you should visit this church!  They really believe, follow and practice their mission. After talking with some families and exchanging info for the next time we find ourselves in need of fellowship, we entered into a God designed conversation with the worship leader.  Richard had started talking with him while I talked with some other people.  After we were introduced we had one of the most intense, honest, transparent, uplifting conversation about the call to ministry.  I am still so thankful the worship leader took time to minister to me, someone just passing through his congregation.  We exchanged info, Richard and I thanked him for his heart and encouragement and we left feeling like we were leaving pieces of our hearts with this hidden gem in Seattle.

Thanks to my husband’s desire to always explore and try new things, unlike his boring wife who likes familiarity and routine.  We spent the next few days visiting splash pads, parks, playgrounds and interesting routes all over Seattle.

 We laughed, talked, shared our hearts as we had each others undivided attention during impromptu naps while driving.  By the way, all you city life parents…we judged you.  We are S.O.R.R.Y. It was hard to understand why we would see families just arriving for dinner when we were leaving stuffed and heading back to the hotel for bed.  By the end of this trip, we totally understood why.  Our average dinner time was taking place around 7/7:30.

 Thanks to the adventures we would go on and then needing to drive a distance to get dinner.  That I have to admit, I won’t miss.  I prefer eating dinner quite a few hours before bedtime, not just an hour or so.

Our last full day in Seattle was spent at the hospital, Ezzy was sick, we knew it and quite frankly we were relieved she was going to be seen by her team of specialists.  We were informed after her vitals were taken she lost weight, never a good thing.  After her lung function test it was apparent her lung function also went down as well.  Ezzy is starting a month of antibiotics to try and kick this nasty cough.  It is a bad one too, she is having coughing fits that stop her cold in her tracks as she coughs up thick gunk.  I honestly haven’t seen a cough this bad.  Ezzy the warrior could use lots of prayer right now.

The tests that needed to happen for Kyre didn’t happen so she is going to be going back down for a follow up with the ENT in sept and going to get her testing done then.

We arrived last night and were met by two dear friends who decided to leave work early for us and  help us caravan our stuff home.  Another friend showed up shortly after with a fresh homemade dairy free dinner.  As we walked through our home, opened the fridge and read the note on our table surrounded by groceries, we realized we had been taken care of yet again.  Our home had been cleaned, dirty laundry that was left was now folded and groceries were left to try and make our transition back home better.

Do you know what a hedge of protection is? I heard the term growing up in a ministry family.  It wasn’t something I fully understood until I witnessed it in my teen years when I could comprehend the supernatural things that had taken place.  Well, it is a term that now something Richard and I talk about a lot these days.  I only wrote on a few of the bigger moments on this trip that were undeniably orchestrated by our Maker.  I don’t want to down play what happened for our family.  God took great strides to show me that we are loved and seen.  He also wanted us to know that every step of the way, he had already gone ahead and taken care of us.  We started our days out together in prayer as a family and we asked for his presence to be with us.  We ended our days thanking him for taking care of us.  As we took the kids to do things that are very costly we shared with them how people who know us wanted to bless us and provide ways for us to do fun things as a family.

 This trip provided a chance for Cayden and I to discuss what it meant to love the “least of these” as he witnessed homelessness for the first time in his life.  His eyes and tender heart were exposed to sick kids and children who are trapped in an outer shell that leaves them completely dependent on their caretakers 24/7.  Through it all, relying on the Holy spirit to help me navigate through conversations that mold his empathy was a critical.  How Cayden processed the many people that were different from him due to choices, pain, God’s design or the unknown is something I hope and pray God filtered them for him.

We are home, accepting this is where God wants us to be and trusting his plan.  Ezzy definitely could use lots of prayers for healing.  She is going down hill.  We lost her prescription, but thankfully just found it this evening. So tomorrow we will start her antibiotics.  She is tired and is in pain from coughing since her throat is still very tender from surgery.  Again I am resting in his promise that he holds her every breath.  To trust in his hedge of protection.

We have been on the countdown for the last week now.  If you have spent your entire life on a small island with 30 miles of paved road then you can understand why leaving on a jet plane is so appealing.  Even though our soon to be trip isn’t one that rooted from a spontaneous dream to live life in the real world, we are trying to take lemons and make some strawberry lemonade, haha

The first mention of this trip happened in January of this year.  The fact that it would require a two week duration is the reason why we are just now acting on the conversation that took place so many months ago.  Since Ya’el still takes 80% of her nourishment from me, made the situation even harder.  Richard was floored when he was informed the trip required so many days of the PTO that we tend to hold on to for emergencies.  The very type of emergencies that warranted a 10 day hospital stay last month.  We rarely get to cash in PTO and rarely is it ever used for FUN, primarily it all belongs to CF…

So, yes our trip is yet another medical trip, but this time Ezzy gets the pleasure of being accompanied by ALL her family

and not just mean old dad as she says.

 To say she was excited couldn’t even cover what her little heart was wanting to emote.  Ezzy has spent these stressful trips for the last 5.5 years with just one parent typically.  Leaving no one to play with, watch cartoons with and laugh and just have a buddy or two in an environment filled with adults.  

Kyre is actually going to be seen by some specialists as well. Unfortunately being a carrier of the CF gene mutation has a negative impact as well.  After the last year and a bit of chronic ear and sinus infections, Kyre is going to be seen by the ENT at children’s as well as our CF team.  As research and knowledge is gained in the world of CF, it is becoming apparent and slowly accepted that some siblings that carry one CF mutated gene actually have chronic health issues similar to their siblings that carry two mutated CF genes (in case you haven’t figured it out, CF is a recessive disease, which means you have to have two copies of the mutated gene to produce CF). This is a new battle and chapter of CF for us, we are staying calm and not running to the what if game, but instead thankful that we already have a great relationship with Children’s and IF Kyre ends up needing consistent care, atleast we have an idea of how to handle it.

Our weeks are going to be spent going to Children’s hospital almost every other day due to the many appointments that Ezzy and Kyre have.  Ezzy will be having surgery on the 15th.  It is routine for many kids, but for her, it brings about more risks and also has to be monitored by her CF team.  After the results of the sleep study it was evident that surgery has to take place.  Painful is the term they used to describe watching Ezzy try to sleep.
 Apparently it is really bad when you stop breathing multiple times through out the night…The stress and long term damage that can take place on the lungs as well as the brain when sleep apnea is left untreated out weight the risk for our CFer.  We can’t fly for 1-2 weeks after surgery, since Ezzy’s risk of hemorrhaging is so high.  She has to lay low, no running, jumping, exuding unnecessary strain on the body is off limits.  Anytime anything is introduced in a CFers airway, it poses a risk of new bacteria making its home in the warm sticky environment found in Ezzy’s CF lungs.  Extreme caution will be taken and lots of prayer and trust that the awesome God bubble Ezzy has been in is what is holding her parents together.

Ezzy recently told me that she just wants to get this surgery over with. We have talked alot about what they are going to do.  Ezzy is just like her momma, needs plenty of time to process and chances to ask pesky questions and address fears that haunt the unknown.  I wish I could get inside her head and know that I am helping her cope with thisupcoming event.

 All I know is that I am extremely blessed that somehow everything aligned and we can all embark on this together.  I hope that we can all provide much needed distraction as we wait for surgery and then recover.

While we are down there I am going to run my second 1/2 marathon this summer. I am nervous as all get out.  Frustrated that my PR from my first 1/2 won’t be beat, but am trying to cling to some much needed truth a fellow competitive athlete shared with me as we talked at a church function, thank you friend!  I will be running in the Seattle Rock N Roll 1/2 marathon this saturday.  My ever supportive hubby encouraged me to look into running races every time I leave the rock!  He has put up with months of me training, being tired at night well before him and sometimes throwing a wrench in our already packed Saturdays.  Yet through it all, he has encouraged me, cheered me on, stashed water bottles along my routes and listened to me whine when the hard days got the better of me. I also have had some very sweet little girls that have handled hour long runs being pushed on the track in rain and sun as well as the scenic bike path that resulted in many times having mom yell “lean to the left, lean to the right!”

I wanted to write a quick blog…haha, are my blogs every quick?  I hope to let you all know what is going on in Ezzy’s next chapter of CF, the unexpected twist with Kyre, so that those of you who faithfully and kindly pray for our family would be armed with the details.  We need God to provide in some ways, its always frustrating when life throws punches, but we are clinging to God’s promise that he sees, knows and cares for our needs.  Since I am trying to maintain a positive attitude, I hope to maybe write a blog on how we survived on a shoe string budget this trip…hello restaurants that have kids’ eat free nights!

The Harneys leave this Thursday, Ezzy has her pre-op appt on Friday, 1/2 marathon Saturday and  then surgery Monday.   Followed by various doctor appts for the girls off and on.  Prayers for protection over the kids and Richard as they navigate through crowded downtown Seattle waiting on me to cross the finish, courage and peace for an anxious 5 yr old, harmony, love and joy as we go to Children’s Hospital when we would rather be doing something else, guidance over the surgeons’ hand, an unbreakable God bubble, wisdom for Kyre’s doctors and most of all speedy healing so we can have some fun as she recovers!  We hope that the 6 of us plus Candy the therapy puppy will survive sharing a hotel room for two weeks and make us an even closer family unit.  

Thank you so much for finding various ways to support team Ezzy, we thank God
for you all!

Today is kind of surreal…last year I was going to my ob appt on my due date, trying to maintain any shred of sanity that women tend to lose towards the end of pregnancy.  I was determined to not be induced and wanted desperately to have the chance to let her come on her own like Ezzy did.  After two other births requiring pitocin and other measures, waiting for our little/big surprise seemed reasonable.

Ya’el immediately had everyone wrapped around her little precious fingers within minutes of meeting her.  Cayden still to this day, wants to be there for it all.  Tries to convince me weekly that he “has it under control” with her.  Ezzy can’t help but giggle when the two of them embark on a game they created together and Kyre…well, as with most of the family members, Ya’el tolerates Kyre in small doses…sorry Kyre, my love you are an I.N.T.E.N.S.E. person.  

Richard finds so much joy when people say Ya’el looks just like her momma.  He prayed and prayed that if he was going to have to have ANOTHER girl, then at least would God make her his little native baby.  Well, with Ya’el’s dark hair, dark skin and the most beautiful chubby cheeks, its is safe to say God heard him loud and clear.

Our number four has been what you would call a sucker baby.  She was so easy going in the early infant stages.  She napped anywhere, waited her turn when chaos struck our home…who am I kidding, its always chaotic.  But she also saved little memory making moments for Richard and I in the late evenings when everyone was in bed and she had our undivided attention.

We were immensely blessed to have papa leonard and grandma debbie come and pray over her and give her a blessing after her birth.  It is really cool to witness what happens when someone goes to God and asks how to pray for a life.  What happens is you see that God will grant discernment and wisdom as faith is practiced.  There has been so much joy as we have watched her begin to live out what was prayed over her the day after God granted her her first breath.

I was terrified that Ya’el would be born in the summer, leaving me with 3 older kids wanting to be outside all the time.  But her easy going spirit really allowed for me to have the chance to cater to the big kids while she just tagged along.

When summer ended I had a baby that was becoming more then a blob, one that was fun to interact with and also had an unbreakable bond with daddy.  When he was around, his arms were where she wanted, demanded at times, to be.  Being in ministry on Sunday solidified the bond the two of them formed, since dad was it for her.

Thanks to her very healthy appetite, she even was kind enough to share and let mommy pump for two other babies after my morning workouts

and waited her turn or sometimes took measures into her own hands, haha

Ya’el has reached most of her milestones before the rest of her siblings.  Sitting up at 4 months old, crawling at 6 months, walking at 10 months, running at 11.5 months.  She is really fast, I have learned I can’t put her down and expect to find her in a radius of her first location.  

If you have the chance to be around her you will find out how playful she is.  She will look over her shoulder, yell at you and wait with a mischievous smile on her face for you to respond.  Standing outside the opened unoccupied bathroom door (a big no no in our house) is her best game to play.  After alerting us of the open door, she will wait until the last minute after seeing we are heading to close it and run into the bathroom giggling and squealing.   Her desire to make people laugh is rooted deep within her tiny little soul and we can’t help but smile when around her.

Ya’el is obsessed with shoes, of course the dirtiest shoes in the house are the most appealing.  She loves clothes and will turn anything into the newest fashion trend, even dad’s underwear can serve a purpose.

 What I love most about her, is that she loves to sing and participate with me in worship.  Listening to her sing with me will about complete your life, I’m not kidding.

Growing up with 3 older siblings keeps her wanting to be a part of everything they do…family communion, dress up, playing with the doll house, playdates at the beach, swinging at the park, boat rides…don’t hold her back!

Through her short time here on earth I am constantly reminded of how God’s ways and plans are bigger and better then what my human heart could ever dream of.  One day I can’t wait to share with Ya’el that her mommy and  daddy really didn’t expect her in our plans.  How we had given EVERYTHING away after big sister Kyre and moved on to the next chapter.  It was a blessing in a way to have to start over, because the anticipation about her arrival masked some of the unknown fears of her health.  Ya’el came at a time that our family needed some more heavenly interventions in our lives and a time that we needed our foundation to be secure with one another.  We needed more of God, more reasons to seek him first.  It is interesting how when you are willing to take a step back, you can see that God really knows what he is doing when he places people in your life.  Our souls learn to give and take, we make allowances for one another, we have more determination to talk with God as we pray for each other, we witness the hand of God in their lives, but more importantly we get a glimpse of the love our Father God has for us.

Ya’el Ariel Ruth, baby girl you are 1 yrs old today!  Thank you for showing us that we need to slow down and just laugh at things and to find moments to always praise God.  You have carved a permanent place in our hearts that only you can occupy.  Can’t wait to watch you grow into the might woman of God he is already shaping you to be!